Gatlinburg Conference 40 Annual On Research and Theory in Intellectual & Developmental Disabilities
40th Annual Gatlinburg Conference On Research and Theory in Intellectual & Developmental Disabilities The Loews Annapolis • Annapolis • Maryland March 7-9, 2007 This volume contains abstracts for invited talks, individual and symposia papers, and poster presentations at the 40th Annual Gatlinburg Conference on Research and Theory in Intellectual and Developmental Disabilities, held March 7-9, 2007, in Annapolis, Maryland. Permission to quote or reprint any of these materials must be obtained from the author(s). • EXECUTIVE COMMITTEE • Leonard Abbeduto, Conference Co-Chair University of Wisconsin–Madison Jennifer Hill Karrer University of Victoria Don Bailey University of North Carolina at Chapel Hill Connie Kasari University of California at Los Angeles John Borkowski Notre Dame University Mark Lewis University of Florida Frances Conners University of Alabama William MacLean University of Wyoming Francis Crinella University of California at Irvine Marsha Mailick Seltzer, Conference Co-Chair University of Wisconsin–Madison Sharon Duffy University of California at Riverside William McIlvane University of Massachusetts Medical School Elisabeth Dykens Vanderbilt University Richard Serna University of Massachusetts Medical School Deborah Fidler Colorado State University Wayne Silverman Johns Hopkins University School of Medicine Frank Floyd Georgia State University Steve Warren University of Kansas Susan Hepburn University of Colorado • THEME COMMITTEE • Frances Conners University of Alabama Jennifer Hill Karrer University of Victoria Elisabeth Dykens Vanderbilt University Wayne Silverman, Chair Johns Hopkins University School of Medicine Deborah Fidler Colorado State University • CONFERENCE COORDINATION • Teresa Palumbo – Conference Coordinator Waisman Center, University of Wisconsin-Madison Ernie Colantonio, AV Coordinator Waisman Center, University of Wisconsin-Madison • CONFERENCE SUPPORT• This conference is supported by grant number R13 HD38335 from the National Institute of Child Health and Human Development. Additional support provided through the generous donations of Brookes Publishing, Dr. Robert Littleton and Evergreen Center, Inc., and Dr. Michael Cataldo and the Kennedy Krieger Institute. 1 Ta b l e o f C o n t e n t s P R O G R A M AT A GLANCE ......................................................................................... 3 A W A R D R E C I P I E N T S ............................................................................................ 4 E X H I B I T O R S .............................................................................................................. 5 I N V I T E D P R E S E N T E R S....................................................................................... 6 D E T A I L E D C O N F E R E N C E P R O G R A M ........................................................ 8 WEDNESDAY P R E S E N T A T I O N S MORNING • Symposium 1 ................................................................................................................. 21 • Symposium 2 ................................................................................................................. 29 • Symposium 3 ................................................................................................................. 35 AFTERNOON • Symposium 4 ................................................................................................................. 40 • Symposium 5 ................................................................................................................. 45 • Symposium 6 ................................................................................................................. 50 EVENING • Poster Session 1 ............................................................................................................ 55 T H U R S D AY P R E S E N TAT I O N S MORNING • Symposium 7 ................................................................................................................. 82 • Symposium 8 ................................................................................................................. 87 • Symposium 9 ................................................................................................................. 92 AFTERNOON • Paper Session 1 ............................................................................................................. 98 • Paper Session 2 ............................................................................................................. 105 • Paper Session 3 ............................................................................................................. 112 EVENING • Poster Session 2 ............................................................................................................ 119 F R I D AY P R E S E N TAT I O N S MORNING • Symposium 10 ............................................................................................................... 145 • Symposium 11 ............................................................................................................... 151 • Symposium 12 ............................................................................................................... 156 A U T H O R I N D E X ................................................................................................. 162 2 2007 Gatlinburg Conference Program at a Glance TUESDAY, MARCH 6, 2007 5:00 - 7:00 P.M. REGISTRATION LOBBY FOYER WEDNESDAY, MARCH 7, 2007 7:30 - 8:45 A.M. REGISTRATION 8:45 - 10:15 A.M. SYMPOSIUM 2 SYMPOSIUM 1 SYMPOSIUM 3 BALLROOM B BALLROOM A BALLROOM C Opening Remarks: Marsha Mailick Seltzer, PhD & Len Abbeduto, PhD REGATTA BALLROOM ABC Plenary Session: Stephanie Sherman, PhD REGATTA BALLROOM ABC 10:30 - 10:45 A.M. 10:45 A.M. - 12:15 P.M. ATRIUM 1:15 - 2:45 P.M. SYMPOSIUM 4 BALLROOM A 4:45 P.M. - 6:00 P.M. NIH Workshop: The NIH Organization, Programs, & Grant Review REGATTA BALLROOM ABC 6:30 P.M. - 8:30 P.M. Poster Session 1 SYMPOSIUM 5 BALLROOM B SYMPOSIUM 6 BALLROOM C ATRIUM THURSDAY, MARCH 8, 2007 SYMPOSIUM 8 BALLROOM B 8:45 - 10:15 A.M. SYMPOSIUM 7 BALLROOM A 10:30 A.M. - 12:00 P.M. Plenary Session: Ira Lott, MD REGATTA BALLROOM ABC 1:15 - 2:45 P.M. Plenary Session: Jennifer Wishart, PhD REGATTA BALLROOM ABC 3:00 - 5:00 P.M. PAPER SESSION 1 BALLROOM A 5:15 P.M. - 6:15 P.M. PAPER SESSION 2 BALLROOM B Update on NIH Task Force on Down Syndrome 6:30 P.M. - 8:30 P.M. Poster Session 2 SYMPOSIUM 9 BALLROOM C PAPER SESSION 3 BALLROOM C REGATTA BALLROOM ABC ATRIUM FRIDAY, MARCH 9, 2007 8:45 - 10:15 A.M. SYMPOSIUM 10 BALLROOM A SYMPOSIUM 11 BALLROOM B SYMPOSIUM 12 BALLROOM C 10:30 A.M. - 12:00 P.M. Plenary Session: Roger Reeves, PhD REGATTA BALLROOM ABC 12:00 P.M. Closing Remarks: Marsha Mailick Seltzer, PhD & Len Abbeduto, PhD REGATTA BALLROOM ABC 3 Award Recipients David Zeaman Student Award R. Micheal Barker Georgia State University Athena Hayes University of Wyoming Joanne Kersh Boston College Sara Kover University of Wisconsin-Madison Tracey Lloyd University of Wales, Bangor Caitlin McMahon Vanderbilt University Irene Ngai Georgia State University Ashlyn Smith Georgia State University Theodore Tjossem Po s t - Do c t o r a l Fe l l o w Aw a rd Lara Head University of Wisconsin-Madison Nancy Raitano Lee University of Colorado at Denver 4 Exhibitors • The Gatlinburg Conference especially thanks Brookes Publishing Co. for its generous sponsorship of the Poster Session 2 reception and a student travel award • Brookes Publishing Co. P.O. Box 10624 Baltimore, MD 21285-0624 Phone: 1-800-638-3775 • Fax: 410-337-8539 Email: [email protected] www.brookespublishing.com Stop by the booth at 6:00 P.M. Wednesday, March 7 and at 5:00 p.m. on Thursday, March 8 for the FREE student book drawings Blackwell Publishing 350 Main Street Malden MA 02149 Phone: 781-388-8200 Fax: 781-388-8210 www.blackwellpublishing.com E-mail: [email protected] Caring Technologies Inc 1423 W. Franklin St. Boise, ID 83702 Phone/Fax 1-888-355-7161 Ron Oberleitner CEO www.caringtechnologies.com E-mail: [email protected] • THANK YOU TO OUR 2007 EXHIBITORS • 5 Invited Speakers Ira Lott, MD Thursday, March 8, 2007 10:30 A.M.–12:00 P.M. “Down Syndrome and Alzheimer’s Disease: Clues from Neuroimaging” Regatta Ballroom Individuals with Down syndrome (DS) are at risk for developing Alzheimer disease after the age of 40 years. It is not clear why some individuals display cognitive decline and others do not even in the 6th or 7th decades of life. Functional brain imaging may help to elucidate the pathogenesis of AD in DS. In non-demented subjects with DS, we have reported an increased glucose metabolic rate by PET scanning in the same areas of the brain (inferior temporal lobe/entorhinal cortex) where patients with AD in the general population show decreased activity. This suggests that a neuronal compensatory response rate may precede the development of dementia in DS. Evidence supporting this hypothesis is seen through immunohistchemical studies in which we have shown that in middle age adults with DS, prior to entorhinal neuron loss, the earliest tau accumulation occurred in the outer molecular layer. These events were followed at a later age, and associated with entorhinal neuron loss, by an increase in GAP-43. Hilar neurons exhibiting a sprouting morphology were also noted. More recently, we have studied the relationship between PET, gray matter assessed with voxel-based morphometry, and dementia ratings in clinically non-demented individuals with DS. The strongest correlations to ratings of dementia included the combination of higher GMR and decreased gray matter volume in parts of the temporal cortex, including the parahippocampus/hippocampus, in the thalamus, caudate, and frontal lobe (BA 47).The combination of increased GMR overlapping with less gray matter in these areas may be consistent with a compensatory brain response to an early stage of the disease process. Taken together with the clinical findings, PET studies in DS may aid in early detection of dementia even before any tissue loss is detected by MRI scans. Dr. Lott is the associate dean of clinical neurosciences, director of the Division of Child Neurology and professor of pediatrics and neurology at the University of California, Irvine Roger H. Reeves, PhD Friday, March 9, 20067 10:30 A.M.–12:00 P.M. Regatta Ballroom “Therapy for Structural Anomalies in the Trisomic Brain” Down syndrome (DS) is the most complex genetic challenge compatible with human survival. Because the pathologies associated with DS are the products of elevated gene expression in every cell throughout development, it has often been assumed to be too complex for meaningful intervention. Recent basic science advances show promise for a meaningful approach to understand the basis for pathogenesis in DS which will support the search for treatments. At least two approaches demonstrate possibilities for overcoming fundamental aspects of the developmental/ageing effects on the CNS in DS. We will review experimental approaches to define the complex genetic basis for variability in cognitive phenotypes. Results from animal model studies in which treatment with a small molecule can reverse structural anomalies in the brain will be presented. Dr. Reeves is a professor in the Department of Physiology at the Johns Hopkins University School of Medicine and Institute for Genetic Medicine. 6 Invited Speakers Stephanie Sherman,PhD Wednesday, March 7, 2007 10:45 A.M.–12:15 P.M. Regatta Ballroom "Trisomy 21: Causes and Consequences" Human chromosome nondisjunction leads to an extraordinary frequency of aneuploidy. For the past 15 years, we have investigated trisomy 21, the leading cause of Down syndrome (DS), as a model to understand nondisjunction and its phenotype consequences. We have built an unprecedented resource of infants with DS and their parents, including biological samples, epidemiological and clinical data. With respect to risk factors associated with nondisjunction, we have shown that altered recombination patterns along the nondisjoined chromosome are associated with maternal nondisjunction. This association is observed for errors classified as occurring in meiosis I (MI), when recombination takes place, and in meiosis II (MII), long after recombination is completed. This latter finding suggests that so-called “MII” errors are initiated in MI. We have now shown that the position of susceptible recombinants differ by the age of the oocyte. Intriguingly, we find that this maternal-age related pattern differs between MI and MII errors. For MI errors, the proportion of oocytes with susceptible telomeric recombinants is highest among young mothers and decreases significantly in the oldest age group. Consequently, we hypothesize that altered recombination is an initial susceptibility factor for nondisjunction, sometimes followed by the perturbation of the meiotic process at a later time. This second step may be age-independent (e.g., genetic or environmental factors) or age-dependent (e.g., accumulated environmental insults). In contrast, among MII errors, susceptible pericentromeric recombination occurs most often in the older age group of oocytes compared with the younger age group. Our ultimate goal is to dissect that susceptibility for nondisjunction into its primary liability factors to better determine potential treatment endpoints. With respect to phenotype consequences, our goal is to identify genetic and environmental factors that increase the risk for Down syndrome-associated birth defects. We have begun by examining congenital heart defects as a paradigm for the study of more complex traits, such as cognition and behavior. To begin, we have established a multi-site project to enroll participants with Down syndrome and complete atrioventricular septal defects (AVSD) and those without heart defects. We will conduct a genetic association case-control study to identify susceptibility genes for AVSD. We will use our data from the epidemiological study to identify environmental risk factors and potential gene-environment interactions. Dr. Sherman is a professor in the Department of Human Genetics and director of the Genetics and Molecular Biology Graduate Program at Emory University School of Medicine. Jennifer G. Wishart,PhD Thursday, March 8, 2007 1:15 P.M.–2:45 P.M. Regatta Ballroom “Social Cognition In Children with Down Syndrome: Current Evidence, Future Directions” Down syndrome (DS) is one of the best known of all of the intellectually-disabling conditions and yet surprisingly it is still possibly one of the least well understood. Most children with DS face major obstacles in acquiring basic childhood skills and also usually face significant difficulties in forming and maintaining peer friendships. Comparatively little empirical research directly addresses the origins of these difficulties and indeed social understanding is commonly thought to be relatively ‘protected’ in this syndrome. This talk aims to overview findings from recent evidence on socio-cognitive skills in DS, assessing the possible developmental implications of any weaknesses in this area of functioning. Data from our own most recent work will also be presented, including studies of emotion recognition ability and of behaviors in collaborative learning contexts. Our overall aim has been to identify any relative strengths and weaknesses in socio-cognitive understanding in children with DS, to investigate how they make use of their interpersonal understanding in potential learning contexts, and to try to tie what is known about social understanding and developmental trajectories in DS to what is known about the underlying neurobiology of DS. Our findings suggest that motivational and socio-cognitive deficits may add to the effects of general cognitive impairment in DS and contribute to the decline in developmental rate characteristic of this syndrome. Wide variability in individual developmental profiles, however, suggests that some of these psychologically-driven aspects of behavior may be open to facilitative intervention, unlike many of the biologically-determined weaknesses in DS functioning. Dr. Wishart is a professor of developmental disabilities in childhood at the Moray House School of Education, University of Edinburgh 7 2007 Gatlinburg Conference W E D N E S D A Y March 7, 2007 8:45 – 10:15 A.M. • SYMPOSIUM 1 – Ballroom A Early Risk for Developmental Delays Among Children of First Time Mothers: Two Year Findings from the Parenting for the First Time Project Chair: John G. Borkowski, University of Notre Dame Discussant: Craig Ramey, Georgetown University The Parenting for the First Time Project: Design and Methodology Jennifer Burke Lefever1 Robin Gaines Lanzi2 Centers for the Prevention of Child Neglect3 1 University of Notre Dame Georgetown University 3 Georgetown University, University of Alabama-Birmingham, University of Kansas, University of Notre Dame, University of Texas at Houston 2 Prenatal Cumulative Risk and Maternal Parenting During Infancy Kimberly S. Howard1 Judith J. Carta2 Kere P. Hughes3 Julie N. Schatz4 John G. Borkowski4 Centers for the Prevention of Child Neglect5 1 Teachers College, Columbia University University of Kansas 3 Iowa State University 4 University of Notre Dame 5 Georgetown University, University of Alabama-Birmingham, University of Kansas, University of Notre Dame, University of Texas at Houston 2 Application of the E-RISK Index with Children with Special Needs: A Reliable and Easy-to Administer Screening Tool of Early Precursors of Likely Neglectful Behaviors Robin Gaines Lanzi1 Sharon Landesman Ramey1 Shannon Carothers1 Bette R. Keltner1 Centers for the Prevention of Neglect2 1 Georgetown University Georgetown University, University of Alabama-Birmingham, University of Kansas, University of Notre Dame, University of Texas at Houston 2 The Longitudinal Impact of Maternal Warmth and Hostility on Early Language Development: Comparisons of Adolescent and Adult Mothers Leann E. Smith1 Gitta Lubke2 Steve Warren3 Centers for the Prevention of Child Neglect4 8 1 University of Wisconsin-Madison University of Notre Dame 3 University of Kansas 4 Georgetown University, University of Alabama-Birmingham, University of Kansas, University of Notre Dame, University of Texas at Houston 2 Prenatal Maltreatment Risk, Early Parenting Behaviors, and Children’s Emergent Regulation Julie Schatz1 John G. Borkowski1 Centers for the Prevention of Child Neglect2 1 University of Notre Dame Georgetown University, University of Alabama-Birmingham, University of Kansas, University of Notre Dame, University of Texas at Houston 2 Obstacles to Service Receipt for Children with Early Indicators of Developmental Delays Carol E. Akai1 Leann E. Smith2 Lorraine V. Klerman3 Bette R. Keltner4 Kristi C. Guest5 Centers for the Prevention of Child Neglect6 1 University of Notre Dame University of Wisconsin—Madison 3 Brandeis University 4 Georgetown University 5 University of Alabama at Birmingham 6 Georgetown University, University of Alabama-Birmingham, University of Kansas, University of Notre Dame, University of Texas at Houston 2 • SYMPOSIUM 2 – Ballroom B Down Syndrome, Aging, and Alzheimer’s Disease: Practical Insights from Prospective Studies Chair:Wayne Silverman, Kennedy Krieger Institute and Johns Hopkins University School of Medicine Elevated Plasma Amyloid β -Peptide Aβ42,Incident Dementia and Mortality in Down Syndrome Nicole Schupf1 Bindu P. Patel2 Deborah Pang2 Warren B. Zigman3 Pankaj D. Mehta3 Richard P. Mayeux2 Wayne Silverman4 1 Columbia University, G. H. Sergievsk Center Columbia University Medical Center 3 NYS Institute for Research on Developmental Disabilities 4 Kennedy Krieger Institute and Johns Hopkins School of Medicine 2 2007 Gatlinburg Conference W E D N E S D A Y March 7, 2007 Apolipoprotein ε4 is Associated with Increased Mortality Risk in Nondemented Adults with Down Syndrome Warren B. Zigman1 Edmund C. Jenkins1 Benjamin Tycko2 Nicole Schupf1,3 Wayne Silverman4 1 New York State Institute for Basic Research in Developmental Disabilities 2 The Taub Institute for Research on Alzheimer’s Disease and the Aging Brain, Columbia University College of Physicians and Surgeons 3 Columbia University, G. H. Sergievski Center 4 Kennedy Krieger Institute and Johns Hopkins University School of Medicine “Mild Cognitive Impairment” and Behavioral Concerns in Adults with Down Syndrome Tiina K. Urv1 Sharon Krinsky-McHale2 Warren Zigman2 Wayne Silverman3 Sibling Relationships and Psychological Well-Being in Adults with and Without Siblings with Intellectual Disabilities Richard Hastings1 Mairead Doody1 Sarah O’Neill2 Ian Grey2 1 2 University of Wales Bangor Trinity College Dublin Parent – Sibling Communication in Families of Children with Autism, Down Syndrome, and Sickle Cell Disease J. Carolyn Graff University of Tennessee Health Science Center 10:30 – 10:45 A.M. • OPENING REMARKS– REGATTA BALLROOM Marsha Mailick Seltzer, PhD & Len Abbeduto, PhD Waisman Center, University of Wisconsin-Madison 1 University of Massachusetts Medical School–Shriver Center New York State Institute for Basic Research in Developmental Disabilities 3 Kennedy Krieger Institute and Johns Hopkins University School of Medicine 2 Are Cholinesterase Inhibitors Effective for Adults with Down Syndrome? Wayne Silverman1 Warren Zigman2 Nicole Schupf2,3 Tiina Urv4 Robert Ryan2 1 Kennedy Krieger Institute and Johns Hopkins University School of Medicine 2 New York State Institute for Basic Research in Developmental Disabilities 3 Columbia University, G. H. Sergievski Center 4 University of Massachusetts Medical School–Shriver Center • SYMPOSIUM 3 – Ballroom C Siblings of Individuals with Developmental Disabilities Across the Life Span Chair: Ann Kaiser, Vanderbilt University Discussant: Gael Orsmond, Boston University Adult Siblings of Persons with Disabilities: Findings from a National Survey Richard C. Urbano Robert M. Hodapp 10:45 A.M. – 12:15 P.M. • PLENARY SESSION–REGATTA BALLROOM 123456789012345678901234567890121234567890123456789012345678901212345678901 123456789012345678901234567890121234567890123456789012345678901212345678901 123456789012345678901234567890121234567890123456789012345678901212345678901 123456789012345678901234567890121234567890123456789012345678901212345678901 123456789012345678901234567890121234567890123456789012345678901212345678901 123456789012345678901234567890121234567890123456789012345678901212345678901 123456789012345678901234567890121234567890123456789012345678901212345678901 123456789012345678901234567890121234567890123456789012345678901212345678901 123456789012345678901234567890121234567890123456789012345678901212345678901 "Trisomy 21: Causes and Consequences" Stephanie Sherman, PhD Professor of human genetics and director of the Genetics and Molecular Biology Graduate Program, Emory University School of Medicine. 1:15 P.M. – 2:45 P.M. • SYMPOSIUM 4 – Ballroom A Asian Families of Children with Developmental Disabilities Chair: Jin Y. Shin, Hofstra University Discussant: Laraine M. Glidden,Georgetown University Agreement on Childhood Disability between Parents and Teachers in Vietnam Jin Y. Shin1,2 Nguyen Viet Nhan 3 Stavros S. Valenti1 Michel Flory 2 1 Department of Psychology, Hofstra University 2 Infant Development, New York State Institute for Basic Research in Developmental Disabilities 3 Hue Medical College, Vietnam Vanderbilt University Symposium 4 continued on next page 9 2007 Gatlinburg Conference W E D N E S D A Y March 7, 2007 A Comparison of Perspectives on Sibling Relationships Involving an Individual with Special Needs Sun Young Ryu Department of Health and Behavioral Studies, Teachers College, Columbia University Parent Language Input and Its Impact on the Engagement of Children with Autism: The Chinese Perspective Peishi Wang Graduate Program in Special Education, Department of Educational and Community Programs, Queens College, City University of New York • SYMPOSIUM 5 – Ballroom B Children with Down Syndrome: Parent and Child Supports Chair: Mary Ann Romski, Georgia State University Discussant: Nancy Brady, University of Kansas Parent-Child Communication at Home in Preschool Children with Down Syndrome and Autism Spectrum Disorders Ann P. Kaiser1 Terry B. Hancock1 Prathibha Vijay1 1 Vanderbilt University Coping with Frustration in Children with Down Syndrome Laudan B. Jahromi1 Amanda Gulsrud2 Connie Kasari2 1 Arizona State University 2 University of California, Los Angeles Examining Parental Stress and Parental Perceptions of Toddler’s Communication Development Following Language Intervention: A Comparison between Children with and without Down Syndrome Ashlyn L. Smith1 Mary Ann Romski1 1 Georgia State University • SYMPOSIUM 6 – Ballroom C Down Syndrome: Gene Expression and Beyond Chair: Benjamin Tycko, Institute for Cancer Genetics, Herbert Irving Cancer Research Center Discussant: Nicole Schupf, Taub Institute for Research on Alzheimer’s Disease and the Aging Brain, Columbia University Medical CenterInstitute for Basic Research in Developmental Disabilities 10 Function of Chromosome 21 Gene Products Investigated in BAC-Transgenic Mice Luzhou Xing Martha Salas Chyuan-Sheng Lin Ning Kon Muyang Li Wei Gu Warren Zigman Wayne Silverman Benjamin Tycko Department of Pathology, Taub Institute and Institute for Cancer Genetics, Columbia University Medical Center Department of Psychology, New York State Institute for Basic Research Department of Behavioral Psychology, Kennedy Krieger Institute Role of PIP2 Phosphatase Synaptojanin 1 in Down Syndrome-Linked Brain Dysfunction Sergey V. Voronov Samuel G. Frere Silvia Giovedi Elizabeth A. Pollina Cecilia Schmidt Laurent Cimasoni Christelle Borel Markus R. Wenk Stylianos E. Antonarakis Katheleen Gardiner Muriel T. Davisson Ottavio Arancio Pietro De Camilli Gilbert Di Paolo Taub Institute for Research on Alzheimer’s Disease and the Aging Brain Columbia University Medical Center Consequences of Over-Expression of Mnb/Dyrk1A in Down Syndrome Jerzy Wegiel Karol W. Dowjat Wojciech Kaczmarski Yu-Wen Hwang Cheng-Xin Gong Tatyana Adayev Madhabi Barua Izabela Kuchna Krzysztof Nowicki Jarek Wegiel Humi Imaki Pankaj Mehta Arthur Dalton Georgio Albertini Symposium 6 continued on next page 2007 Gatlinburg Conference W E D N E S D A Y March 7, 2007 Ausma Rabe Zhihou Liang Fei Liu Khalid Iqbal Inge Grundke-Iqbal Noriko Murakami Naryan Ramakrishna Wayne P. Silverman New York State Institute for Basic Research in Developmental Disabilities Kennedy Krieger Institute, Johns Hopkins University School of Medicine 4:45 P.M. – 6:00 P.M. • PLENARY SESSION–REGATTA BALLROOM 123456789012345678901234567890121234567890123456789012345678901212345678901 123456789012345678901234567890121234567890123456789012345678901212345678901 123456789012345678901234567890121234567890123456789012345678901212345678901 123456789012345678901234567890121234567890123456789012345678901212345678901 123456789012345678901234567890121234567890123456789012345678901212345678901 123456789012345678901234567890121234567890123456789012345678901212345678901 123456789012345678901234567890121234567890123456789012345678901212345678901 123456789012345678901234567890121234567890123456789012345678901212345678901 123456789012345678901234567890121234567890123456789012345678901212345678901 123456789012345678901234567890121234567890123456789012345678901212345678901 123456789012345678901234567890121234567890123456789012345678901212345678901 123456789012345678901234567890121234567890123456789012345678901212345678901 123456789012345678901234567890121234567890123456789012345678901212345678901 NIH Workshop: The NIH Organization, Programs, & Grant Review 6:30 P.M. – 8:30 P.M. • POSTER SESSION 1– ATRIUM 1. Hyporesponsive Sensory Patterns in Young Children with Autism,Developmental Delay, and Typical Development Grace T. Baranek Margaret DeRamus Linda R. Watson Brian A. Boyd Michele D. Poe University of North Carolina at Chapel Hill 2. Intrauterine Growth Retardation and Executive Function Performance at School Age Richard C. Belser Vicki Sudhalter Judith M. Gardner Bernard Z. Karmel N.Y.S. Institute for Basic Research in Developmental Disabilities 3. Persistence in Early Communication by Young Children with Down Syndrome and Other Developmental Disabilities Nancy C. Brady Kandace Fleming 4. Experiences of Parental Advocates in Self-help Groups For Children with Autism Irene Carter University of Calgary 5. Early Learning Profile in Preschoolers with Williams Syndrome: A Descriptive Study Ashley Cole David Most Deborah Fidler Amy Philofsky Susan Hepbun Colorado State University; University of Colorado Denver Health Sciences Center 6. Predicting Marital Satisfaction from Initial Maternal Depression and Burden of Care Jenalee Coster Brian M. Jobe Laraine M. Glidden St. Mary’s College of Maryland 7. Factors Predicting Mortality in a Residing with Family Aging Sample of Adults with Mental Retardation Anna J. Esbensen Marsha Mailick Seltzer Jan S. Greenberg Waisman Center, University of Wisconsin – Madison 8. Examining Differences between Autistic Children with and without Mental Retardation Marygrace Y. Kaiser Vanessa Gonzalez Jennifer S. Durocher Michael Alessandri Claudia Rojas University of Miami 9. Linking Executive Function and Repetitive Behaviors in Autism Spectrum Disorders Harrison, B.1 Black, D.2 Wallace, G. 3 Della Rosa, A.1 Kenworthy, L.1 1 Children’s National Medical Center, Washington, D.C. Boston University School of Medicine 3 National Institute of Mental Health 2 University of Kansas Poster Session 1 continued on next page 11 2007 Gatlinburg Conference W E D N E S D A Y March 7, 2007 10. Restricted, Repetitive and Stereotyped Behaviors, Interests, and Activities in Children with Autism Athena Hayes1 William MacLean, Jr.1 Susan Hepburn2 Sally Rogers3 1 University of Wyoming University of Colorado Health Sciences Center 3 University of California-Davis 2 11. Enhancing Cognitive-Emotional Skills for Children with Developmental Disabilities through Computer-Based Training Ingrid M. Hopkins Margaret J. Bates Shana B. Crowson Rebekah K. Pearson Fred J. Biasini University of Alabama at Birmingham 12. Increased Special Health Care Needs in Children with Severe Developmental Disabilities and Behavioral Disorders: Implications for Interdisciplinary Treatment of Problem Behavior Craig H. Kennedy A. Pablo Juárez Angela Becker Kathryn Greenslade Mark T. Harvey Clare Sullivan Brenna Tally Vanderbilt University 13. Teaching Money Skills to Children with Intellectual Disabilities: Rapid Learning via Constructed Response Matching-to-Sample Procedures Joanne B. Kledaras1 Dana Hurlbut1 William J. McIlvane2 William V. Dube2 1 2 Praxis, Inc. UMMS Shriver Center 14. Receptive Language in Adolescents with Fragile X Syndrome with or without Autism S. T. Kover L. Abbeduto N. D. Giles E. K. Richmond P. Lewis A. Weber S. Schroeder J. A. Anderson A. Baron Waisman Center, University of Wisconsin-Madison 15. Developmental Trajectories of Language Skills in Toddlers and Adolescents with Down Syndrome Nancy Raitano Lee1,2 Susan Hepburn1 Amy Philofsky1 Deborah Fidler3 Sally Rogers4 Bruce Pennington2 1 JFK Partners; University of Colorado at Denver & Health Sciences Center 2 Department of Psychology, University of Denver 3 Department of Human Development & Family Studies, Colorado State University 4 M.I.N.D. Institute, University of California – Davis 16. Mood and Anxiety in Mothers of Children with FXS and Mothers of Children with Autism Jean B. Mankowski1 Jane Roberts1 Donald Bailey Jr2 1 2 FPG Child Development Institute at UNC-Chapel Hill RTI International 17. Parents of Children with Autism Spectrum Disorders Have Merited Concerns About Their Infant Siblings Caitlin R. McMahon Elizabeth E. Malesa Paul J. Yoder Wendy L. Stone Vanderbilt University, Psychology and Human Development, & Vanderbilt Kennedy Center Poster Session 1 continued on next page 12 2007 Gatlinburg Conference W E D N E S D A Y March 7, 2007 18. Personality, Coping Style, and Adjustment of Parents Rearing Children with Developmental Disabilities Angela L. Natcher Brian M. Jobe Laraine M. Glidden 24. The Effects of Prematurity on Concept Formation at Five Years of Age Vicki Sudhalter Richard C. Belser Judith M. Gardner Bernard Z. Karmel Department of Psychology, St. Mary’s College of Maryland N.Y.S. Institute for Basic Research in Developmental Disabilities 19. The Effect of Disability Status and Social Experience on Social Cognitive Development Irene Ngai1 Frank J. Floyd1 Janis B. Kupersmidt2 1 2 Georgia State University University of North Carolina at Chapel Hill 20. Emotional and Behavioural Adjustment in Siblings of Children with Intellectual Disability With and Without Autism Michael A. Petalas Susie Nash Tracey Lloyd School of Psychology, University of Wales, Bangor 21. Health Knowledge and Expected Outcomes of Risky Behaviour: A Comparative Study of NonDisabled Adolescents and Young People with Intellectual and Physical Disabilities Pownall, J Jahoda, A Wilson 25. Interactive Training on Active Support: Perspectives from Staff, Managers, and Trainers Vaso Totsika Sandy Toogood Susie Nash University of Wales, Bangor 26. Life Events and Psychological Outcomes in Adults with Intellectual Disabilities: Longitudinal Relationships Lee Williams Richard Hastings Stephen Noone Lauren Burns Jessica Day John Mulligan School of Psychology, University of Wales Bangor University of Glasgow, Scotland, UK Section of Psychological Medicine, Division of Community Based Sciences, Gartnavel Royal Hospital 22. Parental Coping Assistance with Peer Problem Solving for Children with Intellectual Disabilities Kara Snead1 Frank J. Floyd1 Janis Kupersmidt2 1 2 Georgia State University University of North Carolina at Chapel Hill 23. Is Maternal Responsivity Different in Mothers of Young Children with Fragile X Syndrome Compared to Down Syndrome? Audra Sterling Nancy Brady Steven F. Warren University of Kansas 13 2007 Gatlinburg Conference T H U R S D A Y March 8, 2007 8:45 A.M. – 10:15 A.M. • SYMPOSIUM 7 – Ballroom A Selective Neuropsychological Changes Across the Adult Lifespan in Down Syndrome Chair: Darlynne A. Devenny, New York State Institute for Basic Research in Developmental Disabilities Discussant: A.J. Holland,University of Cambridge Autism: Predictors of Response to Treatment as Behavioral Phenotypes Travis Thompson1 Glen Sallows2 1 Department of Pediatrics Autism Program, University of Minnesota School of Medicine 2 Wisconsin Early Autism Project Declines in Visuo-spatial Abilities in Young Adults with Down Syndrome D.A. Devenny P. Kittler S.J. Krinsky-McHale New York State Institute for Basic Research in Developmental Disabilities Behavioral Phenotype in Relationship to Analysis of Behavioral Function and Intervention William J. McIlvane Curtis K. Deutsch Krista M. Wilkinson William V. Dube Visuo-spatial Working Memory Decline Associated with MCI and DAT S.J. Krinsky-McHale1 P. Kittler1 W. Silverman2 D.A. Devenny1 • SYMPOSIUM 9 – Ballroom C 1 New York State Institute for Basic Research in Developmental Disabilities 2 Kennedy Krieger Institute and John Hopkins University School of Medicine Neuropathological Evidence of Alzheimer’s Disease in Down Syndrome L.D. Nelson V. Kepe P. Siddarth J. Barrio G. Small University of Massachusetts Medical School - Shriver Center Biobehavioral Analyses of Self-Injurious Behavior Chair: Frank J. Symons, Department of Educational Psychology, University of Minnesota A Comparison of the Frequency, Location, and Function of Self-Injurious Behavior between High and Low Intensity SIB Cases Chin-Chih Chen University of Minnesota A Comparison of the Frequency of Nonverbal Behavioral Indices of Pain Expression between SIB and Control Cases During Sensory Testing Stacy Danov University of Minnesota University of California Los Angeles Integrating Autonomic Arousal into Functional Behavioral Analysis of Self-Injury John Hoch • SYMPOSIUM 8 – Ballroom B University of Minnesota Behavioral Phenotypes Chair: Travis Thompson, Dept of Pediatrics Autism Program, University of Minnesota School of Medicine A Comparison of Epidermal Morphology and Physiology between SIB and Control Cases Frank Symons Prader-Willi Syndrome, Oxytocin, and Behavior. Elisabeth Dykens Elizabeth Roof Elizabeth Pantino Rebecca Kossler Ray Johnson Mayim Bialik Hossein Nazarloo Sue Carter University of Minnesota Vanderbilt Kennedy Center Ira Lott, MD 10:30 A.M. – 12:00 P.M. • PLENARY SESSION–REGATTA BALLROOM 12345678901234567890123456789012123456789012345678901234567890121234567890 12345678901234567890123456789012123456789012345678901234567890121234567890 12345678901234567890123456789012123456789012345678901234567890121234567890 12345678901234567890123456789012123456789012345678901234567890121234567890 12345678901234567890123456789012123456789012345678901234567890121234567890 12345678901234567890123456789012123456789012345678901234567890121234567890 12345678901234567890123456789012123456789012345678901234567890121234567890 12345678901234567890123456789012123456789012345678901234567890121234567890 12345678901234567890123456789012123456789012345678901234567890121234567890 12345678901234567890123456789012123456789012345678901234567890121234567890 12345678901234567890123456789012123456789012345678901234567890121234567890 12345678901234567890123456789012123456789012345678901234567890121234567890 12345678901234567890123456789012123456789012345678901234567890121234567890 12345678901234567890123456789012123456789012345678901234567890121234567890 "Down Syndrome and Alzheimer’s Disease: Clues from Neuroimaging" Associate dean of clinical neurosciences, director of the Division of Child Neurology, and professor of pediatrics and neurology at the University of California, Irvine 14 2007 Gatlinburg Conference T H U R S D A Y March 8, 2007 1:15 P.M. – 2:45 P.M. • PLENARY SESSION–REGATTA BALLROOM 123456789012345678901234567890121234567890123456789012345678901212345678901 123456789012345678901234567890121234567890123456789012345678901212345678901 123456789012345678901234567890121234567890123456789012345678901212345678901 123456789012345678901234567890121234567890123456789012345678901212345678901 123456789012345678901234567890121234567890123456789012345678901212345678901 123456789012345678901234567890121234567890123456789012345678901212345678901 123456789012345678901234567890121234567890123456789012345678901212345678901 123456789012345678901234567890121234567890123456789012345678901212345678901 123456789012345678901234567890121234567890123456789012345678901212345678901 123456789012345678901234567890121234567890123456789012345678901212345678901 123456789012345678901234567890121234567890123456789012345678901212345678901 123456789012345678901234567890121234567890123456789012345678901212345678901 123456789012345678901234567890121234567890123456789012345678901212345678901 123456789012345678901234567890121234567890123456789012345678901212345678901 123456789012345678901234567890121234567890123456789012345678901212345678901 123456789012345678901234567890121234567890123456789012345678901212345678901 123456789012345678901234567890121234567890123456789012345678901212345678901 123456789012345678901234567890121234567890123456789012345678901212345678901 "Social Cognition In Children with Down Syndrome: Current Evidence, Future Directions" Jennifer G. Wishart, PhD Professor of developmental disabilities in childhood at the Moray House School of Education, University of Edinburgh 3:00 P.M.– 5:00 P.M. • PAPER SESSION 1 – Ballroom A FRAGILE X AND AUTISM Educational & Therapeutic Involvement by Parents of Young Children with ASD Paul R. Benson Center for Social Development & Education, University of Massachusetts Neural Network Analysis of MAOA, Serotonin Transporter, and Serotonin Receptor (HTR1B) Polymorphisms on the Behaviors of Children on the Autism Spectrum Cohen, I.L.1 Liu, X.2 Jenkins, E.C.1 Brown, W.T. 1 Gonzalez, M. 1 Rovito-Gomez, T. 1 Kim, S-Y1 Lewis, S. 2 Chudley, A. 2 ASD-CARC and Holden, J.J.A.2 1 NYS Institute for Basic Research in Developmental Disabilities 2 Queens University, Kingston, Ontario Insomnia in Children with Autism Spectrum Disorders: Evidence from Multiple Sources Lynnette M. Henderson Beth A. Malow Mary L. Marzec Susan G. McGrew Lily Wang Wendy L. Stone Girls With Fragile X Syndrome: Early Development and Behavior Deborah D. Hatton1 John Sideris1 Anne Wheeler1 Kelly Sullivan2 1 2 The University of North Carolina at Chapel Hill Duke University Negative Reactivity in Preschool Boys with Fragile X Syndrome Jane E. Roberts Meghan Shanahan Deborah D. Hatton University of North Carolina at Chapel Hill Psychotropic Medication Use in Fragile X Syndrome: Analysis of Side Effects Maria G. Valdovinos Rahul A. Parsa Michelle L. Alexander Drake University • PAPER SESSION 2 – Ballroom B FAMILIES, MENTAL HEALTH, AND SOCIAL BEHAVIOR The Pivotal Behavior Model of Development: Implications for Developmental Intervention Gerald Mahoney Frida Perales Mandel School of Applied Social Sciences, Case Western Reserve University Predicting Disruptive Behavior Disorders in FiveYear Old Children with and without Intellectual Disability Bruce L. Baker1 Rachel Fenning1 Jan Blacher2 1 Department of Psychology, UCLA Graduate School of Education, University of California, Riverside 2 Mental Health of Children and Adolescents with and without Intellectual Disabilities in Britain Eric Emerson Chris Hatton Institute for Health Research, Lancaster University, UK Vanderbilt Kennedy Center for Research in Human Development Paper Session 2 continued on next page 15 2007 Gatlinburg Conference T H U R S D A Y March 8, 2007 Household Task Participation of Children with and without Attentional Problems M. Louise Dunn1 Wendy J. Coster2 Gael S. Orsmond2 Ellen S. Cohn2 1 2 University of Utah Boston University Using Electropalatograpy (EPG) to Assess and Treat Speech Articulation Difficulties in Children with Down’s Syndrome Sara Wood1 Bill Hardcastle1 Joanne McCann1 Claire Timmins1 Jennifer Wishart2 1 Socio-Economic Position, Social Connectedness and the Self-Reported Well-Being of Women and Men with Intellectual Disabilities in England Chris Hatton Eric Emerson Institute for Health Research, Lancaster University, UK Unmet Need in Families of Young People with Intellectual and Developmental Disabilities Vivien J Moffat 1 Jennifer G Wishart 2 Eve C Johnstone 1 1 2 Division of Psychiatry, University of Edinburgh Moray House School of Education, University of Edinburgh • PAPER SESSION 3 – Ballroom B DOWN SYNDROME AND INTERVENTIONS Telomere Shortening in Chromosomes 21, 1, 2, and 16, and Reduced Signal Number in T-Lymphocyte Metaphases from Older Individuals with Down Syndrome and Dementia E.C. Jenkins1 M.T. Velinov1 L. Ye1 H. Gu1 Samantha A. Ni1 D. Pang1,2 D.A. Devenny1 W.B. Zigman1 N. Schupf1,2 W.P. Silverman1,3 1 NYS Institute for Basic Research in Developmental Disabilities 2 Taub Institute for Research on Alzheimer’s Disease and the Aging Brain, Columbia University 3 Kennedy-Krieger Institute, Johns Hopkins University School of Medicine Down’s Syndrome, Ageing and Alzheimer’s Disease Holland, A.J. Ball, S. Herbert, J. University of Cambridge, UK 16 Queen Margaret University College, Edinburgh University of Edinburgh 2 Inclusive Education and Social Isolation among Adolescents with Down Syndrome Joanne Kersh Penny Hauser-Cram Helena Pan Boston College Establishing the Building Blocks of Cognitive Behavioural Therapy with People with Mild Learning Disabilities: Developing a Collaborative Relationship Andrew Jahoda1 Carol Pert1 Peter Trower2 Biza Stenfert-Kroese2 Dave Dagnan3 Mhairi Selkirk1 1 University of Glasgow University of Birmingham 3 University of Lancaster 2 5:15 P.M. – 6:15 P.M. • PLENARY SESSION–REGATTA BALLROOM 12345678901234567890123456789012123456789012345678901234567890121234567890 12345678901234567890123456789012123456789012345678901234567890121234567890 12345678901234567890123456789012123456789012345678901234567890121234567890 12345678901234567890123456789012123456789012345678901234567890121234567890 12345678901234567890123456789012123456789012345678901234567890121234567890 12345678901234567890123456789012123456789012345678901234567890121234567890 12345678901234567890123456789012123456789012345678901234567890121234567890 12345678901234567890123456789012123456789012345678901234567890121234567890 12345678901234567890123456789012123456789012345678901234567890121234567890 12345678901234567890123456789012123456789012345678901234567890121234567890 12345678901234567890123456789012123456789012345678901234567890121234567890 12345678901234567890123456789012123456789012345678901234567890121234567890 12345678901234567890123456789012123456789012345678901234567890121234567890 12345678901234567890123456789012123456789012345678901234567890121234567890 UPDATE ON NIH TASK FORCE ON DOWN SYNDROME 2007 Gatlinburg Conference T H U R S D A Y March 8, 2007 Angeles 6:30 P.M. – 8:30 P.M. • POSTER SESSION 2– ATRIUM 1. Language Development in Toddlers with Developmental Disabilities Following Intervention: The Role of Child and Parent Communication Characteristics R. Micheal Barker Rose A. Sevcik Georgia State University 7. Stressful Social Interactions, Attributions, and Coping among Depressed Adults with Mild Intellectual Disability-Poster Presentation Sigan L. Hartley William E. MacLean, Jr. University of Wyoming 8. Family Cohesion and Its Influence on Adaptive Behavior Development in Children with a Disability Lara S. Head1 Alan M. Gross2 1 2. Repetitive Behaviors and Sensory Features in Young Children with Autism: Examining Relationships and Specificity Brian A. Boyd1 Grace T. Baranek Linda R. Watson Elena Gay University of North Carolina at Chapel Hill 2 Waisman Center, University of Wisconsin-Madison The University of Mississippi 9. Father Presence as a Predictor of Maternal Stress and Quality of Life in Families with Children with Fragile X Syndrome Anna James Jane E. Roberts Don Bailey University of North Carolina at Chapel Hill 3. Predicting the Depression and Well-being of Mothers Rearing Children with Developmental Disabilities April M. Corrice Laraine M. Glidden Brian M. Jobe St. Mary’s College of Maryland 4. Positive States as Mediators of Stress in Parents of Children with Different Types of Intellectual Disabilities Elizabeth Roof Elizabeth Pantino Rebecca Kossler Ray Johnson Elisabeth M. Dykens Vanderbilt Kennedy Center 10. Auditory Brainstem Evoked Responses in Newborns with Down Syndrome P. Kittler1, 2 B.Z. Karmel1, 2 H.T.T. Phan1, 2 J.M. Gardner1, 2 A. Gordon1, 2 A. Harin2 1 2 NYS Institute for Basic Research in DD St. Vincent’s Catholic Medical Center 11. Gender and Delay of Gratification in High Risk Children Shira Kolnik Ann-Marie Faria Marygrace Yale Kaiser University of Miami 5. Insecure and Disorganized Attachment among AtRisk Children: The Influence of Subthreshold Neglect Jaelyn R. Farris Jody S. Nicholson John G. Borkowski University of Notre Dame 12. Changes in Joint Attention Following Two Years of Early Intensive Behavioural Intervention in Preschool Aged Children with Autism Hanna Kovshoff1 Richard Hastings2 Bob Remington1 1 6. The Role of Caregiver Praise as a Mechanism for Children’s Sustained Engagement Kim Har Connie Kasari 2 School of Psychology, University of Southampton, UK School of Psychology, University of Wales, Bangor, UK Graduate School of Education, University of California, Los Poster Session 2 continued on next page 17 2007 Gatlinburg Conference T H U R S D A Y March 8, 2007 13. Maternal Predictors of Adaptive Behavior of Boys with Fragile X Syndrome Heather Magruder FPG Child Development Institute, University of North Carolina at Chapel Hill 14. Autism in Early Childhood: Identification and Treatment Nicole J. Neudorfder Aila Dommestrup Laura Lee McIntyre Syracuse University 15. Trajectory of Mathematics and Reading Skills in School-age Girls with Fragile X Syndrome Melissa M. Murphy Michèle M. M. Mazzocco Johns Hopkins University and Kennedy Krieger Institute 16. Lip Dynamics and Stereotypic Movement Disorders Karl M. Newell1 F. Aileen Costigan1 James W. Bodfish2 1 2 The Pennsylvania State University University of North Carolina, Chapel-Hill 17. A Longitudinal Examination of the Mediating Role of Behavior Problems in Adaptation for Families of Children With and Without Developmental Delays Anita Pedersen y Arbona Keith Crnic Arizona State University 18. Cross-Syndrome Comparisons of Gesture Use in Toddlers Amy Philofsky1 Susan L. Hepburn1 Deborah J. Fidler2 Sally J. Rogers3 1 Department of Psychiatry, University of Colorado at Denver Health Science Center 2 Human Development & Family Studies, Colorado State University 3 MIND Institute, Department of Psychiatry, University of California, Davis 19. Down Syndrome, and Congenital Heart Defect: Maternal Experiences of Bereavement Deirdre Reilly Frances Vaughan Jaci Huws School of Psychology, University of Wales, Bangor 18 20. Correlations between Locus of Control and Assertiveness and Knowledge of Abuse and Decision-Making Performance among Individuals with Moderate to Severe Disabilities Anne Spillane National University 21. Sibling Relationship Quality for Individuals with Mental Retardation: A Comparison of Sibling Reports Shana Strickland Vivian Piazza Frank J. Floyd Georgia State University 22. Examining Contingency Control Deficits in Children with and without Autism Louis P. Hagopian1 Lisa M. Toole2,3 Eric Boelter2 Heather K. Jennett2 Gregory A. Lieving4 Keith J. MacWhorter2 Elizabeth L. Tobin5 1 The Johns Hopkins University School of Medicine Kennedy Krieger Institute 3 University of Maryland, Baltimore County 4 West Virginia University Institute of Technology 5 Towson University 2 23. Understanding of the Causes of Emotions in Others by Children with Down’s Syndrome K.R. Williams1 J.G. Wishart1 D.S. Willis2 T.K. Pitcairn1 1 2 University of Edinburgh Napier University 24. Imitation in Young Children with Autism and Other Developmental Delays Connie S. Wong Cleveland State University 25. The Relationship Among Vocabulary Knowledge, Phonological Awareness, and Reading Performance in Children with Mild Intellectual Disabilities Rose A. Sevcik Justin C. Wise Robin D. Morris Georgia State University 2007 Gatlinburg Conference F R I D A Y March 9, 2007 8:45 A.M. – 10:15 A.M. • SYMPOSIUM 10 – Ballroom A Individual Differences in Adaptation in Parents and Siblings of Children with ID – Process Mechanisms and Implications for Support Chair: Malin B Olsson, Department of Psychology, Goteborg University Longitudinal Perspectives on Sibling Impact: The Role of Clinical Behavior Problems Jan Blacher1 Cameron Neece2 1 2 University of California, Riverside UCLA Acceptance as a Longitudinal Predictor of Stress, Anxiety and Depression in Mothers of Children with Intellectual Disabilities Tracey Lloyd Richard Hastings University of Wales, Bangor Family Process in Families of Young Children with Intellectual Disabilities: Depression and InterParental Conflict Zolinda Stoneman Institute on Human Development and Disability/ UCEDD,University of Georgia The Impact of Psychological Variables on WellBeing of Parents of Children with ID Malin B Olsson Department of Psychology,Goteborg University • SYMPOSIUM 11 – Ballroom B Phenotypic Responses to Communication Intervention by Young Children with Down Syndrome Chair: Steven F. Warren, Institute for Life Span Studies, University of Kansas Discussant: Len Abbeduto, Waisman Center, University of Wisconsin at Madison Response by Children with Down Syndrome to Prelinguistic Milieu Teaching Nancy C. Brady1 Steven F. Warren1 Marc E. Fey2 Lizbeth H. Finestack2 Shelley L. Bredin-Oja2 Kandace K. Fleming1 1 Institute for Life Span Studies, University of Kansas, Lawrence, KS 2 University of Kansas Medical Center, Kansas City, KS Effects of Early Augmented Language Intervention on the Communication Skills of Young Children with and without Down Syndrome Mary Ann Romski Rose A. Sevcik Lauren B. Adamson Melissa Cheslock Ashlyn Smith Mike Barker Roger Bakeman Georgia State University • SYMPOSIUM 12 – Ballroom C What Large-Scale, Administrative Databases Can Tell Us about Down Syndrome Chair: Robert M. Hodapp, Vanderbilt Kennedy Center for Research on Human Development, Department of Special Education, Peabody College, Vanderbilt University Using State Administrative Databases to Study Down syndrome Richard C. Urbano Vanderbilt Kennedy Center for Research on Human Development, Department of Pediatrics, Vanderbilt University Medical Center The Demography of Births in Down Syndrome Robert M. Hodapp Vanderbilt Kennedy Center for Research on Human Development, Department of Special Education, Peabody College, Vanderbilt University Treatment (non)Effects and Predictors of Communication and Language Development in Children with Down Syndrome Paul J. Yoder1 Steven F. Warren2 Down Syndrome and Adverse Birth Outcomes S. Trent Rosenbloom 1 Propensity Scores: A Method for Matching on Multiple Variables in Down Syndrome Jennifer U. Blackford John F. Kennedy Center for Human Development, Vanderbilt University 2 Institute for Life Span Studies, University of Kansas Vanderbilt Kennedy Center for Research on Human Development, Department of Biomedical Informatics Vanderbilt Kennedy Center for Research on Human Development, Department of Psychiatry, Vanderbilt University Medical Center 19 2007 Gatlinburg Conference F R I D A Y March 9, 2007 10:30 A.M. – 12:00 P.M. • PLENARY SESSION–REGATTA BALLROOM 123456789012345678901234567890121234567890123456789012345678901212345678901 123456789012345678901234567890121234567890123456789012345678901212345678901 123456789012345678901234567890121234567890123456789012345678901212345678901 123456789012345678901234567890121234567890123456789012345678901212345678901 123456789012345678901234567890121234567890123456789012345678901212345678901 123456789012345678901234567890121234567890123456789012345678901212345678901 123456789012345678901234567890121234567890123456789012345678901212345678901 123456789012345678901234567890121234567890123456789012345678901212345678901 123456789012345678901234567890121234567890123456789012345678901212345678901 123456789012345678901234567890121234567890123456789012345678901212345678901 123456789012345678901234567890121234567890123456789012345678901212345678901 123456789012345678901234567890121234567890123456789012345678901212345678901 123456789012345678901234567890121234567890123456789012345678901212345678901 123456789012345678901234567890121234567890123456789012345678901212345678901 123456789012345678901234567890121234567890123456789012345678901212345678901 "Therapy for Structural Anomalies in the Trisomic Brain" Roger H. Reeves, PhD Professor in the Department of Physiology at the Johns Hopkins University School of Medicine and Institute for Genetic Medicine 12:00 P.M. • PLENARY SESSION–REGATTA BALLROOM CLOSING REMARKS Marsha Mailick Seltzer, PhD & Len Abbeduto, PhD Waisman Center, University of Wisconsin-Madison 20 Symposium 1 S Y M P O S I U M 1 Early Risk for Developmental Delays among Children of First Time Mothers: Two Year Findings from the Parenting for the First Time Project Chair: John G. Borkowski University of Notre Dame Discussant: Craig Ramey Georgetown University 21 SYMPOSIUM 1 Early Risk for Developmental Delays among Children of First Time Mothers: Two Year Findings from the Parenting for the First Time Project Chair: John G. Borkowski, University of Notre Dame Discussant: Craig Ramey, Georgetown University The Parenting for the First Time Project: Design and Methodology Jennifer Burke Lefever1,Robin Gaines Lanzi2,Centers for the Prevention of Child Neglect3 1 University of Notre Dame,2 Georgetown University,3 Georgetown University, University of Alabama-Birmingham, University of Kansas, University of Notre Dame, University of Texas at Houston Prenatal Cumulative Risk and Maternal Parenting During Infancy Kimberly S. Howard1,Judith J. Carta2,Kere P. Hughes3,Julie N. Schatz4,John G. Borkowski4,Centers for the Prevention of Child Neglect5 1 Teachers College, Columbia University,2University of Kansas,3Iowa State University,4University of Notre Dame,5Georgetown University, University of Alabama-Birmingham, University of Kansas, University of Notre Dame, University of Texas at Houston Application of the E-RISK Index with Children with Special Needs: A Reliable and Easy-to Administer Screening Tool of Early Precursors of Likely Neglectful Behaviors Robin Gaines Lanzi1,Sharon Landesman Ramey1,Shannon Carothers1,Bette R. Keltner1,Centers for the Prevention of Neglect2 1 Georgetown University,2Georgetown University, University of Alabama-Birmingham, University of Kansas, University of Notre Dame, University of Texas at Houston The Longitudinal Impact of Maternal Warmth and Hostility on Early Language Development: Comparisons of Adolescent and Adult Mothers Leann E. Smith1,Gitta Lubke2,Steve Warren3,Centers for the Prevention of Child Neglect4 1 University of Wisconsin-Madison,2University of Notre Dame,3University of Kansas,4Georgetown University, University of Alabama-Birmingham, University of Kansas, University of Notre Dame, University of Texas at Houston Prenatal Maltreatment Risk, Early Parenting Behaviors, and Children’s Emergent Regulation Julie Schatz1,John G. Borkowski1,Centers for the Prevention of Child Neglect2 1 University of Notre Dame,2Georgetown University, University of Alabama-Birmingham, University of Kansas, University of Notre Dame, University of Texas at Houston Obstacles to Service Receipt for Children with Early Indicators of Developmental Delays Carol E. Akai1,Leann E. Smith2,Lorraine V. Klerman3, Bette R. Keltner4, Kristi C. Guest5,Centers for the Prevention of Child Neglect6 1 University of Notre Dame,2University of Wisconsin—Madison,3Brandeis University,4Georgetown University,5University of Alabama at Birmingham,6Georgetown University, University of AlabamaBirmingham, University of Kansas, University of Notre Dame, University of Texas at Houston 22 SYMPOSIUM 1 The Parenting for the First Time Project: Design and Methodology Jennifer Burke Lefever1, Robin Gaines Lanzi2, and the Centers for the Prevention of Neglect3 1 University of Notre Dame; 2Georgetown University; 3Georgetown University, University of Alabama-Birmingham, University of Kansas, University of Notre Dame, University of Texas at Houston Contact: Jennifer Burke Lefever, 940 Flanner, Notre Dame, IN 46556, [email protected] Introduction: The Parenting for the First Time Project was designed to assess the impact of varying degrees and types of neglect and poor parenting on children’s development during the first 3 years of life, including changes in intelligence and behavior, language, social and emotional well-being, physical growth, and health status. Data from this study will also help to test and further refine the Notre Dame Adolescent Parenting Conceptual Model by expanding the diversity of teen parents and community settings studied, by including a broad array of assessments related to the construct of childhood neglect, and by applying sophisticated analytic strategies to test the developmental associations among parenting characteristics, parenting behaviors and attitudes, and child developmental delays in multiple domains. Methods: Six hundred and eighty-two expectant mothers were recruited during pregnancy through primary care facilities in the communities of Birmingham, AL, Kansas City, KS, South Bend, IN, and Washington, D.C. Three different groups of first-time mothers were included in the sample: adolescents (n=396), low-ed adults (less than 2 years formal education beyond high school; n=169), and hi-ed adults (at least 2 years of formal education; n=117). The age at the time of the first child’s birth ranged from 14.68 to 36.28, with an average of 17.49 for the adolescents, 25.48 for the low-ed adults, and 27.88 for the hi-ed adults. Approximately 65% of the sample is African-American, 19% is White/Non-Hispanic, 15% is Hispanic, 1% is multi-racial, and .5% is of an other race. The adolescent and low-ed adult samples are closely matched on race/ethnicity. Mothers were interviewed in their last trimester of pregnancy as well as when their children were 4, 6, 8, 12, 18, 24, 30, and 36-months old. Interviews at the prenatal, 6, 12, 24, and 36-month visits primarily focused on risks for poor parenting, such as maternal depression (Beck II), parenting stress (Parenting Stress Index – Short Form), and lack of social support; parenting beliefs and practices; as well as other demographic information. The 4, 8, 18, and 30-month visits occurred in the home and included both interviews and observations of parenting practices (Home Observation for Measurement of the Environment, Supplement to the HOME for Impoverished Families, Landry Naturalistic Observation, and Observation of Parenting Essentials). After each of the home visits, mothers were given a cellular phone and interviewed multiple times over the phone concerning their daily parenting practices (Parent-Child Activities Interview). At the 12, 24, and 36-months visits, the children were also tested for intellectual (Bayley II) and language abilities (Pre-School Language Scales – IV), rated on their behavior by both their mother (Infant Toddler Social and Emotional Assessment) and child tester (Bayely Behavioral Rating Scale II), and their height and weight were measured. Upon completing each assessment after the child’s birth, the interviewers also rated the child’s environment for risks of physical neglect. Discussion: This study represents one of the first-ever prospective broad-based, multi-site investigations of child neglect among a diverse sample of adolescent mothers and will help to establish a foundation for future preventive interventions to reduce the incidence and impact of neglect and abuse on child development. This data set identifies risks for developmental delay as well as protective factors, measured in detail, to better map the multiple and fluctuating social ecologies and personal life circumstances of teen mothers and their young children. Results from this project can be used to identify the mechanisms leading to environmental risks for early developmental disabilities. 23 SYMPOSIUM 1 Prenatal Cumulative Risk and Maternal Parenting During Infancy Kimberly S. Howard1, Judith J. Carta2, Kere P. Hughes3, Julie N. Schatz4, John G. Borkowski4, and the Centers for the Prevention of Child Neglect51Teachers College, Columbia University; 2University of Kansas; 3 Iowa State University; 4University of Notre Dame, 5Georgetown University, University of AlabamaBirmingham, University of Kansas, University of Notre Dame, University of Texas at Houston Contact: Jennifer Burke Lefever, 940 Flanner, Notre Dame, IN 46556, [email protected] Introduction: Much research over the past twenty years has substantiated the fact that children’s development is affected by a number of individual and environmental factors. Theories of cumulative risk posit that individual risks may not greatly influence the course of child development, but when risk factors accumulate, their aggregate effect adversely impact a child’s developmental trajectory (e.g., Rutter, 1979). Few studies have examined the relationship between cumulative risk and parenting outcomes. Recently, Nair and colleagues (2003) studied cumulative risk in a sample of substance abusing women and found significantly higher levels of parenting stress and child abuse potential for women with five risks compared to those with four or fewer risks. Similarly, the present study sought to examine how cumulative risk assessed during pregnancy related to parenting outcomes assessed during the earliest stages of their parenting experience—when their children were 4 and 8 months of age. Methods: Participants included 682 mother/infant dyads who were part of a larger longitudinal study of first time parenting. The sample was divided into two subsamples: Those with less than 2 years of college education (n=565) and those with at least 2 years of college (n=117). The primary analyses were conducted using only the low-education sample in order to identify the effects of risk in an already at-risk group. Maternal risk status was assessed prenatally in six domains: education and intelligence, maternal cognitive readiness to parent, maternal socio-emotional functioning, health and stress, maltreatment risk and demographic risks. The cumulative risk index consisted of a sum of 22 dichotomous risks. Results: Overall, it was found that low-education mothers (M=5.07; SD=2.8) experienced more risks than higher-education mothers (M=2.03; SD=2.0), but that even among low-education mothers, the quantity and type of risks that they experienced prenatally were related to maternal parenting at both 4, β = -.228, p < .01, R2 = .052, and 8 months, β = -.350, p < .01, R2 = .122. Mothers who experienced fewer risks on the index were rated as being more positive and less negative with their infants. They also provided higher quality home environments and more regularly engaged in parenting “essentials.” Subscale analyses revealed that the maternal readiness subscale was the most significant in predicting parenting at 4, β = .256, p < .01, and 8 months, β = -.325, p < .01, accounting for 6.5% and 10.5% of the variance, respectively. Within maternal readiness, child abuse potential and parenting styles were the most important variables. In combination, these two variables accounted for 9.8% of the variance in the parenting composite at 4 months and 13% of the variance at 8 months. Finally, total number of risks was associated with parenting quality such that mothers who reported a greater number of risks were less likely than mothers with fewer risks to engage in optimal parenting practices with their infants (p < .05). Discussion: The results suggest that prenatal cumulative risk has implications for the quality of maternal parenting during infancy, which is likely a mediating force for the relationship between parent sociodemographic risk and children’s developmental outcomes that has been documented in the literature. It is possible that identifying and intervening with maternal risks early on, particularly those related to cognitive readiness for parenting, could significantly improve both maternal parenting practices and later developmental outcomes for children. 24 SYMPOSIUM 1 Application of the E-RISK Index with Children with Special Needs: A Reliable and Easy-to Administer Screening Tool of Early Precursors of Likely Neglectful Behaviors Robin Gaines Lanzi1, Sharon Landesman Ramey1, Shannon Carothers1, Bette R. Keltner1, and the Centers for the Prevention of Neglect2 1 Georgetown University; 2Georgetown University, University of Alabama-Birmingham, University of Kansas, University of Notre Dame, University of Texas at Houston Contact: Jennifer Burke Lefever, 940 Flanner, Notre Dame, IN 46556, [email protected] Introduction: Children who are neglected have been shown to suffer adverse psychological and educational outcomes (De Bellis, 2005). With approximately 3 million referrals to Child Protective Services concerning the welfare of approximately 5 million children annually and about 879,000 of them substantiated cases of maltreatment (National Clearinghouse on Child Abuse and Neglect, 2002), this is a major issue. Although conceptual and operational definitions of child neglect have been discussed widely in the literature (e.g., Dubowitz et al. 2005; Runyan et al., 2005), no standardized operational definition of or method for identifying child neglect exists (Zuravin, 1998). This stems from a number of factors including varying state guidelines, differing theoretical research perspectives, and lack of sound methodological tools. Clearly, there is a need to adopt a more practically useful methodology for measuring both the risk for and the occurrence of child neglect so that practitioners, educators, and service providers can more reliably identify children at risk for child neglect and provide resources and services to prevent child neglect and associated poor developmental outcomes. Methods: The present study addresses this gap by developing a practically useful 4-item risk index of likely neglectful behaviors that can be administered during the prenatal period. The E-RISK index was developed as part of the Centers for the Prevention of Neglect — a 4-site prospective study of the early predictors and precursors of neglect in the first 3 years of life among children born to 682 adolescent and adult mothers. Results: The 4-item E-RISK index of early precursors of likely neglectful behaviors was comprised of 4 questions administered during the prenatal interview concerning: recognition and acceptance of new responsibility as a parent; certainty about ability to provide emotional support to child; certainty about ability to do good job raising child; and beliefs about parenting (i.e., indicate young children who feel secure often grow up not expecting too much). Negative responses to these questions were summed for the index. There was variation by mom group in the number of risk factors: 0 risk - 37% teen, 36% adult low, 60% adult high; 1 risk – 42% teen, 47% adult low, 35% adult high; 2 risks – 16% teen, 15% adult low, 5 % adult high; 3-4 risks 4% teen, 3% adult low, and 0 % adult high (p<.001). The E-RISK Index was significantly related to the home environment and independently observed mother-child interactions at the 4, 8, and 18 month home visits (see Table 1). The E-RISK index significantly predicted the child’s development at 24 months, particularly for the children of teen mothers in terms of their social and emotional development (see Table 2). We further examined which children were scoring 1 ½ SD below the mean on the Bayley and PLS and found that the E-RISK was a significant predictor for children of adult mothers (p<. 01) but not teen mothers. Discussion: We will discuss how we can reasonably adapt these questions as a screening tool for service providers and clinicians to best meet children’s developmental needs as well as supportive needs for children and families. Key References: De Bellis, M. D. (2005). The psychobiology of neglect. Child Maltreatment, 10, 150-172. Dubowitz H et al. (2005). Examination of a conceptual model of child neglect. Child Maltreatment, 10, 173-189. Zuravin, S. J. (1998). The ecology of child abuse and neglect: Review of the literature and presentation of data. Violence and Victims., 4(2), 101-120. Table 1. E-RISK Index is Significantly Related to HOME Environment and Mother-Child Interactions. 25 SYMPOSIUM 1 The Longitudinal Impact of Maternal Warmth and Hostility on Early Language Development: Comparisons of Adolescent and Adult Mothers Leann E. Smith1, Gitta Lubke2, Steve Warren3, and the Centers for the Prevention of Child Neglect University of Wisconsin-Madison; 2University of Notre Dame; 3University of Kansas; 4Georgetown University, University of Alabama-Birmingham, University of Kansas, University of Notre Dame, University of Texas at Houston Contact: [email protected] Waisman Center, 1500 Highland Ave., Madison, WI 53705 41 Introduction: The present study investigated changes in, and correlates of, maternal warmth and hostility during the first 18 months of life using latent growth curve (LGC) modeling. Participants included 682 mother-infant dyads from a multi-site, longitudinal study of first time mothers and their children, were recruited from hospitals, health clinics, social service agencies, and school-aged mothers’ programs. The sample consisted of 396 adolescent mothers and 286 adult mothers, ranging in age from 15 to 35 years (mean age = 20.73). Sixty-four percent of mothers were African-American, 18% Caucasian, 15% Latina, and 3% Multiracial/Multiethnic or Other. Most families were living in poverty with approximately 50% of mothers reporting annual incomes of $15,000 or less, 25% reporting between $15,000 and $30,000, and 25% reporting over $30,000. Methods: Mothers reported on expectations of paternal support and cognitive readiness to parent during the prenatal period. When children were 4, 8, and 18 months of age, mothers were rated on their warmth and hostility towards children during naturalistic home observations. The Preschool Language Scale, 4th Edition was used as a measure of children’s expressive communication and auditory comprehension at 24 months. In comparison with national norms (M=100, SD=15), children in both groups demonstrated belowaverage language scores. Children of teens had significantly lower average expressive language scores (M=91.6, SD=13.2) than children of adults (M=96.4, SD=12.1) and marginally significant lower scores on auditory language (M=90.3, SD=14.9) than children of adult mothers (M=94.2, SD=15.0), Furthermore, 43% of children of teens scored at least one standard deviation below the standardized mean on auditory comprehension, in comparison with 29% of adults. Similarly, 23% of children of teens were a standard deviation below the mean on expressive communication, in contrast with 12% of children of adults. Results: LGC analyses revealed that for both adolescent and adult groups, warmth did not change from 4 to 18 months, whereas hostility was increasing over the same time period. Adolescents, however, were becoming hostile more quickly than adults. Adolescents also had lower levels of initial warmth and higher levels of initial hostility than adults. Rate of change in hostility was a marginally significant predictor of expressive language for adolescents, but not adults, such that teens who changed at a slower rate had children with more-optimal language development. Maternal expectations of support from the children’s fathers were associated with lower levels of hostility at 4 months. High expectations of father support were also linked with slower increases in hostility over time. Although warmth did not change over time, prenatal cognitive readiness in both teens and adults was related to higher levels of warmth at 4 months, which in turn, predicted children’s expressive language at 24 months. Discussion: The present study highlights how different dimensions of parenting change uniquely across time; in this case, maternal warmth was stable from 4 to 18 months, whereas hostility increased as children aged. The current findings also suggest that although adolescents may display lower levels of positive parenting behaviors than adults, the parenting processes appear to be similar across groups. As such, new mothers, regardless of their age, may benefit from interventions aiming to increase cognitive readiness and social support. 26 SYMPOSIUM 1 Prenatal Maltreatment Risk, Early Parenting Behaviors, and Children’s Emergent Regulation Julie Schatz1, John G. Borkowski1, and the Centers for the Prevention of Child Neglect21University of Notre Dame; 2Georgetown University, University of Alabama-Birmingham, University of Kansas, University of Notre Dame, University of Texas at Houston Contact: [email protected], 1602 N. Ironwood Dr., South Bend, IN 46635 Introduction: There is consistent research evidence supporting parenting behaviors as the mechanisms responsible for compromising children’s subsequent regulation. Because the effects of maltreatment on children’s regulation is well-documented in school-aged children with evidence suggesting even earlier dysfunction, elucidating the relationships among maltreatment risk, parenting practices, and toddlers’ developing regulation becomes especially important for the prevention of later childhood psychopathology. The present study explores the relationship between early maltreatment risk and parenting behaviors over the course of the first 18 months of life. This study also examines predictors of change in the parenting behaviors over time and how change serves as the mechanism responsible for early maternal maltreatment risk’s influence on children’s developing self-regulation. Methods: One hundred eighty-nine mother-child dyads were drawn from the ongoing Parenting for the First Time Project which was designed to understand low-levels of neglectful parenting among mothers and their first-born children. Both laboratory-based and home-based interviews and observations were employed in the design with assessments completed prenatally, at 4, 6, 8, and 18 months, and 24 months. During the prenatal visit, maternal child abuse potential was measured with an abbreviated form of the Child Abuse Potential Inventory (CAPI) and expectations about children’s development and behaviors were assessed with the Parenting Style Expectations Questionnaire (PSE). Additional maltreatment risk factors were assessed at 6 months with self-report measures of the Childhood Trauma Questionnaire (CTQ) and History of Neglect which measures maternal childhood experiences of neglect and abuse. At 4, 8, and 18 months, parenting was assessed by observational ratings of 7 parenting skills (i.e. protect, comfort, guide, celebrate, language stimulation, mentor/rehearse, recognize/respond, and encourage exploration). Parenting behaviors, including display of positive affect, warmth/sensitivity, contingent responsiveness, and general verbalness, were also coded during an observational period. In addition, the HOME and the Supplemental to the Home Scale for Impoverished Families (SHIF) rating scales were obtained as measures of the parenting environment. Children’s regulation was measured at 24 months with both a mother report and an observational rating completed by a child assessor after developmental testing. The Infant-Toddler Social and Emotional Assessment (ITSEA) measured children’s early emotional and behavioral regulation abilities. The Bayley Rating Scale (BRS) was also used to index children’s regulation with items drawn from two factor scales: the emotion regulation and orientation/engagement scales that address emotion and cognitive regulation components. Results: The full structural equation model consisted of the constructs of maltreatment risk, parenting at 4, 8, and 18 months, and children’s regulation at 24 months. Early maltreatment risk was expected to predict early parenting which, in turn, would predict later parenting and later parenting was expected to predict regulation. Preliminary analyses showed early maltreatment risk to be a significant predictor of parenting at 4 months. Parenting at 8 and 18 months were each strongly predicted by the prior parenting time-point. Preliminary results also suggested that certain parenting behaviors changed during the first 18 months of parenting. Discussion: Overall, the results highlight the role of early maltreatment risk in determining early parenting which predicts subsequent parenting behaviors and later children’s regulation. Changes in parenting behaviors were also evident. The results highlight the importance of early risk assessment to optimize parenting and foster children’s regulatory development. 27 SYMPOSIUM 1 Obstacles to Service Receipt for Children with Early Indicators of Developmental Delays Carol E. Akai1, Leann E. Smith2, Lorraine V. Klerman3, Bette R. Keltner4, Kristi C. Guest5, and the Centers for the Prevention of Child Neglect6 1 University of Notre Dame; 2University of Wisconsin; 3Brandeis University; 4Georgetown University; 5 University of Alabama-Birmingham; 6Georgetown University, University of Alabama-Birmingham, University of Kansas, University of Notre Dame, & University of Texas at Houston Contact: [email protected], Notre Dame Center for Children and Families 1602 N. Ironwood Dr., South Bend, IN 46635 Introduction: According to many state guidelines provided by the Individuals with Disabilities Education Improvement Act of 2004 (PL 108-446), children with at least a 25% delay in cognitive, language, motor, adaptive, or social-emotional development are eligible for early intervention services. Children also qualify for services if they have a 20% delay in at least two of these domains. The present study revealed that although many children qualified for services, few mothers were aware of their children’s developmental problems, and hardly any children were identified by medical professionals as having problems that may interfere with development. Methods: Data were drawn from the multi-site, longitudinal Parenting for the First Time study following primiparous mothers and their children over time. Teen and adult mothers of infants in South Bend, IN, Washington, D. C., Birmingham, AL, and Kansas City, KS participated in the study. Children were ethnically diverse and had high levels of demographic risk for developmental delays; two-thirds of families reported annual incomes below $20,000 and three-fifths of mothers had not completed high school. Cognitive development (Bayley Mental), language development (Preschool Language Scale), adaptive development (Bayley Behavior Ratings), and social-emotional development (Brief Infant-Toddler Social and Emotional Assessment) were measured for children at 12 months and 24 months of age. During these times, mothers were interviewed about children’s development as well as indications of developmental problems from medical professionals. Results: Based on national norms, children’s delays in each developmental domain were calculated. According to IDEA guidelines, 13% of children were eligible for intervention services at 12 months and 28% were eligible at 24 months. Of the 49 eligible children at 12 months, only 2 were identified by medical professionals as having problems that could interfere with development. Likewise, only 9 out of 85 eligible children at 24 months were identified having problems. Most eligible children were, however, regularly receiving medical services. Much like doctors, few mothers noticed problems early; at 12 months, only 9% of mothers reported being “worried” or “very worried” about their children’s behavior, emotions, and relationships and only 7% reported being “worried” or “very worried” about language development. Discussion: Percentages of change in delay status within each developmental domain from 12 to 24 months as well as change in overall eligibility status from 12 to 24 months were also determined. More than one in five children who were not eligible for services at 12 months became eligible at 24 months (indicating they had “gotten worse”). Yet, for the most part, developmental problems in this at-risk sample remained unnoticed and untreated. In order to promote optimal development among children in poverty, families need to be aware of and have access to early intervention services. 28 Symposium 2 S Y M P O S I U M 2 Down Syndrome, Aging, and Alzheimer’s Disease: Practical Insights from Prospective Studies Chair: Wayne Silverman Kennedy Krieger Institute and Johns Hopkins University School of Medicine 29 SYMPOSIUM 2 Down Syndrome, Aging, and Alzheimer’s Disease: Practical Insights from Prospective Studies Chair: Wayne Silverman, Kennedy Krieger Institute and Johns Hopkins University School of Medicine β42,Incident Dementia and Mortality in Down Elevated Plasma Amyloid β-Peptide Aβ Syndrome Nicole Schupf1, Bindu P. Patel2, Deborah Pang2, Warren B. Zigman3, Pankaj D. Mehta3, Richard P. Mayeux2, Wayne Silverman4 1 Columbia University, G. H. Sergievsk Center,2Columbia University Medical Center, 3NYS Institute for Research on Developmental Disabilities,4Kennedy Krieger Institute and Johns Hopkins School of Medicine Apolipoprotein ε4 is Associated with Increased Mortality Risk in Nondemented Adults with Down Syndrome Warren B. Zigman1,Edmund C. Jenkins1,Benjamin Tycko2,Nicole Schupf1,3,Wayne Silverman4 1 New York State Institute for Basic Research in Developmental Disabilities,2The Taub Institute for Research on Alzheimer’s Disease and the Aging Brain, Columbia University College of Physicians and Surgeons,3Columbia University, G. H. Sergievski Center,4Kennedy Krieger Institute and Johns Hopkins University School of Medicine “Mild Cognitive Impairment” and Behavioral Concerns in Adults with Down Syndrome Tiina K. Urv1,Sharon Krinsky-McHale2,Warren Zigman2,Wayne Silverman3 1 University of Massachusetts Medical School–Shriver Center,2New York State Institute for Basic Research in Developmental Disabilities,3Kennedy Krieger Institute and Johns Hopkins University School of Medicine Are Cholinesterase Inhibitors Effective for Adults with Down Syndrome? Wayne Silverman1,Warren Zigman2 ,Nicole Schupf2,3,Tiina Urv4,Robert Ryan2 1 Kennedy Krieger Institute and Johns Hopkins University School of Medicine,2New York State Institute for Basic Research in Developmental Disabilities,3Columbia University, G. H. Sergievski Center,4University of Massachusetts Medical School–Shriver Center 30 SYMPOSIUM 2 β42, Incident Dementia and Mortality in Elevated Plasma Amyloid β-peptide Aβ Down Syndrome Nicole Schupf1, Bindu P. Patel2, Deborah Pang2, Warren B. Zigman3, Pankaj D. Mehta3, Richard P. Mayeux2, Wayne Silverman4, 1 Columbia University Medical Center, New York, NY, USA; 2Columbia University Medical Center, New York, USA; 3NYS Institute for Research on Developmental Disabilities, Staten Island, New York, 4Kennedy Krieger Institute and Johns Hopkins School of Medicine, Baltimore, MD, USA. Contact: Nicole Schupf, [email protected] Background: Deposition of the amyloid beta peptide, β42, is thought to be an important initial step in the pathogenesis of Alzheimer’s disease (AD). Individuals with Down syndrome (DS) have both increased levels of β peptides and increased risk for Alzheimer’s disease. Objectives: To examine the relation of plasma levels of β42 and β40 to risk of dementia in nondemented adults with DS and to all-cause mortality. Methods: Plasma β42 and β40 levels were measured at initial examination for 204 adults with DS. Participants were assessed for cognitive and functional abilities, behavioral/ psychiatric conditions and health status at 14-18 months over four cycles of data collection. Plasma levels of β42 and β40 levels were measured using a combination of monoclonal antibody 6E10 (specific to an epitope present on 1-16 amino acid residues of β) and rabbit antisera R165 (vs. β42) and R162 (vs. β40) in a double antibody sandwich ELISA. Results: Among participants who were nondemented at baseline, those in the two highest tertiles of plasma β42 levels were more than two times as likely to develop AD as those in the lowest tertile. Compared with participants without AD, participants with prevalent AD had higher levels of plasma β42, but did not differ in levels of plasma β40. Among all participants, those in the highest tertile of plasma β42 at baseline were two and one-half as likely to die over the study period as those in the lowest two tertiles. Conclusions: Elevation in plasma β42 peptide level may serve as a biological marker sensitive to the development and progression of AD and to risk of death. Our findings also support the hypothesis that individual differences in β processing or deposition, distinct from more general overexpression of APP in Down syndrome, may act as an initial step in the pathogenesis of AD. Supported by New York State trough its Office of Mental Retardation and Developmental Disabilities, as well as by Grants RO1 AG014763 (from the National Institute on Aging) and PO1 HD035897 & RO1 HD037425 (from the MR/DD Branch of the National Institute of Child Health and Human Development). 31 SYMPOSIUM 2 Apolipoprotein ε4 is Associated with Increased Mortality Risk in Nondemented Adults with Down Syndrome 1 Warren B. Zigman1, Edmund C. Jenkins1, Benjamin Tycko2, Nicole Schupf1,3, Wayne Silverman4 New York State Institute for Basic Research in Developmental Disabilities, 1050 Forest Hill Road, Staten Island, New York 10314. 2The Taub Institute for Research on Alzheimer’s Disease and the Aging Brain, Columbia University College of Physicians and Surgeons, New York, NY. 3 Columbia University, G. H. Sergievski Center, New York, NY. 4Kennedy Krieger Institute and Johns Hopkins University School of Medicine, Baltimore, MD. Contact e-mail: Warren Zigman, [email protected] Down syndrome is characterized by increased mortality rates, both during early and later stages of life. Causes of increased mortality early in life are primarily due to an increased incidence rate of congenital heart disease, while causes of higher mortality rates later in life may be due to a number of factors, including Alzheimer’s disease (AD) and a more general tendency toward premature aging. A welldocumented relationship has been noted between the occurrence of sporadic and/or familial late onset Alzheimer’s disease and the gene for apolipoprotein E (APOE), encoded for by three alleles (APOE ε2, ε3, and ε4) and located on chromosome 19. In the typically developing population and in adults with Down syndrome, a relationship has been noted between the occurrence of late onset AD and APOE; the APOE ε4 genotype has been associated with greater accumulation of beta-amyloid protein in the elderly with and without Down syndrome and with a significantly increased age-specific risk for AD. APOE genotype also has been related to survival in the general population, but its strong association with AD makes interpretation of findings difficult. Previous studies of adults with Down syndrome have consistently found that the presence of the APOE ε2 allele increases longevity and reduces the risk of dementia, while the APOE ε4 allele increases risk for dementia. In contrast, reduced frequencies of the APOE ε4 allele among elderly groups have been reported, suggesting that the APOE ε4 allele may be associated with early mortality in this population. To disentangle effects of dementia from those of aging, we compared mortality risk as a function of APOE genotype in 146 nondemented adults with Down syndrome in a prospective study. We computed cumulative survival probability using Kaplan-Meier survival analysis and Cox proportional hazards modeling to evaluate the association between APOE genotype status and mortality. Individuals with at least one APOE ε4 allele were approximately five times more likely to die within a 5- to 7-year study follow-up period than those without an APOE ε4 allele, adjusting for age at entry into the study, sex, body mass index, level of mental retardation, and cholesterol level (Hazard Rate = 5.25, p = .045, 95% CI: 1.04, 26.48). These results suggest that the APOE E ε4 allele has an independent and strong relation to early mortality. Whether there are gene-environment or gene-gene interactions that are responsible for these findings remain to be determined. Clearly, though, these results imply that APOE plays an important and relatively direct role in determining longevity. (Supported by New York State through its OMRDD, and by Grants P01 HD035897, R01 HD037425 and R01 AG014673 from NIA and NICHD.) 32 SYMPOSIUM 2 “Mild Cognitive Impairment” and Behavioral Concerns in Adults with Down Syndrome Tiina K. Urv1, Sharon Krinsky-McHale2, Warren Zigman2, & Wayne Silverman3 1 University of Massachusetts Medical School – Shriver Center, 200 Trapelo Road, Waltham, MA 02452. 2 New York State Institute for Basic Research in Developmental Disabilities. 3 Kennedy Krieger Institute and Johns Hopkins University School of Medicine, Baltimore, MD. Contact e-mail: Tiina Urv, [email protected]. Individuals with Down syndrome (DS) are at increased risk for developing Alzheimer’s disease, but there is wide variation in age at onset of dementia. It is therefore imperative to identify those individuals who are at greater and lesser risk for progressing to clinical dementia to enable individuals to receive potential treatment and allow caregivers to develop long-term care plans. In the general population, mild cognitive impairment (MCI) is characterized by cognitive decline of insufficient severity for a diagnosis of dementia. It has been proposed to be a transitional state between normal aging and early dementia, with individuals having MCI converting to clinical dementia at rates of 10% - 15% per year. The criteria for MCI in the general population include: memory complaints, objective memory impairment, normal general cognitive functioning, and no significant declines in daily living skills. While not part of the diagnostically defining features, MCI is associated with increased risk of neuropsychiatric symptoms. Changes characteristic of MCI can be difficult to identify in any population having pre-existing cognitive impairments, and differences between MCI and normal age-associated declines in cognition can be extremely subtle. This study employed an operational definition of MCI appropriate for the population with DS (MCI-DS) to examine behavior problems that become apparent to caregivers as declines in memory begin but before frank dementia is present. We examined changes in the presentation of maladaptive behaviors (using the Reiss Screen) in 72 adults with DS [14 males (Mean age = 51, SD = 4; Mean IQ = 39, SD = 7) and 58 females (Mean age = 51, SD = 6; Mean IQ = 38, SD = 7)]. These individuals were divided into two groups. Adults with MCI-DS (n=27) experienced a decline of 15% or more on our Selective Reminding Test of episodic memory but showed stability in adaptive behavior (declined less than 15%) during a 14-18 month interval. A comparison group (n=45) displayed stability in both selective reminding and adaptive behavior during a 14-18 month interval. [For inclusion, participants had to have a baseline Selective Reminding score well above floor (> 20 on a scale from 0 to 48).] Each of the 38 maladaptive behaviors in the Reiss Screen was categorized as “stable/getting better” or “getting worse” over the 14-18 month interval, and groups were compared employing a series of 2 X 2 chisquare analyses. Participants in the “MCI-DS” group were significantly more likely to exhibit change in the severity of tantrums (2.3% vs 29.6%), hostile behavior (4.5% vs 22.2%), and delusions (0 vs 7.4%), 4.99 d” x2 (1, N = 72) d” 11.31, .001 < ps <.05), suggesting that some specific concerns in maladaptive behavior emerge in conjunction with relatively modest changes in cognitive functioning. Additional chi-square analyses examined the subsequent dementia status within these Groups. A greater proportion of individuals in the group with MCI-DS progressed to dementia (2.2% vs 20%), x2(1) = 8.5, p < .01. A preliminary descriptive examination of the three significant behaviors distinguishing between the Groups indicated that individuals displaying changes in hostile behavior and delusions were more likely to develop dementia than were other people. This suggests that change in specific maladaptive behaviors may be useful as “red flags,” alerting caregivers to the presence of possible declines in cognition that might otherwise go unrecognized. Supported by New York State through its OMRDD, and by Grants P01 HD035897 (Silverman), R01 HD037425 (Zigman) and R01 AG014673 (Schupf) from the NICHD (MR/DD Branch) and NIA. 33 SYMPOSIUM 2 Are Cholinesterase Inhibitors Effective for Adults with Down Syndrome? 1 Wayne Silverman1, Warren Zigman2, Nicole Schupf2,3, Tiina Urv4, and Robert Ryan2. Kennedy Krieger Institute and Johns Hopkins University School of Medicine, 707 North Broadway, Suite 222s, Baltimore, MD 21205, USA. 2New York State Institute for Basic Research in Developmental Disabilities, Staten Island, New York. 3Columbia University, G. H. Sergievski Center, New York, NY. 4 University of Massachusetts Medical School – Shriver Center, Waltham, MA. Contact e-mail: Wayne Silverman, [email protected] Alzheimer’s disease (AD) is the most prevalent cause of progressive dementia in old age, and risk is dramatically increased among adults with Down syndrome (DS). No treatments targeting the underlying pathology are currently available, but cholinesterase inhibitors are frequently prescribed to slow the rate of declines in cognition and function. Studies of efficacy have produced mixed results in both the general and DS populations, but there is general agreement that dramatic improvements in status are not to be expected, and that tolerance to side effects has varied among individuals. We have been conducting a large, prospective study of aging and dementia among adults with DS 45 years of age and older. Data were available on two separate occasions 14-18 months apart for 25 women and 9 men taking Aricept, the most commonly prescribed cholinesterase inhibitor. These individuals, along with 188 peers with DS not taking a cholinesterase inhibitor (141 women and 47 men), were divided into four groups based upon dementia status: (a) No Dementia, (b) Questionable, meaning that some declines have occurred but of insufficient severity to meet criteria for dementia, (c) Possible Dementia, and (d) Definite Dementia. Assessments of cognition included tests of episodic memory, verbal fluency, figure copying, block design, and two separate tests of mental status [as described in Silverman, et al. (2004). AJMR, 109, 111-125]. Informant interviews included the AAMD Adaptive Behavior Scale (1974) and the Dementia Questionnaire for Persons with Mental Retardation (DMR - Evenhuis, 1995). Informants were most likely aware of medication status, but staff conducting assessments were not. Results were analyzed employing Group (Aricept/Control) by Time by Dementia Status analyses of variance. No 3-way interactions were significant, and Group by Time interactions failed to approach signficance (p > .15) for most measures. Three Group by Time interactions were significant, however: (a) total recall for our Selective Reminding test of episodic memory, F(1,130) = 7.3, p < .01, (b) the IBR Mental Status Exam, F(1,137) = 16.4, p < .0001, and (c) the DS Mental Status Exam (Haxby, 1989), F(1,147) = 4.3, p < .05. (Degrees of freedom varied because not all participants completed all tests.) All three interactions were due to greater declines in the group taking Aricept. Taken together, results provide fairly convincing evidence that this medication lacks efficacy, at least for adults with DS, even when its side effects do not preclude use. (Supported by N.Y.S. through its Office of Mental Retardation and Developmental Disabilities, and NIH grants PO1 HD035897, RO1 HD037425, and R01 AG014673.) 34 Symposium 3 S Y M P O S I U M 3 Siblings of Individuals with Developmental Disabilities Across the Life Span Chair: Ann Kaiser Vanderbilt University Discussant: Gael Orsmond Boston University 35 SYMPOSIUM 3 Siblings of Individuals with Developmental Disabilities Across the Life Span Chair: Ann Kaiser, Vanderbilt University Discussant: Gael Orsmond, Boston University Adult Siblings of Persons with Disabilities: Findings from a National Survey Richard C. Urbano & Robert M. Hodapp 1 Vanderbilt University Sibling Relationships and Psychological Well-Being in Adults with and Without Siblings with Intellectual Disabilities Richard Hastings1, Mairead Doody1, Sarah O’Neill2 & Ian Grey2 1 University of Wales Bangor 2 Trinity College Dublin Parent – Sibling Communication in Families of Children with Autism, Down Syndrome, and Sickle Cell Disease J. Carolyn Graff University of Tennessee Health Science Center 36 SYMPOSIUM 3 Adult Siblings of Persons with Disabilities: Findings from a National Survey Richard C. Urbano, & Robert M. Hodapp Vanderbilt University Although we know that most adult siblings are doing well and have reasonably good relationships with their brother/sister with disabilities, studies generally involve the most involved siblings, and female as opposed to male siblings. Little attention has generally been paid to etiology. This study examines adult siblings and sibling relationships from a large-scale, national, web-based survey. We were interested in: (1) female vs. male siblings, (2) close vs. less close siblings; and (3) siblings of individuals with different types of disability. Method: Adult siblings of 1,166 persons with disabilities participated in this study. Of these participants, 78.4% were female (910 F; 251 M) and 284 were siblings of persons with Down syndrome; 176 of persons with autism; and 706 of persons with other forms of intellectual, physical, sensory, and emotional disabilities (Other Disabilities group). All participants answered an anonymous, web-based Adult Sibling Survey hosted by the Vanderbilt Kennedy Center. The survey, which took about 25 minutes to complete, asked siblings about their and their family’s demographics; their relationship and time spent with their brother/sister with disabilities; health, depression, well-being, and rewards of being a sibling; and current and anticipated service needs. Results: No gender differences emerged for the overall quality of the relationship between male and female siblings, although two differences were noted. First, compared to U.S. Census norms, female (but not male) siblings seemed to delay marriage and childbearing and were less likely to be divorced. Compared to male siblings, females had more contact with their brother/sister with disabilities, t = 3.11, p < .002, and reported that being a sibling to a brother/sister with disabilities has made them more empathetic, understanding of differences, compassionate, and responsible (all p’s < .0001). In families of 3 or more children, siblings who are closest, close but not closest, and not close with their brother/sister with disabilities differed in the time spent in joint activities, F (2, 796) = 53.51, p < .0001, and in a lessened sense of becoming more compassionate, empathetic, or responsible from having been a sibling (p’s < .001). Compared to siblings of persons with autism and with other disabilities, higher proportions of siblings of persons with Down syndrome spent large amounts of time (5+ hrs./month)—and fewer spent little time (<2 hrs)—with their brother/sister with disabilities, ÷2 = 13.09, p < .011. Siblings of persons with Down syndrome perceived themselves to have a closer, warmer relationship with their brother/sister, F (2, 1163) = 18.18, p < .0001. Age-related changes differed by type of disability, with relationship quality decreasing when the person with Down disabilities was aged 30+ and when the person with autism was 45+ (agegroup X disability, F (4, 1134) = 3.87, p < .004). Conclusion: Although adult siblings of persons with disabilities remain an under-studied population, this study expands our knowledge of their characteristics and relationships. 37 SYMPOSIUM 3 Sibling Relationships and Psychological Well-Being in Adults with and Without Siblings with Intellectual Disabilities Richard Hastings1, Mairead Doody1, Sarah O’Neill2 & Ian Grey2 1 University of Wales Bangor 2 Trinity College Dublin Correspondence: Richard Hastings PhD, School of Psychology, University of Wales Bangor, Bangor, Gwynedd, LL57 2AS, Wales, UK. E-mail: [email protected] Although there has been considerable research interest in younger siblings of children with developmental disabilities, few researchers have studied the experiences of adult siblings of people with intellectual disabilities. The main aims of the present study were: 1. To compare sibling psychological adjustment and dimensions of the sibling relationship between adult siblings who either do or do not have a brother or sister with intellectual disabilities, and 2. To explore correlates of sibling adjustment and relationships for adult siblings of individuals with intellectual disabilities. An exploratory aim was to adapt a measure of parental positive perceptions for siblings to establish its utility for future research. Participants were 123 adults who did not have a sibling with disability and 63 adults who had a sibling with intellectual disabilities. Using an Internet survey in the UK and Ireland, siblings were asked to report on dimensions of their sibling relationships as adults (contact with the sibling, warmth, conflict, and rivalry), and their own psychological well-being. For a sub-sample, the emotional dimension of the sibling relationship was assessed using the Five Minute Speech Sample measure of Expressed Emotion (specifically, Criticism). Participants with a sibling with intellectual disability also completed an adapted version of the Positive Contributions Scale of the Kansas Inventory of Parental Perceptions. Group comparisons showed no differences in rivalry, conflict, criticism, or psychological well-being. Control participants were warmer, lived further away, and saw their siblings less frequently than siblings of people with intellectual disabilities. Siblings of people with intellectual disability were telephoned less frequently by their brother or sister. Using correlation and regression analyses, a number of predictors of sibling relationship dimensions were identified for the siblings of people with intellectual disabilities. Warmth was higher when the brother or sister had mild/ moderate as opposed to severe/profound intellectual disability, when the sibling also expressed more positive perceptions, and when telephone contact was more frequent. Conflict was higher when the siblings had poorer psychological well-being, were living alone, and were younger than their brother or sister with intellectual disability. Finally, criticism and positive perceptions were negatively associated. Although these data are consistent with much sibling research suggesting little evidence of negative effects of people with intellectual disabilities on their siblings, there may be some subtle differences that are worthy of exploration in future research. Some of these differences may be important to understand perhaps in later life when siblings may become more involved as carers. Siblings also report considerable positive perceptions of their brother or sister with intellectual disability, and these experiences need to be more fully researched. 38 SYMPOSIUM 3 Parent – Sibling Communication in Families of Children with Autism, Down syndrome, and Sickle Cell Disease J. Carolyn Graff University of Tennessee Health Science Center; 711 Jefferson Avenue, Memphis, TN 38105 Contact: [email protected] Introduction: Integrating genomics, the translation of knowledge of the human genome into benefits for children with genetic disorders and their family members, is critical to improving the health and well being of these individuals. Researchers and professionals have focused on children with genetic disorders and their parents and turn their attention to siblings when they are suspected of being at risk for or having a genetic disorder or other problems. Although a non-categorical approach has been used to consider the impact of a disorder on children and their families (Stein & Jessop, 1989), differences can be expected to exist across genetic disorders. The purpose of this study is to describe the structure, content, and function of parent-sibling communication about autism, Down syndrome (DS), and sickle cell disease (SCD); describe factors within and outside the parent-sibling dyad that influence their communication; compare and contrast parent responses from these groups; and consider the relevance of the non-categorical approach for parent and sibling experiences. Methods: Separate audio taped focus group interviews were held with parents of children with autism (n = 12) and DS (n = 10). Parents were recruited from local support groups and using snowball or network sampling. Recruitment of parents of children with SCD is underway through the St. Jude Children’s Research Hospital. SCD focus group interviews will be held next month. Transcribed data have been entered into NVivo7 and coded using interpretational analysis (Tesch, 1990). Categories emerging from coded data were analyzed further to identify themes. Themes and categories were examined in the context of select factors from Fitzpatrick and Caughlin’s (2002) theoretical approaches to family relationships. Results: Parents of children with autism initiated communication with siblings to explain the child’s behaviors, therapy, and need for siblings to help with therapy or chores. Siblings were frustrated with their brother or sister’s behaviors and wanted more attention and to find something to help their brother or sister. Unpredictable behaviors of children with autism influenced parent-sibling communication. In the DS group, siblings initiated discussions with their parents to clarify the present health and educational status of children with DS, learn more about DS, and discuss their own future and the future of children with DS. Health problems of children with DS and the unknown future influenced parent-sibling communication. Siblings in both groups were advocates and protectors of their brother or sister. Analysis of data from the SCD focus group interviews will be included in the final presentation. Discussion: Although parents and siblings in the autism and DS groups have similar experiences and use similar strategies to understand and adjust to changes within their family, they experience different challenges based on the behaviors, health, and functioning ability of the child with a genetic disorder. Further exploration of these similarities and differences with siblings should be conducted to tailor sibling and parent supports that build on existing individual and family strengths and resources. Fitzpatrick, M.A., Caughlin, J.P. (2002). Interpersonal communication in family relationships: In M.L. Knapp & J.A. Daly (Eds.), Handbook of interpersonal communication (3rd ed.) (pp. 726-777). Thousand Oaks, CA: Sage. Stein, R.E., & Jessop, D.L. (1989). What diagnosis does not tell: The case for a noncategorical approach to chronic illness in childhood. Social Science and Medicine, 29(6), 769-778. Tesch, R. (1990). Qualitative research: Analysis types and software tools. New York, NY: Falmer Press. 39 Symposium 4 S Y M P O S I U M 4 Asian Families of Children with Developmental Disabilities Chair: Jin Y. Shin Department of Psychology, Hofstra University Discussant: Laraine M. Glidden Center on Health and Education, Georgetown University 40 SYMPOSIUM 4 Asian Families of Children with Developmental Disabilities Chair: Jin Y. Shin, Department of Psychology, Hofstra University Discussant: Laraine M. Glidden, Center on Health and Education, Georgetown University Agreement on Childhood Disability between Parents and Teachers in Vietnam Jin Y. Shin,12 Nguyen Viet Nhan, 3 Stavros S. Valenti,1 Kathleen Crittenden,4 Michel Flory 2 1 Department of Psychology, Hofstra University 2 Infant Development, New York State Institute for Basic Research in Developmental Disabilities 3 Hue Medical College, Vietnam 4 University of Illinois at Chicago A Comparison of Perspectives on Sibling Relationships Involving an Individual with Special Needs Sun Young Ryu Department of Health and Behavioral Studies, Teachers College, Columbia University Parent Language Input and Its Impact on the Engagement of Children with Autism: The Chinese Perspective Peishi Wang Graduate Program in Special Education, Department of Educational and Community Programs, Queens College, City University of New York 41 SYMPOSIUM 4 Agreement on Childhood Disability between Parents and Teachers in Vietnam Jin Y. Shin,1,2 Nguyen Viet Nhan, 3 Stavros S. Valenti,1 Kathleen Crittenden,4 Michel Flory 2 1 Department of Psychology, Hofstra University, 2 Infant Development, New York State Institute for Basic Research in Developmental Disabilities 3 Hue Medical College, Vietnam 4 University of Illinois at Chicago Contact: [email protected] 135 Hofstra University, Hempstead, NY 11549 Introduction: This research examined the agreement on disability among the teachers and parents of children with cognitive delays in Vietnam. While the diagnosis and classification of children with disabilities are persistent concerns in all clinical and educational services, these concerns are magnified in developing countries. Standardized diagnostic and assessment tools and systems either do not exist or are not readily available in many developing countries. While we attempted to identify children with cognitive delays with simple strategies that include screening procedures, we also documented the discrepancies among parents and teachers in perceiving the level of disability in their children. Methods: Teachers (n = 57) in kindergarten programs (for children aged 2 to 6) who identified children as having cognitive delays, and the mothers (n = 106) and fathers (n = 93) of these children rated the child’s level of disability based on the ABILITIES Index (Simeonsson & Bailey, 1988). Results: The teachers rated the level of child’s functioning more severely, especially in the areas of intellectual disabilities and behavior problems, than did mothers and fathers. There was more agreement between mothers and fathers than between parents and teachers. The teachers and fathers agreed the least in most areas of child’s level of functioning. Logistic regressions examining the factors that predicted agreement or disagreement among parents and teachers revealed that when the child’s disability was genetically related (e.g., Downs Syndrome) or physical (e.g., cerebral palsy) it was more likely that teachers and parents agreed. Mothers and fathers were more likely to agree on the level of child’s intellectual disability when their children were older. Discussion: Agreement and disagreement on children’s intellectual and other disabilities is discussed in the context of Vietnam. The lower agreement between teachers and parents could be due to lack of information among the parents regarding intellectual and developmental disabilities and different beliefs and stigma about having a child with disability. 42 SYMPOSIUM 4 A Comparison of Perspectives on Sibling Relationships Involving an Individual with Special Needs Sun Young Ryu Department of Health and Behavior Studies Teachers College, Columbia University Contact: [email protected] Introduction: Sibling relationships are one of the most long-lasting and enduring human relationships. Sibling relationships involving an individual with special needs are critical for the well-being of siblings with special needs because typically developing siblings are often named by the parent to be potential caregivers and sources of support for their siblings with special needs after parents’ death. However, perspective differences associated with family roles and different cultures have not been documented in terms of sibling relationships, family relationships, sibling self-concept, and sibling commitment. Methods: The current study investigated perspectives on family relationships, sibling relationships, sibling self-concept, and sibling commitment between typically developing siblings and their parents from American and Korean cultural backgrounds. 50 American and 66 Korean young adults whose ages were between 18 and 30 and who had at least one sibling with special needs, and one of their parents participated in the study. Participants responded to self-administered questionnaires that measured the four dependent variables. Results: Sibling groups and parent groups reported significantly different perspectives for overall family relationship and sibling commitment. Parents were more positive than their typically developing children for family relationships, and typically developing siblings were more positive than their parents for sibling commitment. American groups and Korean groups reported significantly different perspectives for overall family relationship and sibling self-concept. The American groups were more positive than the Korean groups for both family relationship and sibling self-concept. Especially on sibling commitment, American siblings demonstrated present-focused and affective-oriented sibling commitment while Korean siblings showed future-focused and instrumental-oriented sibling commitment. For example, about 40% of the typically developing American siblings expected their siblings with special needs to live with them whereas about 80% of typically developing Korean siblings expected their siblings with special needs to live with them after their parents’ death. Some of the demographic variables were significantly related to the four measures. Discussion: Multi-role and multicultural perspectives on those measures can be useful in planning and coordinating services such as guardianship, living arrangement, and long-term financial support for individuals with special needs. Future research should examine in particular the role of age and gender in sibling perspectives. 43 SYMPOSIUM 4 Parent Language Input and Its Impact on the Engagement of Children with Autism: The Chinese Perspective Peishi Wang Graduate Program in Special Education, Dept of Educational and Community Programs, Queens College, City University of New York Contact: [email protected] Introduction: Research on parent-child interaction in the U.S. reported that children with autism tend to demonstrate less compliance and more avoidance than children in the nonautistic group. Several studies revealed that parents of children with autism used more attention getting behaviors, increased their physical proximity, and used more nonverbal prompts than parents in the nonautistic group. Some speculated that mothers of children with autism primarily used control behaviors to support and encourage their child to participate in the interaction. There is very little research done in the area of interactions between parents and children with autism in the People’s Republic of China. The current study aims to explore the pattern of Chinese parents language input when interacting with their children with autism and the impact it has on the engagement of their children. Methods: A pretest-posttest group design was implemented for this study. Twenty-seven parents of children with autism in the Northeastern region of China were randomly assigned to either the training or the control group. Parents received a total of twenty hours of training in a format that included both group and individual sessions. The parent training program was based on principles and tactics derived from applied behavior analysis, naturalistic teaching and the TEACCH philosophy. Parent-child interactions were examined using videotaped observations at their homes and analyzed using the Kid Talk Code (Kaiser et al., 2004). Results: Analysis of this data set is ongoing. Information on the types of language input (such as modeling, expansions, instructions, praise, etc) that parents provided and its impact on the child’s engagement during a free play interaction will be presented. Group comparisons will be made between pre and post tests on the types of language input and children’s engagement behavior. Discussion: Results from this study will increase our understanding of the patterns of Chinese parentchild interactions. Implications for future parent training programs will be highlighted. 44 Symposium 5 S Y M P O S I U M 5 Children with Down Syndrome: Parent and Child Supports Chair: Mary Ann Romski Georgia State University Discussant: Nancy Brady University of Kansas, Lawrence,Kansas 45 SYMPOSIUM 5 Children with Down Syndrome: Parent and Child Supports Chair: Mary Ann Romski, Georgia State University Discussant: Nancy Brady, University of Kansas, Lawrence, Kansas Parent-Child Communication at Home in Preschool Children with Down Syndrome and Autism Spectrum Disorders Ann P. Kaiser, Terry B. Hancock and Prathibha Vijay Vanderbilt University, Nashville, TN Coping with Frustration in Children with Down Syndrome Laudan B. Jahromia, Amanda Gulsrudb, and Connie Kasarib a Arizona State University & bUniversity of California, Los Angeles Examining Parental Stress and Parental Perceptions of Toddler’s Communication Development Following Language Intervention: A Comparison between Children with and without Down Syndrome Ashlyn L. Smith and Mary Ann Romski Georgia State University 46 SYMPOSIUM 5 Parent-Child Communication at Home in Preschool Children with Down Syndrome and Autism Spectrum Disorders Ann P. Kaiser, Terry B. Hancock and Prathibha Vijay Vanderbilt University Correspondence: Ann P. Kaiser, PhD, Vanderbilt Kennedy Center, Vanderbilt University, Nashville, TN 37203 Email: [email protected] Both young children with Down syndrome (DS) and young children with autism spectrum disorders (ASD) are delayed in their development of spoken language, however, they differ in their social communication skills. Children with DS are typically socially responsive in early communicative interaction, but show increasing delays in productive language skill relative to age over the preschool years. In contrast, children with ASD have difficulty with joint attention, and are less responsive in early communicative interactions. While tested differences in children’s language are informative, observing children’s communication and the effects their communication has on their parents can provide additional information about the impact of social communicative abilities associated with specific disabilities on children’s learning environments. The current study examined: a) differences in children’s communication and behavior in DS and ASD children; b) differences in the responsiveness of their parents to children’s communication attempts; and c) differences in parental language input to children in the two groups during everyday communication interaction. . Method. Children with DS (N=15) and ASD (N=15) and their parents were observed during 30 minute toyplay based interactions at home. The two groups were matched for gender (4 females; 11 males/group), age (Mn =42 mo) and MLU (Mn = 1.50). The majority of parents in both groups were Euro-American mothers with at least a high school education. Data were transcribed from video tapes and coded using a Procoder based protocol. Inter-observer agreement on parent and child behaviors was calculated for 50% of the coded observations. Results. As expected due to matching, children in the two groups did not differ significantly in MLU or tested language, however, they differed significantly on most measures of productive language use. Children with DS had nearly twice as many spontaneous utterances; used more diverse words, more diverse utterances, and took more verbal turns than children with ASD. The two groups of children did not differ in terms of their observed negative behavior. Parents in both groups were highly responsive and positive, responding to more than 60% of all child utterances, and providing about l positive statement per minute. Because children with DS talked more, their parents provided significantly more responsive language models. Parent of children with DS had significantly higher MLU’s than parents of ASD children, even though child MLU was similar in the two groups. These findings suggest that the social communicative aspects of children’s language use affect both the quantity and the quality of parent input. Follow up qualitative analyses focus on the pragmatic functions of parent and child communicative utterances. 47 SYMPOSIUM 5 Coping with Frustration in Children with Down Syndrome a Laudan B. Jahromia, Amanda Gulsrudb, & Connie Kasarib Arizona State University & bUniversity of California, Los Angeles Box 951521, 3132B MH, Los Angeles, CA 90095-1521 Contact: [email protected] Previous research has highlighted the salience of looking behavior and eye-contact in the behavioral repertoire of children with Down syndrome (e.g., Kasari, Freeman, Mundy, & Sigman, 1995). This study explored the co-occurrence of these looking behaviors and assistance seeking during a task designed to elicit frustration in children with Down syndrome, nonspecific mental retardation and typical development. Participants/Procedures: Participants included 63 children (19 children with Down syndrome, 22 children with nonspecific mental retardation, and 22 children with typical development). Children were matched for mental age (average of 52.5 months) and both groups of children with mental retardation were matched for chronological age (average of 82 months). Unsolvable puzzles were administered to the children (e.g., Smiley & Dweck, 1994). Negativity/frustration and the coping strategies of assistance seeking and experimenter orientation were coded during the puzzle task using the Laboratory Temperament Assessment Battery (Goldsmith et al., 1999). Results: Group effects were found for negativity, assistance seeking with and without experimenter orientation, and experimenter orientation without assistance seeking. Children with Down syndrome displayed negativity for a greater proportion of time (M = .22) than did children with mental retardation (M = .11), d = 4.38 and marginally more than those with typical development (M = .15; p =.06), d = 2.79. There was no significant difference in overall negativity in the latter two groups. For experimenter orientation with and without assistance seeking, typical children engaged in these behavioral combinations for a significantly greater proportion of time (M = .16 and M=.21) than did children with mental retardation (M = .04, M=06). There was a marginal group difference in experimenter orientation with no assistance seeking, F (2, 62) = 2.82, p < .07. Children with Down syndrome used this behavioral combination for a greater proportion of time (M = .22) than typical children (M = .10), d = .76. A sequential methods approach was used to explore the associations between negativity and coping strategy, specifically to understand the relation between specific regulation strategies and decreases in children’s negativity. Interestingly, the results of these analyses for children with Down syndrome and mental retardation revealed that no behavior or behavioral combination showed a significant cooccurrence with decreasing negativity. For typical children, a significant sequential contingency was found for experimenter orientation with assistance seeking. This behavioral combination co-occurred with decreasing negativity more often than chance for a greater number of typical children. Conclusion: These results suggest that although children with Down syndrome and mental retardation are displaying increased negativity during a frustrating task they are not systematically using an effective coping strategy (assistance seeking) to decrease the negativity such as children with typical development. Implications for treatment will be discussed. Goldsmith, H. H., Reilly, J., Lemery, K. S., Longley, S., & Prescott, A. (1999). The Laboratory Temperament Assessment Battery: Preschool Version. University of Wisconsin. Kasari, C., Freeman, S., Mundy, P., & Sigman, M. D. (1995). Attention regulation by children with Down syndrome: Coordinated joint attention and social referencing looks. American Journal on Mental Retardation, 100, 128-136. Smiley, P. A., & Dweck, C. S. (1994). Individual differences in achievement goals among young children. Child Development, 65, 1723-1743. 48 SYMPOSIUM 5 Examining Parental Stress and Parental Perceptions of Toddler’s Communication Development Following Language Intervention: A Comparison between Children with and without Down Syndrome Ashlyn L. Smith and Mary Ann Romski Georgia State University, Atlanta, Georgia Contact: [email protected] Children with developmental disabilities encompass a wide variety of diagnoses including but not limited to autism, Down syndrome, and Fragile X syndrome. Research has shown that the child’s diagnosis can have differing impacts on parent stress. Specifically, parents of children with Down syndrome report lower levels of child-related stress (Kasari & Sigman, 1997; Hodapp, Ricci, Ly, and Fidler, 2003). The greater sociability and adaptive functioning of these children appears to lead to lower levels of perceived stress by the parent. There have been few studies however, that investigate the role that a child’s communication ability has on parental stress. The communication abilities of children with disabilities are often delayed, and in some children are significantly impaired. Interventions focused on improving the communication abilities of these children are often implemented without parent involvement even though the transactional nature of communication suggests that parent involvement will result in more positive child outcomes. Involving parents in language interventions is critical in providing not only positive outcomes for children but for the psychological well-being of parents as well. Research in the area of parent-implemented interventions has shown that teaching parents new skills to support their child’s language development can in fact improve developmental outcomes and reduce problem behavior. This paper examines the differential effects of a parent-implemented language intervention on parent stress and parent perceptions of their child’s language development. It compares a sample of parents of children with and without Down syndrome and is part of a larger study comparing the effects of three different parent implemented language interventions on the communication development of toddlers who encounter significant difficulty acquiring speech. 60 toddlers and their parents were recruited for this study. 18 toddlers were diagnosed with Down syndrome with a mean age of 28.61 months (SD = 3.13). 42 were diagnosed with other etiologies, such as, pervasive developmental disorder (PDD), cerebral palsy, or other genetic disorders, with a mean age of 29.90 (SD = 5.04). Participants were randomly assigned to one of three parent-implemented language interventions: Spoken Communication Intervention (SCI), which focused on spoken interaction, or one of 2 augmented language interventions, Augmented Communication Input Intervention (ACI), and Augmented Communication Output Intervention (ACO). Language skills, measures of parental stress and parent perceptions of language development, were all measured at pre and post intervention. Results indicate that parents of children with Down syndrome showed significantly lower levels of total parent stress at baseline as compared to parents of children with other etiologies. Following language intervention, parents of children with Down syndrome also decreased significantly on the total stress scale and the parent distress subscale of the PSI, while parents of children with other etiologies did not. Results also show that parent’s perceptions about their success in impacting their child’s communication development were not significantly different at baseline. However, parent’s feelings of success increased significantly for parents of children with other etiologies, but not for parents of children with Down syndrome. This study supports previous research that parents of children with Down syndrome exhibit a lower stress profile than parents of children with other etiologies. The findings also suggest that participating in a parent implemented language intervention serves to further reduce parent stress in parents of children with Down syndrome. 49 Symposium 6 S Y M P O S I U M 6 Down Syndrome: Gene Expression and Beyond Chair: Benjamin Tycko Institute for Cancer Genetics, Herbert Irving Cancer Research Center Discussant: Nicole Schupf Taub Institute for Research on Alzheimer’s Disease and the Aging Brain, Columbia University Medical Center, and NYS Institute for Basic Research in Developmental Disabilities 50 SYMPOSIUM 6 Down Syndrome: Gene Expression and Beyond Chair: Benjamin Tycko, Institute for Cancer Genetics, Herbert Irving Cancer Research Center Discussant: Nicole Schupf, Taub Institute for Research on Alzheimer’s Disease and the Aging Brain, Columbia University Medical Center, and NYS Institute for Basic Research in Developmental Disabilities Function of Chromosome 21 Gene Products Investigated in BAC-Transgenic Mice Luzhou Xing, Martha Salas, Chyuan-Sheng Lin, Ning Kon, Muyang Li, Wei Gu, Warren Zigman, Wayne Silverman and Benjamin Tycko Department of Pathology, Taub Institute and Institute for Cancer Genetics, Columbia University Medical Center, New York NY, Department of Psychology, New York State Institute for Basic Research, New York, NY, and Department of Behavioral Psychology, Kennedy Krieger Institute, Baltimore, MD Role of PIP2 Phosphatase Synaptojanin 1 in Down Syndrome-Linked Brain Dysfunction Sergey V. Voronov, Samuel G. Frere, Silvia Giovedi, Elizabeth A. Pollina, Cecilia Schmidt, Laurent Cimasoni, Christelle Borel, Markus R. Wenk, Stylianos E. Antonarakis, Katheleen Gardiner, Muriel T. Davisson, Ottavio Arancio, Pietro De Camilli, Gilbert Di Paolo Taub Institute for Research on Alzheimer’s Disease and the Aging Brain, Columbia University Medical Center Consequences of Over-Expression of Mnb/Dyrk1A in Down Syndrome Jerzy Wegiel*, Karol W. Dowjat, Wojciech Kaczmarski, Yu-Wen Hwang, Cheng-Xin Gong, Tatyana Adayev, Madhabi Barua, Izabela Kuchna, Krzysztof Nowicki, Jarek Wegiel, Humi Imaki, Pankaj Mehta, Arthur Dalton, Georgio Albertini, Ausma Rabe, Zhihou Liang, Fei Liu, Khalid Iqbal, Inge Grundke-Iqbal, Noriko Murakami, Naryan Ramakrishna, Wayne P. Silverman New York State Institute for Basic Research in Developmental Disabilities, and Kennedy Krieger Institute, Johns Hopkins University School of Medicine 51 SYMPOSIUM 6 Function of Chromosome 21 Gene Products Investigated in BAC-Transgenic Mice Luzhou Xing, Martha Salas, Chyuan-Sheng Lin, Ning Kon, Muyang Li, Wei Gu, Warren Zigman, Wayne Silverman and Benjamin Tycko* Department of Pathology, Taub Institute and Institute for Cancer Genetics, Columbia University Medical Center, New York NY, Department of Psychology, New York State Institute for Basic Research, New York, NY, and Department of Behavioral Psychology, Kennedy Krieger Institute, Baltimore, MD. Contact: Benjamin Tycko, M.D., Ph.D., Herbert Irving Cancer Research Center 1130 St. Nicholas Avenue, New York, NY 10032;[email protected] Introduction: The COL6A1 gene, in chromosome band 21q22.3, encodes a subunit of Type VI collagen and has been a candidate for contributing to cardiac and skin abnormalities in Down syndrome. The DSCR1 gene, in chromosome band 21q22.12, encodes an inhibitor of calcineurin and has been a candidate for contributing to several phenotypes in Down syndrome, including cardiac and cognitive defects, as well as resistance against solid tumors. We have started to study these 2 genes by creating bacterial artificial chromosome (BAC)-transgenic mice over-expressing each of them. As an experimental approach, BAC transgenic mice have potential advantages including appropriate tissue-specific expression and copy number-dependent expression of the transgenes. Material and methods: First, to investigate the effects of COL6A1 over-expression on cardiac and skin morphology, we created transgenic mice with genomic integrations of a BAC containing the human COL6A1 gene with 82 kb of upstream and 62 kb of downstream DNA. We characterized 2 transgenic lines, one low-copy and the other high-copy for the COL6A1 transgene. Second, to investigate the biochemistry and function of the DSCR1 protein in vivo we created BAC-transgenic mice as an allelic series with progressively increasing dosage of this gene. The DSCR1 BAC was engineered with a tandem tag to facilitate purification and characterization of high molecular weight DSCR1 protein complexes from native tissues of these mice. Results: 1. COL6A1: In high-copy and low-copy transgenic lines, we found correct temporal and spatial expression of COL6A1 mRNA, paralleling the expression of the endogenous murine Col6a1 gene in a panel of 9 adult and 4 fetal organs. In this panel the only exception to faithful expression was the fetal lung, in which the transgene was expressed at disproportionately low levels compared to the endogenous gene. Expression of COL6A1 mRNA from the BAC transgene was copy-number-dependent, and the increased gene dosage correlated with increased production of alpha (VI) collagen in skin and heart, as indicated by western blotting and immunohistochemistry. The low-copy and high-copy COL6A1 BAC-transgenic mice were born and survived in normal Mendelian proportions, and we did not observe cardiac malformations or altered skin histology in these animals. These data indicate that the major promoter and enhancer sequences regulating COL6A1 expression are present in this 167 kb BAC clone. The lack of an obvious cardiac or skin phenotype in the COL6A1 BAC-transgenic mice suggests that the increased copy number of this gene does not, by itself, account for these phenotypes in DS. 2. DSCR1: By western blotting we verified copy-number-dependent over-expression of DSCR1 protein dependent on transgene dosage in our allelic series of DSCR1-BAC transgenic mice. Initial phenotypic and biochemical findings in these mice will be discussed, with the objective of better understanding the cognitive and cardiac pathophysiology of Down syndrome. 52 SYMPOSIUM 6 Role of PIP2 Phosphatase Synaptojanin 1 in Down Syndrome-Linked Brain Dysfunction Sergey V. Voronov, Samuel G. Frere, Silvia Giovedi, Elizabeth A. Pollina, Cecilia Schmidt, Laurent Cimasoni, Christelle Borel, Markus R. Wenk, Stylianos E. Antonarakis, Katheleen Gardiner, Muriel T. Davisson, Ottavio Arancio, Pietro De Camilli, Gilbert Di Paolo* Contact: Gilbert Di Paolo, Department of Pathology and Cell Biology, Taub Institute for Research on Alzheimer’s Disease and the Aging Brain, Columbia University, New York, NY 10032; [email protected] Introduction: In DS, integrated gene expression is altered due to the presence of a third copy of human chromosome 21 (HC21). Although mental retardation has been linked to non-overlapping regions of HC21, indicating the multigenicity of its etiology, the relative contribution of single genes to this phenotype is unknown. Here we propose that Synj1 is a strong candidate for contributions to mental retardation in DS. Synj1 encodes synaptojanin 1, a brain- enriched lipid phosphatase that dephosphorylates phosphatidylinositol-4,5bisphosphate (PIP2). This lipid regulates a myriad of biological functions, including signal transduction, membrane trafficking and ion channels. Our previous work has provided strong evidence that PIP2 regulates synaptic vesicle trafficking and thereby, neurotransmission. This property is largely due to the ability of this lipid to recruit to the plasma membrane key cytosolic components of the endocytic machinery, which mediates the recycling of synaptic vesicles. Our hypothesis is that Synj1-linked PIP2 metabolism imbalance in DS may interfere with normal synaptic physiology and contribute to behavioral deficits in DS. Material and Methods: To address the role of Synj1 in DS, we have used the following genetic tools: (i) segmentally trisomic mice Ts65Dn; (ii) BAC transgenic mice containing one extra copy of Synj1 [Tg(Synj1)]; and (iii) Synj1+/- mice. Our lipid biochemistry experiments have involved PIP2 phosphatase assays from brain extracts and mass measurements. For behavioral analyses, we have used the Morris water maze paradigm and variants thereof. Results: 1. Evidence for gene dosage imbalance for Synj in DS mouse models. We have performed a Western Blot analysis using brain homogenates from wild-type, Ts65Dn mice and two lines of transgenic mice overexpressing Synj1. We found a comparable increase (40-60%) in the levels of synaptojanin 1 in Ts65Dn and Tg(Synj1) mice relative to controls. This increase reflects the presence of three copies of the gene encoding synaptojanin 1, Synj1. Importantly, Synj1 overexpression was fully rescued by genetically restoring a normal Synj1 copy number in Ts65Dn mice (Ts65Dn/Synj1+/+/-), which was achieved by breeding Ts65Dn mice with Synj1+/- (targeted mutation) animals. 2. Evidence for PIP2 metabolism defects in DS mouse models. Using a PIP2 phosphatase assay, we found a 33%±10 and a 54%±19 increase in the production of PIP with Ts65Dn and Tg(Synj1) cytosol, respectively, relative to controls, indicating that the overall PIP2 phosphatase activity of mutant is significantly enhanced as a result of Synj1 triplication. Importantly, the PIP2 phosphatase activity of Ts65Dn/Synj1+/+/- cytosol was comparable to that of WT brains. We also found that a PIP2 deficiency is present in the brain of Ts65Dn mice and that the underlying cause is trisomy of the Synj1 gene. Although this deficiency may appear to be subtle, it is likely to be meaningful from a neurophysiological point of view, as PIP2 metabolism, like that of cholesterol, is subject to a tight homeostatic regulation. 3. Evidence for learning deficits in transgenic mice overexpressing Synj1. We next tested whether Synj1 overexpression affects the learning ability of Tg(Synj1) mice. We have begun our studies using the Morris water maze paradigm. In our first two independent sets of experiments, we have analyzed a total of 29 animals [16 control mice (5 males and 11 females) and 13 transgenic mice (4 males and 9 females), age: 3-4 months]. We found that animals from both genotypes performed very well in the visible platform test, where they significantly improved their performance over the course of four sessions (one session/day). Similarly, there was no obvious difference in the escape latency between control and Tg(Synj1) animals in the hidden platform test. However, control animals showed clear signs that they had (at least partially) learned the task, since they spent significantly more time in the TQ quadrant compared to the other three quadrants (p < 0.001 for opposite quadrant and p < 0.05 for the adjacent quadrants according to ANOVA’s Bonferroni multiple test comparison). On the contrary, Tg(Synj1) animals did not show any signs of learning, as they spent a comparable fraction of their swimming time in all four quadrants. In conclusion, our experiments indicate that Tg(Synj1) mice exhibit learning deficits. 53 SYMPOSIUM 6 Consequences of Over-Expression of Mnb/Dyrk1A in Down Syndrome Jerzy Wegiel, Karol W. Dowjat, Wojciech Kaczmarski, Yu-Wen Hwang, Cheng-Xin Gong, Tatyana Adayev, Madhabi Barua, Izabela Kuchna, Krzysztof Nowicki, Jarek Wegiel, Humi Imaki, Pankaj Mehta, Arthur Dalton, Georgio Albertini, Ausma Rabe, Zhihou Liang, Fei Liu, Khalid Iqbal, Inge Grundke-Iqbal, Noriko Murakami, Naryan Ramakrishna, Wayne P. Silverman New York State Institute for Basic Research in Developmental Disabilities, Staten Island NY and Kennedy Krieger Institute, Johns Hopkins University School of Medicine, Baltimore, MD Contact: Jerzy Wegiel, New York State Institute for Basic Research in Developmental Disabilities, 1050 Forest Hill Road, Staten Island NY 10314; [email protected] Introduction: The gene coding the minibrain kinase/dual-specificity tyrosine phosphorylated and regulated kinase 1A (Mnb/Dyrk1A) is located in the Down syndrome (DS) critical region of chromosome 21. The third copy of Mnb/Dyrk1A is believed to contribute to DS phenotype, although the mechanisms and exact role of this kinase in developmental and age associated changes in DS are not defined. Current study characterizes (1) level of over-expression of DYRK1A in DS brain, (2) different pattern of ageassociated decrease of levels of DYRK1A isoform 1 and 2, and (3) interaction with tau protein resulting in modification of tau-hyperphosphorylation and contribution to neurofibrillary degeneration. Material and Methods: Morphological and biochemical study of brains and other organs of DS, AD and control subjects, Ts65Dn and control mice was focused on distribution and overexpression of DYRK1A protein and its isoforms, and pathological consequences of phosphorylation of DYRK1A substrates. Results: 1. Trisomy-driven overexpression of DYRK1A kinase in the brain of subjects with Down syndrome. In DS infants the ratio of DYRK1A versus control subjects varied in range from 1.1 in the white matter, to 2.1 in occipital, and 2.4 in frontal cortices. In DS adults, the levels of DYRK1A protein in the temporal, occipital cortex and corpus callosum were higher than in the controls by a factor ranging from 1.4 to 2.4 (p< 0.05). These results support “gene dosage” mechanism of DYRK1A protein in pathology seen in people with DS. 2. DYRK1A protein isoforms 1 and 2. Alternative splicing of exon 6 produces mRNAs coding two major isoforms of DYRK1A protein: isoform 1 (763 aa) and isoform 2 (754 aa). In human and mouse brain extracts, isoform1-specific antibody recognized three bands (97-94 kDa doublet and 87 kDa singlet), whereas isoform2-specific antibody detected exclusively 97-94 kDa doublet. The highest levels of both isoforms were observed in fetuses and few-day-old mice, and the lowest in 2-month and 6-month-old mice, in which the level of isoform 1 was reduced by 65% and isoform 2 by 80% compared to fetuses. Significantly faster reduction of isoform1 than 2 in first two weeks of life suggests difference in the role of isoforms 1 and 2 in developing brain. 3. Contribution of DYRK1A to neurofibrillary degeneration. Recombinant DYRK1A phosphorylates recombinant tau to a stoichiometry of ~1.2 mol phosphates/mol of tau. DYRK1A phosphorylates tau at several sites with an efficiency order of Ser212>Ser199/Ser396>Ser202/Thr205/Ser404. In DYRK1A transfected PC12 cells tau is hyperphosphorylated at the Ser199 and Thr212. Te examination of the level of tau phosphorylation in brain tissue from 6 DS (~60 years old) and 6 age-matched controls by Western blots revealed that: (1) over-expression on DYRK1A results in increased kinase activity in DS brains, (2) DYRK1A phosphorylates tau at several phosphorylation sites to a physiologically relevant level in vitro and in cultured cells, (3) these sites of tau are hyperphosphorylated in brains of adults with DS, (4) phosphorylation of tau by Dyrk1A primes tau for phosphorylation by GSK3beta at several phosphorylation sites. Immunocytochemistry of brain tissue showed that DYRK1A accumulates in neurofibrillary tangles (NFTs) in people with sporadic AD and in subjects with DS/AD but not in control subjects. Overexpression of DYRK1A in people with DS was associated with the presence of DYRK1A-immunoreactivity in 50% of NFTs whereas in sporadic AD less than 10% of tangles were DYRK1A-positive. These data indicate that neurofibrillary degeneration in DS is modified by DYRK1A in gene dosage-dependent manner. 54 Po s t e r S e s s i o n 1 P O S T E R S E S S I O N 1 WEDNESDAY, MARCH 7, 2007 6:30 P.M. - 8:30 P.M. 55 1. POSTER SESSION 1 Hyporesponsive Sensory Patterns in Young Children with Autism, Developmental Delay, and Typical Development Grace T. Baranek, Margaret DeRamus, Linda R. Watson, Brian A. Boyd & Michele D. Poe Correspondence to: Grace Baranek, CB# 7122, 2050 Bondurant Hall, University of North Carolina at Chapel Hill, Chapel Hill, NC 27599-7122 [email protected] Introduction: The exploration of sensory features in autism is pertinent due to the prevalence of such patterns. These features are widely described by professionals, families, and persons with autism, although they are not included in diagnostic criteria. The objective of this study was to determine the specificity and developmental correlates of a hyporesponsive sensory pattern in a sample of young children with autism and related disorders. Hyporesponsiveness refers to lack of response, or insufficient intensity of response to sensory stimuli. The focal question is whether or not children with autism show a generalized pattern of hyporesponsiveness and to what degree this pattern is affected by contextual factors (social vs. nonsocial), stimulus modalities (tactile vs. auditory vs. visual), and/or maturational variables. We hypothesized that children with autism would differ significantly in level of hyporesponsiveness from comparisons (i.e. developmental delay, typical), even when controlling for age. Method: The hyporesponsive scale from the Sensory Processing Assessment for Young Children (SPA) (Baranek, 1999) was used to identify latency to orient to sensory stimuli. Six items (name call, hand wave, shoulder tap, sound, light, and air puff), counterbalanced for context (social/nonsocial) and modality (tactile/ visual/auditory) were administered to 58 children with autism (MA 25.1, sd 18.1), 59 children with typical development (MA 30.1, sd 20.32), and 34 children with developmental delays (DD) (MA 26.0, sd 14.1). Within the group of DD, 14 children had Down Syndrome. Interrater reliability with >90% agreement was established by scoring and analyzing data between two raters. Additional diagnostic (e.g. ADOS) and developmental (e.g. Mullen, Vineland) assessments were administered to confirm each child’s group assignment and to describe sample characteristics. For analysis, a repeated measures mixed model with social and non-social scores as the outcome was run, controlling for the mother’s education and gender, and another model was run with modality scores. In keeping with the conference theme, we will also analyze a Down Syndrome subgroup to explore syndrome-specific characteristics. Results: There were significant differences between the groups in the relationship between mental age and hyporesponsiveness. Autism subjects had a greater decline (steeper slope) than typical and DD subjects due to higher levels of hyporesponsive patterns at lower mental ages. The autism group also displayed more difficulty with orienting than the controls; the social context exceeded group differences found in the nonsocial context. There were also significant group differences in orienting responses based on modality. Discussion: Results indicated that impaired sensory orienting may be a feature that is more specific to children with autism versus comparisons. However, MA explains much of variance associated with responsiveness to stimuli across groups, so as children advance cognitively, responsiveness improves. Although group differences were found, the context of sensory stimuli (social or non-social) affected the orienting response for all children, indicated by the finding that social stimuli were more difficult across groups, particularly at lower MAs. Theoretical implications and limitations (e.g., salience of social versus nonsocial stimuli) will be discussed. In addition, results from analysis of a subgroup of children with Down Syndrome will be presented. Future studies would benefit by using similar analyses that control for effects of MA and CA through the use of mixed models rather than traditional matched group designs. Acknowledgements: Grant NICHD R01-HD-42168 56 2. POSTER SESSION 1 Intrauterine Growth Retardation and Executive Function Performance at School Age Richard C. Belser, Vicki Sudhalter, Judith M. Gardner & Bernard Z. Karmel N.Y.S. Institute for Basic Research in Developmental Disabilities 1050 Forest Hill Road, Staten Island, New York 10314 Contact: [email protected] Introduction: Continuing advances in prenatal and postnatal care have led to an increased survival rate of infants considered to be at risk for developmental impairment from various causes, including chronic intrauterine stress during pregnancy. A common outcome of such prenatal stress is intrauterine growth retardation (IUGR). Although related to prematurity and low birth weight, IUGR refers specifically to infants who are significantly smaller than would be expected for their gestational age. IUGR has sometimes been associated with poor neurodevelopmental outcome, although the generality of such a relationship has been questioned (Burke et al., 1990). The data being presented here address the relationship between the degree of IUGR in infants with no evident structural CNS injury, and the subsequent development of executive function skills at school age. Methods: The Wilding Monster Sorting Task (WMST), a child-friendly version of the Wisconsin Card Sorting Task, was administered to children between five and six years of age as part of a larger ongoing longitudinal nerurodevelopmental study. The WMST is a computerized task that requires participants to assign monsters to one of four teams, each led by a monster king pictured across the top of the monitor. Each king exemplifies a different combination of values of three features (shape of face, number of eyes and color of feelers). As new monsters appear at the bottom of the screen, the participants must assign them to a team by choosing a king, who then either smiles or frowns to indicate response correctness. After reliably learning to base team selection on a certain feature, the feature rule is changed without notice. Performance is measured by the number of trials on which a correct response is made. Our measure of IUGR is based upon Fenton’s (2003) guidelines for the growth assessment of preterm babies. Results: The data from a preliminary sample of 32 children were examined by multiple regression analysis (using Statistica) to determine the influence of IUGR and age upon WMST performance. The contribution of IUGR to outcome was significant [beta = 0.42, p=.02]. The contribution of age was not significant. Discussion: Good performance on the WMCS requires both the ability to learn conceptual rules, and the ability to inhibit responding according to a previously correct rule after that rule has changed. Although our preliminary sample is not adequate to assess the relative contribution of these two factors to the children’s performance, they both represent executive function skills that emerge during school age and may be susceptible to early developmental problems associated with IUGR. As additional data are collected and analyzed, we expect to be able to provide a more comprehensive description of the relationship between IUGR and executive function development. Key References: Burke, G., et al. (1990). Is intrauterine growth retardation with normal umbilical artery blood flow a benign condition? British Journal of Medicine, 300, 1044-1045. Fenton, T. R. (2003) A new growth chart for preterm babies: Babson and Benda’s chart updated with recent data and a new format. BMC Pediatrics. 3, 13-22. 57 3. POSTER SESSION 1 Persistence in Early Communication by Young Children with Down Syndrome and Other Developmental Disabilities Nancy C. Brady and Kandace Fleming University of Kansas Contact:[email protected] Introduction: During early stages of communication development, children experience frequent communication breakdowns. That is, their communication partners often ask for clarification, change topic, or ignore children’s attempts to communicate. The ability to negotiate these episodes of communication breakdown enables children to continue the conversational exchange and eventually communicate their desires and interests to their partners. Children with Down syndrome are often significantly delayed in learning to talk and when they do begin speaking they may be difficult to understand (Roberts et al., 2005). Therefore, children with Down syndrome may experience even more frequent communication breakdowns than other children in similar developmental stages. In addition, young children with Down syndrome have been described as showing a lack of persistence compared to typically developing children and may be less likely to persist in their communication attempts when they are misunderstood, The purpose of this study was to compare episodes of communication breakdown during mother-child interactions across children with Down syndrome, children with developmental disabilities associated with other etiologies, and typically developing children matched for language development. Methods: Eight children between the ages of 38 and 52 months (mean 44.6) with a diagnosis of Down syndrome were individually matched to eight children who had developmental disabilities but not Down syndrome (mean CA 40 mo.), and eight typically developing toddlers (mean CA 19 mo.), on the basis of receptive language age and expressive language level. All of the children were in early stages of expressive communication development, producing less than 10 different words through speech or sign. Some children did not yet produce any words. Children participated in 30 minutes of mother-child interaction that was videotaped through a one-way mirror. The videotapes were later coded for child initiations, maternal responses to these initiations and whether or not the child succeeded in conveying their apparent intent. Child communication acts were described in terms of communication forms (gesture types, vocalizations, etc.) and communicative functions (e.g., behavior regulation, joint attention). Results: Children with Down syndrome initiated more communication acts than the other two groups. All children experienced similar proportions of communication breakdowns during mother-child interactions. In addition, children with Down syndrome were significantly more successful in resolving communication breakdowns than children in the other groups. Children were more likely to initiate and repair joint attention acts, but there was not a significant difference across groups. Discussion: Children with Down syndrome were persistent in their communication attempts and were more successful at repairing communication breakdowns than other children who were at similar language levels. It may be that lack of persistence occurs later in development or does not apply to communication breakdowns. These results should be interpreted with caution, however, due to the small number of participants in each group. 58 4. POSTER SESSION 1 Experiences of Parental Advocates in Self-Help Groups for Children with Autism Irene Carter University of Calgary 877 Westchester Drive Windsor, Ontario N8S 3Y6 Contact: [email protected] This qualitative study explored the experiences of parental advocates in attending self-help groups for children with autism. Twenty-two interviews with participants indicated the limitations of current social policies related to chronic disabilities, gender issues, and service delivery and the need to seek information and interventions through participation in self-help groups. The positive experiences included knowledge of interventions, rights and legislation, increased self-esteem, empowerment, hope, an appreciation of the care-giving role, and increased creative and flexible self-help group strategies. The negative experiences included increased stress associated with decreased time for family and work, and frustrations and disappointments in outcomes. Participants found self-help groups as necessary, and as serving a role in protecting vulnerable. While appreciative of the enabling group support, education and advocacy provided in self-help groups, study participants also noted a certain amount of ambivalence about membership and indicated group practices in need of improvement. The findings supported existing literature and contributed to the nascent literature on negative experiences. Suggestions for improved group practices included the use of professional assistance, improved feedback mechanisms, and the development and maintenance of a clear group focus. Implications for social work suggest the importance of professional training on how best to best assist self-help groups in developing strategic alliances and collaborative community initiatives. The study provided opportunities for parental advocates in self-help groups, professionals, and the public to better understand the challenges facing those who are inspired to provide positive change for children with autism. 59 5. POSTER SESSION 1 Early Learning Profile in Preschoolers with Williams Syndrome: A Descriptive Study Ashley Cole, David Most, Deborah Fidler, Amy Philofsky, & Susan Hepbun Colorado State University; University of Colorado Denver Health Sciences Center Contact: [email protected]; HDFS Dept. 502 W. Lake St. Fort Collins, CO 80526 Williams syndrome is a neurodevelopmental, multisystem disorder resulting from an abnormality on chromosome 7 (Ewart et al., 1993). Mervis, Klein-Tasman, and Mastin (2001) examined the adaptive behavior of 4-through 8-year-olds with Williams syndrome and identified patterns of relative strengths and weaknesses in this population. This study and others have established that children with Williams syndrome typically have relative strengths in the areas of expressive language, emotional responsivity and social interest and relative weaknesses in the areas of receptive language and fine motor skills, but much remains to be learned about how these splits in ability emerge and develop in the earliest years of life (Hepburn et al., 2005). This study aims to contribute to the literature characterizing the early manifestation of this phenotypic profile in young children with Williams syndrome and to describe the magnitude of the dissociation between their relative strengths and weaknesses. The Mullen Scales of Early Learning (MSEL) was administered to a chronological age and developmentally matched group of 18 children with Williams syndrome (age M = 35.75 months, SD = 7.79) and 17 children with developmental disabilities of mixed etiologies (age M = 36.65 months, SD = 7.85). Groups were similar on overall MSEL standard score (WS M = 61.94, SD = 10.00; DD M = 61.35, SD = 61.35). Four subscales were administered: fine motor, expressive language, receptive language, and visual reception. Results showed that children with Williams syndrome demonstrated a different early learning profile than children in the developmental disabilities comparison group. Specifically, children with Williams syndrome showed an overall advantage for verbal versus nonverbal functioning, while children in the comparison group showed a slight advantage for nonverbal functioning. Children with Williams syndrome showed a 9 month advantage over the comparison group children in the domain of expressive language (WS M = 27.22 months, SD = 9.83; DD M = 18.41, SD = 6.81), and a 4 month advantage over the comparison group children in the receptive language domain (WS M = 24.88, SD = 8.50; DD M = 20.88, SD = 9.78). In contrast, the comparison group children showed a 3 month advantage over the Williams syndrome group in the fine motor domain (WS M = 19.88, SD = 4.52; DD M = 22.94, SD = 7.20). In addition, children with Williams syndrome on average showed a 2.3 month (SD = 5.69) advantage for expressive language functioning over receptive language functioning, while children in the mixed comparison group had an average advantage of 2.47 (SD = 7.22) months for receptive language over expressive language. A 95% confidence interval for this between group difference is (.34, 9.26). While children with Williams syndrome showed similar performances on the visual receptive and receptive language domains of the MSEL (a .83 month advantage for receptive language skills), children in the mixed comparison group showed a 3.41 month advantage for visual receptive over receptive language performance. A 95% confidence interval for this between group difference is (7.02, 7.78). Similarly, children with Williams syndrome on average showed a 3.16 month advantage for expressive language over visual receptive skills, while children in the comparison group showed a 5.88 month advantage for visual receptive over expressive language skills. A 95% confidence interval for this between group difference is (4.73, 13.36). Implications for early intervention planning will be discussed. 60 6. POSTER SESSION 1 Predicting Marital Satisfaction from Initial Maternal Depression and Burden of Care Jenalee Coster, Brian M. Jobe, and Laraine M. Glidden St. Mary’s College of Maryland Campus Center 1410, 16800 Point Lookout Rd, St. Mary’s City, MD 20686 Contact: [email protected] and [email protected] Introduction: The presence of a child with developmental disabilities (DD) presents unique care giving requirements that may strain the marital relationship. In a meta-analysis Risdal and Singer (2004) examined the occurrence of divorce and marital discord in married couples rearing a child with DD in comparison with controls. They found a significant effect in the predicted direction, but it was small. Nonetheless, it is still important to determine the risk factors related to rearing a child with DD that predict marital tension and disruption. In the current study we examined the effect of the mother’s initial depression and burden of care, as measured by available resources and perceived child demands, on marital satisfaction. We hypothesized that reports of greater initial depression along with a heavy burden of care would predict more negative reports of marital satisfaction. In addition to main effects for these two variables, we also hypothesized that caretaker burden would interact with depression such that mothers with low levels of depression would have high marital satisfaction regardless of their burden of care. Methods: The sample is a subset of 53 mothers and their spouses from a sample of 249 families that participated in a 19-year longitudinal study of families raising children with DD. Data were collected for four different time periods, but the current study examines data only from Time 1, Time 2, and Time 3. Maternal depression was measured by the Beck Depression Inventory (BDI) at Time 1. Burden of care was measured by the Friedrich Questionnaire on Resources and Stress (QRS) at Time 2, and marital satisfaction was measured using the Locke-Wallace Marital Adjustment Inventory at Time 3. Results: To test the moderated model, BDI at Time 1 and the QRS at Time 2 were converted to z-scores and an interaction term computed. Using a multiple regression, the mother’s BDI scores, her QRS scores, and the interaction were entered as predictors of marital satisfaction for both mothers and fathers at Time 3. The hypothesis of a moderated model was not supported. Initial maternal depression and burden of care were unique predictors of maternal marital satisfaction. Maternal burden of care was the sole predictor of father marital satisfaction. Discussion: In sum, maternal burden of care was a significant predictor of marital satisfaction for both mothers and fathers. Initial maternal depression, however, contributed to marital satisfaction scores only for mothers. The two variables of caretaker burden and initial maternal depression are highly correlated, but they do not interact to create a moderated effect on future marital satisfaction. It is possible that mothers with higher depression receive more help from their husbands in caring for the children and that this sharing of responsibilities of care may increase scores on the Locke-Wallace, thus offsetting the predicted moderating effect in the opposite direction. References: Glidden, L. M. & Schoolcraft, S. (2003). Depression: its trajectory and correlates in mothers rearing children with intellectual disability. Journal of Intellectual Disability Research. 47, 250-263 Risdal, D. & Singer, G. H. S. (2004). Marital adjustment in parents of children with disabilities: A historical review and meta-analysis. Research and Practice for Persons with Severe Disabilities, 29, 95-103. 61 7. POSTER SESSION 1 Factors Predicting Mortality in a Residing with Family Aging Sample of Adults with Mental Retardation Anna J. Esbensen, Marsha Mailick Seltzer, & Jan S. Greenberg Waisman Center, University of Wisconsin – Madison Contact: Anna J. Esbensen, Waisman Center, room 561, 1500 Highland Avenue, Madison, WI, 53705, [email protected] Introduction: Studies on the mortality and morbidity of adults with Down syndrome relative to their age peers with other types of mental retardation report a pattern of similar rates of mortality until age 40, but elevated mortality rates thereafter. However, the life course of adults with Down syndrome has been extending dramatically. We investigated whether the prior findings would replicate in an aging sample of adults with Down syndrome or other types of mental retardation who were co-residing with their families. Specifically, we ask whether there were differences in the pattern of mortality between the two groups, whether there were differences in the causes of death, and if we could determine predictors of mortality. Method: Interviews were conducted with 461 mothers over the age of 55 caring for a co-residing adult son or daughter with mental retardation. Mothers were interviewed at 18 month intervals from 1988 to 2000 and provided information about their son or daughter’s health, behavior problems and functional abilities (Krauss & Seltzer, 1999). The mean age of the child was 33 years at the start of the study. Of the original sample, 169 children had Down syndrome and 291 had other types of mental retardation. Mortality, age at death and causes of death during the course of the study were obtained from the mother. For deaths occurring after the study was completed, the National Death Index (NDI) is the source of data regarding mortality, age at death and the cause of death. Results: Of the original sample, 31 individuals with Down syndrome and 42 individuals with other types of mental retardation died. There were no significant differences between Down and comparison cases in the proportion of deaths, P2(1)=1.22, p = .17, nor the age of death, t(71)=1.51, p=.13. Differences between Down and comparison cases in the number of deaths caused by Alzheimer’s, heart problems, unknown or other causes will be reported. Predictors of mortality were entered into a logistic regression as follows: (1) Down syndrome, gender, level of mental retardation, (2) initial status of health, behavior problems and functional abilities, (3) change in health, behavior problems and functional abilities, and (4) age. In the final model, age (Exp$=1.12, p=.00), initial level of functional abilities (Exp$=.42, p=.02), change in functional abilities (Exp$=.00, p=.00), change in behavior problems (Exp$=2.26, p=.01), and a diagnosis of Down syndrome (Exp$=2.46, p=.04) were significant predictors of mortality of the adult. The results remained consistent when indicators of epilepsy, placement, and parental death were added into the model. Discussion: Having a diagnosis of Down syndrome did not impact the number of deaths, or the age at death in this co-residing sample of adults with mental retardation. However, when other contextual factors were considered, such as initial age and decline in functional abilities, Down syndrome was found to be a significant predictor of mortality. The current findings indicate that a diagnosis of Down syndrome is predictive of mortality when individual differences in functional decline are taken into account. Key References: Krauss, M. W., & Seltzer, M. M. (1999). An unanticipated life: The impact of lifelong caregiving. In H. Bersani (Ed.), Responding to the challenge: International trends and current issues in developmental disabilities. Brookline, MA: Brookline Books. 62 8. POSTER SESSION 1 Examining Differences between Autistic Children with and without Mental Retardation (MR) Marygrace Y. Kaiser, Vanessa Gonzalez, & Jennifer S. Durocher, Michael Alessandri, ([email protected]) and Claudia Rojas, ([email protected]) University of Miami Flipse Building P.O. Box 248185 Coral Gables, FL 33124-0751 [email protected], [email protected], & [email protected] , It is widely accepted that mental retardation is a feature which is frequently associated with Autism Spectrum Disorders (ASDs). In fact, research has consistently indicated a high degree of comorbidity between autism and mental retardation, with estimates commonly cited rates of upward of 70 to 75% (DSM-IV, 1994; Ozonoff & Rogers, 2003; Siegel, 1997). Better characterization of these two subgroups is needed, in order to understand how these groups differ with respect to factors such as symptom presentation and age of diagnosis, educational eligibilities and placement, and follow-up cognitive evaluations, as these factors are likely to affect long-term outcome. In an attempt to address these issues, this study will utilize a unique community sample of children with Autistic Disorder to examine (1) types of tests used to asses IQ, (2) symptom presentation via the Social Communication Questionnaire (SCQ), (3) ages at which children were assessed by professionals, and (4) school eligibility and placement. This study consisted of 77 children with a parent reported diagnosis of Autistic Disorder, mostly consisting of boys as is common with this disorder. The parents of these children participating in a larger ongoing prevalence study funded by the CDC developed to monitor and track the prevalence of ASDs in MiamiDade County. Of these children, 39 had an IQ score less than 70 and the remaining 38 had IQ scores of 70 or above. IQ results were obtained via historical records obtained from each child at varying ages. A wide range in the type of test used to assess IQ was found in this sample. It was also found that the “high IQ” group were significantly more likely to have received a test that emphasized nonverbal IQ. There was also a significant mean difference in the age at which children were first seen by a professional for parental concern as well as when they were administered their first IQ evaluation. Children in the “low IQ” group were younger when first seen by a professional as well as at their first evaluation than children in the “high IQ” group. It was also observed that children in the “high IQ” group were significantly less likely to have an Autism eligibility and were significantly more likely to be placed in general education classrooms than were the “lower IQ” group. No significant difference was found for total SCQ score between the means for the two groups. However, risk ratios indicate that children in the “lower IQ” group were more likely to score above the threshold for Autism vs. ASD on the SCQ. The vast majority of children in this sample did not receive any follow-up IQ testing after their initial evaluations, therefore analyzing change in IQ was not possible. It may be that the higher IQ’s obtained for this group may be a function of the type of test used; in other words, perhaps the “lower IQ” group might have obtained higher IQ estimates had they been given a nonverbal test. It was also found that lower IQ children were seen by professional and evaluated earlier indicating that for children exhibiting comorbidity, their deficits were more obvious to parents which caused concern earlier on than for children with higher IQ’s. The finding that the “high IQ” children were less likely to have an Autism label may also be related symptom presentation. It may be that school IEP teams perceive children who are more cognitively capable and less affected behaviorally to be more likely to benefit from a general education environment. Ozonoff, S. and Rogers, S. J. (2003). From Kanner to the millennium: scientific advances that have shaped clinical practice. In S. Ozonoff, S. J. Rogers, & R. L. Hendren (Eds.), Autism Spectrum Disorders: A Research Review for Practitioners. (pp. 3-33). Virginia: American Psychiatric Publishing Inc. Siegel, B. (1996). Getting a diagnosis. In B. Siegel (Ed.), The World of the Autistic Child: Understanding and Treating Autistic Spectrum Disorders. New York: Oxford University Press. 63 9. POSTER SESSION 1 Linking Executive Function and Repetitive Behaviors in Autism Spectrum Disorders Harrison, B.1, Black, D.2, Wallace, G. 3, Della Rosa, A.1, & Kenworthy, L.1 1 Children’s National Medical Center, Washington, D.C., 2Boston University School of Medicine, and the 3National Institute of Mental Health Contact: Bryan Harrison, Center for Autism Spectrum Disorders, 14801 Physician’s Lane, Suite 173, Rockville, MD 20850 ([email protected]). Introduction: Identification of autism spectrum disorder as a multi-gene disorder drives interest in ascertaining the neuropsychological correlates associated each of the triad of behavior clusters associated with autism. Executive function (EF) is an obvious candidate to consider when investigating the cognitive phenotype underlying the repetitive behaviors cluster of autism symptoms. Previous research (Lopez, Lincoln, Ozonoff, & Lai, 2005) supports a relationship between executive function profiles and repetitive behaviors. Other investigations explored the relationship among the many discrete behaviors associated with the diagnosis of autism through factor analysis of parent responses to gold standard diagnostic interviews. Cuccaro (2003) and Szatmari (2006) each posited a two-factor model of repetitive and stereotyped behavior: one domain comprised of sensory/motor behaviors and another encompassing pervasive cognitive rigidity (or insistence on sameness). The present study examines the factor structure of repetitive/stereotyped behavior items from the ADI-R in a sample of high-functioning children with autism spectrum disorders, and the relationship of the factor structure to cognitive measure of executive functioning. Methods: Participants: 114 high functioning children (n=94 [83%] male; mean age = 8.13, range = 2-17) diagnosed with an autism spectrum disorder based on ADI-R, and expert clinical impression. All participants received a clinical neuropsychological evaluation, and their parents were administered the ADI-R (Lord, Rutter, & Le Couteur, 1994). An exploratory principal components factor analysis with Varimax rotation was completed using algorithm items assessing repetitive/stereotyped behavior from the ADI-R. Questions about verbal rituals and stereotyped speech were included in the factor analysis, with the a priori assumption that scores on these two items reflect repetitive/stereotyped behavior. Factors were then correlated with IQ and select measures of executive functioning assessed by the Test of Everyday Attention in Children (Tea-Ch). Results: The factor analysis yielded a 4-factor solution (eigen values > 1.0) accounting for 63% of the total variance. Inspection of items that comprised each factor suggested the following constructs: Factor 1: ritualistic behavior; Factor 2: circumscribed interests and repetitive behavior; Factor 3: preoccupation with discrete perceptual elements; and, Factor 4: stereotyped speech. Factor 1 was not correlated with any of the selected neuropsychological measures; Factor 2 was negatively correlated with verbal IQ (.232, p < .05); Factor 3 was negatively correlated with organized visual search ability (-.510, p < .05) and inhibition (-.435, p < .01); Factor 4 was negatively correlated with organized visual search ability (-.522, p < .01). Conclusion: Results of the factor analysis yielded a 4-factor solution in our high functioning ASD sample in contrast with earlier reports of a two factor structure (Cuccaro, et al., 2003; Szatmari, et al., 2006). We found a specific factor relating to preoccupation with discrete perceptual elements (Factor 3); this factor negatively correlated with a task tapping organized visual search strategies, as well as a measure of inhibition. This relationship may reflect an underlying inability to integrate information in autism spectrum disorders. Our results support the promise of attempts to link the diagnostic behaviors of autism to underlying cognitive constructs (or intermediate phenotypes) and suggest that specific executive functions may serve as empirically valid links from behavioral symptoms to brain function. References: Lopez, B.R., Lincoln, A.J., Ozonoff, S., & Lai, Z. (2005). Examining the relationship between executive functions and restricted, repetitive symptoms of autistic disorder. Journal of Autism and Developmental Disorders, 35(4), 445-460. 64 10. POSTER SESSION 1 Restricted, Repetitive and Stereotyped Behaviors, Interests, and Activities in Children with Autism Athena Hayes, University of Wyoming, [email protected] William MacLean, Jr., University of Wyoming, [email protected] Susan Hepburn, University of Colorado Health Sciences Center, [email protected] Sally Rogers, University of California-Davis, [email protected] Introduction: Although restricted, repetitive behaviors and interests are one of the three core defining features of autism, the extent to which these behaviors are specific to autism is not clear, leading some to propose that these behaviors may not be a necessary diagnostic requirement. Comparing restricted, repetitive behaviors and interests in autism with behaviors exhibited by other diagnostic groups could allow for further delineation of the autism behavioral phenotype. Methods: Children were administered an intensive diagnostic battery that included the ADOS-G and the ADI-R. Differences in the severity and patterns of repetitive behavior were examined among three wellmatched, well-defined diagnostic groups {autism (n = 25), fragile X syndrome (n = 10), and developmentally delayed (n = 25)}, through discriminant function analysis. Results: Repetitive behavior was apparent across all three diagnostic groups; yet, there were observable differences in the severity and pattern of behavior displayed allowing some differentiation between groups. Children with autism displayed significantly more unusual sensory interests than the fragile X syndrome and developmentally delayed groups and more unusual preoccupations than the developmentally delayed group. Further, children with autism displayed a pattern of high unusual sensory interests and relatively low levels of hand and finger mannerisms and self-injurious behavior as compared to the other groups. Discussion: Although there does not appear to be a repetitive behavior specific to autism based on these results, the occurrence, severity, and pattern of repetitive behavior exhibited provides support for the inclusion of repetitive behavior as a diagnostic criterion for autism. Further examination of the various forms of repetitive behavior is critical in charting the diagnostic stability of autism. Examining all aspects of the disorder in a systematic fashion allows for a further delineation of the broader autism phenotype. References: Bodfish, J. Symons, F. J., Parker, D.E., Lewis, M.H. (2000). Varieties of repetitive behavior in autism: Comparisons to mental retardation. Journal of Autism and Developmental Disorders, 30(3), 237243. Lord, C. (1995). Follow-up of two-year-olds referred for possible autism. Journal of Child Psychology and Psychiatry, 36(8), 1365-1382. Turner, M. (1999). Annotation: Repetitive behavior in autism: A review of the psychological research. Journal of Child Psychology and Psychiatry, 40(6), 839-849. 65 11. POSTER SESSION 1 Enhancing Cognitive-Emotional Skills for Children with Developmental Disabilities through Computer-Based Training Ingrid M. Hopkins, Margaret J. Bates, Shana B. Crowson, Rebekah K. Pearson, and Fred J. Biasini University of Alabama at Birmingham CH19, Suite 307, 1530 3rd Avenue South, Birmingham, AL, 35294-2041 Contact: [email protected] Previous research has highlighted deficits in social relations and non-verbal communication in both children with Autism and Mental Retardation. Specifically, earlier studies have shown that children with Autism and Mental Retardation perform significantly worse on tasks involving emotion recognition as compared to typical children. Also, individuals with Autism and Mental Retardation show marked impairments in the use of multiple nonverbal behaviors such as facial expressions and gestures to regulate social interactions. The overall purpose of the current study was to use recent advances in research, theory, and technology to develop, implement, and evaluate an avatar tutor for social skills training in children with Autism or Mental Retardation. Avatars are computer embodied virtual people that have a knowledge base and the ability to converse with humans in natural language. The advantages of employing computer-controlled applications for training include the unique ability to control and manipulate the visual and auditory components of spoken language automatically, enough variation in the learning environment to facilitate generalization of what is learned, and a one-on-one format between the child and the computer. “Face Say” was developed as a colorful program that contains several different activities designed to teach children specific social skills, such as eye gaze, joint attention, and facial recognition. The interactive features of the software provide opportunities for children to respond to social situations. The tasks differ in difficulty to assure that participants of various levels can be successful as well as challenged by the tasks. The children were asked to attend to the games for six weeks. Preliminary results indicate that the parents of the children with Autism and Asperger Disorder reported an improvement in their children’ social skills (e.g. cooperation, responsibility, self control) after participating in the study, t(7) = -3.257, p = 0.014. Second, there was a decrease in overall reported problem behaviors, t(7) = 3.112, p = 0.017 and internalizing behaviors, t(7) = 3.819, p = 0.007. Finally, the children showed improvements in their levels of cooperation, t(7) = -5.292, p = 0.001. The findings of this study are of great importance. It provides information about the benefits of computer-based training for children with a variety of developmental disabilities, including Autism, Asperger Disorder, and Mental Retardation. The knowledge gained from this study could be used to create more effective and cost efficient therapy for improving the cognitive-emotional skills of children with developmental disabilities. Future research directions are discussed. References: Bernard-Opitz, V., Sriram, N., & Nakhoda-Sapuan, S. (2001). Enhancing social problem solving in children with autism and normal children through computer-assisted instruction. Journal of Autism and Developmental Disorders, 31, 377-398. Bosseler, A., & Massaro, D.W. (2003) Development and evaluation of a computer-animated tutor for vocabulary and language learning in children with Autism. Journal of Autism & Developmental Disorders, 33, 653, 673. Yirmiya, N., Erel, O., Shaked, M., & Solomonica-Levi, D. (1998). Meta-analyses comparing theory of mind abilities of individuals with Autism, individuals with Mental Retardation, and normally developing individuals. Psychological Bulletin 124(3), 283-307. 66 12. POSTER SESSION 1 Increased Special Health Care Needs in Children with Severe Developmental Disabilities and Behavioral Disorders: Implications for Interdisciplinary Treatment of Problem Behavior Craig H. Kennedy, A. Pablo Juárez, Angela Becker, Kathryn Greenslade, Mark T. Harvey, Clare Sullivan, and Brenna Tally Vanderbilt University Objective: Behavioral disorders among children with severe developmental disabilities (CSDD) have a negative impact on life quality. Several single-case design studies have suggested that special health care needs (SHCNs) may contribute to the prevalence and intensity of behavioral disorders in this population. However, no direct comparison has been conducted to assess a possible association between the health status of CSDD and the occurrence of behavioral disorders. Methods. We used a matchedcomparison control group design to establish whether SHCNs were higher in CSDD with behavioral disorders versus CSDD without behavioral disorders. Children were matched on age, gender, race, mental retardation level, and DSM-IV axis I diagnosis (N=36). Measures included the Child Behavior Checklist, direct behavioral observation, health status exam, and Childhood Health Questionnaire (CHQ). Results. CSDD with behavioral disorders had significantly higher levels of SHCNs as measured by the CHQ and health status exam. Overall, CSDD with behavioral disorders had a three-fold higher incidence of SHCNs than CSDD without behavioral disorders. No between group differences were observed in the number or types of prescription medications children received. Conclusions. CSDD with behavioral disorders have a higher incidence of SHCNs than CSDD without behavioral disorders. It is possible that SHCNs contribute to the occurrence and/or intensity of behavioral disorders in his population. Our findings suggest that the treatment of behavioral disorders in CSDD requires interdisciplinary care coordination among health, educational, and behavioral professionals if SHCNs are present. 67 13. POSTER SESSION 1 Teaching Money Skills to Children with Intellectual Disabilities: Rapid Learning via Constructed Response Matching-to-Sample Procedures Joanne B. Kledaras & Dana Hurlbut, Praxis, Inc.271 Waverley Oaks Road, Suite 206 Waltham, MA 02452 William J. McIlvane & William V. Dube, UMMS Shriver Center, 200 Trapelo Road, Waltham, MA 02452 [email protected] This project is developing and evaluating state-of-the-art computer-based methods for teaching money skills prerequisites to persons with autism, mental retardation, and other intellectual disabilities. The foundation for the project is a long-term program of basic and translational research supported by NICHD. That research documented exceptional potential of stimulus equivalence and related stimulus control shaping techniques for teaching persons who would not ordinarily be expected to master money skills. These achievements, however, depended upon a highly intricate set of procedures – the complexity of which rendered the approach unsuitable for routine implementation in special education settings. The research dimension of the current project is three-fold: First, it is evaluating an enhanced version of the money skills teaching program that replaces human decision-making with algorithmic specification of necessary teaching steps and sequences. Second, it is evaluating new algorithms for proscriptive programming and error-handling. Third, the project is evaluating the human interface that supports the efforts of teachers to use the program effectively. The project is also re-evaluating the translational research on which the program is based. One achievement has been an elegant solution to an ongoing problem – teaching children to indicate “no more” when none of the coins available in a “choice pool” can be combined to make a valid match in the constructed-response matching format. In prior research, the child was required to respond to another location to indicate “no more” – behavior that proved difficult to establish in a subset of children. The solution was to place a token in the pool. The child could respond to it to indicate “no more;” inhibiting responses to coins in the pool was no longer required. Other findings – quite unexpected – were data collected in an effort to refine pre-intervention assessments. During assessment, we observed apparent learning of new performances despite the absence of explicit teaching. The table below presents illustrative data from a subset of children – each child’s initial accuracy at each of five coin-equivalence values (5¢, 10¢, 15¢, 20¢, and 25¢), his/her highest score achieved during the assessment, and the number of sessions preceding his/her highest score. That children achieved non-zero initial scores may be due to the fact that they had coin skills as IEP objectives and were thus beneficiaries of prior teaching by others (only partially successful as the frequently low initial scores also show). Value 5¢ 10¢ 15¢ 20¢ 25¢ Student First High Sess First High Sess First High Sess First High Sess First High Sess S3 73 100 7 61 87 4 61 88 17 48 86 7 50 80 11 S8 74 100 9 66 100 10 50 100 14 29 100 14 45 85 12 S16 87 100 5 78 96 9 46 79 9 56 81 13 63 81 12 We attribute increases shown by many children during our assessment to well-structured teaching sessions and progressive introduction of higher values. Under these benign teaching conditions, we not only capture the beneficial effects of past teaching but also create circumstances under which new performances can emerge via spontaneous recombination – analogous somewhat to the benefits of teaching phonics in reading instruction. These findings are directly in line with recent theory that suggests that slow, inflexible learning of persons with intellectual disabilities may be avoidable through optimizing aspects of instructional procedures. Research activity supported by NICHD grants HD46319 and HD48144 68 14. POSTER SESSION 1 Receptive Language in Adolescents with Fragile X Syndrome with or without Autism S. T. Kover, L. Abbeduto, N. D. Giles, E. K. Richmond, P. Lewis, A. Weber, S. Schroeder, J. A. Anderson, and A. Baron Waisman Center, UW-Madison, 1500 Highland Avenue, Madison, WI 53705-2208 Contact: [email protected] Introduction: There is an association between fragile X syndrome (FXS) and autism (AUT), with one-third of individuals with FXS meeting criteria for AUT. It is unclear, however, whether individuals with FXS+AUT are simply more severely affected than their FXS only peers or whether the two groups differ qualitatively. Several studies have addressed this issue by comparing the linguistic profiles of FXS+AUT and FXS only, but with inconsistent results. Roberts et al. (in press) found that boys (ages 3 to 14 years) with FXS and an autism spectrum disorder did not differ in receptive language scores from boys with FXS only, Down syndrome (DS), or typical development (TD), all matched on nonverbal mental age (NVMA). Roberts et al., however, measured only receptive vocabulary and did not distinguish children with AUT from others on the AUT spectrum. In contrast, Lewis et al. (2006) found that adolescents with FXS+AUT (ages 11 to 23 years) scored lower than NVMA-matched adolescents with only FXS on measures of receptive vocabulary and grammar. Lewis et al., however, relied on clinician judgment to make the diagnosis of AUT rather than using the Autism Diagnostic Interview-Revised (ADI-R) and Autism Diagnostic Observation Schedule (ADOS), which together are the gold standard for diagnosis. In the present study, we attempted to clarify the receptive language phenotypes of FXS+AUT and FXS only by measuring both receptive vocabulary and syntax, using the ADI-R and ADOS to diagnose AUT, and by including only participants with AUT in the FXS+AUT group. We also included TD and DS comparison groups to provide a basis for determining the extent of delay in receptive language in the two FXS groups. Method: Participants were adolescents aged 10 to 15 years with FXS+AUT (n = 9, 8 males), FXS (n = 20, 18 males), DS (n = 20, 10 males), and TD children (n = 20, 11 males). Participants who met criteria on the diagnostic algorithms for autism on both the ADI-R and the ADOS comprised the FXS+AUT group. All groups were matched on NVMA, based on the Leiter-R. As part of a larger battery, participants received the Peabody Picture Vocabulary Test (PPVT) and the Test for Reception of Grammar (TROG), a measure of receptive syntax. Results: Preliminary analysis of PPVT and TROG age-equivalent scores using separate one-way ANOVAs revealed group differences on both measures. There were no differences between the FXS+AUT and FXS only groups. Instead, participants with DS scored lower than participants with only FXS on the PPVT, and all three syndrome groups scored lower than the TD group on the TROG. The same findings emerged for raw scores and standard scores. Discussion: Differences between adolescents with FXS+AUT or FXS were not found in receptive vocabulary or syntax. Thus, there was no evidence of a qualitatively different profile in receptive language (i.e., different profiles of strengths and weaknesses in receptive language relative to cognitive level) between FXS+AUT and FXS only. These findings, which are contrary to the Lewis et al. study, could be due to our differing language measures, improved diagnostics, or insufficient statistical power. Data from additional participants and on group profiles across specific syntactic forms will be presented. Lewis, P., Abbeduto, L., Murphy, M., Richmond, E., Giles, N., Bruno, L., et al. (2006). Cognitive, language and social-cognitive skills of individuals with fragile X syndrome with and without autism. Journal of Intellectual Disability Research, 50(7), 532-545. Roberts, J., Price, J., Barnes, E., Nelson, L., Burchinal, M, Hennon, E. et al. (in press). Receptive vocabulary, expressive vocabulary, and speech production of boys with fragile X syndrome in comparison to boys with Down syndrome. American Journal on Mental Retardation. 69 15. POSTER SESSION 1 Developmental Trajectories of Language Skills in Toddlers and Adolescents with Down Syndrome Nancy Raitano Lee1,2*, Susan Hepburn1, Amy Philofsky1, Deborah Fidler3, Sally Rogers4, & Bruce Pennington2 1 JFK Partners; University of Colorado at Denver & Health Sciences Center; 4200 East 9th Avenue, C268-30; Denver, CO 80262; 2Department of Psychology, University of Denver; 3 Department of Human Development & Family Studies, Colorado State University; 4 M.I.N.D. Institute, University of California–Davis *Contact: [email protected] Introduction: Research has suggested that the developmental trajectory of intelligence in individuals with Down syndrome (DS) is characterized by slower rates of growth, such that gains in mental age (MA) decrease as chronological age (CA) increases (Hodapp & Zigler, 1990). The current research sought to augment our understanding of the developmental trajectory of language skills in DS by examining two samples longitudinally, one in early childhood and one in adolescence. Methods: The first sample included toddlers with DS (n = 8) and an MA-matched typically developing control group (n = 8). Toddlers with DS were tested 2 years apart, while typically developing participants were tested 1 year apart using the Mullen Scales of Early Learning. The second sample included adolescents with DS (n = 15) who were tested approximately 7 years apart using the Peabody Picture Vocabulary Test – Third Edition. Results: For the MA-matched toddler sample, the relative gain in raw score points on the Expressive Language scale of the Mullen was not similar across groups from Time 1 to Time 2. Even though the typically developing control participants had only aged one year, their gain in raw score points on the Mullen Expressive Language scale was significantly greater than the participants with DS who had aged two years (Expressive = Main Effect Time: F(1,14)=85.35, p<.001; Trend for Group: F(1,14)=3.24, p<.1; Group x Time Interaction: F(1,14)=4.66, p<.05; Receptive = Main Effect Time: F(1,14)=34.61, p<.001; No effect of group; Trend for Group x Time Interaction: F(1,14)=2.75, p=.12). For the adolescent group, because a control group was not followed over time, we relied upon norms from the PPVT manual using two methods. First, we compared DS performance to 50th percentile raw scores matching on CA at Time 1 and Time 2. Second, we compared DS performance to 50th percentile raw scores matching on MA at Time 1 and then extrapolating age at time 2 (i.e., Time 2 age = Time 1 MA + time between the two testing sessions). When using CA-matched norms, the proportional gain in raw score points in the DS group was similar to that found for children with 50th percentile performance, despite expected group differences in mean raw scores at the two age points (Main Effect Time: F (1, 28) = 58.51, p < .001; Main Effect Group: F (1, 28) = 93.75, p <.001; No Group x Time Interaction: F < 2, p >.2). Similar to the toddler sample, when using MA-matched norms at Time 1, a significant group x time interaction was found, such that the adolescents with DS made a less significant gain in raw score points from Time 1 to Time 2 as compared to the raw score norms associated with 50th percentile performance over that same period (Main Effect Time: F (1, 26) = 165.76, p < .001; Main Effect Group: F (1, 26) = 8.41, p <.01; Group X Time Interaction: F (1, 26) = 60.49, p <.001). Discussion: Consistent with earlier findings, these results suggest slower rates of growth in language development in DS when participants are compared to MA-matched controls. However, when adolescents with DS in this sample were compared to CA-matched, 50th percentile norms, similar rates of growth in receptive vocabulary skills over time were evidenced. Implications for choosing comparison groups for longitudinal research will be discussed. Key References: Hodapp, R. M. & Zigler, E. (1990). Applying the developmental perspective to individuals with Down syndrome. In D. Cicchetti & M. Beeghly (Eds.), Children with Down syndrome (pp. 1-28). New York: Cambridge University Press. 70 16. POSTER SESSION 1 Mood and Anxiety in Mothers of Children with FXS and Mothers of Children with Autism Jean B. Mankowski1, B.A., Jane Roberts1, Ph.D. and Donald Bailey Jr2., Ph.D FPG Child Development Institute at UNC-Chapel Hill1; RTI International2 Contact: [email protected] Introduction: Parents of children with disabilities are faced with challenges such as the heightened demand of childcare, continual questions concerning a child’s progression, physical and emotional fatigue from daily care, and maladaptive or problematic child behavior. These challenges can impact a parent’s mood, anxiety, stress level, and overall emotional well-being. Children with autism and children with fragile X syndrome (FXS) are known to possess deficits in sociability, and they often exhibit maladaptive and problematic behaviors. Autism and FXS are distinct disorders, but are related in a number of ways including overlap in behavioral symptoms, neurological anomalies, functioning expressed within a range, and differential patterns of genetic risk. Existing literature shows that female carriers of FXS and mothers of children with autism display higher incidences of mood and anxiety disorders (Abbeduto, et al., 2004) than found in community samples. However, prevalence rates have been inconsistent due to variations in sample and instrumentation (screening vs. interview, current vs. past, diagnostic criteria). No study has examined lifetime history of mood and anxiety using a structured interview based on the DSM-IV. Additionally, no study has examined how maternal mood and anxiety have been affected by the birth and/ or diagnosis of the child with the disability, and/or the severity of the child’s autistic and difficult behaviors. This study compares the history of mood and anxiety disorders in mothers of children with FXS, mothers of children with autism (non-FXS), and mothers of children with FXS and autism. Methods: Three participant groups are involved in this study: 1) 20 female carriers of FXS with a biological son with elevated autistic behavior (CARSe”30), 2) 20 female carriers of FXS with a biological son without elevated autistic behavior (CARS <30), and 3) 40 females with a biological son with autism (non-FXS). The three groups are matched on adaptive behavior (Vineland Composite Score) and chronological age. All carrier mothers of FXS have the premutation and their children have the full mutation. Trained evaluators derive current and lifetime rates of anxiety and depression using The Structured Clinical Interview (SCID) for the DSM-IV. Child measures include the Childhood Autism Rating Scale, Vineland Adaptive Behavior Scale and Child Behavior Checklist. All data on the female carriers of FXS and their children with FXS have been collected. Data from thirty-two mothers and their children with autism have been collected, and up to ten more families will be assessed by November, 2006. Results: Preliminary analyses of our data suggest a higher lifetime prevalence of major depressive episodes (MDE) in mothers of children with FXS (42%, n=91) and mothers of children with autism (68%, n=32) than in community samples (24%). Future analyses will examine how maternal mood and anxiety are impacted by the severity of the child’s autistic and challenging behavior. In addition, we will examine the attribution of major depression to critical life events including the birth and diagnosis of their child. Discussion: These results will further our understanding of mood and anxiety in mothers of children with FXS and mothers of children with autism and provide insight as to the extent that mood and anxiety disorders may be psychiatric vulnerabilities in these populations. In addition, our findings will provide information on the effect of child autistic and problem behavior on mood and anxiety disorders. These findings can be used to guide discussion of the challenges families face and ways to provide more informed support, intervention services, and treatment options for both mothers and their children. Key Reference: Abbeduto, L., Seltzer, M.M., Shattuck, P., Krauss, M.W., Orsmond, G., & Murphy. M. M. (2004). Psychological well-being and coping in mothers of youths with autism, Down syndrome, or fragile X syndrome. American Journal on Mental Retardation, 109, 237-254. 71 17. POSTER SESSION 1 Parents of Children with Autism Spectrum Disorders Have Merited Concerns About Their Infant Siblings Caitlin R. McMahon, Elizabeth E. Malesa, Paul J. Yoder, & Wendy L. Stone Vanderbilt University, Psychology and Human Development, & Vanderbilt Kennedy Center Email: [email protected]; Mail: 1500 21st Ave S, Suite 4200, Nashville, TN 37212 Introduction: Infant siblings of children with ASD (SIBs-ASD) are at elevated risk for social and language delays (Landa & Garrett-Mayer, 2006; Yirmiya et al., 2006). Little is known about how parents perceive the development of Sibs-ASD. It is possible that parents may be hypervigilant (i.e., excessively worried) about noting concerns in the development of their younger siblings. Thus, the extent to which parental concern is related to true tested cognitive or language impairment in the SIBs-ASD is unclear. The aims of the current study were to test: (a) the between-group differences (SIBs-ASD vs SIBs-TD) on parental concerns of their infant’s development, and (b) the association between the extent to which parents express developmental concern and their infants’ standard scores on an early developmental scale. Method: Seventy-six participated in the study: 49 Sibs-ASD (mean Chronological age (CA)= 15.9; range= 12-24 months) and 27 CA-matched siblings of typically-developing children (SIBs-TD; mean CA= 16.1, range= 12-23 months). Parents completed the Parental Concerns Form (PCF) and each child received the Mullen Scales of Early Learning (MSEL). The PCF includes 7 questions rated on a 3 point scale (i.e., “no=0,” “a little=1,” “yes=2”), that address concerns about the child’s language use, language understanding, use of hands and fingers, use of arms and legs, behavior, ability to get along with others, and learning. The Total Score from the PCF (range 0-14) was used for analyses and tested for associations with MSEL Language Domain T-scores and overall MSEL Early Learning Composite (ELC) standard score. Results: Groups did not differ on CA or gender. The Sibs-TD group had a significantly higher mean level of maternal education than the Sibs-ASD group (t(74) = -2.62, p = .011; Cohen’s d=.60). Maternal education was negatively correlated with Total Parental Concerns (r = -.287, p = .01) and was positively correlated with MSEL Receptive Language T-score (r = .315, p = .006). Therefore, maternal education was entered as a covariate in analyses as appropriate. ANCOVA analyses revealed that groups differed significantly on overall parental concerns (F(1, 73)= 11.12, p= .001, partial eta squared= .132), with parents of Sibs-ASD indicating more total concerns than parents of Sibs-TD. Sibs-ASD received significantly lower scores than Sibs-TD on overall MSEL ELC score (F(1,74)= 10.36, p=.002, Partial eta squared=.123). No differences emerged between groups on MSEL Receptive Language after controlling for maternal education (F(1,73)= 2.31, p=.133, Partial eta squared=.031) and no differences between the groups were found for MSEL Expressive Language (F(1,74)= 2.57, p=.113, Partial eta squared=.034). Regression analyses revealed that each of the MSEL scores of interest independently predicted total parental concerns; MSEL ELC standard score (t= -4.91, p= .000), MSEL Receptive Language T-score (t= 2.43, p= .018), and MSEL Expressive Language T-score (t= -4.47, p= .000). Parental concerns remained significantly and negatively correlated with MSEL Total ELC standard score (r = -.383, p=.001) and with MSEL Receptive Language T-score (r = -.280, p=.015) when MSEL scores were split dichotomously at the 10%ile, suggesting that parental concerns are justified by their relation to clinically significant delays. Discussion: Parents of children with ASD are more concerned about the development of their youngerborn siblings than are parents of typically developing children. Our results suggest that these concerns are warranted in that higher parental concerns were related to lower standard scores on cognitive and language measures. The validation of parent concerns has implications for parents and professionals in seeking specialized intervention services for younger siblings. Key References: Landa, R. & Garrett-Mayer, E. (2006). Development in infants with autism spectrum disorders: a prospective study. J Child Psychol Psychiatry, 47(6), 629-638. Yirmiya N, et al. (2006). The development of siblings of children with autism at 4 and 14 months: social engagement, communication, and cognition. J Child Psychol Psychiatry, 47(5), 511-23. 72 POSTER SESSION 1 18. Personality, Coping Style, and Adjustment of Parents Rearing Children with Developmental Disabilities Angela L. Natcher, Brian M. Jobe, and Laraine M. Glidden Department of Psychology, St. Mary’s College of Maryland, St. Mary’s City, MD 20686 Contact: [email protected] Parents rearing children with developmental disabilities (DD) encounter stressors that require coping and adaptation. In previous research, the use of problem-focused coping strategies was more often associated with positive adjustment outcomes than was the use of emotion-focused coping. Glidden, Billings, and Jobe (in press) reported this pattern with regard to depression and subjective well-being measured concurrently with coping. However, Positive Reappraisal, an emotion-focused coping mechanism, was an exception, predicting greater well-being. In addition, parental personality was shown to influence outcomes, with Neuroticism, in particular, associated with lower well-being. The current study aims to replicate these results for the same adjustment outcome variables measured 5.5 years later. Additionally, we hypothesized that, in regard to the child’s transition to adulthood, use of problem-focused coping strategies would predict less worry and emotion-focused coping strategies (with the exception of Positive Reappraisal) would predict more worry. For the present study, we examined the DEP5, a 5-item measure of depression, Subjective Well-being (SWB) relating to Global, Current, and Child-related functioning, as well as the Transition Daily Rewards and Worries Questionnaire (TDRWQ), a self-report inventory used to assess parental reward and worry concerning the child’s transition into adult life. Participants included 138 mothers and 69 fathers parenting at least one child with DD. In hierarchical regression procedures for each criterion variable, parental role (mother/father) and the five personality factors from a self-report NEO were entered as a block before the eight coping strategies from the Ways of Coping (WOC) questionnaire were entered in a stepwise procedure. NEO and WOC data had been collected approximately 5.5 years earlier. In none of the analyses did mother/father differences reach significance, indicating no significant main effect of parental role for any of the criterion variables. Higher scores on Neuroticism predicted greater depression and lower global and current SWB, replicating the earlier findings of Glidden, Billings, and Jobe. The findings suggest that, even after controlling for personality, the coping strategies used by the parents of children with DD are predictive of their well-being outcomes more than 5 years later. In general, problem-focused coping strategies were more effective than were emotion-focused coping strategies (with the exception of Positive Reappraisal) at achieving positive adjustment outcomes. Specifically, Planful Problem Solving and Positive Reappraisal predicted less parental worry concerning the child’s financial independence and Self-controlling and Accepting Responsibility coping strategies predicted more parental worry. The use of Confrontive Coping, a problem-focused coping strategy, was associated with lower depression and greater Global and Child-related SWB, whereas Escape-avoidance, an emotion-focused coping strategy, was associated with greater depression and lower Child-related SWB. Similarly, the emotion-focused strategies, Self-controlling and Distancing, predicted greater depression and lower Global SWB, respectively. Additionally, all emotion-focused coping strategies except Positive Reappraisal predicted increased parental worry concerning various aspects of the child’s transition into adulthood. These findings corroborate earlier ones and demonstrate consistency with intervention programs that aim to alter individual coping style for more effective adjustment to stress. Reference Glidden, L. M, Billings, F. J., & Jobe, B. M. (in press). Personality, coping style, and well-being of parents rearing children with developmental disabilities. Journal of Intellectual Disability Research. 73 19. POSTER SESSION 1 The Effect of Disability Status and Social Experience on Social Cognitive Development Irene Ngai & Frank J. Floyd, Georgia State University Janis B. Kupersmidt, University of North Carolina at Chapel Hill Contact: Irene Ngai 1376-3 Benning Place NE Atlanta, GA 30307 [email protected] Social cognitive skills enable children to make sense of and respond to incoming social information. Social cognitive development is influenced by both general cognitive functioning and social experiences. Thus, because of cognitive delays, children with Down syndrome (DS) and children with mental retardation of unspecified etiology (MR) are expected to demonstrate delays in their social cognitive skills compared to children without disabilities. However, social cognitive development might vary between the disability groups according to differences in social experience. The present study examined the effect of the child’s diagnosis and social experiences on the development of two social cognitive skills, interpretation of peer intent and response strategy generation. Specifically, children with DS were expected to experience more prosocial treatment by peers and less physical and relational aggression than the children with MR. Thus, children with DS were expected to make fewer hostile attributions, and consequently, suggest more prosocial and fewer retaliatory response strategies than the children with MR. Yet, as the sample aged, increasing awareness of social norms was expected to contribute to a decline in hostile attributions and retaliatory responses, and an increase in prosocial responses. The present study included data for 18 children with MR and 9 children with DS. To assess age-related changes in social cognitive skills, up to 4 waves of data were obtained using the Social Problem Solving Interview (Dodge, Pettit, McClaskey, & Brown, 1986). This interview included three hypothetical social scenarios – one involving exclusion (e.g., child’s request to join a play group is rebuffed), one involving an ambiguous aggressive incident (e.g., drink is spilled on the child), and one involving social aggression (e.g., children whispering near the child). We examined the percentage of hostile interpretations proposed as well as both the proportion of prosocial and retaliatory response strategies suggested. The Social Experiences Questionnaire (Crick & Grotpeter, 1995), was used to obtain parent reports of the child’s experiences as a recipient of prosocial behaviors and as a victim of both overt and relational aggression. Sixteen items reflected prosocial experiences (e.g., “my child has peers who like to play with him/her”), overt aggression (e.g., “my child is in danger of being hit by others”), and relational aggression (e.g., “other children prevent my child from joining an activity”). Hierarchical linear modeling was used to investigate the impact of disability status and social experience on the development of two social cognitive skills. Contrary to expectations children with DS suggested more hostile interpretations of peer intent than children with MR. However, consistent with expectations as to the effects of social experience, children with DS who were the recipient of low levels of prosocial behavior, and who experienced the most physical and relational aggression demonstrated the greatest increases in hostile interpretations over time. Regarding response strategies, regardless of their social experience, the mean number of retaliatory strategies suggested by children with DS was significantly higher than that of other children with MR. Moreover, with increasing age, children with DS who experienced a low level of relational aggression showed the slowest growth in their use of prosocial responses. Overall, the findings suggest that for children with DS, negative social experiences contribute to maladaptive cognitions about peer intent, which in turn, influence the types of social responses suggested. Moreover, the absence of maltreatment was not associated with prosocial tendencies. This pattern of responses continued with increasing age. These findings are interpreted as evidence that children with DS develop attribution and response tendencies based on past social experiences, and that cognitive delay may inhibit growth for these skills. Future researchers are encouraged to recruit larger samples of children with MR and DS to further explore inter-group differences found in the present study. Researchers may also study how social cognition and social experience interact to impact social adjustment over time. 74 20. POSTER SESSION 1 Emotional and Behavioural Adjustment in Siblings of Children with Intellectual Disability with and without Autism Michael A. Petalas, Susie Nash, and Tracey Lloyd School of Psychology, University of Wales, Bangor Contact: [email protected] Introduction: Siblings of children with autism have often, but not always, been found to present with more adjustment difficulties in comparison to siblings of children with other disabilities or siblings of typically developing children. The main aims of the present study were: 1. To compare the behavioural adjustment of siblings of children with autism and intellectual disability (ID) with adjustment in siblings of children with ID, and a normative sample; and 2. To examine factors that may be related to the adjustment of siblings of children with autism. In addition to a cross-sectional exploration of these questions, data were gathered for an 18 month follow-up of these siblings. Method: Mothers rated the adjustment of the sibling closest in age to the child with ID with or without autism. Data were available on 13 brothers and 13 sisters of siblings of children with autism (mean age [SD] = 10.4 [3.3]), and 18 brothers and 9 sisters of children with ID (mean age [SD]= 11.3 [3.5]). Mothers completed the Strengths and Difficulties Questionnaire (SDQ), a standardized measure of behavioural and emotional adjustment for children and adolescents, and a number of other measures about themselves and their family. Data are available for 17 siblings of children with autism followed up 18 months later. Results: Siblings of children with autism were rated as having more emotional problems when compared with siblings of children with ID and also with a normative sample of British children. No other dimensions of adjustment showed group differences. Siblings of children with autism who were younger than the child with autism, had a sister with autism, and whose sibling was older had more reported emotional problems. Socioeconomic deprivation was associated with higher levels of reported emotional and behavioural adjustment difficulties. Over 18 months, behavioural and emotional adjustment (with the exception of problems with peers) was stable for the siblings of children with autism (r values >.70). Conclusions: These data suggest that adjustment problems in siblings of children with autism and ID may be confined to emotional difficulties. Although a number of correlates of emotional problems were also found, the mechanism for these increased emotional problems is not clear and should be explored in future research. 75 21. POSTER SESSION 1 Health Knowledge and Expected Outcomes of Risky Behaviour: A Comparative Study of Non-Disabled Adolescents and Young People with Intellectual and Physical Disabilities Pownall, J*, Jahoda, A, Wilson, University of Glasgow, Scotland, UK. *Section of Psychological Medicine, Division of Community Based Sciences, Gartnavel Royal Hospital, University of Glasgow, Glasgow, G12 0XH, UK Contact: [email protected] Introduction: The physical health needs of people with intellectual disabilities are increasingly being advocated. Unfortunately there is an absence of research focusing on young people with intellectual disabilities in relation to their understandings about health and the factors that promote or maintain healthrisking behaviours. However, there is often an assumption that a lack of health understanding arises from their cognitive deficits. The present study adopted a group comparison design in order to examine the role played by social exclusion in the acquisition of health knowledge. As young people with intellectual and physical disabilities are more likely to experience social exclusion, the opportunities they have to talk about health may be fewer and this in turn may impact upon their knowledge. It was hypothesised that gaps in knowledge would be more marked for private and sensitive topics like sexual health, which are discussed far less openly than other more public topics such as healthy eating or alcohol. Methods: Seventy-six young people aged between 15-21 participated in the study. The health knowledge of the following three groups of young people were compared: (i) 34 with no known disability (ND), (ii) 34 with a mild/moderate intellectual disability (ID), and (iii) 28 with a physical disability (PD). Questionnaires and semi-structured interviews were used to elicit both quantitative and qualitative data regarding knowledge of two public health areas (healthy eating and alcohol consumption) and two private areas (contraception and AIDS). Information was also collected regarding participants’ social networks and sources of health knowledge. Results: Chi-square tests revealed that young people with ID had poorer health knowledge overall when compared to the ND and PD groups. However, with regard to contraception, both the ID and PD groups performed similarly. As the PD group had no intellectual impairment, this suggests that such knowledge deficits were a result of social exclusion as opposed to an ability to understand and retain information per se. Young people with disabilities also had significantly fewer social contacts in and out of school/college and reported having fewer opportunities to discuss and access information regarding sexual health than their non-disabled peers. The qualitative data also revealed major misunderstandings in relation to sexual health across groups, although this was more pronounced for the ID and PD groups. Discussion: Young people have a good grasp of key health messages in relation to healthy eating and alcohol consumption. For more private health topics like safe sex it appears that limited opportunities to socialise with peers and engage in age normative tasks, and poorer access to other sources of information is negatively impacting upon knowledge. If we are to empower young people to make sensible and informed decisions about their health, we must take into account their lay theories of health, including both understandings and misunderstandings. By starting with people’s own meanings of health and illness we are better positioned to design effective education strategies. . 76 22. POSTER SESSION 1 Parental Coping Assistance with Peer Problem Solving for Children with Intellectual Disabilities Kara Snead1, Frank J. Floyd1, & Janis Kupersmidt2 Georgia State University, 2University of North Carolina at Chapel Hill Contact: Kara Snead Georgia State University PO Box 5010 Atlanta, GA 30302 [email protected] 1 Children with intellectual disabilities experience problems with peers that are especially difficult for them to manage. Parents are likely a primary source for learning skills to cope with peer problems. At present, there is lack of research concerning parental coping assistance for children with intellectual disabilities. Compared to parents of children without disabilities, parental coping assistance might differ because of varying perceptions of the children’s abilities and needs and the child’s role in the problem. This study explored how parents of children with intellectual disabilities assisted their children with managing peerrelated problems. We expected that, compared to other parents, those who have children with intellectual disabilities would perceive their children as having less control over the peer problem and, thus, would tend to suggest or provide passive, palliative coping assistance rather than active strategies, or would directly manage the problem for the child. Participants included 136 families (including both mothers and fathers, when present) with children, 8-10 years old, in three groups: children with mild or moderate mental retardation or Down syndrome (MR group, n = 44), children with learning disabilities (LD group, n = 60), and children who are typically developing (Comparison group, n = 32). Parents were interviewed separately using the Parental Socialization of Coping interview (Kupersmidt, Clarke, & Morey, 1997). During the interview, the parent described a recent peer problem experienced by the child and answered a series of questions about perceived control by the child over the stressor occurring in the first place and continuing once it began, and control over the outcome. The parents also described their efforts to help the child cope with the problem, and reported on other direct activities by the parent toward solving the problem. Finally, they indicated whether the coping efforts were effective and whether the problem was resolved successfully. For this analysis, coping suggestions and activities were classified as active coping assistance, which included offering advice, suggesting behavioral strategies, aiding the child in analyzing the problem, and engaging in active problem-solving with the child. Passive coping assistance included suggesting cognitive avoidance, listening and offering emotional support, and suggesting tension reduction strategies. Initial data analyses indicated that as expected, mothers of children with MR tended to view their children as having relatively little control in the peer situation. However, these mothers provided the least amounts of both passive and active coping assistance, overall. When coping assistance was offered, mothers of children with MR tended to provide fewer passive suggestions and more active suggestions in situations of low control. In comparison, father’s of children with MR made active suggestions during situations of high control and passive suggestions during situations of low control as predicted. Across groups, fathers’ perceptions of child control and coping suggestions did not differ. Contrary to expectations, mothers and fathers engaged in direct parental involvement regardless of their child’s disability status. These findings suggest that the type of coping assistance offered by fathers of children with MR was consistent with perceptions of their child’s control. In contrast, mothers of children with MR provided coping assistance that was incompatible with their perceptions of their child’s control. Although a positive consequence may be that these mothers provide their children with a sense of agency, this may also lead to frustration and confusion for children in uncontrollable peer situations. Therefore, future research should examine the implications of these parent behaviors on social functioning and subsequent peer-related skills for children with MR. 77 23. POSTER SESSION 1 Is Maternal Responsivity Different in Mothers of Young Children with Fragile X Syndrome Compared to Down Syndrome? Audra Sterling, Nancy Brady, and Steven F. Warren University of Kansas 1000 Sunnyside Blvd., Room 1052, Lawrence, KS 66045; [email protected] Parenting style can have a profound impact on the development of young children. For example, maternal responsivity,has been found to impact children’s cognitive, emotional, and language development (Landry, Smith, Miller-Loncar, & Swank, 1998; Landry, Smith, Swank, Assel, & Vellet, 2001). A mother who is highly responsive typically maintains her child’s focus of attention, expands on the child’s initiations, and rarely redirects the child to a new topic. Both fragile X syndrome (FXS) and Down syndrome (DS) present a number of unique challenges that may affect parenting style, including delays in language and communication, and behavioral and attentional problems. Differences associated with the two disorders may differentially affect responsivity, however. Women who are carriers of FXS or who have the full mutation are susceptible to depression and social anxiety, which could affect maternal responsivity. Mothers of children with DS are typically aware of their child’s disability much earlier than mothers of children with FXS and may have developed adaptive interaction styles based on early identification. For this poster presentation, we compare maternal responsivity of mothers of children with DS to mothers of children with FXS. Method: We compared 12 mothers of children with DS to 12 mothers of boys with FXS. The children in both groups were matched on both expressive language raw scores from the Mullen Scales of Early Learning (MSEL; mean score = 16.7 for DS, 16.25 for FXS), and on chronological age (mean = 33.75 mo. for DS; 32.3 mo. for FXS). Mother-child interactions were coded from videotapes of three contexts: free play, book reading, and making a snack. Results: A factor analysis was completed in order to obtain two factors for maternal responsivity. Behavior Management consisted of redirects, zaps and request for behavioral complies. Facilitative Interaction Style was made up of gestures, recodes, request for verbal complies, and comments. We ran t-tests in order to evaluate the differences between the two groups on each factor. The two groups were significantly different on the Behavior Management factor (t=2.634, p=.015), but were not significantly different on the Facilitative Interaction factor (t=.100, p=.921). Follow up analyses indicated that mothers who have a child with DS redirected their children significantly more often than mothers of children with FXS (t=10.834, p=.00), and this difference seems to account for the difference in the Behavior Management factor. Discussion: The finding of significant group differences in the Behavior Management factor was surprising because the children were well-matched on language and chronological age. Research by Legerste, Varghese & Beek (2002) and Marfo (1990) found that language level accounted for differences in maternal interaction style. However, our findings are consistent with those of Mahoney (1988) who found mothers of children with DS were more directive than mothers of children without disabilities. Results should be interpreted with caution, however, due to small sample sizes. Acknowledgement: This research is supported in part by grants 3 P30 HD003110-3 and P30 HD00252839, from NICHD. 78 24. POSTER SESSION 1 The Effects of Prematurity on Concept Formation at Five Years of Age Vicki Sudhalter, Richard C. Belser, Judith M. Gardner and Bernard Z. Karmel N.Y.S. Institute for Basic Research in Developmental Disabilities 1050 Forest Hill Road, Staten Island, New York 10314 [email protected] Introduction: Continuing advances in prenatal and postnatal care have led to an increased survival rate of infants born prematurely, or with various other perinatal risk factors. It has been suggested that the effects of prematurity may continue beyond the neonatal period, and interfere with later neurocognitive development. (Aylward, 2005; Salt & Redshaw, 2006). The data being presented here address the relationship between prematurity and the development of concept formation skills during the early school years. Methods: Our preliminary sample includes 32 children with a mean gestational age of 36 weeks, ranging from 29 to 41 weeks. They had a mean birth weight of 2732 grams, ranging from 1389 to 4479 grams. Each child was administered the Children’s Category Test (CCT, The Psychological Coportation,1993), according to the standard testing protocol. The CCT is designed to assess non-verbal learning, memory, concept formation and problem solving abilities. We used the Level I version of the CCT, which is designed for children between the ages of five and eight years. Each child was shown a stimulus booklet containing colored images of geometric shapes, and a color response card, and was asked to “point to the color that you think of when you look at the picture.” There are four subtests of increasing difficulty, and a fifth subtest which reviews the concepts of the first four. Results: The data from our preliminary sample were examined by multiple regression analysis (using Statistica) to determine the influence of prematurity and age upon CCT performance. The contribution of prematurity (i.e., estimated gestational age at birth) to the CCT standard score was significant [beta = 0.41, p=.02], and its contribution to the Subtest IV score (which includes the most difficult concepts) was also significant [beta = 0.42, p=.02]. The contribution of age at testing was not significant in either case. Discussion: Our preliminary data suggest that there is an important relationship between prematurity and later problems in concept formation abilities. Successful performance on the CCT also requires the ability to change problem solving strategies, to develop alternative solutions, and to benefit from experience. Thus, it directly assesses the cognitive processes required for successful academic achievement. By enhancing our understanding of the relationship between prematurity and such cognitive processes, we will be better able to identify those children at greatest risk for academic problems, and to target remedial resources to those at-risk children who would most benefit from them. Key References: Aylward, G. P. (2005). Neurodevelopmental outcomes of infants born prematurely. Developmental and Behavioral Pediatrics. 26, 427-440. Salt, A. & Redshaw, M. (2006). Neurodevelopmental follow-up after preterm birth: follow up after two years. Early Human Development, 82, 185-197. 79 25. POSTER SESSION 1 Interactive Training on Active Support: Perspectives from Staff, Managers, and Trainers Vaso Totsika, Sandy Toogood, Susie Nash University of Wales, Bangor Vaso Totsika, School of Psychology, University of Wales, Bangor, Adeilad Brigantia, Penrallt Road, Bangor, Gwynedd, LL57 2AS [email protected] Introduction: Active Support (AS) is an organizational technology for people with intellectual disabilities living in small community homes. AS aims to maximize opportunities for people to participate fully in everyday, life-defining activity and engage in meaningful social interaction. Staff working in community homes receive training in AS through group workshops and in-house Interactive Training (IT). Although the effectiveness of AS for people with an intellectual disability has been established, there are no existing data on the experience of staff trained to use AS. This study reports on the IT experience of staff, managers and trainers. Methods: Fifty-eight staff received IT on AS in 10 residential houses. Nine months after the training, semistructured interviews were conducted with 37 staff, 6 house managers, 5 service managers and 6 trainers. The interviews focused on people’s experience of the IT, the way it affected their everyday work and the way the AS model is implemented in the houses they work. Results: Preliminary analyses indicate that for about 90% of staff IT was a positive experience. The opportunity for one-to-one training was the most frequently reported (about 23%) helpful characteristic of IT by staff and managers. Other helpful IT factors included being trained by someone who is not a member of the same staff group (about 17%) and the immediacy with which feedback is given and skills are practiced and corrected (about 17%). The most frequently reported difficulties, when doing IT in a service, were being observed by the trainers (about 30%), organizing the training session (26%) and the difficulties that residents have in participating in an activity (26%). The majority of staff and managers (about 65%) identified at least one new skill people use in their everyday work after IT, and about 25% reported that IT has increased their awareness about support roles and resident needs. Preliminary analysis of the staff and managers’ reports with regard to the way the AS model works in the houses indicates that the implementation was incomplete, with some structural elements of AS completely missing (e.g. teaching plans) and some only partially used (e.g. opportunity plans). Although about 30% of the sample reported that AS was put in place to improve consistency of support, staff could not easily identify the AS structural elements they use and there are indications of discrepancies in the terminology used to refer to them both within and across houses. Discussion: Staff views on IT and AS training is an under-researched area. Findings from the present study will be discussed in relation to the social validity of the intervention and to factors related to the implementation and maintenance of the model in a community residential service. The findings have implications for the design and implementation of staff training on AS in real-world settings. Key Reference: Jones, E., Perry, J., Lowe, K., Allen, D., Toogood, S., & Felce, D. (1996). Active Support: A Handbook for Planning Daily Activities and Support Arrangements for People with Learning Disabilities. Booklets 1-6. Cardiff: Welsh Centre for Learning Disabilities Applied Research Unit. 80 26. POSTER SESSION 1 Life Events and Psychological Outcomes in Adults with Intellectual Disabilities: Longitudinal Relationships Lee Williams*, Richard Hastings, Stephen Noone, Lauren Burns, Jessica Day, John Mulligan School of Psychology, University of Wales Bangor, Brigantia Building, Penrallt Road, Bangor, Gwynedd, LL57 2AS, United Kingdom Introduction: In recent years there has been increasing interest in significant life events as a factor in the aetiology of psychological disorders and challenging behaviour in people with intellectual disabilities. To date, measures have comprised a list of events categorized as negative a priori by clinicians or researchers. Studies using these measures have produced associations of modest effect size. Esbensen & Benson (2006) have suggested that better predictive power may be achieved if the positive or negative impact of life events is considered in the context of the individual’s life. Methods: The Bangor Life Events Schedule for Intellectual Disabilities Informant version (BLESID-I) comprises a list of 38 events, each rated on two dimensions: frequency (never, once, or more than once) and impact (5point scale from considerable negative impact to considerable positive impact). The BLESID-I was completed with carers of 89 people across the range of intellectual disability (preliminary data here; N=40). The current study was longitudinal with a three-year time lag to address issues relating to the direction of causality. Outcome measures of anger, aggression, physical and mental health and adaptive behaviours were taken. Results: A scoring technique was developed based on the approach of defining life events as negative in the context of the participant’s life. This system of scoring produced stronger associations with the psychological measures and was thus taken forward into further analyses. Five regression models were tested, each predicting a measure of outcome from negative life events, controlling for an initial levels on the outcome measure. The negative life event measure was found to significantly predict anger (β = .34, p = .03), aggression (β = .50, p < .01), affective/neurotic symptoms (β = .50, p < .01), and psychotic symptoms (β = .54, p < .01). The prediction of adaptive behaviour approached significance (β = .19, p = .05). No significant associations were found between earlier measures of adjustment and subsequent life events, suggesting a uni-directional relationship in this sample. Discussion: We have provided further evidence for the importance of significant life events in the aetiology of psychological disorder and challenging behaviour. The associations are generally stronger than those found elsewhere in the literature, suggesting that the BLESID represents an improvement in life event measurement in the ID population. Further data are needed to address the reliability of the BLESID, however, completion of the BLESID with a carer may provide a quick way to provide evidence for or against a number of differential diagnoses in a given presentation. Esbensen, A. J., & Benson, B. A. (2006). A prospective analysis of life events, problem behaviours and depression in adults with intellectual disability. Journal of Intellectual Disability Research, 50(4), 248-258. 81 Symposium 7 S Y M P O S I U M 7 Selective Neuropsychological Changes Across the Adult Lifespan in Down Syndrome Chair: Darlynne A. Devenny New York State Institute for Basic Research in Developmental Disabilities Discussant: A.J. Holland University of Cambridge 82 SYMPOSIUM 7 Selective Neuropsychological Changes Across the Adult Lifespan in Down Syndrome Chair: Darlynne A. Devenny New York State Institute for Basic Research in Developmental Disabilities Discussant: A.J. Holland University of Cambridge Declines in Visuo-spatial Abilities in Young Adults with Down Syndrome D.A. Devenny, P. Kittler, S.J. Krinsky-McHale New York State Institute for Basic Research in Developmental Disabilities Visuo-Spatial Working Memory Decline Associated with MCI and DAT S.J. Krinsky-McHale1 ,P. Kittler1,W. Silverman2,D.A. Devenny1 1 New York State Institute for Basic Research in Developmental Disabilities 2 Kennedy Krieger Institute and John Hopkins University School of Medicine Neuropathological Evidence of Alzheimer’s Disease in Down Syndrome L.D. Nelson, V. Kepe, P. Siddarth, J. Barrio, G. Small University of California Los Angeles 83 SYMPOSIUM 7 Declines in Visuo-Spatial Abilities in Young Adults with Down Syndrome D.A. Devenny, P. Kittler, S.J.Krinsky-McHale New York State Institute for Basic Research, Staten Is. New York Contact: [email protected] Introduction: Down syndrome (DS) is the most common genetic condition leading to a developmental disability, with recent studies showing that aging occurs prematurely. Very little is known about cognitive development across the adult lifespan of individuals with DS because studies of age-associated decline rarely include young adults (Devenny et al., 1996; Hawkins et al., 2003; Oliver et al., 1998). Down syndrome is associated with a specific cognitive profile that includes a relative strength in visuo-spatial processing and a relative weakness in auditory working memory and central executive functioning. However, there are no studies with a broad enough age range to examine how the unique set of abilities associated with the behavioral phenotype of DS interacts with normal aging processes. Method: All participants had DS, with full trisomy 21 confirmed by cytogenetic testing. Participants older than 35 years have been followed with neuropsychological measures in a longitudinal study and none have shown the declines or symptoms associated with Alzheimer’s disease. IQ scores across groups were comparable (Table 1.) We compared performance on three working memory visuo-spatial tasks (1. Corsi Block-tapping Test forward and backward; 2. Table Top Test involving spatial but not sequential memory; 3. Visual Sequential Memory Test (adapted from the Illinois Test of Psycholinguistic Abilities) with three working memory auditory tasks (1. Digit span forward and backward; 2. Word span; 3. Sentence Repetition). Performance on each task was analyzed with an ANCOVA with age-group as a between-subjects factor and IQ as a co-variate. Results: Significant differences between age-groups were found Table 1 for each of the visuo-spatial working memory tasks, except for Age-Group N Age IQ the Corsi span forward. Post hoc paired-comparisons showed that participants younger than 25 years performed significantly better 15 – 24 yrs 8 19.7 + 3.1 59.2 + 7.2 than all other groups on Corsi span backward. On the Table Top Test, participants younger than 35 years were better than 10 29.9 + 4.3 56.9 + 6.6 participants in the two older groups. On the Visual Sequential Memory Test participants younger than 35 years were better than 35 – 44 yrs 22 40.0 + 2.8. 59.8 + 8.0 individuals older than 44 years, but were not significantly different from those in the 35-44 yr decade In contrast, there were no 45 – 54 yrs 24 49.4 + 3.2 52.7 + 9.0 significant age-group differences on the auditory working memory tasks, although Sentence Repetition approached significance (p 14 = .052) with small declines observable across the age-groups. 12 Cor s i Span Back w ar d 10 8 6 4 2 0 15 - 2 4 25- 34 35- 44 45- 54 A ge Gr oup Discussion: This study confirms a previous, preliminary finding that visuo-spatial working memory declines early in adult life in adults with DS (Devenny et al., 1999). Since visuo-spatial processing is an area of cognitive strength, these declines are likely to have an important impact on overall cognitive organization in these individuals. Similar declines in auditory working memory were not observed, indicating that the differences across age groups cannot simply be interpreted as a cohort effect. While the basis of these selective declines are unknown, it may be that the early accumulation of amyloid associated with the third copy of chromosome 21 subtly influences neural processing in the prefrontal cortex and its connection with the visual pathways. Devenny, D.A., Krinsky-McHale, S.J., & Kittler,P. (1999, March). Paper at 32nd Annual Gatlinburg Conference, Charleston, SC. Devenny, D.A., Silverman, W.P., Hill, A.L., Jenkins, E., Sersen, E.A., & Wisniewski, K.E. (1996). JIDR, 40, 208-221. Hawkins, B.A., Eklund, S.J., James, D.R. & Foose, A.K. (2003). Mental Retardation, 41, 7-28. Oliver, C., Crayton, L., Holland, A., Hall, S. & Bradbury, J. (1998). Psychological Medicine, 28, 1365-1377. This work was supported by funds from the NYS Office of Mental Retardation and Developmental Disabilities and by grants from the NIH AG 14771 (Devenny) and HD 35897 (Silverman). 84 SYMPOSIUM 7 VisuoSpatial Working Memory Decline Associated with MCI and DAT 1 S.J. Krinsky-McHale1, P. Kittler1, W.Silverman2, & D.A. Devenny1 New York State Institute for Basic Research in Developmental Disabilities, Staten Island, NY 2 Kennedy Krieger Institute and John Hopkins University School of Medicine Contact: [email protected]. Introduction: Visuo-spatial working memory has been found to be impaired in individuals with dementia of the Alzheimer Type (DAT) in the general population (2). It has also been found to be a relative strength in healthy, young individuals with Down syndrome (DS) (4). It is therefore crucial to understand the fate of this aspect of working memory with the cognitive decline associated with normal aging, mild cognitive impairment (MCI), and DAT. Participants: The current analyses involved a subset of 59 participants with DS from our larger study; 13 participants were in early-stage DAT and had received a diagnosis from a physician (M age=56.92 ±5.12; M IQ=55.31 ±5.12); 14 participants were classified as exhibiting MCI because they have shown significant memory decline without observed changes in adaptive functioning (M age= 54.21±5.27 yrs, M IQ=48.14 ±10.24); and 32 participants have remained healthy (M age =53.79 ±5.94, M IQ=53.03 ±13.02). All participants had full trisomy 21 confirmed by cytogenetic testing. Procedure: Two measures of visuo-spatial working memory were administered, (a) the forward span of the Corsi Block-Tapping Test (5) reflecting the spatial component of visuo-spatial working memory by assessing the ability to reproduce a series of block taps in the correct sequential order, and (b) The Visual Sequential Memory Test (VSM), an adaptation of the Illinois Test of Psycholinguistic Abilities (3) reflecting the visual component of visuospatial memory by assessing the ability to reproduce a pattern of 2-dimensional non-meaningful figures from memory. For both measures the score was the length of the last sequence that was correctly reproduced. 6 5 4 H ealthy M CI D AT 3 2 1 0 Cor si VS M Results: Performance on both measures of visuo-spatial working memory was significantly affected by dementia status. Post hoc comparisons showed that individuals with early-stage DAT had significantly lower spans on both the Corsi and the VSM compared to their healthy peers and to those with MCI (see figure). However, impairment in visuo-spatial working memory in individuals with MCI was not uniform. Their span on the VSM was comparable to that of the healthy group whereas their span on the Corsi was significantly lower. Key References: Discussion: In individuals with DS and early-stage DAT, both the visual and spatial components of visuo-spatial working memory were impaired. In contrast, individuals with MCI showed impairment in their spatial span but relatively preserved visual span. Deficits in the spatial component of visuospatial working memory then, may be characteristic of DAT several years before clinical diagnosis. These results support the view that different neural substrates are involved in the visual and spatial aspects of visuo-spatial working memory. In MCI, the dorsal cortical stream (responsible for processing spatial characteristics of stimuli) may be more compromised relative to the ventral cortical stream (responsible for processing visual characteristics) and hence the relative sparing of function subserved by this region (1). 1. Atkinson, A., King, J., Braddick, O., Nokes, L., Anker, S., & Braddick, F. (1997). Neuroreport, 8, 1919-22 2. Grossi, D., Becker, J.T., Smith, C., Trojano, L. (1993). Psychological Medicine, 23, 65-70. 3. Kirk, S.A.,McCarthy,J.J., Kirk,W.D. (1968). ITPA-Revised. Urbana, IL: University of Illinois Press. 4. Lanfranchi, S., Cornoldi, C., & Vianello, R. (2004). American Journal of Mental Retardation, 109(6), 456-66. 5. Logie, R. (1986). The Quarterly Journal of Experimental Psychology, 38A, 229-47. 6. Milner,B. (1971). British Medical Bulletin, 3, 272-7. This work was supported by funds from the New York State Office of Mental Retardation and Developmental Disabilities and NIH grants R01 AG14771 (Darlynne A. Devenny) and P01 HD35897 (Wayne Silverman). 85 SYMPOSIUM 7 Neuropathological Evidence of Alzheimer’s Disease in Down Syndrome Nelson, L.D., Kepe, V., Siddarth, P., Barrio, J., Small, G. University of California, Los Angeles (UCLA) Contact: [email protected] Introduction: Neuropathological studies have shown that virtually all adults with Down syndrome (DS) develop the neuropathology associated with Alzheimer’s disease (AD) beginning in their 3rd decade of life. Until the recent development of neuro-imaging techniques, however, it has not been possible to show a direct association between performance on neuropsychological measures and the presence of neuropathological markers of AD. Method: Participants with full trisomy 21 were examined based on neuropsychological measures and a radio-labeled probe ([18F]FDDNP PET) that determines level and location of β-amyloid (a hallmark sign of AD). The current study was designed to provide preliminary results from N=11 subjects with DS, ranging in age from 23 to 50 years. Performance was assessed on a neuropsychological test battery. The unique aspect of the test battery was that it included translational research in which five tests derived from animal models of learning and memory were used, as well as standardized direct and indirect measures of neuropsychological and emotional functioning. Subjects with DS were compared to age-matched healthy controls and people diagnosed with AD from the general population. Results: Eight PET scans were of sufficient quality to perform the analysis. Closer examination of the four subjects with Down syndrome who demonstrated highest [18F]FDDNP values showed their ages as 30, 32, 41, and 50, consistent with the literature which supports a significant increase in neuropathology following age 30. Of interest is that the 41 year-old and the 50 year-old were suspected of having dementia based on their performance on the neuropsychological test battery. The 32 year-old individual performed well below the sample mean on the measure of executive (frontal) functioning and was similarly judged as impaired by her caregivers on frontal measures of emotional and pragmatic language functioning. Fig 1. Representative parametric images of [18F]FDDNP. In Fig. 1 (left), patterns of β-amyloid and neurofibrillary tangle deposition are illustrated in four subjects: A normal control, a young person with DS, an older individual with DS, and a person with AD from the general population. As seen here, in vivo visualization of the deposition pattern in a 41-year old individual with DS was similar to that of an individual with AD. In the younger subject, β-amyloid and neurofibrillary tangle deposition was similar to a control subject, with some indication of increased deposition in the posterior cingulate gyrus. Discussion: When related to results of functional brain imaging and neuropathology of AD, specific neurobehavioral functions emerged which suggested early frontal involvement in the course of AD. Preliminary results support feasibility of these methods as a means of early detection of AD in people with DS. This work was supported by funds from the Charles Epstein award of the National Down Syndrome Society to LDN. Fig 1. Representative parametric images of [18F]FDDNP. 86 Symposium 8 S Y M P O S I U M 8 Behavioral Phenotypes Chair: Travis Thompson, Department of Pediatrics Autism Program, University of Minnesota School of Medicine 87 SYMPOSIUM 8 Behavioral Phenotypes Chair: : Travis Thompson, Department of Pediatrics Autism Program, University of Minnesota School of Medicine Prader-Willi Syndrome, Oxytocin, and Behavior Elisabeth Dykens, Elizabeth Roof, Elizabeth Pantino, Rebecca Kossler, Ray Johnson, Mayim Bialik, Hossein Nazarloo, and Sue Carter Vanderbilt Kennedy Center Autism: Predictors of Response to Treatment as Behavioral Phenotypes Travis Thompson1 Glen Sallows2 1 2 Dept of Pediatrics Autism Program, University of Minnesota School of Medicine Wisconsin Early Autism Project Behavioral Phenotype in Relationship to Analysis of Behavioral Function and Intervention William J. McIlvane, Curtis K, Deutsch, Krista M. Wilkinson, & William V. Dube University of Massachusetts Medical School - Shriver Center 88 SYMPOSIUM 8 Prader-Willi Syndrome, Oxytocin, and Behavior Elisabeth Dykens, Elizabeth Roof, Elizabeth Pantino, Rebecca Kossler, Ray Johnson, Mayim Bialik, Hossein Nazarloo, and Sue Carter Vanderbilt Kennedy Center, 230 Appleton Place, Nashville TN 37203 Contact: [email protected] Introduction: Prader-Willi syndrome (PWS) is a genetic disorder associated with a distinctive behavioral phenotype, including intellectual disabilities, compulsive behaviors, skin-picking, hyperphagia, and risks of morbid obesity. Many persons with PWS also have increased interests in the caretaking of others, including pets and children. Oxytocin (OT) is a neuropeptide strongly implicated in social learning and memory, as well as in attachment, appetite regulation, and repetitive behaviors. Previous studies identified decreased OT-secreting neurons in the hypothalamic paraventricular nuclei of adults with PWS, as well as elevated CSF levels of OT. Aberrant OT has thus been implicated in the broad PWS phenotype, but direct links have not yet been made between OT and specific behavioral features of PWS. This study compared levels of OT in PWS and typical controls, and also related levels of OT and a related peptide, vasopressin (VP), to salient aspects of the PWS behavioral phenotype. Methods: OT and VP assays were conducted on plasma samples from 25 persons with PWS (11 males, 14 females) aged 13 to 45 years (M = 21 years). Of these, 11 had paternal deletions of chromosome 15 (q11-q13), 9 had maternal uniparental disomy, and 5 had either microdeletions or translocations. Participants were part of a larger longitudinal study on PWS, and they and their families were individually administered measures that tapped: hyperphagia, compulsivity, social skills, nurturance, personality, and maladaptive behavior (e.g., Yale-Brown Obsessive-Compulsive Scale; Reiss Personality and Motivation; Vineland Adaptive Behavior Scales; Hyperphagia Questionnaire). Levels of OT and VP were also obtained from the plasma of 31 typical controls, matched on age, gender, and degree of obesity (BMI). Results: Levels of OT and VP were significantly elevated in PWS relative to controls (M’s = 337.63 pg/ml versus 144.33 pg/ml, p < .05). Within the PWS group, persons with maternal UPD had significantly lower levels of VP compared to those with paternal deletions (50.74 versus 107.16); there was a trend for OT to be lower in the UPD group as well. Males had significantly higher levels of OT and VP, but were otherwise similar to females in BMI, age and behavioral measures. Levels of OT or VP were not associated with BMI or hyperphagic behavior. VP was positively correlated with poor frustration tolerance, and with repetitive acts and counting compulsions on the Y-BOCS. OT was positively correlated with two variants of skin-picking in PWS: hair pulling and rectal digging, as well as with increased scores on the Vineland Socialization scale. Discussion: Although preliminary, findings suggest more robust ties between OT, VP and repetitive behaviors and socialization skills than to hyperphagia. Findings will be discussed in relation to aberrant OT in other developmental or psychiatric disorders, eg., autism and OCD. Consistent with the theme of this symposium, implications will also be made for possible endophenotypes within PWS. This research was supported by grants from NICHD; R0135681-07 and P30HD15052, the Vanderbilt Kennedy Center, and the Vanderbilt GCRC. 89 SYMPOSIUM 8 Autism: Predictors of Response to Treatment as Behavioral Phenotypes Travis Thompson and Glen Sallows Contact:Travis Thompson, Dept of Pediatrics Autism Program, University of Minnesota School of Medicine, Minneapolis,MN 55455 [email protected] ; Glen Sallows, Wisconsin Early Autism Project, 6402 Odana Road, Madison, WI 53719 [email protected]; Tammy L. Graupner, Wisconsin Early Autism Project, 6402 Odana Road, Madison, WI 53719 [email protected] Introduction: Autism Spectrum Disorders are a complex set of developmental disabilities that have defied empirically valid sub-phenotyping. The ability to predict response to treatment is a widely used strategy for identifying subtypes in other fields which can subsequently lead to identifying underlying mechanisms responsible for differences. In the present report we describe early intervention outcomes for two groups of children with autism spectrum diagnoses who received intensive early behavioral intervention; Methods: Children with autism (2-4 years old at enrollment) were evaluated using standard diagnostic and psychological assessment batteries before participating in an intensive early behavior therapy program. In one group (Wisconsin) 24 children participated in early intervention for 4 years with a mean number of 3139 hours per week. In a second group (Minnesota) children received an average of 18 hours per week over 18 months. In the Minnesota sample 45 children participated in intensive early behavior therapy an average of 18 hours per week. Post therapy gains were assessed at 4 years (Wisconsin) and 12-18 months(Minnesota). Results: IQ (FS, V, P), receptive language, and ADI-R social and communication scores were significantly associated with rapid learning in the Wisconsin sample. Children in the Rapid Learning Group had significantly higher scores on the Early Learning Measure, a simple discrimination learning task. Children who fell into the “rapid learner” Wisconsin group achieved most of their gains in the first 12-24 months of early intervention. In the Minnesota sample, fifty three percent functioned sufficiently well after 18 months to be placed in regular education classrooms with pull-out and minimal supports. 25% were in special education classrooms for children with autism or intellectual disabilities. 4% were in regular and special education classrooms part of the day. The remainder were home schooled. Chlldren who ended up in regular education classrooms exhibited the most rapid and largest gains on the receptive and expressive communication scales of the Assessment of Basic Learning and Language Scales. Discussion: Children with autism who learn rapidly in intensive early intervention appear to correspond to Miles et. al. (2005) Essential Autism, a familial form with a significantly higher recurrence rate within families. Children with Miles et. al. (2005) Complex Autism do not have greater risk of recurrence within families and appear to have experienced an early morphogenesis error, manifested by significant dysmorphology or microcephaly. Individuals with complex autism have lower IQs (P=0.006), more seizures (P=0.0008), more abnormal EEGs (46% vs. 30%), more brain abnormalities by MRI (28% vs. 13%), and perform less well in interventions. Future research using gene microarrays may make it possible to further refine Essential Autism endophenotypes and to devise targeted early interventions for children with autism subtypes. Miles et.al. (2005) Am J Med Genet A. 135(2):171-80. Sallows G and Graupner, TL (2005) Am J Ment Retard 110:417-438 90 SYMPOSIUM 8 Behavioral Phenotype in Relationship to Analysis of Behavioral Function and Intervention William J. McIlvane, Curtis K, Deutsch, Krista M. Wilkinson, & William V. Dube University of Massachusetts Medical School - Shriver Center, 200 Trapelo Road, Waltham, MA 02452 Contact: [email protected] Introduction: term “behavioral phenotype,” is applied to specify distinctive characteristics in subtypes of MRDD as defined by etiology or phenomenology. Behavioral phenotypes are of interest, because taking characteristic group differences into account may facilitate efforts to resolve population heterogeneity, clarify causal pathways, and define clinically important targets for therapeutic interventions. Moreover, if one is interested in a comprehensive analysis of behavioral function, it is important to know about the degree to which behavioral phenotypes interact with such analysis and associated intervention procedures. As the behavioral science of MRDD moves forward within a context of substantial and growing interest in genetic and other biological processes that influence behavior, we think it important to consider thoughtfully and to discuss the implications of the following questions: Methods: Several programs of research will address the following issues: 1) Selected data from recent studies of children with autism and Down syndrome will examine the extent to which research has adequately consider behavioral phenotype when developing procedures aimed at the improvement of behavioral function. Given that research has demonstrated statistically significant differences among different etiological subgroups, we will consider how these differences may be considered in designing intervention procedures aimed at prevention or amelioration of intellectual disability and associated behavioral deficits. We will consider and evaluate data and approaches to data interpretation that suggest the need for (or not) special procedures for responding to the characteristics of the behavioral phenotype. 2) To what extent do behavioral characteristics of individuals with Asperger syndrome inform us about behavioral processes in children with more substantial intellectual disabilities? Research has not adequately demonstrated that behavioral phenotypes defined for high-functioning individuals within a given diagnostic category predict the performance of individuals whose development is less advanced? 3) Studies will be presented indicating that behavioral tendencies associated with specific diagnostic categories are not static entities exerting ongoing influence independent of environment-behavior interactions? Evidence will be presented from investigations of “stimulus overselectivity”, i.e. maladaptive restricted stimulus control in learning situations – an outcome that may be especially prominent in autism spectrum disorders. We have had substantial success in broadening stimulus control under some circumstances, raising the questions of what the behavioral phenotype associated with this disorder actually is and whether inferences drawn from limited studies are justifiably extended. Discussion: Greater attention to behavioral phenotypes should be considered in developing interventions of specific disabilities. Findings based on data from higher functioning individuals cannot be assumed to be generalizeable to lower-functioning individuals with the same or similar disabilities. Phenotypic features commonly associated with specific disabilities may be malleable with appropriate interventions, suggesting they may not be immutable phenotypic characteristics. Supported by NICHD grants HD04147, HD25995, & HD04666 91 Symposium 9 S Y M P O S I U M 9 Biobehavioral Analyses of Self-Injurious Behavior Chair: 92 Frank J. Symons Department of Educational Psychology University of Minnesota SYMPOSIUM 9 Biobehavioral Analyses of Self-Injurious Behavior Chair: Frank J. Symons Department of Educational Psychology University of Minnesota, Minneapolis, MN 55455 A Comparison of the Frequency, Location, and Function of Self-Injurious Behavior between High and Low Intensity SIB Cases Chin-Chih Chen University of Minnesota A Comparison of the Frequency of Nonverbal Behavioral Indices of Pain Expression between SIB and Control Cases During Censory Testing Stacy Danov University of Minnesota Integrating Autonomic Arousal into Functional Behavioral Analysis of Self-Injury John Hoch University of Minnesota A Comparison of Epidermal Morphology and Physiology between SIB and Control Cases Frank Symons University of Minnesota The conceptual model for this symposium begins by recognizing that chronic SIB typically involves repeated, forceful stimulation to specific, localized body sites (e.g. hitting specific spot on head, picking an area on the leg, biting a specific part of the hand), rather than random patterns of SIB distributed to various points on the body. A subset of individuals with chronic SIB and developmental disabilities may have dysregulated pain capacities manifest in the form of altered pain sensory thresholds and/or impairments in pain expression and regulation. This conceptualization of SIB does not directly address etiology nor address whether pain is a cause or consequence of SIB, but it does provide a framework to test several predictions specific to behavioral and biological endpoints relevant to both SIB and pain. Pain mechanisms can be indexed in a variety of ways including the properties of the stimulus (frequency, intensity, body location), sensory reactivity and behavioral expression, autonomic response, and neurophysiology. SIB can also be influenced by the environment, such that any examination of physiological factors must also take into account the possibility of environmental mediation. Ultimately, if pain mechanisms play a part some forms of self-injury, then new directions for assessment and treatment need to be developed. In this symposium, four papers will be presented from ongoing studies providing initial tests examining SIB along a number of biobehavioral dimensions including (a) the relation between environmental mediation and behavioral pain parameters (frequency/body sites/intensity), (b) sensory reactivity and pain expression (c) autonomic reactivity, and (d) neurophysiology. 93 SYMPOSIUM 9 A Comparison of the Frequency, Location, and Function of Self-Injurious Behaviors between High and Low Intensity SIB Cases Chin-Chih Chen1, Jamie Clary3, Dawn Parker3, Vicki Harper3, James W. Bodfish2,3, & Frank J. Symons1 1 University of Minnesota, Minneapolis, MN 55455 2 UNC-Human Development Research Institute, 3Riddle Developmental Center Introduction: There may be SIB subtypes that are related to the topographical or structural features of SIB expression (frequency, location, intensity) which share a common underlying pathophysiology relevant for biobehavioral analyses of SIB. In previous work, our group has quantified SIB location to test group differences in syndrome specific and nonspecific developmental disabilities. In this study we tested the hypothesis that there would be differences between high and low intensity SIB in relation to structural and functional features of SIB. Specifically, structural (frequency, duration, location) and functional (contingent staff interaction) features of SIB were measured and compared between matched high- and low-intensity SIB cases. We hypothesized that high but not low intensity SIB cases would have more frequent (rate) and more localized (% of body surface area) SIB and be less socially mediated (lower Yule’s Q values). Methods: SIB was directly observed for three 15 min sessions for 69 individuals with chronic SIB (50% male; mean age = 43; > 90% profound cognitive impairment). Observational data were collected during similar contexts for each participant associated with individual support plans and rehabilitation activities. Data were collected using hand-held iPAQ Pocket PC handheld devices with Observer 5.0 Mobile software and were analyzed using the Observer and MOOSES observational software packages. Summary (frequency, duration) and sequential analyses (sequential dependencies) were performed to test differences between high and low intensity SIB cases. High (HI) and low intensity (LI) groups were formed by scores on the Self-Injury Trauma Scale (SITS) for SIB severity index (p < .001) and number of wounds (p < .001). Correlations were examined between the degree of environmental mediation (Yule’s Q) and SIB frequency, duration, and location. Results: Interobserver agreement (A/A&D) was calculated for 28% of sessions and was 93% for frequency codes and 85% for duration codes. Overall frequency of SIB between high (0.28/min) and low (0.32) intensity SIB groups was similar, but the mean duration of SIB was considerably greater for the HI (302 sec) versus LI (198 sec) group (p < .06). The HI group’s SIB was more localized than the LI group (99 vs 125 cm2). There were significant (p < .05) inverse linear relations between location (i.e. total body surface area; TBSA) and social mediation (i.e., probability of contingent staff interaction) between the HI (r = - 0.26) and the LI (r = 0.36) SIB subgroups. The more TBSA the less likely staff interacted contingently to SIB for the HI group but the more likely staff interacted contingently to SIB for the LI group. Discussion: Overall, the HI SIB subgroup spent more time in SIB directed to more localized body areas compared with the LI group. The sequential pattern of staff interaction contingent on SIB was different between HI and LI subgroups. Although preliminary, this set of analyses provides initial evidence for the relevance of a structural subtype distinction based on the intensity and location of SIB Supported, in part, by NICHD Grant No. 44763 94 SYMPOSIUM 9 A Comparison of the Frequency of Nonverbal Behavioral Indices of Pain Expression between SIB and Control Cases during Sensory Testing Stacy Danov1, Satomi Shinde1, Chin-Chih Chen1, Jamie Clary3, Vicki Harper3, Dawn Parker3, James W. Bodfish2,3, & Frank J. Symons1 1 University of Minnesota, Minneapolis, MN 55455 2 UNC-Human Development Research Institute, 3Riddle Developmental Center Introduction: There may be subtypes of SIB cases associated with altered pain experience and expression. Because pain is difficult to assess in individuals with developmental disabilities its relation to SIB is not well understood. This study draws upon the large body of empirical evidence for objective, nonverbal signs of emotional expression based on changes in facial action units (FAUs; Ekman & Friesen, 1978). FAUs are anatomically based configurations of facial musculature that can be directly observed and reliably coded and have been used to identify pain based on empirically validated facial coding of expression during known painful events such as vaccination, blood draw, or minor invasive procedures. The specific purpose of this preliminary study was to code and compare FAUs between a sample of adults with chronic SIB and matched controls during a modified quantitative sensory testing protocol (mQST) to evaluate their sensitivity and specificity. Methods: Facial actions were examined between a chronic SIB (n = 36; 40% male; mean age = 45) and matched control group (n = 21; 57% male; mean age = 44) during a mQST procedure. Each participant was seated on a chair in front of a medical examining screen. A trained clinician applied five different sensory stimulus modalities (i.e., pin prick, heat, cold, deep pressure, light touch) to the participant’s back in a randomized order. Each participant received 10 trials that included exposure to all sensory modalities. To ensure coders were blind, half of the trials were sham (i.e., no stimulus was applied) although the clinician continued to signal each trial in a standardized way. A camera set up orthogonal to the participant and focused on the face was used to collect digital video for subsequent coding using Pro-Coder Digital Version (PCDV). Sixteen FAUs were selected for initial analyses based on reviewing the pain expression literature with other vulnerable populations. Mean between-group differences in FAUs were examined in addition to stimulus vs sham comparisons. A set of head movements were also measured to evaluate any differences in head movement associated with the mQST. Results: Inter-observer agreement was calculated on 32% of sessions and was 74% (FAUs) and 90% (head movement). There were significant (p < .01) differences between the SIB (mean FAU freq = 1.75) and no SIB (mean FAU freq = 0.84) control group for overall FAU activity. When FAUs were examined in relation to modality, the SIB group had greater FAU activity for each specific modality than controls. There were no between group differences for head movement (turn, back, forward). Mean FAU activity during stimulus trials was greater than during sham trials although this difference was not significant. Discussion: Overall there were differences between SIB and matched controls in FAU activity (sensitivity). Although preliminary, the observation that there were different FAU activity patterns is consistent with the possibility of altered sensory expression associated with chronic SIB but a more specific measure may be necessary. Supported, in part, by NICHD Grant No. 44763 95 SYMPOSIUM 9 Integrating Autonomic Arousal into Functional Behavioral Analysis of Self-Injury John Hoch1, Mika Tarvainen2, & Frank J. Symons1, University of Minnesota; 2University of Kuopio, Finland 1 Introduction: Little is known about the role of internal physiological processes underlying severe problem behaviors. By integrating real time observation of behavior with online recording of autonomic function, researchers could gain insight into problem behavior that is unresponsive to social contingencies. This study extends previous work by Freeman et al, (1999) by recording RR interval heart rate data allowing more precise quantification of heart rate variability as well as collecting the data during classroom based functional behavioral analyses (FBA) allowing for greater experimental control over consequences for problem behavior. Methods: The relative influence of problem behavior and changes in FBA condition on derived cardiac measures (heart rate, heart rate variability and sample entropy) were analyzed using time lag sequential analysis for three children with developmental disabilities and self injury and aggression. Yule’s Q’s of changes in cardiac measures before and after problem behavior and changes in FBA conditions were compared using a resampling procedure (Yoder, et al 2001). Within-subject ANOVA analyses were also employed to examine the variance in cardiac measures accounted for by problem behavior and FBA conditions. Results: Correlations were higher for FBA condition than for problem behavior for all participants despite the lack of differentiation of problem behavior across conditions. Sequential analysis found no changes in heart rate greater than 1 standard deviation than the participant’s baseline values in the 10 seconds preceding or following problem behavior compared to chance occurrence for the participants. No sequential associations were found preceding or following changes in FBA conditions. Discussion: This study suggests that integrative analysis of physiological arousal can be used to discern the role of autonomic arousal in self injury or other forms of destructive behavior. Documenting autonomic changes may be relevant to discerning possible subtypes. The methodology demonstrated here improves our understanding of behavior that is not differentiated in FBA’s by examining variation in underlying physiological processes. Limitations include the self selected nature of the sample and missing heart rate data due to participant refusal to wear device. Supported, in part, by NICHD Grant No. 44763 96 SYMPOSIUM 9 A Comparison of Epidermal Morphology and Physiology between SIB and Control Cases Frank J. Symons1, Gwen Wendelschafer-Crabb1, Elizabeth Gilles2, William Kennedy1, & James W. Bodfish, 3,4 1 University of Minnesota, Minneapolis, MN 55455 2 Gillette Children’s Specialty Healthcare 3 UNC-Human Development Research Institute, 4Riddle Developmental Center Introduction: We hypothezised that there may be a SIB subtype associated with a specific pattern of morphological and neurochemical markers characterized by altered function or structure of the sensory nerve fibers involved in pain signaling and by altered concentrations of neuropeptides involved in pain and stress signaling. The purpose of this preliminary study was to examine the morphology and neuropeptide density of epidermal nerve fibers quantified through skin biopsy samples from individuals with neurodevelopmental disorders and chronic SIB compared with a non-SIB normal and MA-matched controls. Methods: A cross-sectional design was used with 3 mm punch skin biopsies collected from each participant from non-self-injurious body sites and compared with site-matched existing normal control skin samples. The study was conducted at an adult and pediatric outpatient clinic and tertiary care facility. Twenty-five adults (mean age = 41; 65% male; 80% profound cognitive impairment) and 5 children (mean age = 12; 3 male; 100 % profound cognitive impairment) with severe SIB secondary to intellectual and developmental disability were recruited. The primary dependent measure for the morphology analyses was the coefficient of variation (CV) to quantify the mean gap length between epidermal nerve fibers for each subject. Results: Full quantitative analyses have been completed for 10 participants. Visual microscopic examination and qualitative analyses of the microscopy images suggest there are morphological abnormalities characterized as ‘sprouting’ or ‘tufting’ abnormalities in the epidermal nerve fibers among a subset of chronic SIB cases (similar in some case with that observed in small diameter peripheral neuropathies). In 50% of the cases analyzed to date with all fibers counted, variations in ENF distribution resulting from the tufting and clustering of nerve fibers in the SIB cases were clearly observed. Analysis of peptides showed normal levels of CGRP but SP levels were elevated in the chronic SIB cases. Substance P (SP) fiber density was increased with 2 to 3 times as many fibers in SIB subjects as normal IQ control participants and between SIB and developmental disability control participants. Discussion: We found preliminary evidence for altered morphology (i.e., tightly clustered large groupings of nerves with relatively long intervening spaces) and neurochemistry (i.e., elevated SP fiber density). These results from this novel immunohistological analysis of skin in individuals with severe neurological impairment and SIB do not definitively confirm or refute a subtype model, but do suggest that there may be significant differences in the morphology of nerve fibers in at least a portion of chronic SIB cases. The significance of these findings is underscored by the fact that the biopsy was sampled at a non-SIB site with no history of tissue damage. Supported, in part, by NICHD Grant No. 44763 97 Pa p e r Se s s i o n 1 P A P E R 1 FRAGILE X AND AUTISM 98 PAPER SESSION 1 Educational & Therapeutic Involvement by Parents of Young Children with ASD Paul R. Benson Center for Social Development & Education, University of Massachusetts, Boston 100 Morrissey Blvd., Boston MA 02125 Contact: [email protected] The importance of parent involvement in educational & therapeutic interventions for young children with autism spectrum disorders (ASD) is well documented. However, despite its importance, relatively little research has been conducted on this topic. To address this issue, we implemented a longitudinal research project which collected data on parent educational & therapeutic involvement, child & family functioning, & school & non-school services. Questionnaire & interview data from 98 parents of young children with ASD were gathered at 3 points in time approximately a year apart. In addition, teacher data on child classroom behavior & functioning were also gathered annually using standardized assessment instruments. Utilizing these data, & guided by a conceptual model drawing upon ecocultural theory & studies of family adaptation to disability, we examined 5 types of parent involvement: (1) school-based educational involvement; (2) home-based educational involvement; (3) parent facilitation of professional therapies outside of school; (4) parent facilitation of biomedical interventions; & (5) parent educational advocacy. Our presentation of preliminary study findings will focus on a discussion of changes in parent involvement over time as well as multivariate analyses predicting intensity of parent school- & home-based involvement at T1 & T3. Change in involvement intensity for the 5 involvement types were assessed at both the group- & individual-level. Group-level change in intensity of parent involvement was found to be relatively stable over the study’s three time points, however, substantial individual-level change was also observed, with the greatest individual change occurring in parent home-based involvement & the least in parent facilitation of biomedical interventions. Separate regression analyses were used to assess the impact of child, school, & family factors on intensity of parent school- & home-based involvement. Significant positive predictors of T1 school involvement included parent developmental expectations, parent social support, & school facilitation of parent school involvement. T1 home involvement was significantly predicted by family SES, child adaptive functioning, childcare demands, & school facilitation of parent home-based involvement. In both T1 regressions, school facilitation was found, by far, to be the most powerful factor affecting intensity of parent involvement at home & at school. Regression analyses were also used to assess the impact of change in child, school, & family factors on change in school- & home-based involvement. As in the previous T1 regressions, across these T1-T3 analyses, school facilitation was found to be the single most powerful predictor of change in involvement, with increases in school facilitation being positively linked to increases in parent involvement between T1 and T3. In addition, consistent with the tenets of ecocultural theory, a measure of meaningfulness (i.e., the extent to which parents reported involvement activities to be consistent with core family values & goals) was found to significantly predict intensity of both parent school- & home-based involvement, with higher meaningfulness scores at Time 1 & an increase in meaningfulness scores between Time 1 & Time 3 being associated with higher levels of parent school- & home-based educational involvement at Time 3. Implications of study findings for future research & for the support of parents seeking to participate in the education and treatment of their children with ASD will be discussed. 99 PAPER SESSION 1 Neural Network Analysis of MAOA, Serotonin Transporter, and Serotonin Receptor (HTR1B) Polymorphisms on the Behaviors of Children on the Autism Spectrum Cohen, I.L.*1, Liu, X.2, Jenkins, E.C.1, Brown, W.T. 1, Gonzalez, M. 1, Rovito-Gomez, T. 1, Kim, S-Y1, Lewis, S. 2, Chudley, A. 2, ASD-CARC, and Holden, J.J.A.2 1 NYS Institute for Basic Research in Developmental Disabilities, Staten Island, NY, 10314 2 Queens University, Kingston, Ontario, K7M, 8A6 Introduction: We found that autistic behaviors are correlated with an interaction between a functional polymorphism in the MAOA promoter region and the functional serotonin transporter gene promoter polymorphism (5-HTTLPR) (Holden, et al., 2006). These data suggested a need to take into account gene interactions. Neural network models are useful for this purpose. They were employed to examine the additional contribution of the G861C SNP in the HTR1B gene to the above-described associations in boys and girls on the autism spectrum (n=245 to 274). The HTR1B receptor is important in regulating the release of serotonin into the synapse and the C allele of this SNP has been found to be more common in affected children and to be associated with more severe symptoms (Liu, et al., 2002). Method: The low or high activity allele status of all cases followed that suggested by Deckert, et al. (1999). MAOA analysis was done as described previously (Cohen, et al., 2004). 5-HTTLPR alleles were characterized as short or long. HTR1B alleles were G or C. Behavior patterns were assessed with the PDD Behavior Inventory (PDDBI; Cohen and Sudhalter, 2005). Back-propagation models predicted behavior scores based on various allelic combinations, with age, sex, presence of autism in a sibling, and data source (Canada or USA) serving as control variables. K-fold cross-validation (K=10) was employed. Results: Mean (SE) Pearson correlations for the training, and validation sets varied across allelic combinations. The strongest correlations in the validation set were for domains assessing receptive and expressive language competence. Discussion: Neural network models may prove a fruitful approach in identifying genotype-phenotype correlations in this population. Key References: Cohen IL et al (2003) Association of autism severity with a monoamine oxidase A functional polymorphism. Clin Genet 64:190-197 Cohen IL, Sudhalter V. 2005. The PDD Behavior Inventory. Lutz, FL: Psychological Assessment Resources, Inc. Deckert J et al (1999) Excess of high activity monoamine oxidase A gene promoter alleles in female patients with panic disorder. Hum.Mol.Genet 8 (4):621-624. Holden, J.J.A., Liu, X., Flory, M., Jenkins, E.C., Brown, W.T., Lewis, S., Chudley, A., ASD-CARC, Gonzalez, M., Rovito-Gomez, T., and Cohen, I.L. (2006). Effects of maternal and child MAOA and serotonin transporter polymorphisms on the behavior patterns of children on the autism spectrum. Poster Presentation, International Meeting for Autism Research, Montreal. Li W, Haghighi F and Falk CT (1999) Design of artificial neural network and its applications to the analysis of alcoholism data. Genetic Epidemiology 17 Suppl 1:S223-S228. Source of Funding: March of Dimes, Canadian Institutes of Health Research, Ontario Mental Health Foundation. 100 PAPER SESSION 1 Insomnia in Children with Autism Spectrum Disorders: Evidence from Multiple Sources Lynnette M. Henderson, Beth A. Malow, Mary L. Marzec, Susan G. McGrew, Lily Wang, Wendy L. Stone Introduction: Insomnia, defined as difficulty initiating or maintaining sleep, has been documented consistently in children with autism spectrum disorders in studies using parentally completed questionnaires, and sleep diaries1. While parental sleep concerns have been well documented in children with ASD, few studies have related these concerns to polysomnographic (PSG) findings. Documenting PSG abnormalities in children with ASD whose parents report sleep concerns provides objective evidence of disordered sleep in these children. Methods: Four to ten year-old children who were free of psychotropic medications, with no history of mental retardation or epileptic seizures participated in 2 nights of PSG recordings. The sample included 21 children with ASD, defined as “good sleepers” (10 children) and “poor sleepers” (11 children) on the basis of parental report and 10 typically developing (TD) children reported by their parents to be good sleepers. Parents described their children through the Child Sleep Habits Questionnaire (CSHQ) and Child Behavior Checklist (CBCL). Research observations included the Peabody Picture Vocabulary Test (PPVT) and the Autism Diagnostic Observation Schedule (ADOS). Results: Poor sleepers with ASD showed prolonged sleep latency and decreased sleep efficiency on night 1 of PSG and differed on insomnia-related subscales of the CSHQ; (increased sleep onset delay and decreased sleep duration). The good sleepers with ASD did not differ from the TD children in sleep architecture or on CSHQ domains. As compared with ASD good sleepers, the ASD poor sleepers also had higher scores related to affective problems on the CBCL and more problems with reciprocal social interaction on the ADOS. The communication (A) items and total (A + B) ADOS scores did not differ between ASD good and poor sleepers. Discussion: Our work demonstrates that some children with ASD sleep well and exhibited similar sleep patterns to age-comparable TD children. In summary, our findings support that children with ASD and parental sleep concerns differ from those without parental sleep concerns on PSG measures, sleep duration and sleep onset delay, affective problems, and social interaction. Unlike the CBCL findings, in which the response may have been influenced by parental perception of sleep, the ADOS was given by examiners not aware of the child’s classification into the ASD good or poor sleeper groups, or results of the PSG studies. The direction or causality of these relationships can not be determined from these results, but must be examined in future studies. Interventional studies aimed at improving sleep through pharmacological therapies, behavioral treatments, or both will be necessary to determine if improving sleep in children with ASD can positively influence daytime behavior and autism symptomatology2. Key References: 1. Couturier JL, Speechley KN, Steele M, Norman R, Stringer B, Nicolson R. Parental perception of sleep problems in children of normal intelligence with pervasive developmental disorders: prevalence, severity, and pattern. J Am Acad Child Adolesc Psychiatry 2005;44:815-22. 2. Malow BA, McGrew SG, Harvey M, Henderson LM, Stone WL. Impact of treating sleep apnea in a child with autism spectrum disorder. Pediatr Neurol 2006;34:325-8. 101 PAPER SESSION 1 Girls With Fragile X Syndrome: Early Development and Behavior Deborah D. Hatton, John Sideris, Anne Wheeler, The University of North Carolina at Chapel Hill Kelly Sullivan, Duke University Contact: Deborah D. Hatton, UNC-Chapel Hill, CB 8040, Chapel Hill, NC 27599-8040 [email protected] The purpose of this session is to describe early development and behavior in girls with fragile X syndrome (FXS), the leading inherited cause of intellectual disability. Although research on FXS has increased exponentially in the past decade, very little is known about young girls with FXS. This scarcity of research on girls may be because many are not as severely affected as boys, and they may not exhibit as many challenging behaviors. The shyness and anxiety that seem to characterize many girls with FXS may not disrupt classroom and family life to the same extent that challenging behaviors in boys do. In some girls with FXS, developmental delays may be subtle and more difficult to detect than those that are evident in boys. Therefore, our goal was to examine development and behavior in a relatively young sample of girls with FXS to see if they do, in fact, exhibit delays and problem behaviors. To examine early development, we used hierarchical modeling to examine mean levels and rates of development in 16 girls with full mutation FXS between the ages of 6 months and 9 years. Using the Battelle Developmental Inventory as our outcome measure, we found considerable variability in development. Chronological age and autistic behavior interacted, with the developmental trajectories of girls with more autistic behavior diverging from those of girls with less autistic behavior over time. In a subsample of 11 girls with genetic data, we found that girls with higher levels of the fragile X mental retardation protein whose mothers had some college education had better developmental outcome. We examined adaptive and problem behavior in 34 girls with FXS, ages infancy to 14 years, using the Vineland Adaptive Behavior Scales, the Child Behavior Checklist, and the Teacher Report Form. Consistent with early development, considerable variability was evident in adaptive and problem behavior. Girls with fewer autistic behaviors had better adaptive behavior skills. The most prevalent problem behaviors in girls were attention problems and anxiety. Teacher and parent ratings of problem behavior in a subsample of 13 girls with ratings from both parents and teachers showed both similarities and differences. Our findings suggest that many girls with FXS experience delays in development and in adaptive behavior. In addition, many experience problem behavior based on both parent and teacher report. By being attuned to early signs of developmental delays, internalizing problems such as anxiety, and externalizing problems such as inattention, parents and professionals can take a proactive approach to facilitating development and learning and providing support for potential social, emotional, and behavioral problems. 102 PAPER SESSION 1 Negative Reactivity in Preschool Boys with Fragile X Syndrome Jane E. Roberts, Meghan Shanahan, and Deborah D. Hatton University of North Carolina 517 South Greensboro Street, Chapel Hill NC 27599-8040, Contact: [email protected] Introduction. The full mutation of fragile X syndrome (FXS) is associated with moderate intellectual disability in affected males. Despite moderate to severe cognitive delays in males with the full mutation, parents and professionals are often most concerned about behaviors that disrupt daily life. Age may be an important factor contributing to the occurrence and severity of problem behavior in boys with FXS. However, very few studies of behavior in FXS during the first five years of life have been published. Preliminary findings using cross-sectional data and parental reports suggest that behavioral challenges of children with FXS may be subtle or absent during the infant and toddler years yet emerge and intensify in early childhood. Given findings that negative reactivity during the preschool years may predict significant social, cognitive, and behavior problems later in development, studies of the predictors and correlates of negative reactivity are critical to identify risk factors for those susceptible to these problems, as well as recognize opportunities to provide intervention to obviate/minimize these problems. Although defined differently by investigators, it is generally acknowledged that negative reactivity includes responses of anger, frustration, fear, and sadness to stimuli. The purpose of this study was to examine negative reactivity in young boys with fragile X syndrome (FXS). Method. Two groups participated in this study: 1) 25 boys with the full mutation of FXS, and 2) 64 typically-developing boys. The FXS and comparison groups were matched on chronological age (M = 35.08 months and M = 36.25 months, respectively), race (96% and 97% Caucasian, respectively), and maternal education levels (15.9 years and 15.7 years, respectively). Multiple measures of negative reactivity were collected including a laboratory based measure of temperament (arm restraint episode from the Lab-TAB) that included facial sadness, facial anger, bodily struggle, and distress vocalizations. In addition, the anger and sadness subscales from the parent-completed Child Behavior Questionnaire were collected. The Mullen Scales of Early Learning were administered to the group with FXS to examine the relations of mental age to negative reactivity in FXS Results. Boys with FXS showed less facial sadness on the Lab-TAB, and their parents rated them as exhibiting less anger and sadness on the Child Behavior Questionnaire. No group differences were found on the Lab-TAB measures of distress vocalizations, bodily struggle, and facial anger. However, both groups displayed a phase effect for facial anger on the Lab-TAB. Specifically, both groups’ anger appeared to peak half way through the arm restraint episode. A moderate positive correlation between mental age and parent perceptions of sadness from the CBQ was evident; however, no other significant associations were found between mental age and measures of negative reactivity in boys with FXS. Discussion. The findings of this study provide important preliminary information regarding negative reactivity in 3-year old boys with FXS using multiple measures. Interestingly, boys with FXS displayed significantly less sadness than the typically developing group during the laboratory task, and their mothers rated them as displaying less sadness and anger on the CBQ than the mothers of the children in the typically developing group. Our finding of less anger and sadness in 3-year old boys with FXS was unexpected due to published reports of challenging behavior in older boys with FXS and suggests age related changes in negative reactivity in boys with FXS that should be examined longitudinally. 103 PAPER SESSION 1 Psychotropic Medication Use in Fragile X Syndrome: Analysis of Side Effects Maria G. Valdovinos, Rahul A. Parsa, Michelle L. Alexander Drake University, Psychology Department, 2507 University Ave, Des Moines, IA 50312 Contact: [email protected] Introduction: Fragile X syndrome (FXS) is the most common inherited cause of mental retardation and is associated with the lack of fragile X mental retardation protein (FMRP). The behavioral phenotype associated with FXS includes hyperactivity, anxiety, and sometimes problem behaviors such as aggression, self-injurious behavior, and tantrums. Stimulants, antipsychotics, SSRI antidepressants and alpha agonists are the most commonly prescribed psychotropics used to treat the associated phenotype (Amaria, Billeisen, & Hagerman 2001; Berry-Kravis & Potanos, 2004). Very little information is known about the side effects individuals with FXS may experience as a result of taking these medications. The goal of this study was to determine if there were specific side effects experienced by individuals with FXS as a result of using specific psychotropic medications. Method: To evaluate this relationship, a nation-wide survey was conducted of caregivers of individuals with FXS. A questionnaire developed for this study (based on a version used by Valdovinos and Schroeder (2003)) was mailed to participants and contained items regarding age, gender, ethnicity, coexisting health conditions, psychiatric diagnoses, level of functioning, and behavioral issues and questions regarding current and prior psychotropic medications use, specifically, the name of medication, dose, purpose, prescribing physician, date initiated, effectiveness, effect on target behavior, and changes in psychotropic medication in response to side effects. With regards to side effects experienced, a list of the most common side effects associated with psychotropic drugs, as well as those most commonly experienced by people with FXS were provided but respondents were also given the opportunity to list additional side effects not included in the list. Results: We received 400 surveys out of the 3099 distributed resulting in a 12.9% response rate. In conducting our analysis, we consider each drug-respondent combination as one sample unit. Given the small number of respondents, we decided to group the drugs by drug class as opposed to evaluating individual drugs. We also grouped side effects into classes. Our preliminary results indicate that atypical antipsychotic drugs had higher than expected gastrointestinal side effects (weight gain and increase in appetite) and fewer than expected sleep (sedation) and overall health side effects. Stimulants had higher than expected gastrointestinal (weight loss and decrease in appetite) and neurological side effects (tics, twitching, and strange movements) and fewer sleep side effects (sedation). Alpha-adrenergic stimulant group had much higher than expected sleep side effects (sedation) and less than expected overall health side effects. These data were analyzed using a chi-square test of independence, resulting in a p-value 0.0014. Discussion: Based on our preliminary analysis, the side effects profiles were consistent with what is reported for the general population with a few exceptions. This presentation will include the final analysis of our data. Key References: Amaria, R. N., Billeisen, L. L., & Hagerman, R. (2001). Medication use in Fragile X syndrome. Mental Health Aspects of Developmental Disabilities, 4, 143-147. Berry-Kravis, E., & Potanos, K. (2004). Psychopharmacology in Fragile X syndrome – Present and future. Mental Retardation and Developmental Disabilities Research Reviews, 10, 42-48. Valdovinos, M. G., & Schroeder, S. R. (2003). The effects of a computerized monitoring system of psychotropic medication use by people with developmental disabilities on staff reported side effects. Journal of Developmental and Physical Disabilities, 15, 299-334. * This research was supported by a Clinical Research Award from the National Fragile X Foundation 104 Pa p e r Se s s i o n 2 P A P E R 2 FAMILIES, MENTAL HEALTH, AND SOCIAL BEHAVIOR 105 PAPER SESSION 2 The Pivotal Behavior Model of Development: Implications for Developmental Intervention Gerald Mahoney Frida Perales Mandel School of Applied Social Sciences, Case Western Reserve University Contact: [email protected] Pivotal behaviors are the learning processes that enable children to acquire discrete skills that are not directly targeted in intervention (Koegel, Koegel & Carter, 1999). The concept of pivotal behavior evolved from applied behavioral analysis intervention research which historically has focused on discrete skill interventions. It evolved from the concern that the process of teaching discrete targeted behaviors to children one at a time (as incurs in programs such as Discrete Trial Training) is slow, laborious and ineffective at promoting a broad range developmental outcomes. By teaching children to use pivotal skills, there is some evidence that children spontaneously engage in the types of interactions that result in learning across broad numbers of behaviors (Humphries, 2003). In this presentation we will present data indicating that the concept of pivotal behavior may be useful both for understanding parental influences on children’s learning and development and for developing parentmediated models of developmental intervention. Two studies of young children with disabilities and their mothers will be described. The first is a descriptive study of 45 mother-child dyads in which the children are less than three years old and have significant developmental disabilities (Mahoney, Kim & Linn, In Press). Videotaped observations of mother child interactions were used to code mothers’ style of interaction using the Maternal Behavior Rating Scale (Mahoney, 1999) and seven of children’s pivotal behaviors using the Child Behavior Rating Scale (Mahoney & Wheeden 1998). Analyses indicated that children’s level of pivotal behaviors was associated both with their mothers’ level of responsiveness and with children’s rate of development as measured by the Vineland Adaptive Behavior Scale and the Transdisciplinary Play Based Assessment. Regression analyses suggested that children’s pivotal behavior mediated the relationship between maternal responsiveness and children’s development. The second is a one year intervention study that involved 50 mother-child dyads including 30 children with developmental disabilities and a matched sample of 20 children with autism (Mahoney & Perales, 2005). Each of these dyads received a parent-mediated intervention in which parents were encouraged to promote children’s pivotal behaviors by using Responsive Interaction strategies in their routine interactions with them. There were four findings from this study. First, responsive interactive strategies were effective in encouraging parents to engage in more responsive interactions with their children. Second, there were highly significant increases in children’s pivotal behaviors during the course of intervention. Changes in mothers’ responsiveness accounted for 20% of the variance of the improvements in children’s pivotal behavior. Third, children made dramatic improvements in their rate of cognitive and communication development. In addition children with autism showed marked improvements in their social emotional functioning as indicated by their scores on two standardized tests. Fourth, Changes in children’s pivotal behavior accounted for 10% of the variance of the improvements in children’s rate of cognitive and communication development. In general, results from these two studies underscore the critical role that pivotal behavior may play in developmental intervention. They suggest that children’s pivotal behavior plays a major role in mediating children’s developmental learning, and that individual differences in children’s pivotal behavior are related parental responsiveness. 106 PAPER SESSION 2 Predicting Disruptive Behavior Disorders in Five-Year Old Children with and without Intellectual Disability Bruce L. Baker (Dept. of Psychology, UCLA, Los Angeles, CA 90095 Rachel Fenning (Department of Psychology, UCLA) Jan Blacher (Graduate School of Education, University of California, Riverside) Contact: [email protected] Introduction: Children with intellectual disability (ID) are at heightened risk for behavioral and mental disorders. Despite notable variability in samples and assessment methods, between one third and one half of these children have clinically significant disturbances, and at least three times as many children with ID meet diagnostic criteria as those with typical cognitive development. This co-morbidity of any level of ID and one or more identifiable mental disorders (APA, 2000), or dual diagnosis, is a significant burden for the children, their families, and the social service system. Many recent studies focused on epidemiology, but there is little known about the risk factors for mental disorder in this population. The NICHD-supported Collaborative Family Study, at UCLA, UC Riverside, and Penn State University, has been following children with and without developmental delays and their families from child age 3. The present paper will examine evidence for diagnosable mental disorders as early as child age 5, consider the odds ratio between ID and typically developing children, and consider concurrent and earlier variables that relate to the most salient problem type: Disruptive behavior disorders. Methods: We followed n=98 children with borderline to moderate ID and n=144 typically developing children from child age 3 to 5 years. Overall, the child sample was 57% boys and 61% Caucasian. The parent sample was 86% married and 51% of mothers and fathers college graduates. The SES (mothers’ education and family income) was lower in the ID group, so this was co-varied in all status group comparisons. At child ages 3 and 5 parents completed the 1 ½ to 5 year version of the Child Behavior Checklist (Achenbach, 2001) and, at age 5, the Diagnostic Interview Schedule for Children (DISC; Edelbrock, Crnic & Bohnert, 1999), a highly structured diagnostic interview schedule covering current DSM criteria for child psychiatric disorders. Measures taken at age 3 included a measure of family stress (Family Impact Questionnaire, Donenberg & Baker, 1993) and naturalistic observations of family interactions. Results: At age 5, fully 58.2% of the ID sample met criteria for at least one mental disorder. The most prevalent disorders were disruptive behavior disorders (DBD): Oppositional Defiant Disorder, 42.9% and Attention Deficit Hyperactivity Disorder 39.8%. Separation Anxiety Disorder was the next most prevalent (14.3%). The prevalence of every disorder was higher in the ID group. The highest difference was for ADHD, odds ratio 3.18. Interestingly, in contrast to typically developing samples, there was no relationship between child sex and DISC diagnoses. Child behavior disorders, parenting stress, and aspects of the parent-child interaction at age 3 all were significantly related to DBD diagnoses two years later. Discussion: These findings of a high rate of diagnosable disorders in children with ID as young as age 5, have implications for broadening the focus of early intervention programs beyond cognitive abilities, to include a focus on developing self-regulation and decreasing behavior problems. 107 PAPER SESSION 2 Mental Health of Children and Adolescents with and without Intellectual Disabilities in Britain Eric Emerson & Chris Hatton Institute for Health Research, Lancaster University, UK Contact: [email protected] Introduction: Existing research has reported higher rates of psychopathology among children with intellectual disabilities. There have, however, been very few studies that have investigated the prevalence of specific psychiatric disorders (defined in accordance with DSM or ICD classification systems) and comorbidity between psychiatric disorders in well constructed population based samples of children with and without intellectual disabilities. In addition, few studies have explored the extent to which risk factors for psychiatric disorders (and co-morbidity) vary across children with and without intellectual disabilities. Methods: Secondary analysis of data collected in the 1999 and 2004 Office for National Statistics (ONS) surveys of child and adolescent mental health in Britain. These two cross sectional surveys were based on nationally representative samples of 10,500 (1999) and 8,000 (2004) British children aged 5-15. Psychiatric disorders were identified through well validated structured interview formats undertaken with a primary carer (usually the child’s mother) and the child themselves (if aged 11 years or older). In previous studies we have operationally identified children with intellectual disabilities in the 1999 data are reported on the prevalence of psychiatric disorders and relationship between mental health and life events (Emerson, 2003; Hatton & Emerson, 2004). Results: In preliminary analyses we have operationally identified children with intellectual disabilities in the 2004 data and, given that there were no marked differences in overall prevalence between 1999 and 2004, merged the data files. The merged file contains approximately 500 children with intellectual disabilities and 17,500 children without intellectual disabilities. Subsequent analyses will: (1) estimate the prevalence of specific psychiatric disorders and combinations of co-morbid disorders among children with and without intellectual disabilities; (2) explore the extent to which age, gender, socio-economic position, household composition and family functioning operate as risk factors for psychiatric disorders (and comorbidity) across children with and without intellectual disabilities. The latter analyses will involve both simple bivariate analyses and multivariate analyses (logistic regression) to identify the unique contribution of particular factors. Discussion: Implications for future research will be identified. Key References Emerson, E. (2003). The prevalence of psychiatric disorders in children and adolescents with and without intellectual disabilities. Journal of Intellectual Disability Research 47, 51-58. Hatton, C., & Emerson, E. (2004). The relationship between life events and psychopathology amongst children with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities 17(2), 109-118. 108 PAPER SESSION 2 Household Task Participation of Children with and without Attentional Problems *M. Louise Dunn, ScD, OTR/L, Assistant Professor, Division of Occupational Therapy University of Utah, 520 Wakara Way, Salt Lake City, Utah 84108 Contact: [email protected] Wendy J. Coster, PhD, OTR/L, Chair, Dept of Occupational Therapy, Boston University Gael S. Orsmond, PhD, Assistant Prof, Dept of Occupational Therapy, Boston University Ellen S. Cohn, ScD, OTR/L, Associate Prof, Dept of Occupational Therapy, Boston University In this oral presentation, the first author will share information on the findings from a study examining household participation patterns for children with and without Attention Deficit Hyperactivity Disorder (ADHD). Children with ADHD often demonstrate deficits in their adaptive functioning including their ability to participate in daily household routines such as household tasks (Stein et al., 1995). Engagement in household tasks is part of being a family and may be one way that families prepare children for adult roles. Families who have children with ADHD often expend much time and effort accommodating their children’s needs for individualized attention by adapting their personal and family routines (Cronin, 2004; Klassen, Miller, & Fine, 2004). Therefore, the purpose for this study was to examine household tasks participation in school-aged children with and without ADHD because of its impact on their families and on the children’s preparation for living in the community as an adult. Forty-five parents of children in grades 3 through 5 (22 who had a child with ADHD and 23 whose child had no disabilities) participated in this descriptive, cross sectional study. Results showed that the children with ADHD did not differ significantly from children without ADHD in how many household tasks they performed. Children with ADHD did require significantly more assistance than did their peers. Both groups of parents reported that their children’s participation in household tasks was important. Content analysis of parents’ reasons for involving their children in household tasks yielded three themes: personal responsibility, social responsibility, and needing help. These findings support consideration of the time, efforts, and costs to families in supporting the participation of their children with ADHD in home activities when planning intervention. After presenting my study, I would encourage discussion about learning opportunities and outcomes that occur through participation in household routines for school-aged children with ADHD and other disabilities. In particular, I would encourage discussion about bidirectional effects between children with disabilities and their families on engagement in family activities. References Stein, M.A., Szumowski, E., Blondis, T. A., & Roizen, N. J. (1995) Adaptive skills dysfunction in ADD and ADHD children. Journal of Child Psychology and Psychiatry. 36, 663-670. Cronin, A. F. (2004). Mothering a child with hidden impairments. American Journal of Occupational Therapy, 58, 83-92. Klassen A. F, Miller, A., & Fine S. (2004). Health-related quality of life in children and adolescents who have a diagnosis of Attention-Deficit/Hyperactivity Disorder. Pediatrics, 114, 541-547. 109 PAPER SESSION 2 Socio-Economic Position, Social Connectedness and the Self-Reported Well-Being of Women and Men with Intellectual Disabilities in England Chris Hatton and Eric Emerson Institute for Health Research, Lancaster University, UK Contact: Chris Hatton, Institute for Health Research, Lancaster University, Lancaster, LA1 4YT, UK [email protected] Introduction: Few large-scale surveys of the subjective well-being (SWB) of adults with intellectual disabilities exist, and there is current controversy over the extent to which indicators of SWB are independent of factors such as personal characteristics, relationships with other people and external living conditions. Methods: We investigated associations between five self-reported indicators of SWB and the personal characteristics, socio-economic position and social connectedness of a sample of 1,273 English adults with intellectual disabilities, collected as part of a national survey of adults with intellectual disabilities in England (Emerson et al., 2005). Results: Mean overall life satisfaction was 81% of the scale maximum, marginally higher than typically reported among the general population. Variation in SWB was strongly and consistently related to socioeconomic disadvantage and, to a lesser extent, social relationships. For women, being single was associated with greater well-being on all indicators. For men there was no association between marital status and wellbeing. Relationships with friends with intellectual disabilities appeared to be protective against feeling helpless. For women, but not for men, increased contact with relatives was associated with greater overall well-being. Discussion: The results confirm the generally high levels of SWB reported by adults with intellectual disabilities in the face of objectively poor external living conditions, although within the sample SWB was consistently associated with socio-economic position, suggesting that SWB is not completely independent of the effects of socio-economic disadvantage. This study also suggests that gender effects in SWB require more research attention. Key References: Emerson, E., Malam, S., Davies, I., & Spencer, K. (2005). Adults with learning difficulties in England 2003/ 4.Leeds: Health & Social Care Information Centre. 110 PAPER SESSION 2 Unmet Need in Families of Young People with Intellectual and Developmental Disabilities 1 Vivien J Moffat 1 Jennifer G Wishart 2 Eve C Johnstone 1 Division of Psychiatry, 2 Moray House School of Education, University of Edinburgh Contact: Vivien Moffat, University of Edinburgh, Kennedy Tower, Royal Edinburgh Hospital, Morningside Park, Edinburgh, EH10 5HF, UK [email protected] Introduction: There is increasing awareness internationally of the needs of families of people with intellectual and developmental disabilities (ID/DD). In particular there is growing recognition of autistic spectrum disorders (ASD) and the implications for those affected (PHIS 2001, MRC 2001). Despite government aims of developing appropriate services and supports (SE 2000), this study explored Scottish mothers’ experiences and found continuing perceptions of unmet need. Methods: Mothers of 94 young people aged 13-22 in 4 groups: 1. typically developing controls (n=18) 2. with ID (n=37) 3. with ID, +ve ASD screening score and ASD diagnosis (n=19) 4. with ID, +ve ASD screening score but no ASD diagnosis (n=20) All mothers completed standardised questionnaires on family and individual quality of life and child behaviour. The mothers of young people with ID/DD also completed standardised questionnaires on stress and service provision and a selected stratified sub-sample of 20 took part in semi-structured interviews about stressful issues and perceived unmet need. Results: Significant positive correlations were found between ASD screening score and maternal stress, and significant negative correlations between family and individual quality of life and ASD screening score. Significant differences were shown amongst the 4 groups in the study. Themes emerging from interviews included: experiences of inadequate support, lack of social acceptance and poor communication with and amongst service providers. Discussion: Mothers of young people with ID may experience lower individual and family quality of life than mothers of typically developing young people. Current developments aimed at service improvement are consistent with mothers’ perception of need. These include: allocation of a key worker and improved access to information and support. However, recent initiatives are not reaching all families who would benefit. Whether this is because of poor implementation or misinterpretation of policies remains a subject for further research. References MRC (Medical Research Council) (2001) Review of autism research: Epidemiology and causes, London, Medical Research Council PHIS (Public Health Institute of Scotland) (2001) Autistic spectrum disorders: Needs assessment report, Glasgow, Public Health Institute of Scotland SE (Scottish Executive) (2000) The same as you? A review of services for people with learning disabilities, Edinburgh, The Scottish Executive 111 Pa p e r Se s s i o n 3 P A P E R 3 DOWN SYNDROME AND INTERVENTIONS 112 PAPER SESSION 3 Telomere Shortening in Chromosomes 21, 1, 2, and 16, and Reduced Signal Number in Tlymphocyte Metaphases from Older Individuals with Down Syndrome and Dementia E.C. Jenkins1, M.T. Velinov1, L. Ye1, H. Gu1,Samantha A. Ni1, D. Pang1,2, D.A. Devenny1, W.B. Zigman1, N. Schupf1,2, W.P. Silverman1,3. 1 NYS Inst Basic Res Dev Disab, Staten Island, NY; 2 Taub Inst Res on Alz Dis Aging Brain, Columbia Univ, NY; 3 Kennedy-Krieger Inst, Johns Hopkins Univ Sch Med, Baltimore, MD Contact: [email protected] Introduction: We have recently reported shorter telomeres (chromosome ends consisting of highly conserved TTAGGG repeats) in T-lymphocytes from short-term whole blood cultures of women with Down syndrome (DS) and dementia compared to age-matched women with DS but without dementia (NBA 2006;27:942-5). We have now accumulated a total of 13 people with trisomy 21 and dementia who have exhibited shorter telomeres than their peers without dementia, including two male individuals. In addition we have found four females with DS and without dementia but who exhibited what appeared similar to mild cognitive impairment (MCI) in the general population, referred to here as MCI-DS. All had shorter telomeres when compared to their non-demented peers. We also report our observations on telomere shortening of individual chromosomes 21, 1, 2, and 16 as well as a reduced number of telomere signals in metaphase chromosomes from people with DS and dementia. Methods: Subjects were ascertained through the NYS Disability Service System and were classified as demented by using parameters recommended by the Working Group for the Establishment of Criteria for Diagnosis of Dementia in Individuals with Intellectual Disability (J Intellect Disabil Res 1997;41:152-64), and methods are described in detail elsewhere (Am J Ment Retard 2004;109:111-25). Each subject was age- and sex-matched such that one individual within each pair had dementia or MCI-DS and the other did not. Twenty metaphases and 20 interphases per individual, as well as the individual chromosomes mentioned above, were analyzed for telomere length differences by measuring changes in fluorescence intensity using an FITC-labeled peptide nucleic (PNA) probe. Cells from age- and sex-matched individuals with and without dementia or with and without MCI-DS were analyzed. In addition to the above measurements, each metaphase chromosome arm was evaluated to determine how many chromosome ends exhibited a fluorescent signal. Results: Including our previous report, we have now observed shorter telomeres in metaphases and interphases from 13 people with DS and dementia and 4 people with MCI-DS (p<.04-p<.000001). In addition chromosome 21 was shorter in a total of 9 people studied with DS and dementia (4 others were not studied for individual chromosomes) (p<.008-p<.000001) and in all four people with MCI-DS (p<.0002p<.000001). Shorter telomeres for chromosome 1 were also observed in 8 of 9 cases of people with DS and dementia and for all four cases of MCI-DS. In four cases studied with DS and dementia all exhibited shorter telomeres for chromosomes 2 and 16 and two other cases, with MCI-DS, also exhibited chromosome two and 16 telomere shortening. Finally, we have observed an increased number of chromosome ends with no fluorescent signal in nine of nine individuals analyzed, with DS and dementia (p<.02-p<.000001) while two of four individuals with DS and MCI-DS also exhibited such an increase. Discussion: We have now shown that shorter telomeres occur in people with DS and MCI-DS as well as individuals with DS and dementia. In addition, we have shown that chromosome 21 may be used singly to detect telomere shortening in individuals with DS and dementia or MCI-DS. Overall, there was no overlap in the distribution of telomere length between demented and non-demented participants, t (19) = 6.5, p<.0001 (and no overlap between participants with and without MCI-DS). The ability of these measures to distinguish between cases with and without dementia was impressive. If further research confirms these findings, they can provide the foundation for a diagnostic procedure having both high sensitivity and specificity. Source of Funding: In part by NYS OMRDD, Alzh. Assoc. grants IIRG-99-1598,IIRG-96-077; by NIH grants PO1 HD35897, RO1 HD37425, RO1 AG014673, and RO1 AG14771. 113 PAPER SESSION 3 Down’s Syndrome, Ageing and Alzheimer’s Disease *Holland, A.J., Ball, S. and Herbert, J. University of Cambridge, UK *[email protected] Douglas House, 18b Trumpington Road, Cambridge, CB2 2AH, UK Introduction: people with Down’s syndrome (DS) have a significantly reduced life-expectancy (McGrother and Marshall, 1990) and age-related prevalence rates for Alzheimer’s disease (AD) that are similar to that found in the general population but brought forward by 30 to 40 years, with prevalence rates reaching between 50% and 60% in those 50 years and older (Lai and Williams, 1989; Holland et al, 1998). Methods: as part of an on-going longitudinal study of older people with DS at risk for dementia physical age-related markers and the level of the hormone, dehydroepiandrosterone ( DHEA), known to decrease with age (Morales et al, 1994), were measured and compared to age-matched people without DS. The hypotheses tested were that these measures in people with DS would be similar to that found in a chronologically older population without DS, and that these age-related markers would be associated with the risk of AD. Skin wrinkles, baldness and greying of hair, gait speed and hand grip strength were assessed in 80 men and women with DS born before 1st July 1964 together with 36 controls in the same age range, and a further 9 over the age of 70 years. DHEA blood levels were measured on 73 adults with DS and 66 aged matched controls. Results: all of the above physical markers and the DHEA levels were found to correlate significantly with age in the expected direction in those with DS and controls. The most striking finding was that age-related levels of DHEA were significantly lower in people with DS and may suggest an increase in ‘biological age’ of approximately 15 years, furthermore the level of DHEA significantly predicted dementia status – a level of DHEA of one unit higher decreasing the odds of a diagnosis of dementia by 50%. In addition, within the DS group, those with AD had significantly greater number of facial wrinkles compared to those without, controlling for age. Discussion: these findings give some support to the hypothesis that people with DS age prematurely and that this may account for the reduced life-expectancy that is still observed. Its role in the causation of AD requires further investigation but these findings, if confirmed, may have therapeutic implications. Holland, A.J., Hon, J., Huppert, F.A., Stevens, F. and Watson, P. (1998) A population-based study of the prevalence and presentation of dementia in adults with Down Syndrome. British Journal of Psychiatry, 172: 493-498 Lai, F. & Williams R.S. (1989) A prospective study of Alzheimer disease in Down syndrome. Arch Neurol, 46, 849-853 McGrother, C.W. & Marshall, B. (1990) Recent trends in incidence, morbidity and survival in Down’s syndrome. J Ment Defic Res 34, 49-57 Morales, A.J., Nolan, J.J., Nelso, J.C. & Yen, S.C. (1994) Effects of replacement of dehydroepiandrosterone in men and women of advancing age. J Clin Endo Metab., 78, 1360-1367 114 PAPER SESSION 3 Using Electropalatograpy (EPG) to Assess and Treat Speech Articulation Difficulties in Children with Down’s Syndrome Sara Wood1, Bill Hardcastle1, Joanne McCann1, Claire Timmins1, Jennifer Wishart2 1 Queen Margaret University College, Edinburgh, 2 University of Edinburgh Contact: Dr Sara Wood Speech Science Research Centre Queen Margaret University College Clerwood Terrace Edinburgh EH12 8TS, Scotland, UK [email protected] Introduction: Speech development in Down’s syndrome (DS) is typically more impaired than would be expected from levels of cognitive impairment. Articulation errors are common and often intractable. People with DS often prefer visual to auditory methods of learning and may therefore find it easier to modify their speech when given a visual-auditory rather than auditory-only model. EPG, a technique for recording and displaying the timing and location of tongue-palate contact, provides just such feedback. Methods: EPG is being used to assess and treat speech disorders in 30 children with DS (10-18yrs), with data from 15 typically developing, MA-matched children as a control for task demands. All participants are given a comprehensive battery of speech, language and cognitive assessments, including EPG measures of articulatory accuracy and speech motor control. Participants with DS are then randomly assigned to receive EPG therapy, articulation therapy or no therapy. Analyses are exploring the relations between speech production and speech perception ability, cognitive level, chronological age and general motor development, using pre- and post-therapy measures of intelligibility to evaluate intervention effects. Results: Data from the first wave of testing will be presented (n =10). Children are presenting with mild to severe speech disorders. EPG patterns are revealing many abnormalities undetected by an auditory analysis, some of which are attributable to unusual, atypical processes rather than developmental delay. Examples of such patterns include full anterior palatal contact for target /s/ accompanied by lateral release of air. Initial data from the EPG-led therapy indicate that the children are able to correct abnormal patterns of contact using the visual display offered by EPG. Discussion: EPG may be an effective therapy for articulation disorders in children with DS, allowing more successful communication with others and supporting a better quality of life. Key References: Gibbon, F.E., McNeill, A.M., Wood, S.E. and Watson, J.M.M. (2003). Changes in linguapalatal contact patterns during therapy for velar fronting in a 10-year-old with Down’s syndrome. International Journal of Communication Disorders. 38, 47-64. Roberts, J., Long, S., Malkin, C., Barnes, E., Skinner, M., Hennon, E. and Anderson, K. (2005). A Comparison of Phonological Skills of Boys with Fragile X Syndrome and Down Syndrome. Journal of Speech, Language, and Hearing Research. 48, 980-995. 115 PAPER SESSION 3 Inclusive Education and Social Isolation among Adolescents with Down Syndrome Joanne Kersh, Penny Hauser-Cram, & Helena Pan Boston College Contact: Joanne Kersh, Boston College, Lynch School of Education, Campion Hall, Chestnut Hill, MA 02467. Email: [email protected] Introduction: Preliminary results from the National Longitudinal Transition Study 2 suggest that high school students with a range of disabilities have improved academic outcomes in inclusive educational settings, when compared to earlier cohorts who were not in general education classrooms (www.nlts2.org/ ). The benefits of inclusion at the secondary level are less clear, however, with regard to social outcomes. Carter et al.(2005) found only moderate levels of social interaction among high school students with intellectual disabilities and their general education peers, with greater interaction occurring in less integrated settings. Their findings are troubling as low levels of social interaction may lead to feelings of loneliness for students with disabilities. The focus of the current investigation is on whether individual social skills or the school context (or both) relate to feelings of loneliness among adolescents with Down syndrome (DS). Methods: The current study is a secondary analysis of data from the Early Intervention Collaborative Study (EICS), a longitudinal investigation of children with developmental disabilities and their families (Hauser-Cram, Warfield, Shonkoff, & Krauss, 2001). The sample for this analysis consists of 26 adolescents (15-years old) with DS and their mothers. Teens were administered the Loneliness Questionnaire (Williams & Asher, 1992) which measured their self-perceived feelings of loneliness and social connectedness at school. The Socialization standard score of the Vineland Adaptive Behavior Scales (mother report) was used as a measure of the child’s social skills. Mothers were asked additional questions about their teen’s friendships and social activities and also asked to categorize their child’s school day with regard to level of inclusion. For the purposes of this analysis, level of inclusion was dichotomized into high inclusion (most instruction took place in the general education setting, with no more than two special education classes) and low inclusion (the majority of the day spent in a special education setting, with no more than two general education classes). Results: Teens in the high and low inclusion groups did not differ from each other in terms of social skills (F = .372, p = .548), adaptive behavior (F=.848, p = .366), or cognitive functioning (F=.263, p = .613). A regression analysis was performed, using teen loneliness as the criterion variable. Neither teen social skills nor level of inclusion were found to be significant main predictors; however, level of inclusion moderated the relation between social skills and feelings of loneliness in teens with DS (t = 2.27; p = .033). Specifically, teens with greater social skills reported fewer feelings of loneliness at school, but only if they were in low inclusion environments. Teens with DS in high inclusion environments experienced moderately high feelings of social isolation regardless of their level of social skills. This model explained 32.5% of the variance in loneliness among teens with DS overall. Additionally, 50% of the mothers of teens in the high inclusion group reported that their child never socialized with other teens, compared with only 13% of the mothers in the low inclusion group. Discussion: These results suggest that while adolescents with DS in high inclusion settings may be included in the general education curriculum, they do not feel included socially. Further, mothers’ reports of their teens’ social experiences appear to validate the teens’ perspectives. We conclude that placement in the general education environment is not, in and of itself, sufficient to promote social inclusion for adolescents with DS. Suggestions for practice and policy are discussed. Key References: http://www.nlts2.org/reports/changepop_report.html. Carter, E.W., et al. (2005). AJMR,110, 366-377. 116 PAPER SESSION 3 Establishing the Building Blocks of Cognitive Behavioural Therapy with People with Mild Learning Disabilities: Developing a Collaborative Relationship Andrew Jahoda (University of Glasgow)*, Carol Pert (University of Glasgow), Peter Trower (University of Birmingham), Biza Stenfert-Kroese (University of Birmingham), Dave Dagnan (University of Lancaster) & Mhairi Selkirk (University of Glasgow) *Department of Psychological Medicine, The Academic Centre, Gartnavel Royal Hospital, 1055 Great Western Road, Glasgow G12 OXH, UK. Contact: [email protected] Background: There have been increasing efforts to adapt Cognitive Behavioural Therapy (CBT) for people with mild intellectual disabilities. However, this is the first study to investigate whether a collaborative relationship can be established between the therapists and clients, and the nature of the clients’ understanding and experience of therapy. Method: Sixteen clients with intellectual disabilities and depression, anxiety or significant problems with anger were recruited from specialist community-based services offering CBT interventions for individuals with dual diagnosis. A longitudinal design was adopted to investigate the nature of the therapeutic relationship in the first phase of treatment. Ratings of adherence by an independent expert found the therapists faithful to the CBT model. Data collection from each individual was extensive. This paper will focus on therapy sessions 4 and 9, which were video and audio-taped in order to analyse the therapeutic dialogue. The sessions were transcribed verbatim and the 12,544 communicative turns were then coded using the innovative method of interactional analysis developed by Per Linell et al. (1988). This involved coding each conversational partner’s turns in relation to the other, thereby making it possible to examine the distribution of power in the dialogue (dominance). Results: Analyses of relative dominance in the interaction between therapists and clients indicated a reasonable balance of power, and that most clients played an active role in the dialogues. Yet it was found that less able individuals produced more fragmented communication turns and most participants struggled to grasp the CBT model. Therapists’ use of visual aids and active tasks, such as role-play, did help to make complex components of therapy more meaningful. Conclusions: In practical terms, the study findings promote understanding of the potential for people with intellectual disabilities to engage successfully in CBT. The collaborative nature of the therapeutic relationships contradicts the prevailing assumption that therapists should adopt a more didactic or instructional approach to ensure engagement with individuals who have intellectual disabilities. The limitations of the approach for this population are also highlighted. References: Linell, P., Gustavsson, L. & Juvonen, P. (1988) Interactional dominance in dyadic communication: A presentation of initiative-response analysis. Linguistics, 26 (3), 415-442. 117 118 Po s t e r S e s s i o n 2 P O S T E R 2 THURSDAY, MARCH 8, 2007 6:30 P.M. - 8:30 P.M. 119 1. POSTER SESSION 2 Language Development in Toddlers with Developmental Disabilities Following Intervention: The Role of Child and Parent Communication Characteristics R. Micheal Barker and Rose A. Sevcik Georgia State University One Park Place Suite 928, Atlanta, GA, 30303 [email protected] It has been well documented that prelinguistic skills precede and may predict the subsequent emergence of symbol use in children (e.g., Wetherby, Warren, & Reichle, 1998). This is true both for typically developing children (Bates, Benigni, Bretherton, Camaioni, & Volterra, 1979; Bruner, 1983; Snow, 1977) and children with developmental disabilities (Brady, Marquis, Fleming, & McLean, 2004; McCathren, Yoder, & Warren, 1999; Mundy, Kasari, Sigman, & Ruskin, 1995; Yoder & Warren, 1999). Although much is known about this relationship for these populations, relatively little is known about this process for very young children with developmental disabilities who are just beginning to use language. This poster will focus on two aspects of communication between young children with disabilities and their parents. First, we will determine whether there is a connection between the gestures and pragmatic functions children exhibit prior to a language intervention, and their performance on standardized language measures post intervention. Second, we will determine whether parent communication characteristics are predictive of child performance on standardized language measures above and beyond the influence of child characteristics. Participants were 59 children ranging from 24 to 36 months of age. All had significant developmental disabilities, expressive vocabularies of less than 10 spoken words, and showed evidence of intentional communication. Prior to intervention, each parent/child dyad participated in a 30-minute semi-structured observation divided into three 10-minute segments. The observation session was structured such that it had three distinct segments (i.e., play, book reading, and snack), designed to elicit a broad range of communication. An observational coding scheme was utilized to characterize the communication characteristics of children (i.e., mode, pragmatic function) and their parents (i.e., responsiveness) during the baseline observation session. Participants were then randomly assigned to one of three 12-week parent-led language interventions: Augmented Communication Input (ACI), Augmented Communication Output (ACO), and Spoken Communication Intervention (SCI). The first intervention supported receptive language in an augmented modality, the second supported expressive language in an augmented modality, and the third supported spoken expressive language. Following the intervention, children were administered an extensive assessment battery that included the MCDI and the SICD. The results of three hierarchical regression analyses indicated that baseline child communication characteristics accounted for a significant proportion of the variance in the MCDI receptive measure and the SICD expressive and receptive measures. Children who used sophisticated gestures (defined as symbolic and distal gestures) at baseline had significantly higher MCDI and SICD receptive scores than those who did not. Children who used higher rates of sophisticated functions (defined as commenting, requesting, attention getting, and answering) also scored higher on MCDI and SICD receptive measures. Parent MLUm significantly predicted SICD receptive scores. Furthermore, children who used spoken words (10 words or less) during the baseline assessment had significantly higher SICD expressive scores than children who did not. Children who used sophisticated functions at higher rates had significantly higher SICD expressive scores. A logistic regression revealed that children who used sophisticated gestures at baseline were 14.7 times more likely to use greater than 10 words according to MCDI expressive scores. Parent characteristics had no impact on these same expressive measures. Implications for language development for children with significant disabilities will be discussed. 120 POSTER SESSION 2 2. Repetitive Behaviors and Sensory Features in Young Children with Autism: Examining Relationships and Specificity Brian A. Boyd1, Grace T. Baranek, Linda R. Watson, & Elena Gay Department of Allied Health Sciences, University of North Carolina at Chapel Hill Introduction: It has been suggested in the field of autism that repetitive behaviors and sensory features are inextricably linked or at the very least strongly related (Rogers & Ozonoff, 2005). Empirical research has lagged behind theories on possible insults to shared neural systems or deficient neurocognitive mechanisms that may underlie both classes of behavior. Even at the behavioral level little is known about the relationship between repetitive behaviors and sensory features. Examining this relationship in children with autism could provide insight into pathogenesis, shared or differential treatments for these classes of behavior, or potentially have diagnostic implications for the third category of core autism features. The purposes of this study are (a) to examine the relationship between sensory features and repetitive behaviors in children with autism; (b) to identify differential associations for autism vs. a DD comparison group that included children with Down syndrome; (c) to identify maturational variables (e.g., CA, MA, IQ) that moderate any relationship; and (d) to examine their association(s) with other clinical features (e.g., symptom severity, adaptive skills). Method: Data were collected from 66 children with autism (n=48) and DD (n=18), ages 2-7, using empirically-valid parent and observational measures. Parent-report sensory measures included the Sensory Experiences Questionnaire (SEQ) & Sensory Profile (SP). Observational sensory measures included the Sensory Processing Assessment (SPA) & Tactile Defensiveness & Discrimination TestRevised (TDDT-R). Derived factor solutions from the Repetitive Behavior Scales-Revised (RBS-R) (parent report measure) were used to analyze the repetitive behavior data (Lam & Aman, 2006). Results: We have run preliminary correlation analyses with the autism and DD groups combined. Analyses indicate the stereotypy factor on the RBS-R is most strongly correlated with the sensory parent report (SEQ, SPA) and observational (SPA only) measures. The correlation between children’s total mean SEQ score and stereotypy is 0.73 (p<.0001), and only the stereotypy subscale is correlated with the SPA. The 4 remaining RBS-R subscales yielded low to moderate correlations. After controlling for children’s IQ scores based on the Leiter, significant correlations maintained between parent report sensory measures and the RBS-R. Prior to the poster session we will run additional analyses to parse out differences for the autism vs. DD groups with additional subjects added to each group. Further, items from the 4 sensory measures will be conceptually grouped into hyporesponsive, hyperresponsive, and sensory seeking constructs to examine their relationship to the 5-factor solution derived for the RBS-R. We have found stronger correlations between CARS’ total score (measure of autism severity) and mean scores on the SEQ hyporesponsiveness (0.54, p=.00) vs. hyperresponsiveness (0.25, p=.04) subscales for our current sample, with stereotypy again being the repetitive behavior factor most correlated with the CARS (0.42, p=.00). Discussion: The preliminary results indicate that sensory features in children with autism and DD are related to repetitive behaviors. In particular, the presence of stereotypy appears to be most strongly associated with sensory features. Autism severity appears to be more strongly related to underresponsiveness vs. overresponsiveness to sensory stimuli as well as presence of stereotypy. Supported by: NIH HD42168 1 Contact: Brian Boyd, Ph.D.; Email: [email protected]; Mailing Address: UNC-Chapel Hill, Department of Allied Health Sciences, CB# 7122, Chapel Hill, NC 27599-7122; Phone: 919.843.2628 121 3. POSTER SESSION 2 Predicting the Depression and Well-being of Mothers Rearing Children with Developmental Disabilities April M. Corrice, Laraine M. Glidden, and Brian M. Jobe St. Mary’s College of Maryland, Department of Psychology St. Mary’s City, MD 20686 Contact: [email protected] Because birth mothers had significantly higher depression scores at the time of their children’s diagnoses of developmental disabilities (DD) than adoptive mothers at the time of their children’s placement, Glidden and Schoolcraft (2003) were interested in similarities and differences in later functioning between these adoptive and birth mothers when their children were, on average, 11 years old. Glidden and Schoolcraft reported that concurrent scores for the personality variable of Neuroticism powerfully predicted depression for all mothers. For birth mothers only, earlier depression scores predicted later depression and subjective well-being related to the child was predicted by concurrent scores for the personality variable of Agreeableness and earlier levels of family accord. The current study extends the findings of Glidden and Schoolcraft and introduces new variables with the potential to predict depression and subjective well-being related to the child. Adoptive or birth status was also examined as a potential predictor of maternal functioning. Four times of measurement, each separated by 5-6 years, were included in this longitudinal study. The Family Strengths Scale (FSS), Questionnaire on Resources and Stress (QRS), NEO Five-Factor Inventory (NEO-FFI), and Adaptive Behavior Scale (ABS) served as predictors of the Beck Depression Inventory (BDI) and Subjective Well-being, Child-related (SWB-CR). Mothers completed each measure, except for the ABS, which was completed by the children’s teachers. The final sample included 123 mothers (69 birth and 54 adoptive) who were part of an original sample consisting of 249 families with at least one child with DD. BDI and SWB-CR mean scores were low for both adoptive and birth mothers, demonstrating positive functioning. Specifically, mean depression scores were in the non-depressed range and mothers were, on average, “pleased” to “mostly satisfied” with how things were going with their children. Significant predictors of BDI and SWB-CR scores were determined via multiple regressions. Time 2 BDI, time 3 BDI, and FSS Family Accord were uniquely significant predictors of time 4 BDI. These results indicate that depression is related to itself over time and that the less conflict families experienced and the better they were able to resolve disputes, the less future maternal depression. Earlier SWB-CR, NEO-FFI Openness, and QRS Personal Burden predicted later SWB-CR, demonstrating that maternal well-being regarding the child is related to itself over time. Also, mothers who score high on Openness may be more understanding and accepting of their children’s differences, which could contribute to more positive subjective well-being related to the child. Lastly, the less burdened mothers are, the greater their well-being related to the child. Neither NEO-FFI Neuroticism nor adoptive/birth status were significant predictors of BDI or SWB-CR scores. In conclusion, these results demonstrate that, overall, both adoptive and birth mothers manifest good adjustment, consistent with the findings of Glidden and Schoolcraft. Also, the mothers’ functioning is closely intertwined with individual and family variables. Thus, intervention at an individual or family level may be effective for those mothers who do experience depression or low levels of subjective well-being related to the child. Reference Glidden, L. M., & Schoolcraft, S. A. (2003). Depression: Its trajectory and correlates in mothers rearing children with intellectual disability. Journal of Intellectual Disability Research, 47, 250-263. 122 4. POSTER SESSION 2 Positive States as Mediators of Stress in Parents of Children with Different Types of Intellectual Disabilities Elizabeth Roof, Elizabeth Pantino, Rebecca Kossler, Ray Johnson, & Elisabeth M. Dykens Vanderbilt Kennedy Center, 230 Appleton Place, Nashville, TN 37203 [email protected] Introduction: Although parenting children with intellectual disabilities is consistently associated with heightened stress, several child and parent factors appear to mediate stressful outcomes. Maternal stress is associated with heightened child maladaptive behaviors, as well as the child’s etiology. For example, stress is generally higher in mothers of children with Prader-Willi syndrome and with autism as compared to families of children with Down syndrome. Mothers who adopt problem-solving coping styles fare better than those who do not. Studies have not yet examined the effects of positive parental perceptions on parental stress, nor have they routinely used cortisol levels as a biomarker of stress. This study examined relations among parental stress, anxiety, coping, health status, and cortisol levels. Positive perceptions of raising a child with disabilities were cast as a protective factor that would predict lower stress and cortisol levels, as well as improved health. Methods: Parents of 30 children with Prader-Willi sydrome, 30 with Williams syndrome, and 40 with autism spectrum disorders completed a health survey; Parenting Stress Index; Beck Anxiety and Depression Scales; Parental Ways of Coping; Positive Parenting and Positive Perceptions; and child maladaptive behavior. Cortisol levels were extracted from 6 saliva samples collected at set intervals over a 24-hour period. Parents ranged in age from 30 to 62 years, with mean of 43 years in each group, the majority of respondents were mothers; 20% in each group were fathers. Findings: Compared to parents of children with Williams syndrome, significantly higher levels of stress were found in parents of offspring with Prader-Willi syndrome and with autism spectrum disorder (p < .01). Significant, inverse relations emerged between positive perceptions of raising a child with disabilities and levels of parental stress, depression, and anxiety. Cortisol samples are currently being analyzed in the Williams syndrome and autism groups. Within Prader-Willi syndrome, fathers had significantly higher cortisol levels than mothers. Maternal cortisol levels were positively associated with seeking social supports, specific health concerns, and number of offspring (r’s = .64 to .67, p’s < .01). Discussion: Etiology and positive perceptions both affect levels of parental stress, and cortisol levels hold promise as a biomarker of stress responses for parents of children with intellectual disabilities. 123 5. POSTER SESSION 2 Insecure and Disorganized Attachment among At-Risk Children: The Influence of Subthreshold Neglect Jaelyn R. Farris, Jody S. Nicholson, and John G. Borkowski University of Notre Dame The security and organization of infant-mother attachment bonds are at risk when caregivers fail to respond to their children in a responsive and sensitive manner. Insecure and disorganized attachment may facilitate the early onset of developmental delays, especially youth psychopathology. Certain factors, such as adolescent parenting, may increase the likelihood of unresponsive or neglectful caregiving and, in turn, jeopardize the formation of a secure and organized attachment bond. In addition, children of adolescent mothers are at risk for developmental delays. Although it has been established that adolescent parenting and child neglect are associated with insecure and/or disorganized attachment, less is known about: (1) the effects of “subthreshold neglect,” in which parents provide unresponsive and/or inattentive care that is severe enough to put children at risk for maladjustment but less severe than the legal criteria used to mandate intervention, (2) the unique effects of subthreshold neglect in various domains (e.g., physical, emotional, and educational), and (3) variations in these relationships between adolescent versus adult mother-child dyads. The present study focuses on the impact of subthreshold physical, emotional, and educational neglect on the security and organization of infant-mother attachment at one year of age among adolescent and adult mother-child dyads. Participants are 263 primiparous mothers and their children drawn from a larger longitudinal project. Approximately half (53.2%) of the sample is comprised of adolescent mothers. The sample is racially diverse, with approximately 65% African-American, 19% European-American, and 14% Latina mothers; these rates are nearly equivalent between teen and adult groups. Measures of subthreshold physical, emotional, and educational neglect were assessed when infants were 4 and 8 months of age through home-based interviews and observations using the Landry Observation of Parent-Child Interactions, the Infant/Toddler Home Observation for the Measurement of the Environment, the Supplement to the Home scale for Impoverished Families, and interviewer ratings of neglectful behaviors. Attachment between mothers and children was assessed in the lab at 12 months; videotapes of the Strange Situation are currently being coded by a team of four raters who were trained and certified through the Institute of Child Development at the University of Minnesota. The analyses for this study, which are underway pending final coding of attachment data, consist of three phases: (1) the development of scales that represent subthreshold physical, emotional, and educational neglect, (2) a description of the prevalence of A, B, C, and D attachment classifications, and (3) the prediction of attachment classifications from subthreshold physical, emotional, and educational neglect. It is expected that multiple indicators from the home-based measures will represent the latent constructs of subthreshold physical, emotional, and educational neglect; that the rates of insecure and disorganized attachment will be elevated among children of adolescent mothers; that children exposed to more severe levels of subthreshold neglect will be more likely to have insecure and disorganized attachment patterns; and that subthreshold emotional neglect will be a stronger predictor of insecure and disorganized attachment than subthreshold physical or educational neglect. Findings from this study will have the potential to inform future prevention and intervention work, enabling programs to target specific domains of unresponsive parenting, rather than an overall neglect construct. Resultant programs may facilitate secure and organized infant-mother attachment relationships and prevent the onset of developmental delays, such as youth psychopathology, that may be associated with insecure and/or disorganized infant-mother attachment patterns. 124 6. POSTER SESSION 2 The Role of Caregiver Praise as a Mechanism for Children’s Sustained Engagement Kim Har & Connie Kasari University of California, Los Angeles, Graduate School of Education Contact: Kim Har, UCLA Graduate School of Education, Moore Hall, Box 951251, Los Angeles, CA 90095-1521 Contact: [email protected] Previous literature reports that children with Down syndrome tend to exhibit lower levels of sustained engagement during interactive tasks than typically-developing peers (e.g. Cielinski, Seifer & Contreras, 1995). Meanwhile, studies have found that the caregivers of children with Down syndrome are more supportive and provide more praise during interactive tasks than caregivers of typically-developing children (Roach, Barratt, Miller, & Leavitt, 1998; Hughes & Kasari, 2000). The current study attempts to explore these two themes by examining the nature of caregiver-praise and the sequential way in which it may be exhibited; specifically, the study asks: do support and praise from caregivers serve as a mechanism to help maintain the interest and continued engagement of children with Down syndrome during interactive tasks? Twenty children with Down syndrome and their caregivers participated in the current study, along with 20 typically-developing children and their caregivers. The two groups were matched based on their levels of mental age. The children with Down syndrome (mental age 40.25) ranged from four to eight years of age, while the typically-developing children (mental age 39.65) ranged from 30 months to four years of age. Child-caregiver dyads were asked to engage with toys that had clear criteria for completion (e.g., puzzles). These videotaped interactions were then coded for child response and engagement, as well as caregiver praise. Inter-rater reliability was found to be good (G=0.73) to high (G=0.91). Group differences in child and caregiver behavior between the Down syndrome and typical group were examined during the process of completing the task and at task completion. Caregivers of children with Down syndrome provided more frequent praise during task completion than did caregivers of typical children. Children with Down syndrome were also found to exhibit greater social orientation to their caregivers than the typically-developing children, F(2,76) = 5.40, p < .05; however, during the interaction, they were also more frequently disengaged from the task itself. Secondary analyses are now being conducted to examine associations between caregiver and child behaviors in this task and in a story book reading task. Initial results indicate that, for group with Down syndrome, caregiver praise is directly associated to continued engagement during both interactive tasks. Additional analyses involving sequential coding of caregiver praise and children’s responses will reveal further insight concerning the nature of the relationship between caregiver praise and sustained engagement of children with Down syndrome. These results, suggesting that caregiver praise might play a facilitating role in maintaining the interest and active engagement of children with Down syndrome during learning tasks, may have potential implications for special educators and families of children with Down syndrome. References Hughes, M. & Kasari, C. (2000). Caregiver-child interaction and the expression of pride in children with Down syndrome. Education and Training in Mental Retardation and Developmental Disabilities, 35, 67-77. Roach, M.A., Barratt, M.A., Miller, J.F., & Leavitt, L.A. (1998). The structure of mother-child play: Young children with Down syndrome and typically developing children. Developmental Psychology, 34, 7787. Cielinski, K.L. & Vaughn, B.E. (1995). Relations among sustained engagement during play, quality of play, and mother-child interaction in samples of children with Down syndrome and normally developing toddlers. Infant Behavior and Development, 18, 163-176. 125 7. POSTER SESSION 2 Stressful Social Interactions, Attributions, and Coping among Depressed Adults with Mild Intellectual Disability-Poster Presentation Sigan L. Hartley* and William E. MacLean, Jr. *Corresponding Author: University of Wyoming, Department of Psychology, Dept. 3415, 1000 E. University Ave, Laramie, WY 82071 Email: [email protected] Introduction: Depression is one of the most frequently encountered mental health problems among people with intellectual disability (ID). Little is known about the behavioral, cognitive, and interpersonal variables related to the onset, presentation, and persistence of depression in an ID population. In the general population, depressed persons frequently experience interpersonal stress, endorse negative attributions for stressful events (i.e., internal, stable, and global causes), and utilize maladaptive coping to deal with these events. These processes are often the focus of therapies and are theorized to contribute to the onset and persistence of depression over time. Whether interpersonal stress, negative attributions, and maladaptive coping are prominent features of depression among adults with ID is unknown. Methods: The frequency and stress impact of stressful social interactions, causal attributions for these interactions, and coping strategies of 31 depressed and non-depressed adults with mild ID matched on various subject characteristics were examined. Participants were recruited through 10 disability services providers in the Rocky Mountain region. The Diagnostic Criteria for Psychiatric Disorders for Use with Adults with Learning Disabilities/Mental Retardation (Royal College of Psychiatrists, 2001) and Birleson Depressive Short Form Self-Rating Scale (Birleson, 1981) were used to confirm diagnoses of depression. Self-report measures were used to assess the frequency and stress impact of stressful social interactions. Open-ended questions were used to elicit attributions for stressful social interactions and coping efforts and responses were coded by two undergraduate students who were naïve to the study hypotheses. Results: Depressed adults with mild ID reported a higher frequency and stress impact of stressful social interactions than non-depressed adults. Depressed adults with mild ID attributed stressful social interactions to more internal, stable, and global causes than non-depressed adults. Depressed adults with mild ID also reported fewer active coping strategies, particularly Support Seeking coping, and more avoidant coping, particularly Cognitive Avoidance coping, than the non-depressed adults. Discussion: Findings have implications for understanding and treating depression in an ID population. Depression in adults with mild ID may be partially maintained over time by heightened rates of stressful social interactions, maladaptive coping efforts, and tendencies to attribute conflict with others to internal, stable, and global causes. Psychotherapies that alter these maladaptive cognitive tendencies and interpersonal skill deficits, and encourage active coping may be appropriate interventions for depression. 126 8. POSTER SESSION 2 Family Cohesion and Its Influence on Adaptive Behavior Development in Children with a Disability Lara S. Head Waisman Center, University of Wisconsin-Madison 1500 Highland Ave., Suite 533, Madison, WI 53705 Contact: [email protected] Alan M. Gross The University of Mississippi Introduction: Family cohesion represents a potentially critical missing explanatory construct in much of the research examining how families interact and function in response to raising a child with a disability. Although such families are at risk for the development of dysfunctional family interaction patterns, little is known about the impact of family functioning on the adaptive behavior development of children with developmental disabilities. This study examined the relationship between family cohesion and adaptive behavior development in children with a disability, hypothesizing that children in families with high levels of cohesion would demonstrate better developmental outcomes in adaptive behavior as compared to children in families reporting lower levels of cohesion. Method: Forty-two parents of children diagnosed with a developmental disability were compared with 43 parents and their typically developing children. Children ranged in age from 7 and 11 and were matched on age and gender. Control child participants were assessed using the Peabody Picture Vocabulary Test –III for estimated average cognitive functioning. Special education records were used for experimental group inclusion based on diagnosis of mental retardation and/or other identified developmental disability. Parents of both groups of children completed self-report measures assessing their perceptions of family interaction and functioning. Parents of children with a disability also completed the Vineland Adaptive Behavior Scales – Interview Edition to assess global and specific areas of adaptive behavior functioning in their children. Results: Findings demonstrated that families with a child with a disability did not significantly differ in cohesion as compared to families with a typically developing child. A positive relationship was observed, however, between cohesion demonstrated within the family as a unit and levels of cohesion within the marital or partner relationship. Finally, controlling for IQ, parental stress, was the greatest predictor of global adaptive development in the children (R = .915, R² = .837, Adjusted R² = .822, ΔR2 = .072, F (1, 32) = 14.253, p = .001). Discussion: Results suggest that families with a child with a disability may be functioning as effectively as families with typically developing children in terms of cohesiveness. Furthermore, the positive interactions characteristic of cohesive families may be protecting families from the negative influences of stress associated with caregiving and parenting a child with a disability. Rather than such challenges having a negative impact, they may serve as a catalyst for the development of a level of cohesion that meets the needs of the family. Key References Hauser-Cram, P., Warfield, M. E., Shonkoff, J. P., & Krauss, M. W. (2001). Children with disabilities: A longitudinal study of child development and parent well-being. Monographs of the Society for Research in Child Development, 66, 1-131. 127 9. POSTER SESSION 2 Father Presence as a Predictor of Maternal Stress and Quality of Life in Families with Children with Fragile X Syndrome Anna James, Jane E. Roberts, and Don Bailey University of North Carolina 517 South Greensboro Street, Chapel Hill NC 27599-8040 Contact: [email protected] Introduction: Evidence shows that fathers provide a unique and important contribution not only to their children’s development but also to the family’s well being. Despite an upsurge in interest and recognition of the significance of the father’s role, research investigating the importance of father presence in families with children with disabilities has been scarce. Studies indicate that mothers who take on the bulk of caring for a child with a disability experience more stress and often rely on others for support. In particular, evidence suggests that mothers of children with disabilities report needing practical assistance more than emotional support from their partners. Taken together, this suggests that a father’s presence may help relieve some of the burden of care; thus, improving the mother’s well being. The purpose of this study is to explore the extent to which fathers’ presence is related to maternal stress and quality of life in families with children with fragile X syndrome (FXS). Method: The data presented in this poster were derived from an ongoing longitudinal study of adaptation in families with a child with FXS. One-hundred-and-four mothers are included in this sample. Eighty-two mothers reported a father present in the home, and 22 of the mothers reported that there was no father present. All of the target children had the full mutation of FXS. The Parenting Stress Index-Short Form (PSI) and the Quality of Life Inventory (QOLI) were completed by each mother to collect information on perceived stress resulting from the parental role and life satisfaction. Family demographic information was utilized to group participants into two groups: 1) mothers who reported a father present in the home, and 2) mothers who reported a father not present in the home. Results: Covarying for household income, analyses of variance (ANOVA) revealed elevated stress in mothers without the father present in the home for the Parental Distress (F(3, 100) = 15.07, p = <.001) and Defensive Responding (F(3, 99) = 13.29, p = <.001) subscales as well as for the Total Parenting Stress composite (F(3, 100) = 9.15, p = <.01). Lower quality of life scores were found in mothers without the father present in the home (F(3, 98) = 14.79, p = <.001). No effects were found for household income or for household income-by-father presence interaction. Discussion: Preliminary analyses of our data indicate that fathers’ presence is important for maternal perceptions of parenting stress and quality of life in families with children with FXS. Such findings are important to the development of policy to optimize the well being of single mothers of children with disabilities. Some research suggests that the effects of fathers’ presence could be moderated by child problem behaviors and that mother’s satisfaction with the father’s role is a more important predictor for their well being than the father’s actual presence. Therefore, additional investigation is needed to delineate the specific role father presence plays in decreasing maternal parenting stress and improving quality of life. 128 10. POSTER SESSION 2 Auditory Brainstem Evoked Responses in Newborns with Down Syndrome P. Kittler1, 2, B.Z. Karmel1, 2, H.T.T. Phan1, 2, J.M. Gardner1, 2, A. Gordon1, 2, & A. Harin2 1 NYS Institute for Basic Research in DD & 2St. Vincent’s Catholic Medical Center, Staten Island, NY email:[email protected] Auditory brainstem evoked responses (ABRs) have been used to help understand and localize the hearing impairment and poor auditory processing that is widespread among the population with Down syndrome (DS). A common finding in this group has been shortened peak component latencies (CLs), particularly of Wave V1, 2. Previous studies generally have included broad age ranges, with few participants under 1 year of age. The present study examined ABRs in neonates with DS and compared them to ABRs in infants without DS. Participants were an opportunistic sample of all newborns diagnosed with DS and administered ABRs (n=27), during the last 9 years of a longitudinal study of attention and arousal in high risk infants3. Twenty of 27 newborns with DS had normal ABRs, and were matched by sex, postconceptional age (PCA) at test, and birth weight to 20 newborns with normal ABRs and without DS. This group of 40 participants was 65% female, had a mean birth weight of 2643 g, and a mean PCA at test of 37.8 weeks. Despite matching on birth weight and PCA, head circumference was smaller in the group with DS (F (1,38)= 4.12, p<.05). Procedure Ipsilateral left ear vertex-to-mastoid recordings were made using 100 µsec rectangular rarefaction click stimuli presented at 12.1 Hz through a miniature earphone at 80dB re adult nHL. A composite ABR consisting of the average of 3 x 1024 artifact-free sweeps was used to identify CLs. Stimulus delivery and response averaging were done with Intelligent Hearing System Smart EP hardware and software modules. Testing occurred within a short time after birth (M=5.1 days) in the neonatal intensive care unit or newborn nursery. Previously established laboratory normative values, specific to PCA, were used to categorize ABRs as normal or abnormal4. Wave V Peak Latencies Latency in msec 7.5 7 6.5 6 5.5 31 33 35 37 39 41 Results Comparisons between the DS and control groups indicated no difference in Wave I CLs, but both Wave III (F =12.32, p<.001) and Wave V (F(1,38)= 13.55, p<.001) CLs DS Control (1,38) were significantly shorter for neonates with DS. Discussion These results extend findings of shortened ABR Wave III and V CLs in DS to the earliest newborn period. Shortened latencies in DS neonates suggest that the neuroanatomical basis for this difference emerges very early in development. The patterns observed here are similar to those recently reported among newborns with intrauterine growth retardation5. Whether the etiology of this ABR pattern for the neonates with DS and those with intrauterine growth retardation are similar remains to be investigated. PCA at test (w ks) References 1 Seidl, R. et al. (1997.) Auditory evoked potentials in young patients with Down syndrome. Event-related potentials (P3) and histaminergic system. Cognitive Brain Research, 5, 301-309. 2 Krecicki, T. et al. (2005). Brain auditory evoked potentials in children with Down syndrome. International Journal of Pediatric Otorhinolaryngology, 69, 615-620. 3 Gardner, J.M. et al. (2006). Arousal, attention, and neurobehavioral assessment in the neonatal period: implications for intervention and policy. Journal of Policy and Practice in Intellectual Disabilities, 3, 22-32. 4 Karmel, B.Z. et al. (1988). Brain-stem auditory evoked responses as indicators of early brain insult. Electroencephalography and Clinical Neurophysiology, 71, 429-442. 5 Phan, H.T.T. et al. (2006, Oct). Auditory brainstem evoked responses in newborn twins. 2006 Meeting of the International Society for Developmental Psychobiology, Atlanta, GA. This work is supported by NICHD grant P01-HD47281, R01- HD21784, and NYS OMRDD 129 11. POSTER SESSION 2 Gender and Delay of Gratification in High Risk Children Shira Kolnik ([email protected]), Ann-Marie Faria ([email protected]), Marygrace Yale Kaiser ([email protected]) University of Miami, 5665 Ponce de Leon Blvd, Coral Gables, FL 33124 Previous studies have examined the ability to delay rewards for a period of time in order to attain a better reward (e.g., Mischel, 1966; Mischel & Ebbesen, 1970). The ability to delay gratification is associated with numerous outcomes including lack of resilience, addictive disorders, and antisocial behavior (Mischel, Shoda & Rodriguez, 1989). A meta-analysis of gender differences in delay of gratification found that females are better at delaying rewards than males, especially when continuous measures were used (Silverman, 2003). The meta-analysis was restricted to studies of normal samples. There is a lack of published articles studying delay of gratification in at risk or special needs populations. The current study samples from a population of children previously enrolled in a birth-to-three intervention for prenatal exposure to cocaine. The sample of 19 children is primarily African American and low socioeconomic status, placing them at risk for behavior problems (Arnold & Doctoroff, 2003). Participants range from 6 to 8 years of age, with 9 females. The delay of gratification paradigm (Mischel, 1966) was used to measure ability to delay rewards by placing two choices in front of the child, one plate with a small pile of food and one plate with a larger pile. The child is told that he can have the small pile of food whenever he wants, but that if he waits seven minutes without eating the food he will receive the larger pile. The child is left to wait in the room for up to seven minutes. Eating the food or ringing a bell will terminate the session, leaving the child with the smaller pile of food. Two analyses of the continuous measure of seconds spent waiting reveal a gender effect with males waiting longer than females. This is opposite to the gender effect that has previously been reported in the literature with females waiting longer than males in typical populations. An analysis of variance revealed that boys waited significantly longer than girls (Mmales=390, Mfemales=212, F(1,17)= 10.57, p<.01). A post-hoc analysis of effect size and power found a large effect size (Cohen’s d=1.49) and adequate power (power=.8). A multivariate linear regression revealed gender as a significant predictor of time spent waiting (β=248.16, p<.01). A Chi-square statistic of dichotomous outcomes, whether the child waited the entire time or terminated the session, showed significantly more males waiting the entire session than females (x2(1)=6.357, p<.01). The data raises doubt about the generalizability of the gender effect to special needs populations. Contrary to reported gender effects in typically developing populations, the gender effect in this high risk population of children shows a strong gender effect of males waiting longer than females. This effect held true for both dichotomous and continuous measures of delay of gratification. Subsequent studies should attempt to replicate the findings with larger samples of at risk and special needs populations. Arnold, D.H. & Doctoroff, G.L. (2003). The early education of socioeconomic disadvantaged children. Annual Review of Psychology, 54, 517-545. Mischel, W. (1966). Theories and research on antecedents of self-imposed delay of reward. In B. Maher (Ed.), Progress in experimental personality research. New York: Academic Press. Mischel, W. & Ebbeson, E.B. (1970). Attention in delay of gratification. Journal of Personality and Social Psychology, 16(2), 329-337. Mischel, W., Shoda, Y. & Rodriguez, M. L. (1989). Delay of gratification in children. Science, 24(4907), (933-938). Silverman, I. W. (2003). Gender differences in delay of gratification: A meta-analysis. Sex Roles, 49, (451-163). 130 12. POSTER SESSION 2 Changes in Joint Attention Following Two Years of Early Intensive Behavioural Intervention in Preschool Aged Children with Autism Hanna Kovshoff1, Richard Hastings2 & Bob Remington1 1 School of Psychology, University of Southampton, UK 2 School of Psychology, University of Wales, Bangor, UK Contact: [email protected] Introduction: Children with autism are often reported to be significantly delayed or deviant in their development of precursors to social communication including eye contact, sharing attention, and pointing out items of interest. The present study monitored the longitudinal development of joint attention in a group of preschool aged children with autism who received Early Intensive Behavioural Intervention (EIBI) (n = 21) and a Comparison group (n = 16) who received a range of local educational authority provision in the South of England across two years. The aim was to identify whether EIBI was able indirectly to target and improve the initiation or response to joint attention in the group of children who received it. Method: All of the children were assessed using the Early Social Communication Scales (ESCS) (Mundy, Hogan, & Doehring, 1996) at three time points (baseline, 12 month follow-up, and 24 month follow up). The ESCS is a videotaped structured observation measure that provides an index of individual differences in nonverbal communication skills. Results: After two years of EIBI, children in the Intervention group made significant gains in their ability to respond to joint attention (RJA) relative to the Comparison group. Initiating joint attention (IJA) increased in frequency for both groups over time but significant group differences were not found. Discussion: While RJA may increase as a concomitant effect of engaging in early intervention, the ability to initiate joint attention may need to be targeted directly to promote positive change relative to a Comparison group. Further research is needed to evaluate whether direct targeting of IJA may compensate for a difficulty in generalizing from structured teaching situations. Measurement and assessment of joint attention in children with autism will also be discussed. 131 13. POSTER SESSION 2 Maternal Predictors of Adaptive Behavior of Boys with Fragile X Syndrome Heather Magruder, B.A. FPG Child Development Institute, University of North Carolina at Chapel Hill 517 S. Greensboro St; Carrboro, NC 27510-2341 Contact: [email protected] Introduction: Adaptive behavior refers to both practical (self-care, work, and play) and social (interaction and communication) constructs that describe how well an individual can function independently (American Association on Mental Retardation, 1992). Research suggests that chronological age (CA), gender, severity of intellectual disability, number of autistic behaviors, and screenings of current maternal depressive symptoms are significant predictors of adaptive behavior of boys with FXS. However, few researchers have examined the effect that lifetime occurrence of major depressive disorder (MDD) has on the adaptive behavior of boys with FXS. The purpose of this study was to address this gap in the literature by examining the effect of lifetime occurrence of MDD, maternal parenting stress, and martial intimacy on adaptive behavior skills in boys with FXS while controlling for CA and autistic behavior. Method: This study included 47 families with a boy with the full mutation of FXS and mothers who reported a spouse in the home. Due to the focus of this study on MDD, mothers with MDD (with or without co-morbid anxiety disorders) were included (n = 24) as were mothers with neither mood nor anxiety disorders (n = 23). The age of the boys ranged from 9 months to 8.5 years (M = 36.57 months). Adaptive behavior was measured using the Vineland Adaptive Behavior Scales, Interview Edition; autistic behavior was assessed using the Childhood Autism Rating Scale (CARS); MDD was diagnosed using the Structured Clinical Interview for DSM-IV Axis I Disorders- Research Version; maternal parenting stress was measured using the Parenting Stress Index- Short Form (PSI); maternal marital intimacy and support was measured by the Emotional Intimacy subscale of the Personal Assessment of Intimate Relationships Inventory (PAIR). Results: A univariate general linear model was run to examine maternal predictors of adaptive behavior. The Vineland Composite Standard Score was the dependent variable and a history or MDD, PSI, and PAIR scores were the predictor variables. Chronological age and autistic behavior were covariates. Results suggest a significant interaction between a history of MDD, PSI, and PAIR scores in predicting Vineland Composite scores, F(1,38) = 5.60, p = .023. The strength of the interaction was fairly modest and accounted for 13.2% of the variance of the Vineland Composite Scores. Discussion: The results of this study suggest that a history of maternal MDD, current maternal parenting stress, and current marital intimacy and support all contribute to adaptive behavior skills in young boys with FXS. There are several limitations of this study. First, the directionality of the observed effect cannot be determined because some of the major depressive episodes occurred before the birth of the child, while others occurred after. Second, some of the women with MDD also had an anxiety disorder that could have had an effect on their children. However, the sample sizes are too small to test this relationship directly. Finally, we did not consider the severity, duration, or number of depressive episodes, all of which could affect adaptive behavior differently. Reference: American Association on Mental Retardation (1992). Mental Retardation: Definition, Classification, and Systems of Support, 9th ed. Washington, DC: American Association on Mental Retardation. Kessler, R. C., Berglund, P., Demler, O., Jin, R., Merikangas, K. R., & Walters, E.E. (2005). Lifetime prevalence and age-of-onset distributions of DSM-IV disorders in the National Comorbidity Survey Replication. Archives of General Psychiatry, 62, 593-602. 132 14. POSTER SESSION 2 Autism in Early Childhood: Identification and Treatment Nicole J. Neudorfder, Aila Dommestrup, & Laura Lee McIntyre Syracuse University Contact: Laura Lee McIntyre Department of Psychology, 430 Huntington Hall Syracuse University, Syracuse, NY 13244 [email protected] Introduction: There has been a great deal of controversy about whether the prevalence of autism is rising (e.g., Shattuck, 2006; Wing & Potter, 2002 ). Evidence suggests, regardless of prevalence rates, that children are being identified earlier than in years past (Mandell, Novak, & Zubritsky, 2005). Earlier identification may be due, in part, to better diagnostic tools that allow clinicians to detect symptoms in infants (Landa & Garrett-Mayer, 2006) and toddlers (Charman & Baird, 2002; Mandell et al., 2005) and to the growing public awareness of the disorder. When children are identified early they may be eligible to receive early intervention and/or preschool special education and related services. Such early interventions may produce better outcomes for children (Levy, Kim, & Olive, 2006) and their families (Tonge et al., 2006) than those children who do not receive support until school-aged. Methods: The purpose of this study was to describe the child and family characteristics of infants, toddlers, and preschool-aged children diagnosed with autism spectrum disorders in one county in New York State. Demographic characteristics of the child, family, age of diagnosis, and number and intensity of services, were collected through a review of Health Department and Education archival records. Data collection and analysis are ongoing. Results/Discussion: Currently 124 children (birth – five) have been identified as diagnosed with an autism spectrum disorder (autism, PDD-NOS). Of these children, the majority are preschool-aged (N=112) and receiving special education and related services. Fewer diagnosed children are enrolled in the county’s Early Intervention Program (N=12). Age at diagnosis, frequency/intensity of services, and race and gender data will be reported on. Relative to the school-aged population of children in this county, there is an estimated prevalence rate of 0.97%. Results will be discussed in light of the growing population of children being served in Early Intervention and Preschool. Methodological issues pertaining to using medical and educational records will be described. Key References Charman, T., & Baird, G. (2002). Practitioner review: Diagnosis of autism spectrum disorder in 2- and 3-year-old children. Child Psychology and Psychiatry, 43, 289-305. Landa, R., & Garrett-Mayer, E. (2006). Development in infants with autism spectrum disorders: A prospective study. Journal of Child Psychology and Psychiatry, 47, 629-638. Levy, S., Kim, A., & Olive, M. (2006). Interventions for young children with autism: A synthesis of the literature. Focus on Autism & Other Developmental Disabilities, 21, 55-62. Mandell, D. S., Novak, M. M., & Zubritsky, C. D. (2005). Factors associated with age of diagnosis among children with autism spectrum disorders. Pediatrics, 116, 1480-1486. Shattuck, P. T. (2006). The contribution of diagnostic substitution to the growing administrative prevalence of autism in US Special Education. Pediatrics, 117, 1028-1037. Tonge, B., Brereton, A., Kiomall, M., Mackinnon, A., King, N., & Rinehart, N. (2006). Effects on parental mental health of an education and skills training program for parents of young children with autism: A randomized controlled trial. Journal of the American Academy on Child Adolescent Psychiatry, 45, 561-569. Wing, L., & Potter, D. (2002). The epidemiology of autistic spectrum disorders: Is the prevalence rising? Mental Retardation and Developmental Disabilities Research Reviews, 8, 151-161. 133 15. POSTER SESSION 2 Trajectory of Mathematics and Reading Skills in School-age Girls with Fragile X Syndrome Melissa M. Murphy & Michèle M. M. Mazzocco Johns Hopkins University and Kennedy Krieger Institute Contact: M Murphy 3825 Greenspring Ave Baltimore MD 21211 [email protected] Introduction: Difficulty with math is documented among girls with fragile X syndrome as early as kindergarten (Mazzocco, 2001) and persists through the elementary school years (Murphy & Mazzocco, in press). For example, kindergarten girls with fragile X are distinguished from their peers on applied counting skills (e.g., identifying the Nth item in an array), but not rote counting skills (e.g., counting by ones). By 5th grade, girls with fragile X differ from IQ-matched peers on untimed calculations and have less mastery of developmentally appropriate math tasks, including counting. Reading ability may contribute to math as a mediator of math performance, including word problem solving (Jordan et al., 2002). Relative to math, reading skills are a strength for girls with fragile X. In early elementary school, girls with fragile X do not differ from IQ-matched peers on nonword reading. In 5th grade, reading fluency and overall phonological access (a predictor of reading) do not distinguish girls with fragile X from IQ-matched peers. Although there is crosssectional support for the reported profile of math and reading-related skills, the developmental course of these skills across the school years is unclear. The present study examines the trajectory of math and reading-related skills in girls with fragile X during elementary and middle school, and the extent to which phonological access predicts math performance. Methods: Girls with fragile X who were seen at least two times in 1st-7th grade (n = 24) and a comparison group of typically developing girls (n = 19), also seen during the same grades, were selected from a longitudinal study. Girls with fragile X had lower IQ scores than the comparison group (p<.05), thus full scale IQ is included as a predictor in the analyses. The Woodcock Johnson-Revised Calculation (available grades 1-6) was used to assess math skills. Three rapid automatized naming (RAN) subtests, Colors, Numbers, and Letters (available grades 1-7), assessed phonological access and retrieval. Results: Growth curve analyses indicated that girls with fragile X had lower Calculation scores in 6th grade (p<.01) and slower growth from 1st-6th grade (p<.05) than the comparison group. Relative to the comparison group, girls with fragile X had longer response times on Color, Number, and Letter naming in 7th grade (ps<.001), and their response times on Numbers between 1st-7th grade were decreasing at a faster rate (p<.05). No group differences in growth were found for Colors or Letters. After controlling for FSIQ, differences in response time on all three RAN tasks, but not Calculations, persisted. Numbers response time was a significant predictor of 6th grade Calculation scores (p<.001); whereas FSIQ, and Colors and Numbers response times predicted growth (ps<.05). Discussion: The profile of math skills reported among young girls with fragile X continues to distinguish them from their peers into middle school. Also, differences may emerge by middle school on reading-related skills. Although data were not available on Calculations for the comparison group in 7th grade, examination of 7th grade scores for girls with fragile X suggests a plateau in performance in 7th grade. Group differences in the trajectories of RAN subtests and the influence of FSIQ implicate the possible contribution of working memory to RAN performance. Targeting intervention efforts in mathematics and phonological skills during the elementary school years may be especially important. References: Jordan et al. (2002). Achievement growth in children with learning difficulties in mathematics: Findings of a two-year longitudinal study. JEP, 94, 586-597.; Mazzocco (2001). Math learning disability and math LD subtypes: Evidence from studies of Turner syndrome, fragile X syndrome, and neurofibromatosis Type 1. JLD, 34, 520-533.; Murphy & Mazzocco (in press). Mathematics learning disability in girls with fragile X or Turner syndrome during late elementary school. JLD. 134 16. POSTER SESSION 2 Lip Dynamics and Stereotypic Movement Disorders Karl M. Newell, F. Aileen Costigan, Department of Kinesiology, The Pennsylvania State University and James W. Bodfish, University of North Carolina, Chapel-Hill This study examined the prevalence of stereotypic lip movements and their kinematic characteristics in developmentally disabled adults (profound and severe mental retardation) that have been characterized with stereotypic movement disorders (SMD), self-injurious behavior (SIB) and a contrast group that does not meet the criteria for either of the other groups. The prevalence and kinematic characteristics of lip stereotypies in persons with mental retardation that were diagnosed in different developmental disabilities were investigated. The aim of the project was to examine the lip stereotypies as a function of different developmental diagnoses as a way to provide information on the potential origins of stereotypies. A large pool of participants were chosen from a developmental population and subsequently divided into one of three groups based upon rating scale analysis of some key developmental repetitive disorders. The participant pool included 118 adults, 76 males and 42 females, with mental retardation who resided at a public residential facility. Their mean age was 45.05 years, with a standard deviation of 9.99 years. 16 of the participants functioned in the moderate range, 22 in the severe range, 79 in the profound range of mental retardation (based on standardized behavior tests) and one participant was not rated. The etiology of each participant’s mental retardation was unknown. The control group (Control) contained 35 participants and was defined as residents of the residential facility who did not meet criteria for the other two groups. The stereotypy group (SMD) contained 58 participants and was defined as those individuals who displayed 2 or more symptoms in all three categories on the DSM-IV Checklist or had a Childhood Autism Rating Scale (CARS) score in the Autistic range or received a minimum score of 8 on the Behavior Problems Inventory Stereotypy Subscale and a minimum score of 2 on the Stereotypy Checklist. The selfinjurious behavior group (SIB) contained 25 participants and included individuals who presented with self injurious behaviors according to the Self Injury Trauma (SIT) Scale as administered by psychologists but did not meet the criteria for the SMD group. The Control group consisted of 21 males and 14 females, the STY group contained 6 males and one female, and the SIB group contained 1 male and 2 females. The prevalence of lip stereotypies was proportionally higher in both the SMD and SIB groups than the control group. Of the 118 participants, 12 individuals presented with visually identifiable stereotypic lip movement that met the specific inclusion criteria for this study and were thus subjected to digitization of lip dynamics and further analysis. Of these 12 selected participants, 8 were male and 4 were female. Selected participants were divided by group as follows: 1 male belonged to the Control group, 6 males and 2 females belonged to the STY group, and 1 male and 2 females belonged to the SIB group. Kinematic analysis of lip stereotypies on the participants that met the oscillatory criteria showed that they were more constrained than in organization and at least variable as earlier data from a non DD control group. The data provide further evidence of the enhanced prevalance of lip stereotypies in individuals with SMD and for a different organization to the motor output than controls mimicking the stereotypy. 135 17. POSTER SESSION 2 A Longitudinal Examination of the Mediating Role of Behavior Problems in Adaptation for Families of Children With and Without Developmental Delays Anita Pedersen y Arbona and Keith Crnic Arizona State University PO Box 871104, Tempe, AZ 85287-1104 [email protected], [email protected] A family’s adaptation to a child’s developmental disability is a continuous process that evolves over time. Although this process has attracted much theoretical and empirical debate, only a small number of studies have explored family adaptation to a child’s disability from a longitudinal perspective. Early research implied that families of children with developmental delays adapted poorly (Olshansky, 1962; Wolfsenberger & Menolascino, 1970). Research has since shifted from highlighting the negative impact of a child with delays to an exploration of the family’s positive and negative adaptation strategies (Baker, Blacher, Kopp, & Kraemer, 1997). Currently, research suggests important associations among child developmental status, child behavior problems, and family adaptation. In particular, early behavior problems may predict family adaptation more strongly than developmental status alone (Baker, Blacher, Crnic, & Edelbrock, 2002). The proposed study will further explore the mechanisms that influence family adaptation processes in a longitudinal study of young children and their families. Specifically, the proposed study aims to determine the mediating role of child behavior problems in the link between child developmental level and family adaptation over time. Data for the proposed study will be drawn from a multi-site, longitudinal investigation which prospectively examines the interrelations among children’s developmental status, family processes, child characteristics, and the emergence of psychopathology in young children across the ages of 3 to 9 years. Data for the study are collected using a multimethod, multi-informant approach involving structured parent interviews, parent-completed questionnaires, and independent observations of parent-child interaction in naturalistic and lab-based settings. Participants for the current study include 67 families of children with developmental delays (DD; Bayley MDI scores 75 or below) and 102 families of typically developing children (TD; Bayley MDI score 85 or above). Developmental functioning was assessed at age 3. Level of child behavior problems was obtained at age 6. Elements of family adaptation were measured at child age 6, and include parent-reported questionnaire ratings of marital satisfaction, parent stress and parent psychological symptoms as well as naturalistic home observation ratings of dyadic parent-child and mother-father relationship quality. Preliminary analyses suggest that behavior problems (particularly externalizing problems) play a mediational role in the link between child developmental status and adaptation. Results indicate differential prediction as a function of risk group. In families of children with developmental delays, parent stress, parent psychological symptoms, and mother-child conflict are all significantly predicted by child externalizing problems. In families of typically developing children however, child externalizing problems significantly predict only parent stress levels and parent psychological symptoms. These preliminary results suggest more longitudinal exploration into the associations among child developmental level, behavior problems, and family adaptation is warranted. 136 18. POSTER SESSION 2 Cross-Syndrome Comparisons of Gesture Use inToddlers Amy Philofsky, Ph.D., CCC-SLP, 1, Susan L. Hepburn, Ph.D. 1, Deborah J. Fidler Ph.D.2, & Sally J. Rogers, Ph.D. 3 1 Department of Psychiatry, University of Colorado at Denver Health Science Center, 4200 E. 9th Avenue, Box C268-30; Denver, CO 80262; 2 Human Development & Family Studies, Colorado State University; 3 MIND Institute, Department of Psychiatry, University of California, Davis; *Contact: [email protected] Interest in communicative gestures as precursors to language acquisition was originally fueled in the 1970’s. Bruner (1981) classified gestures that emerge during the first year of life in typical development into three broad categories based upon the behavior’s function: 1) Behavioral Regulation (i.e., acts used to regulate another’s behavior to obtain or restrict an environmental goal) 2) Social Interaction (i.e., acts used to attract or keep another’s attention in order to associate) and 3) Joint Attention (i.e., acts used for the purpose of directing another’s attention to share focus on an object or an event [Bruner, 1981]). Joint attention, in particular, has been singled out as critical for further examination because it forms the foundation for a number of later developing social and linguistic competencies (Carpenter & Tomasello, 2000; Charman et al., 2003; Mundy, Sigman, & Kasari, 2000; Sigman & Ruskin, 1999). Cross-syndrome comparisons of the communicative gesture profile of young children have a number of clinical implications and would provide for a better understanding of the differences and similarities between children with different developmental disabilities. Thus, the purpose of this study was to compare the communicative gesture profiles (i.e., Joint Attention, Requesting—a form of Behavior Regulation, and Social Interaction) of children with different disabilities, as well as typically-developing children, based upon the rate of gesture use occurring during administration of the Early Social Communication Scales (ESCS; Siebert, Hogan & Mundy, 1982). 114 toddlers comprised six groups: Autistic disorder (AD; n = 28),Williams syndrome (WS; n = 14 ), fragile X syndrome without co-morbid autism (FXS; n = 14 ), Down syndrome (DS; n = 18), Developmental Delay of mixed etiology (DD; n = 14 ), and Typically developing (TD; n = 26). All groups were equated on nonverbal mental age (NVMA) as measured by the Mullens Scales of Early Learning (MSEL), though the groups were not equated on verbal mental age (VMA; ASD significantly lowest among clinical groups) or chronological age (TD was significantly younger). Results suggested significant mean group differences in Total Rate of Joint Attention [Kruskal-Wallis H (5, 114) = 28.8, p < .001], such that the AD and WMS groups performed similarly [U (1, 42) = 166, p = .42] and significantly worse than all of the other 4 groups. In terms of rate of requesting behaviors, significant mean group differences in Total Rate of Requesting were also observed [Kruskal-Wallis H (5, 113) = 25.6, p < .001] such that the AD group performed significantly worse on rates of requesting behaviors than 4 other groups (not DS) and TD performed significantly better than DS and FXS. In terms of social interaction behaviors, mean group differences in Total Rate of Social Initiations were noted [Kruskal-Wallis H (5, 103) = 22.4, p < .001] such that the AD group performed significantly worse than all of the other 5 groups in total rate of social initiations. Implications are discussed for language development and treatment, as well as the importance of cross-syndrome comparisons for elucidating early emerging behavioral phenotypes. This research was supported by the NIH (U19 HD35468-07) and the March of Dimes. 137 19. POSTER SESSION 2 Down Syndrome, and Congenital Heart Defect: Maternal Experiences of Bereavement Deirdre Reilly, Frances Vaughan, and Jaci Huws School of Psychology, University of Wales, Bangor. Contact: [email protected] Background: Congenital heart defect (CHD) has been reported in almost 50% of newborns with Down syndrome (Frid et al, 2002). Children with Down syndrome and CHD have been shown to be at higher risk of mortality than children with Down syndrome without CHD. CHD is also one of the most often reported medical disorders on death certificates of adults with Down syndrome, particularly between the ages of 20 and 29 (Yang, Rasmussen, & Friedman, 1999). This study aimed to investigate the bereavement experiences across the life span of mothers who lose a child with Down syndrome and CHD. Method: 31 bereaved mothers of children with Down syndrome and a CHD were recruited through a support group in the UK. Average time since loss was 10.3 years (SD = 6.61: range 1 – 23). Mothers completed measures of grief, coping, anxiety and depression, and a retrospective measure of their positive perceptions of parenting a child with intellectual disability. Results: Overall 56.2 % and 28.2% of mothers scored in the possible or probable range for clinical anxiety or depression disorders respectively, which is high compared to the UK population in general. Revised Grief Experienced Inventory (RGEI) scores were similar to previously reported scores for bereaved parents (M = 74.48; SD = 30.79). Mothers reporting higher levels of grief tended to report more positive perceptions of their experience of raising and losing a child with Down syndrome (r = .511; p = .003). Also mothers with higher grief tended to use more active avoidant (r = .475; p = .006) coping strategies through their bereavement, but use of problem focused coping strategies was not related to grief. Discussion: As in the bereavement literature more generally, avoidant coping seems to be maladaptive in relation to mothers’ grief experiences. The association between current grief and positive perceptions of the child with Down syndrome requires further exploration but may have important implications for supporting parents through bereavement. Key References Yang, Q., Rasmussen, S. A., & Friedman, J. M. (2002). Mortality associated with Down’s syndrome in the USA from 1983 to 1997: a population-based study. The Lancet, 359(9311), 1019-1025. Frid, C., Drott, P., Lundell, B., Rasmussen, F., & Anneren, G. (1999). Mortality in Down Syndrome in relation to congenital malformations. Journal of intellectual disability research, 43(3), 234-241. 138 20. POSTER SESSION 2 Correlations between Locus of Control and Assertiveness and Knowledge of Abuse and Decision-Making Performance among Individuals with Moderate to Severe Disabilities Anne Spillane National University 910 Stratford Court, Del Mar, CA, 92014 Contact: [email protected] Introduction: Individuals with intellectual disabilities (ID) have been shown to be at increased risk for abuse (Sobsey, 1994). The present study investigated correlations between locus of control and assertiveness and knowledge of abuse and decision-making performance in response to interpersonal situations involving abuse among individuals with more severe ID. Method: This study investigated correlations between the locus of control and assertiveness of 40 adolescents with moderate to severe ID, and their knowledge of abuse and decision-making performance in response to interpersonal situations involving abuse. Results: Participants with a more external locus of control were less able to identify situations of abuse and the type of abuse (sexual abuse vs. physical abuse vs. verbal abuse). Participants who were more assertive were more able to identify situations of abuse and the type of abuse (sexual abuse vs. physical abuse vs. verbal abuse). Participants who were more assertive were also more likely to give an independent self-protective response on the multiple choice questions on the self decision-making scale. Discussion: Previous studies have demonstrated that locus of control is linked to attending to information and the environment (Lefcourt, 1976). An external locus of control may have caused these participants to be less attentive to the salient information needed to identify situations of abuse and to differentiate between the types of abuse. Motivational aspects of personality, such as assertiveness, have been discussed as having an influence on the performance of individuals with mental retardation (Zigler, 1999). The correlation found here between assertiveness and knowledge of abuse further strengthens the argument for the connection between motivational and personality factors and performance. Finally, motivational and control factors have been recognized as being an important component of deciding upon a course of action (Kuhl, 1986). Individuals who are more assertive may have the necessary confidence to choose an independent course of action, instead of relying on others to act for them. Key References: Kuhl, J. (1986). Motivation and information processing: A new look at decision making, dynamic change, and action control. In R.M. Sorrentino & E.T. Higgins (Eds.) Handbook of motivation and cognition: Foundations of social behavior. (pp. 404-434). New York: Guilford Press. Lefcourt, H.M. (1976). Locus of Control: Current Trends in Theory and Research. Hillsdale, NJ: Lawrence Erlebaum and Associates. Sobsey, D. (1994). Violence and Abuse in the Lives of People with Disabilities. Baltimore: Paul H. Brookes. Zigler, E. (1999). The individual with mental retardation as a whole person. In E. Zigler & D. BennettGates (Eds.) Personality Development in Individuals with Mental Retardation. Cambridge: Cambridge University Press. 139 21. POSTER SESSION 2 Sibling Relationship Quality for Individuals with Mental Retardation: A Comparison of Sibling Reports Shana Strickland, Vivian Piazza, & Frank J. Floyd Georgia State University Contact: Shana Strickland Georgia State University PO Box 5010 Atlanta, GA 30302 Contact: [email protected] Much of the research examining sibling relationships for individuals with mental retardation (MR) has relied on reports from either the sibling without disabilities or a parent. To date, studies have rarely considered perceptions of the relationship by the individual with MR. In order to better address how sibling relationships might affect individuals with MR, it is important to take into consideration their perceptions of these relationships. Further, most studies have examined sibling relationship quality only in childhood. In order to address these gaps in the research, the present study examined evaluations of sibling relationships by adolescents and young adults with MR, and compared their evaluations to measures of relationship quality completed by the siblings. Participants were 29 adolescents and young adults with mild or moderate MR and their siblings. A target sibling was randomly selected for those participants who had more than one sibling. Individuals with MR ranged from age 14 to 30 years (M = 21.79), and their siblings were aged 13 to 31 years (M = 20.34). The individuals with MR completed the My Family and Friends (Reid & Ramey, 1992) measure during a faceto-face interview, which required them to rate their perceptions of the quality of emotional support from the sibling. Specific items focused on satisfaction with discussing feelings and perceptions of the sibling’s level of understanding. Siblings completed the Sibling Relationship Questionnaire (SRQ, Furman & Buhrmester, 1985), which measured multiple domains of the sibling relationship. To examine similar domains for both siblings’ reports, we focused on the Warmth/Closeness scale of the SRQ, along with the subdomains of this scale. Initial analyses indicated that the individuals with MR generally perceived the quality of emotional support from their siblings positively. For example, on a 6 point scale, all individuals reported that they felt at least “a very little bit better” (rating = 2) after sharing feelings with their siblings. On the SRQ, the siblings rated the relationship highest in the areas of affection and admiration by their brother or sister with MR, and lowest in the areas of similarity and intimacy between the siblings. Correlations revealed that quality of emotional support as rated by the individuals with MR was significantly positively associated with the siblings’ total scores for Warmth/Closeness, and with the subdomains prosocial, affection, and admiration by their brother or sister. However, the evaluations by the individuals with MR were not significantly correlated with the siblings’ ratings of companionship, similarity, intimacy, and admiration by the sibling. Overall, the results revealed that evaluations across siblings were generally consistent regarding several positive aspects of the sibling relationship. However, inconsistencies that occurred might emerge from the asymmetrical nature of these relationships with, for instance, highly supportive siblings unlikely to perceive reciprocity in terms of high levels of companionship, similarity, or intimacy in the relationship. Also, relatively low levels of similarity and intimacy might be a function of the ages of the siblings, wherein a general decline in contact typically is seen in adolescence and young adulthood. Thus, the results highlight the importance of re-interpreting certain relationship constructs when working with individuals with MR. 140 22. POSTER SESSION 2 Examining Contingency Control Deficits in Children with and without Autism Louis P. Hagopian; The Johns Hopkins University School of Medicine Lisa M. Toole; Kennedy Krieger Institute and University of Maryland, Baltimore County Eric Boelter; Kennedy Krieger Institute Heather K. Jennett; Kennedy Krieger Institute Gregory A. Lieving; West Virginia University Institute of Technology Keith J. MacWhorter; Kennedy Krieger Institute Elizabeth L. Tobin; Towson University Autism is characterized by deficits in communication and social skills, and restricted, repetitive, and stereotyped behavior patterns (DSM-IV, 1994). These deficits can be conceptualized in terms of global deficits in contingency control, defined broadly as the ability to adapt and change behavior in accordance with contingencies. Deficits in contingency control would result in the persistence of behavior after it is no longer functional; decreased adaptability of behavior to new environments or changes in familiar environments; and patterns of behavior that show little variation in form and may be repetitive or stereotypic. In the current studies, we sought to examine the phenomena of behavioral sensitivity related to contingency control, specifically, persistence of responding and decreased behavioral variability in both topography of response and rate. In the first study, participants earned brief access to reinforcement for responding on a touch-screen monitor. In the response acquisition phase, stimuli were present on the screen and reinforcement was available contingent on a 3-touch sequence. In the extinction phase, no reinforcement was provided for responding, and sessions were conducted until responding was at a rate of less than 1 response per minute or until 12 sessions had been conducted. Preliminary results suggest that responding by the participants with autism is characterized by greater resistance to extinction when compared to control children (i.e., participants without a diagnosis of autism). In the second study, we compared average break points and overall local response rate of responding on progressive ratio schedules. Again, participants earned brief access to reinforcement for responding on a touch-screen monitor. During the Progressive Ratio Phase, response requirements were systematically increased until termination criteria were met. Preliminary results suggest that participants with autism exhibited greater persistence, characterized by slower, steady rates with shorter post-reinforcement pauses and higher break points. CONTACT INFORMATION: Lisa M. Toole, M.A., BCBA Kennedy Krieger Institute 707 N. Broadway Baltimore, MD 21205 [email protected] 141 23. POSTER SESSION 2 Understanding of the Causes of Emotions in Others by Children with Down’s Syndrome K.R. Williams1, J.G. Wishart1, D.S. Willis2, & T.K. Pitcairn1 1 University of Edinburgh; 2 Napier University Katie Williams Moray House School of Education University of Edinburgh, Holyrood Road Edinburgh EH8 8AQ, Scotland, UK [email protected] Introduction: Previous research has suggested that some children with Down’s syndrome experience difficulties in recognition of emotional expressions (Kasari, Freeman, & Hughes, 2001; Williams et al., 2005; Wishart & Pitcairn, 2000), but relatively little work has explored their emotional understanding more broadly. This study investigated children’s understanding of the causes of emotions in others, using a cartoon task that controlled for story-comprehension ability and general task demands by comparing children’s ability to identify the antecedents of physical events versus emotional events. Methods: Three child groups matched on mental age participated in this study: 21 children with Down’s syndrome and 21 with non-specific intellectual disability aged 9 – 19 years, plus 21 typically developing children aged 3 – 6 years. The groups did not differ significantly on language comprehension or emotion labelling ability. Children were given 20 three-part cartoon stories: 4 depicted physical events, 8 depicted emotions caused by a physical action, and 8 depicted emotions caused by a person. The emotions included were happiness, sadness, surprise and fear. For each story the first and last picture were presented and the children asked to select the correct middle picture from a choice of three. Children were then asked to tell the story. Results: Groups did not differ significantly in their ability to select the correct antecedents in any condition. However, analysis of individual emotions suggested that the children with Down’s syndrome had somewhat more difficulty than the typically developing children in identifying antecedents to expressions of fear. Ongoing analysis of the content of children’s stories may reveal further subtle differences in their understanding of emotion causality. Discussion: Findings from this study support previous research that has suggested that emotional understanding may be an area of difficulty for some children with Down’s syndrome. However, these difficulties may be very subtle and detectable only in comparison with typically developing children, presenting challenges both to theories of emotion recognition and behaviour phenotype theory. Key references: Kasari, C., Freeman, S.F.N., & Hughes, M.A. (2001). Emotion recognition by children with Down syndrome. American Journal on Mental Retardation, 106, 59-72. Williams, K.R., Wishart, J.G., Pitcairn, T.K., & Willis, D.S. (2005). Emotion recognition by children with Down syndrome: investigation of specific impairments and error patterns. American Journal on Mental Retardation, 110, 378-392. Wishart, J. G. & Pitcairn, T. K. (2000). Recognition of identity and expression in faces by children with Down syndrome. American Journal on Mental Retardation, 105, 466–479. 142 24. POSTER SESSION 2 Imitation in Young Children with Autism and Other Developmental Delays Connie S. Wong Cleveland State University, College of Education and Human Services 2121 Euclid Avenue, Rhodes Tower 1325 Cleveland, OH 44115-2214 [email protected] Young children with autism have difficulty imitating other people’s actions. Impairments in imitation ability could negatively affect children’s social-emotional development, a specific area of concern for children with autism. Research is ongoing to determine the mechanism or deficit underlying imitation performance in children with autism. The objective of this study was to explore child characteristics and behaviors that may influence children’s performance on imitation tasks. Fifty-five children were recruited from a suburban special-education public preschool. In this study, participants were analyzed in two groups: children with a clinical diagnosis of autism (N=27) and children with other developmental delays (N=28). The children ranged in age from three to five years old and their mental ages ranged from 18 to 59 months. Child characteristics and demographics were not significantly different between the two groups. In this study, children were assessed using nine items from the Imitation Battery (Rogers, Hepburn, Stackhouse, & Wehner, 2003), which included 3 manual acts, 3 actions on objects, and 3 oral-facial movements. Additionally, children were also assessed on measures of joint attention and symbolic play. Consistent with existing research, results indicate that compared to children with other developmental delays, children with autism completed fewer imitation tasks correctly. However, a closer examination of child characteristics using analysis of variance procedures showed significant main effects of developmental scores as well as a significant interaction effect between disability group and developmental scores. While children with higher mental and language ages generally completed more imitation tasks successfully than children with lower developmental abilities, children with autism showed a much greater disparity. Whereas children with higher developmental scores in both groups performed at similar levels, children with lower developmental scores in the autism group failed significantly more imitation tasks than those children with other developmental delays. In addition, while preliminary results did not find significant groups differences in reversal errors and errors of style, results did indicate that children with autism were less engaged with the experimenter and displayed fewer coordinated joint looks than the children with other developmental delays during the imitation battery. Finally, performance on the imitation tasks was not related to other measures of joint attention or symbolic play. These findings suggest the importance of cognitive and language abilities in the development of imitation skills. Rogers, S.J., Hepburn, S.L., Stackhouse, T., & Wehner, E. (2003). Imitation performance in toddlers with autism and those with other developmental disorders. Journal of Child Psychology and Psychiatry, 44, 763-781. Williams, J.H.G., Whiten, A., & Singh, T. (2004). A systematic review of action imitation in autistic spectrum disorder. Journal of Autism and Developmental Disorders, 34, 285-299. 143 25. The Relationship Among Vocabulary Knowledge, Phonological Awareness, and Reading Performance in Children with Mild Intellectual Disabilities Rose A. Sevcik, Justin C. Wise and Robin D. Morris Georgia State University, Dept. of Psychology, PO Box 5010, Atlanta, GA 30302-5010 [email protected] Limited research exists concerning the literacy skills of children with intellectual disabilities. Children with intellectual disabilities primarily have been taught to read through sight words since it has been assumed that individuals with intellectual difficulties can not benefit from phonemic instruction due to limited cognitive skills and associated language difficulties. Recent studies, however, suggest that phonological awareness is related to reading performance (e.g., Gombert, 2002; Snowling, Hulme, & Mercer, 2002) and that they can benefit from phonics-based literacy instruction (e.g., Cupples & Iaocono, 2002). In our program of research, a multidimensional theoretical model of developmental reading processes has been used to identify critical instructional components (decoding, fluency, and text comprehension) needed to acquire reading skills. These instructional programs are based on converging evidence, from a range of learners, that early reading incorporates two areas of linguistic skill: phonological awareness and naming retrieval/access speed (Wolf & Bowers, 1999). The impact of the reading programs on both early developing reading skills (e.g., phonological awareness, word decoding) and the development of fluency and comprehension skills, along with other related language skills are examined. Using a randomized experimental design, reading instruction was delivered in small groups (n=4) taught by highly experienced teachers. In this poster, the relationships between vocabulary knowledge, phonological awareness skills, and word and nonword identification performance are examined. Data reported here are from the baseline time point collected during the first year of the project. Forty-seven students classified by their school district as eligible for services for students with mild intellectual disabilities participated. The sample consisted of 30 male and 17 female students with an ethnic representation of 24 Caucasian, 16 African American, 4 Hispanic, and 3 Asian students. Their mean language age in months assessed by the PPVT-III was 66.09 (range = 21-119), and their mean chronological age in months was 112.57 (range = 84-142). The etiology of the intellectual impairments evidenced by these students was very heterogeneous and included Down syndrome, Fragile X syndrome, and etiology unknown. Prior to receiving instruction, students were administered a comprehensive battery of linguistic and reading-related measures. Student performance on measures of receptive and expressive vocabulary, measures of phonological awareness, and measures of word and nonword identification were included for these analyses. For all analyses, raw scores were used to avoid floor effects and to increase variability among scores. Partial correlation analyses controlling for age indicated that measures of phonological awareness correlated significantly (p < .05) with measures of word (r = .38-.63) and nonword (r = .40-.45) identification. With respect to vocabulary knowledge, the only significant correlation was between receptive vocabulary knowledge and word identification performance, r = .38, p < .05). Hierarchical regression analyses indicated that after controlling for age and vocabulary knowledge, the ability to blend phonemes to produce a word accounted for a large and significant amount of unique variance of both word (47%), F (1,42) = 16.27, p < .001, and non word (26%), F(1,42) = 7.53, p < .01, identification. Results of these analyses suggest that phonological awareness skills are significantly correlated with reading performance for children with intellectual disabilities. Further, hierarchical regression analyses indicated that this group of children relied heavily on phonological awareness skills for the purpose of word and nonword identification. Implications of this study are that children with mild intellectual disabilities can learn to read similarly to typical children and suggest that these children can benefit from phonics-based literacy instruction. 144 S y m p o s i u m 10 S Y M P O S I U M 10 Individual Differences in Adaptation in Parents and Siblings of Children with ID – Process Mechanisms and Implications for Support Chair: Malin B. Olsson Department of Psychology, Goteborg University 145 SYMPOSIUM 10 Individual Differences in Adaptation in Parents and Siblings of Children with ID – Process Mechanisms and Implications for Support Chair: Malin B Olsson, Ph.D. Department of Psychology, Goteborg University Longitudinal Perspectives on Sibling Impact: The Role of Clinical Behavior Problems Jan Blacher & Cameron Neece, UCLA, Graduate School of Education University of California Acceptance as a Longitudinal Predictor of Stress, Anxiety and Depression in Mothers of Children with Intellectual Disabilities Tracey Lloyd & Richard Hastings University of Wales Bangor Family Process in Families of Young Children with Intellectual Disabilities: Depression and Inter-Parental Conflict Zolinda Stoneman Institute on Human Development and Disability/UCEDD,University of Georgia The Impact of Psychological Variables on Well-Being of Parents of Children with ID Malin B. Olsson Department of Psychology, Goteborg University 146 SYMPOSIUM 10 Longitudinal Perspectives on Sibling iImpact: The Role of Clinical Behavior Problems Jan Blacher (Graduate School of Education, UC Riverside) [email protected] Cameron Neece (Dept. of Psychology, UCLA) Los Angeles, CA 90095 Introduction: The study of siblings of children with developmental disabilities (DD) is fraught with layers of complexity. Methodological and conceptual issues not withstanding, (Hodapp, Glidden, & Kaiser, 2005; Stoneman, 2005), there are opportunities for examining the impact of a child with DD from a number of perspectives. This study involves both mother and father reports, taken longitudinally, of sibling impact. Specifically, we were interested in parent perceptions of sibling impact (when the target child was DD or typically developing, TD), when controlling for concomitant target child behavior problems, and when considered over time. Method: We followed n=98 children with borderline to moderate intellectual disability (ID) and n=144 typically developing children (TD) from child age 3 to 5 years. Overall, the child sample was 57% boys and 61% Caucasian. The parent sample was 86% married and 51% of mothers and fathers were college graduates. The SES variable, mother’s education, was lower in the ID group, so this was co-varied in all status group comparisons. At child ages 3, 4, and 5 both mothers and fathers completed two measures of interest in this study: the Family Impact Questionnaire, FIQ (Donenberg & Baker, 1993) to assess stress, and the Child Behavior Checklist, CBCL (Achenbach, 2001) to assess the extent and clinical nature of child behavior problems. There are six subscales of the FIQ, but for this study the focus was on the impact of the target child on non-disabled siblings. Results: First, we looked at parental ratings of sibling impact at age 3. In all cases, both mothers and fathers of children with DD rated siblings as experiencing higher negative impact than did parents of TD target children. Second, we examined the sibling impact score across ages 3, 4 and 5 (in a repeated measures ANOVA), with a significant status group difference. The ANOVA revealed no significant time effect, indicating that this phenomenon is stable. There was a significant effect of the covariate (mother’s grade in school); mothers with a higher education level perceived less negative impact. The same status group effect was reported by fathers; however, there was no effect of the continuous covariate of grade in school for fathers. Third, in another repeated measures ANOVA using mother data, with between subject factors child status (TD or DD) and behavior problems (clinical or not), status group differences were no longer significant; there was no time effect. There was a highly significant behavior problems effect and a significant status by behavior problem interaction. An examination of means revealed that the lowest mean at each timepoint was for the TD children with non-clinical problems (as expected). However, the highest mean at each timepoint was for the TD children with clinical behavior problems – higher than for the children with ID and behavior problems! In other words, the presence or absence of serious behavior problems made more of a difference in TD families. Discussion: Results reported here support earlier reports from this project (see Baker et al, 2002, 2003) that implicate child behavior problems as having more negative impact on families than the designation of developmental delay per se. In this study, we examined the impact of the target child (ID or TD) on nondisabled siblings, and again, when controlling for clinical level behavior problems, status group differences disappear. These findings have implications for those studying stress in families of specific syndrome groups, as the presence or absence of clinically significant behavior problems are likely to have greater negative impact than syndrome designation per se. Fortunately for family stress levels, many behavior problems – regardless of etiology — are amendable to intervention. 147 SYMPOSIUM 10 Acceptance as a Longitudinal Predictor of Stress, Anxiety and Depression in Mothers of Children with Intellectual Disabilities Tracey Lloyd and Richard P. Hastings University of Wales, Bangor Contact: Tracey Lloyd, University of Wales Bangor, Brigantia Building, Penrallt Road, Bangor, Gwynedd, UK, LL57 2DG. [email protected] Introduction: As with psychological process variables generally, there has been little research on psychological acceptance as a predictor of adjustment in family members of people with intellectual disabilities. In cross-sectional research, we showed previously that acceptance was a significant predictor of maternal anxiety and depression, and marginally of stress. In the present paper, we explore data addressing these relationships over time. Methods: Fifty seven mothers of children attending special schools completed questionnaire surveys 18 months apart. Data were gathered using the Acceptance and Action Questionnaire (AAQ) to measure acceptance of unwanted thoughts/feelings, the Hospital Anxiety and Depression Scale (HADS) measuring mental health symptoms and the Questionnaire on Resources and Stress (Short Form) (QRS-F) as an overall measure of family stress. Results: Acceptance was found to be modestly stable over 18 months (r = .603). For anxiety, the change over 18 months in acceptance predicted Time 2 scores after Time 1 scores were controlled. A similar pattern of results was found for the prediction of depression at Time 2. For anxiety and depression, change in these variables over time also predicted Time 2 acceptance after controlling Time 1 acceptance. After controlling for other variables (notably, child behaviour problems), stress and acceptance were not related over time. Discussion: These data suggest a bidirectional relationship over time between acceptance and mental health symptoms in mothers of children with intellectual disabilities. Interventions that directly address acceptance as a process variable (e.g. Acceptance and Commitment Therapy) may be useful in the support of parents with a child with intellectual disabilities. 148 SYMPOSIUM 10 Family Process in Families of Young Children with Intellectual Disabilities: Depression and Inter-Parental Conflict Zolinda Stoneman, Institute on Human Development and Disability/UCEDD, University of Georgia, 850 College Station Rd., Athens, GA, 30602 [email protected] It is important to understand the processes that lead to wellness or compromised functioning within families. This study examined the associations between depression in mothers and fathers of young children with intellectual disabilities and inter-parental conflict. It was hypothesized that for both mothers and fathers, elevated levels of self-reported depression would be associated with economic stress and inter-parental conflict and that the negative influences of these variables would be buffered by the presence of satisfying social support. Forty-five married couples participated in the study. Families had one child with an intellectual disability between the ages of 2 and 6 years who was living at home. Approximately half of the children were male and half female. Slightly less than half of the children had Down syndrome. Families were 80% EuroAmerican and 20% African-American. Families were recruited from early intervention programs and parent organizations. Mothers and fathers independently completed a demographic information form, the Center for Epidemiologic Studies Depression Scale (CES-D), the O’Leary-Porter Inter-Parental Conflict Scale, and the Dunst Family Support Scale which measures satisfaction with various sources of social support. Initial analyses were conducted to examine demographic predictors of parent depression. For mothers, depression was correlated with less family income and lower maternal education. For fathers, depression was related to lower family income. Child competence measures (obtained from the Battelle) were unrelated to depression in either parent. There were positive correlations between mothers’ and fathers’ reports of depression, inter-parental conflict, and satisfaction with social support. Paired samples t-tests revealed no differences between mothers and fathers on their reports of depression, conflict, or social support. The study hypotheses were tested using hierarchical regression models. For mothers, lower incomes and higher levels of inter-parental conflict predicted heightened levels of depression. For fathers, lower income was the only predictor of self-reported depression. Satisfaction with social support did not evidence the expected buffering effect. The pattern of findings was quite different for mothers and fathers. Discussion of study findings will focus on the importance of parent gender in family research. 149 SYMPOSIUM 10 The Impact of Psychological Variables on Well-Being of Parents of Children with ID Malin B Olsson Department of Psychology, Goteborg University, Box 500, 405 30, Göteborg, SWEDEN, e-mail: [email protected] Several studies have reported that mothers of children with ID are more likely to show signs of psychological distress than mothers of children without ID (Olsson & Hwang, 2001). But the individual variation is substantial; more than 50% of the parents of children with ID show no signs of depression. Since most studies have only measured the negative end of the well-being continuum (depression or stress) we know very little about factors that differentiate parents who experience poor well-being from those who experience positive well-being. The present study investigated the relation between psychological differences in parents (adult attachment style, sense of coherence and perceived control) and parental variations in well-being. Methods: The participants were approximately 75 families of children with ID (approximately 75 mothers and 50 fathers).The children were from 0 to 6 years of age, and had been identified as having ID during the last six months. The mean child age was 3 years and 3 months, a majority was boys. Measures: Well-being BDI-2r (which actually is BDI with 3 positive alternatives added to each of the 21items (Chow & Brenton,2000). Socioeconomic situation Hardship questionnaire (12 items adapted after Emerson at al., 2004). Income more than 2000 € / month Child characteristics Development (5 items rated in relation to peers) Behavior problems (SDQ (15 selected items), Goodman, 1999) & Nisonger scale (10 selected i tems)(Aman, Tassé, Rojhn & Hammer, 1995) Psychological factors Perceived parental control (11 items, Hagekull & Bohlin, 2002) Sense of coherence, short form (13 items, Antonovsky, 1987) The Relationship Questionnaire (RQ) (Bartholomew & Horowitz, 1991) Results: Preliminary results suggest that high and low risk parents (in terms of child behavior problems and SES) differ in level of well-being and that psychological factors (in terms of SoC, secure adult attachment style and perceived control) mediate the relationship. Discussion: No single variable can explain the variance in well-being, well-being is dependant on the complex interplay of risk and protective factors. In clinical work we need to work toward diminishing the risk factors and boosting the protective factors. Key References: Antonovsky, A. (1987) Unraveling the mystery of health. How people mange stress and stay well. San Fransisco, Cal. Jossey-Bass Bartholomew, K. & Horowitz, L. M. (1991). Attachment styles among young adults: A test of a four-category model. Journal of Personality and Social Psychology, 61, 226-244. 150 S y m p o s i u m 11 S Y M P O S I U M 11 Phenotypic Responses to Communication Intervention by Young Children with Down Syndrome Chair: Steven F. Warren Institute for Life Span Studies, University of Kansas Discussant: Len Abbeduto Waisman Center, University of Wisconsin-Madison 151 SYMPOSIUM 11 Phenotypic Responses to Communication Intervention by Young Children with Down Syndrome Chair: Steven F. Warren Institute for Life Span Studies, University of Kansas Discussant: Len Abbeduto Waisman Center, University of Wisconsin-Madison Treatment (non)Effects and Predictors of Communication and Language Development in Children with Down Syndrome Paul J. Yoder1 and Steven F. Warren2 1 John F. Kennedy Center for Human Development, Vanderbilt University 2 Institute for Life Span Studies, University of Kansas, Lawrence Response by Children with Down Syndrome to Prelinguistic Milieu Teaching Nancy C. Brady1, Steven F. Warren1, Marc E. Fey2 Lizbeth H. Finestack2, Shelley L. Bredin-Oja2, & Kandace K. Fleming1 1 Institute for Life Span Studies, University of Kansas, Lawrence 2 University of Kansas Medical Center, Kansas City, KS Effects of Early Augmented Language Intervention on the Communication Skills of Young Children with and without Down Syndrome Mary Ann Romski, Rose A. Sevcik, Lauren B. Adamson, Melissa Cheslock, Ashlyn Smith, Mike Barker, and Roger Bakeman Georgia State University, Atlanta, GA 152 SYMPOSIUM 11 Treatment (non)Effects and Predictors of Communication and Language Development in Children with Down Syndrome. Paul J. Yoder1 and Steven F. Warren2 Vanderbilt University, Peabody 328, Nashville, TN 37203, [email protected] 2 Life Span Institute, 1000 Sunnyside Dr., Rm. 1052, Lawrence, KS. 66045-7555 1 Introduction: It is important to maximize the developmental trajectories of children with intellectual disabilities. Understanding the sources of variance in these trajectories may eventually improve our ability to do so. The goal of this presentation is to shed light on the sources of variance in the growth of communication and language in children with Down syndrome (DS) in response to intervention. Methods: This presentation is focused on the results of two sets of analyses from a study of 39 initially prelinguistic toddlers with intellectual disabilities and their parents. Seventeen of these children had DS. The first set of analyses utilized a randomized group experiment (treatment vs control) with extensive pretreatment measurement of parent-child and child characteristics, one of which was etiology (DS vs mixed etiology). The treatment of interest was Responsive Education and Prelinguistic Milieu Teaching (RE/ PMT). The key outcome of interest was frequency child-initiated requests in semi-structured parent-child sessions. The second set of analyses utilizes a longitudinal correlational design to identify the unique predictors of later language development in children with and without DS matched on IQ, age, and vocabulary level at Time 1. In these analyses, “Time 1” is used to identify measures derived immediately after the treatment phase ended. The “Time 2” language outcome was lexical density (number of different words used in a communication sample) and was measured 6 months after the treatment phase had been completed. The treatment group assignment did not affect which Time 1 predictors accounted for variance in later language. Time 1 predictors of later language were identified after controlling for Time 1 language. Etiology main effects and etiology by Time 1 predictor interactions predicting later language were also tested. Key Time 1 predictors were frequency of prelinguistic comments, frequency of vocal communication with consonants, frequency of parental optimal responding (vocal imitation, linguistic mapping, and compliance). Results: The findings of the first set of analyses indicated that RE/PMT affected frequency of requesting in children without DS, but did not do so in children with DS. To our knowledge, this is the only demonstration that DS, per se, affected the efficacy of a communication treatment. The results of the second set of analyses indicated that children DS had much lower language levels (d = 1.46) and much less variance in language than matched children without DS. Optimal parental responsivity predicted later lexical density, regardless of etiology (R square change = .20). Frequency of vocal communication with consonants (R square change for product term = .18) and frequency of commenting (R square change for product term = .12) predicted later lexical density only in children without DS. Discussion: The results support the conclusion that children with DS have unique problems acquiring language and responding to some language intervention techniques. The presentation offers speculations as to why young children with DS did not respond to RE/PMT in a manner similar to other children with developmental delays. This research was supported by NICHD grants R01 HD34520 and P30 HD15052 153 SYMPOSIUM 11 Response by Children with Down Syndrome to Prelinguistic Milieu Teaching Nancy C. Brady1, Steven F. Warren1, Marc E. Fey2, Lizbeth H. Finestack2, Shelley L. Bredin-Oja2, & Kandace K. Fleming1 1 Life Span Institute, 1000 Sunnyside Ave, Rm. 1052, Lawrence, KS. 66045 2 University of Kansas Medical Center, Kansas City, KS. Introduction: Prelinguistic milieu teaching is a well-researched intervention that has been implemented with children with a variety of developmental delays, including Down syndrome (DS). Child communication targets include prelinguistic forms such as gestures and non-word vocalizations that are clearly directed to a partner and are used to request, comment and initiate social interactions. To optimize the effects of this intervention, parents and other caregivers are taught ways to support and respond to child communication attempts. The resulting intervention has been termed RE/PMT. Methods: Fifty-one children with developmental disabilities, age 24-33 months, with no more than 10 expressive words or signs, were randomly assigned to treatment/no treatment group. Thirteen children in each group had DS. The intervention component lasted six months. During this time, parents received 8 individual one-hour lessons on responsive interaction strategies, and children received PMT in their homes or classrooms 4 days per week, in 20 minute sessions. Based on earlier findings of Yoder and Warren (2002) PMT procedures were modified to make them more effective with the children with DS. These changes included limiting the use of certain kinds of prompts. Teachers observed that the children with DS, in particular, were not likely to respond to prompts such as “show me” or “tell me,” or “do this.” Therefore interventionists paused and waited for responses, provided full models if the response was not demonstrated during this pause, and then went on with the activity. In addition, teachers initially accepted approximations of target responses. Breaking down the target response into producible components and decreased use of demanding prompts were the main changes made to RE/PMT during this study. Results: Child and parent communication responses were measured before intervention and at 3 subsequent observation sessions conducted at 6-month intervals. After 6 months, children in the intervention group produced significantly more communication acts than children that did not receive RE/ PMT. This effect was significant for both children with and without DS. However, this effect did not maintain after treatment was discontinued. Furthermore, over time, children with DS showed relatively slow growth in a number of communication variables, notably the number of different words produced, regardless of whether they had participated in the RE/PMT intervention. Discussion. The finding of significantly increased communication rates in response the modified version of RE/PMT was encouraging. However, the lack of longitudinal effects indicates the need for further research aimed at determining the necessary levels of intervention intensity and duration to achieve long term growth. This research was supported by USDE grant # H324CC990091 and NICHD P30-02528. 154 SYMPOSIUM 11 Effects of Early Augmented Language Intervention on the Communication Skills of Young Children with and without Down Syndrome Mary Ann Romski1,2, Rose A. Sevcik,2, Lauren B. Adamson,2, Melissa Cheslock,1, Ashlyn Smith,2, Mike Barker,2, and Roger Bakeman,2 Depts. of Communication,1 and Psychology,2, PO Box 4000, Georgia State University, Atlanta, Georgia 30302-4000, Contact: [email protected] Introduction: The ability of young children with significant developmental disabilities to acquire and use language to control and to interact in their worlds is compromised significantly by their overwhelming lack of speech production abilities. Early augmented language experiences that include speech generating communication devices may facilitate communication development, prevent the emergence of challenging behaviors, and facilitate social interactions with adults and peers. Little is known about the communication development of toddlers with significant developmental delays with and without Down syndrome who receive augmented language experience. In this presentation, we compare the effects of two parentimplemented augmented language interventions with a parent-implemented spoken language intervention on the communication development of 18 children with Down syndrome and 42 children with other developmental disabilities and significant delays in spoken language abilities. Methods: The 60 toddlers ranged in age from 24 to 35 months (mean CA = 29.33 months) and evidenced a significant expressive speech-language impairment operationally defined as an intentional communicator but with less than 10 spoken words at the onset of the study. The majority of the children (80%) also evidenced significant developmental delay defined as performance below the 1st percentile on the Mullen Scales of Early Learning (Mullen, 1995). Participants were randomly assigned to one of three parentimplemented communication interventions: Spoken Communication Interaction (SCI), Augmented Communication Input (ACI), or Augmented Communication Output (ACO). All three interventions were 12 weeks in length and focused on parent implementation of the intervention protocol first in the lab setting and then at home. Children were assessed at pre- and post-intervention on a set of standardized and experimental language and communication development measures. The children with Down syndrome were distributed across the three intervention groups. Results and Discussion: Young children with significant developmental disabilities learned to communicate better with their parents in each of the three parent-implemented interventions than they did at the start of the intervention. Both augmented language interventions, ACI and ACO, provided a way for the children to communicate via visual-graphic symbols + digitized words after only 9 weeks of intervention. Compared to the SCI intervention, ACO, and to a lesser extent ACI, significantly increased the likelihood that children could produce spoken words for the target vocabulary after 9 weeks of parentimplemented intervention. Children with Down syndrome showed comparable symbol and word use to the children without Down syndrome. Findings will be discussed with respect to the role augmented language interventions can play in early language development of children with DS. This research was supported by DC-03799 from the NIDCD. 155 S y m p o s i u m 12 S Y M P O S I U M 12 What Large-Scale, Administrative Databases Can Tell Us about Down Syndrome Chair: Robert M. Hodapp, PhD Vanderbilt Kennedy Center for Research on Human Development, Department of Special Education, Peabody College, Vanderbilt University 156 SYMPOSIUM 12 What Large-Scale, Administrative Databases Can Tell Us about Down Syndrome Chair: Robert M. Hodapp Vanderbilt Kennedy Center for Research on Human Development Department of Special Education, Peabody College, Vanderbilt University Using State Administrative Databases to Study Down Syndrome Richard C. Urbano Vanderbilt Kennedy Center for Research on Human Development Department of Pediatrics, Vanderbilt University Medical Center The Demography of Births in Down Syndrome Robert M. Hodapp Vanderbilt Kennedy Center for Research on Human Development Department of Special Education, Peabody College, Vanderbilt University Down Syndrome and Adverse Birth Outcomes S. Trent Rosenbloom Vanderbilt Kennedy Center for Research on Human Development Department of Biomedical Informatics Propensity Scores: A Method for Matching on Multiple Variables in Down Syndrome Jennifer U. Blackford Vanderbilt Kennedy Center for Research on Human Development Department of Psychiatry, Vanderbilt University Medical Center Supported by NICHD grants P30HD 15052 and RO3HD 050468 (Hodapp & Urbano) and K22LM 08376 (Rosenbloom), as well as a Greenfield Discovery Grant from the Kennedy Center’s Nicholas Hobbs Society (Hodapp). 157 SYMPOSIUM 12 Using State Administrative Databases to Study Down Syndrome Richard C. Urbano Vanderbilt Kennedy Center for Research on Human Development Department of Pediatrics, Vanderbilt University Medical Center Down syndrome is the most frequently occurring genetic syndrome, occurring in 1/800 to 1/1000 live births. In Tennessee (5.8 million residents; 80,000 births per year), one would expect about 80-100 births a year with a diagnosis of Down syndrome. Thus, statewide birth cohorts covering multiple years are needed to obtain adequate samples. State-level vital records provide a valuable resource for finding individuals with Down syndrome. For conditions identified at birth, like Down syndrome, state birth vital statistics datasets are particularly useful. Beyond identifying a population of such individuals, administrative records may be linked to create comprehensive, multidimensional person-profiles. Person-profiles may contain information from multiple sources for a single period (e.g., events surrounding birth or death) or information from multiple observations over time (multiple hospitalizations of the same person). Person profiles may also be linked to create family groups. Method: In Tennessee, official, electronic Birth Records contain congenital anomalies identified at birth, multiple individual identifiers of the child and parents, and comprehensive pregnancy, delivery, health and demographic variables, for birth cohorts from 1990. Divorce records, also from 1990, were used to examine the amount and correlates of divorce in families of children with Down syndrome. Our Down syndrome research group has created several analysis datasets with person and family profiles. Family divorce status was added to birth records by linking state divorce records to birth records to study divorce in Down syndrome. Family groups were created by linking births to the same mother, allowing the calculation of family level variables (e.g., # of boys, # of girls, boys/girls older/younger than the child with Down syndrome). Each individual’s Hospital Discharge Records (originally one record per admission) were linked together to create person-based hospitalization histories. Results: From the congenital anomalies codes in the 1990-2002 Birth Records, we identified 550 children with Down syndrome. In addition to the electronic birth records, the state maintains electronic records of all inpatient and outpatient hospitalizations in Tennessee from 1996. Using individual identifiers in birth and hospital discharge records, we were able to link birth and hospitalization data to identify an additional 368 births with an ICD-9 code of 758.0 (Down syndrome) in one or more hospital records. Given the rate of Down syndrome, we would expect to find 1056 (1/1000) to 1320 (1/800) individuals. The 918 identified individuals are 70% to 87% of the expected numbers. Additional studies linked multiple Hospital Discharge Records of persons with Down syndrome; we are currently linking Birth Records to Hospital Discharge Records and Birth & Hospital Discharge records to Vanderbilt electronic health records. Conclusion: Large-scale administrative databases have historically been under-utilized in studies of Down syndrome. Using such databases, we are beginning to examine a host of family, medical, and other issues in this population. 158 SYMPOSIUM 12 The Demography of Births in Down Syndrome Robert M. Hodapp Vanderbilt Kennedy Center for Research on Human Development Department of Special Education, Peabody College, Vanderbilt University Most professionals know two facts about Down syndrome. First, Down syndrome occurs proportionally more often to older mothers. Second, like most genetic disorders, Down syndrome equally affects births to mothers in all races and educational levels. In this talk, Dr. Hodapp uses Tennessee Birth Records to explore the implications of these two, somewhat contradictory, facts. He explores the common finding that, compared to families of children with other disorders, families of children with Down syndrome are more often White, more well-educated, and of higher SES. Method: This study utilizes linked Birth Records (1990-2002) and Hospital Discharge Records (19962003) to identify 918 newborns with Down syndrome in Tennessee. These infants were compared to 1,054,723 additional “Tennessee population” infants. Official Birth Records contain 140 pieces of information, including the mother’s name, social security number, age, race, highest level of education, and exact residence. Hospital Discharge Records were used to “track backward” those infants not found in the official Birth Records (= 40% of all DS births). Our identification rates (0.087%) equaled from 70% to 87% of the 1/1000 to 1/800 incidence rate for Down syndrome. Results: Across the population, fewer births occurred to mothers aged 35 to 39 (7.3%) and 40 and above (1.4%); higher rates occurred for mothers below 20 (15.3%), 20 to 24 (30.3%), 25 to 29 (27.9%), and 30 to 34 (18.5%). Maternal age and education levels are also highly correlated (r = .48, p < .0001). Compared to White mothers, African-American mothers gave birth at younger ages (X = 24.25 vs. 26.22 years; t = 143, p < .0001) and averaged fewer years of formal education (12.13 vs. 12.78, t = 141, p < .0001). Combining these findings, it becomes clear why studies find that mothers of children with Down syndrome are older, more educated, and more likely to be White. Of all Down syndrome births, proportionally more occurred to mothers aged 35 to 39 (19.4% vs. 7.3% in the population) and aged 40 and above (12.2% vs. 1.4%). In contrast, fewer Down syndrome births occurred to women below 20 (9.6% vs. 15.3%) and from 20 to 24 (19.0% vs. 30.3%), x2= 1,043, p < .0001. Given the correlation of maternal age and education, mothers of newborns with Down syndrome were more educated. Over one-quarter (25.3%) had BA’s or beyond, compared to 18.4% of mothers in the general population. Conversely, whereas 22.7% of population mothers had not finished high school, only 17.3% of mothers of newborns with Down syndrome were not high-school graduates, x2= 37.75, p < .0001. Racial disparities also occur in Down syndrome births. Births to White mothers comprised 76.5% of all TN population births, 82.8% of all Down syndrome births. In contrast, African-American mothers accounted for 21.9% of population births, 15.8% of Down syndrome births, x2= 20.63, p < .0001. Considering all Down syndrome births in the African-American group, 41.3% were to mothers aged 24 and younger. Conclusion: Beyond explaining the “noise” of family studies, population-based data help describe the Down syndrome population for policy and intervention purposes. 159 SYMPOSIUM 12 Down Syndrome and Adverse Birth Outcomes S. Trent Rosenbloom Vanderbilt Kennedy Center for Research on Human Development Department of Biomedical Informatics Although infant mortality in the syndrome has definitely decreased over time, Down syndrome continues to predispose newborns to a variety of adverse birth outcomes. In this study, we examined whether newborns with Down syndrome have different rates of low birth weight, prematurity, small for gestational age, and infant mortality than the general population of newborn infants, and evaluated whether demographic and prenatal practice variables were associated with these adverse birth outcomes. Method. This study employed a retrospective analysis of Tennessee Birth Records from 1990 through 2002, which includes all infants born in the state of Tennessee. Infants with Down syndrome were identified using birth records and hospital discharge records (available from 1996 through 2003) of all hospitalizations in the state. Birth records include information about the newborn (birth weight, estimated gestational age, sex, birth order), mother (ethnicity, age, race, education), and maternal prenatal practices (number and beginning month of prenatal doctor’s visits during pregnancy; weight gain during pregnancy; whether the mother smokes). Outcomes included low birth weight; prematurity, small for gestational age, and infant mortality. Analyses compared the two groups; within Down syndrome, predictors were also identified of adverse birth outcomes. For comparisons of newborns with Down syndrome versus those in the general population, analyses involved both individual chi-square and t-tests. To determine independent predictors, omnibus logistic regressions were performed using as outcomes low birth weight (<2500 grams), prematurity (<37 weeks), small-for-gestational age (defined as the 10th percentile or less by gender), and infant mortality (death within the first year of life). Results. Compared to newborns in the general Tennessee population, newborns with Down syndrome had greater risks for being born at low birth weights (2924 versus 3264 grams, OR = 2.75; CI: 2.35 – 3.21), prematurity (OR = 2.48; CI: 2.13 – 2.88), and small for gestational age (37.3 versus 38.5 weeks, OR = 2.24; CI: 1.91 – 2.63). Infant mortality rates were 7.08 times (CI: 5.33 – 9.29) higher in the Down syndrome group. Within Down syndrome, maternal weight gains of below 25 pounds, maternal smoking, and 0-5 prenatal physician visits related to adverse birth outcomes. In the multivariate analysis, maternal weight gain was associated with all four adverse birth outcomes; the number of prenatal visits during pregnancy was associated with low birth weight, prematurity, and infant mortality; maternal smoking was associated with low birth weights; and, maternal age was associated with low birth weight. Conclusion. As one of the first studies examining the amounts and correlates of adverse birth outcomes among newborns with Down syndrome, this study highlights the interplay of the effects of Down syndrome and of maternal prenatal practices. Newborn infants with Down syndrome are at increased risks for adverse birth outcomes. The presence of adverse birth outcomes among newborns with Down syndrome seems related to the syndrome itself and to specific maternal practices during pregnancy. 160 SYMPOSIUM 12 Propensity Scores: A Method for Matching on Multiple Variables in Down Syndrome Jennifer U. Blackford Vanderbilt Kennedy Center for Research on Human Development Department of Psychiatry, Vanderbilt University Medical Center Families with a child with Down syndrome differ from the general population on a number of maternal characteristics and demographic factors. In order to understand observed group differences beyond what can be predicted by such demographic differences, researchers attempt to create appropriate matched control groups. Even with large numbers of potential matches in a population sample, it can still be challenging to directly match with categorical and/or continuous variables or control by including multiple covariates. In this talk, Dr. Blackford introduces propensity scores based on multiple variables to select control participants from a large database matched to a group with Down syndrome. Method: Tennessee Birth (2001) and Hospital Discharge Records (2001-2003) were used to create a large scale, administrative database including demographic variables, birth variables, and identification of Down syndrome. Of the 83,039 births during the 2001 calendar year, 85 (0.102%) had Down syndrome. Propensity Scores and Matching: Propensity scores are an efficient compromise between two extreme methods of matching: selecting a small number of variables for matching and including too many covariates in analyses. Propensity scores were used to reduce the information in multiple covariates into a single number. Propensity scores were computed for each member of the birth cohort using a logistic regression. Group membership (DS vs. non-DS) served as the dependent variable and predictor variables included those within the Birth dataset related to risks of either having Down syndrome or for low birthweight (maternal age, maternal education, number of prior births, plural birth, maternal weight gain, maternal race (white/black), marital status, and child gender). For each individual in the DS group, an individual in the non-DS group with a “close” propensity score was designated a match. A simple t-test of the difference in birth weight between the DS and matched non-DS group was computed. Note that the dependent variable birthweight was not used to create the propensity score. Results: Using traditional, direct matching methods, only 45% of the DS births were successfully matched. Using propensity scores, 91% (n=77) of the DS births were matched. In the unmatched comparison of DS vs non-DS, mean birthweights were 2855 grams (SD=762) and 3244 grams (SD=627) respectively. In the matched comparison, mean birthweights were 2825 (SD=89) and 3111 (SD=808), respectively. While both comparisons reveal large, statistically significant differences, the effect size in the unmatched comparison was .56, as opposed to .36 in the matched comparison. Conclusion. 1) Even with relatively large datasets, propensity scores provide an efficient method for creating matched control groups for studying health outcomes for children with Down syndrome. 2) Birth weight differences between newborns with and without Down syndrome still exist even when using propensity scores. 161 INDEX A D Abbeduto, L ......................... 9, 12, 19, 20, 69, 151, 152 Adamson, LB ....................... 19, 152, 155 Adayev, T ............................. 10, 51, 54 Akai, CE .............................. 8, 22, 28 Albertini, G .......................... 10, 51, 54 Alessandri, M ...................... 11, 63 Alexander, ML ..................... 15, 104 Anderson, JA ....................... 12, 69 Antonarakis, SE .................. 10, 51, 53 Arancio, O ........................... 10, 51, 53 Dagnan, D ........................... 16, 117 Dalton, A .............................. 10, 51, 54 Danov, S .............................. 14, 93, 95 Davisson, MT ...................... 10, 51, 53 Day, J ................................... 13, 81 De Camilli, P ....................... 10, 51, 53 Della Rosa, A ...................... 11, 64 DeRamus, M ....................... 11, 56 Deutsch, CK ........................ 14, 88, 91 Devenny, DA ....................... 14, 16, 82, 83, 84, 85, 113 Di Paolo, G .......................... 10, 51, 53 Dommestrup, A ................... 18, 133 Doody, M ............................. 9, 36, 38 Dowjat, KW ......................... 10, 51, 54 Dube, WV ............................ 12, 14, 68, 88, 91 Dunn, ML ............................. 16, 109 Durocher, JS ....................... 11, 63 Dykens, EM ......................... 14, 17, 88, 89, 123 B Bailey, Jr, D ......................... 12, 17, 71, 128 Bakeman, R ........................ 19, 152, 155 Baker, BL ............................. 15, 107 Ball, S .................................. 16, 114 Baranek, GT ........................ 11, 17, 56, 121 Barker, RM .......................... 17, 19, 120, 152, 155 Baron, A ............................... 12, 69 Barrio, J ............................... 14, 83, 86 Barua, M .............................. 10, 51, 54 Bates, MJ ............................ 12, 66 Becker, A ............................. 12, 67 Belser, RC ........................... 11, 13, 57, 79 Benson, PR ......................... 15, 99 Bialik, M ............................... 14, 88, 89 Biasini, FJ ............................ 12, 66 Blacher, J ............................. 15, 19, 107, 146, 147 Black, D ............................... 11, 64 Blackford, JU ....................... 19, 157, 161 Bodfish, JW ......................... 18, 94, 95, 97, 135 Boelter, E ............................. 18, 141 Borel, C ................................ 10, 51, 53 Borkowski, JG ..................... 8, 17, 21, 22, 24, 27, 124 Boyd, BA ............................. 11, 17, 56, 121 Brady, NC ............................ 10, 11, 13, 19, 45, 46, 58, 78, 152, 154 Bredin-Oja, SL ..................... 19, 152, 154 Brown, WT ........................... 15, 100 Burke Lefever, J .................. 8, 22, 23 Burns, L ............................... 13, 81 C Carolyn Graff, J ................... 9, 36, 39 Carothers, S ........................ 8, 22, 25 Carta, JJ .............................. 8, 22, 24 Carter, I ................................ 11, 59 Carter, S .............................. 14, 88, 89 Chen, C ............................... 14, 93, 94, 95 Cheslock, M ........................ 19, 152, 155 Chudley, A ........................... 15, 100 Cimasoni, L ......................... 10, 51, 53 Clary, J ................................. 94, 95 Cohen, IL ............................. 15, 100 Cohn, ES ............................. 16, 109 Cole, A ................................. 11, 60 Corrice, AM .......................... 17, 122 Coster, J .............................. 11, 61 Coster, WJ ........................... 16, 109 Costigan, FA ........................ 18, 135 Crittenden, K ....................... 41, 42 Crnic, K ................................ 18, 136 Crowson, SB ....................... 12, 66 162 E Emerson, E ......................... 15, 16, 108, 110 Esbensen, AJ ...................... 11, 62 F Faria, A ................................ 17, 130 Farris, JR ............................. 17, 124 Fenning, R ........................... 15, 107 Fey, ME ............................... 19, 152, 154 Fidler, DJ ............................. 11, 12, 18, 60, 70, 137 Finestack, LH ...................... 19, 152, 154 Fleming, KK ......................... 11, 19, 58, 152, 154 Flory, M ................................ 9, 41, 42 Floyd, FJ .............................. 13, 18, 74, 77, 140 Frere, SG ............................. 10, 51, 53 G Gaines Lanzi, R ................... 8, 22, 23, 25 Gardiner, K .......................... 10, 51, 53 Gardner, JM ......................... 11, 13, 17, 57, 79, 129 Gay, E .................................. 17, 121 Giles, ND ............................. 12, 69 Gilles, E ............................... 97 Giovedi, S ............................ 10, 51, 53 Glidden, LM ......................... 9, 11, 13, 17, 40, 41, 61, 73, 122 Gong, C ............................... 10, 51, 54 Gonzalez, M ........................ 15, 100 Gonzalez, V ......................... 11, 63 Gordon, A ............................ 17, 129 Greenberg, JS ..................... 11, 62 Greenslade, K ..................... 12, 67 Grey, I .................................. 9, 36, 38 Gross, AM ............................ 17 Grundke-Igbal, I .................. 11, 51, 54 Gu, H ................................... 16, 113 Gu, W .................................. 10, 51, 52 Guest, KC ............................ 8, 22, 28 Gulsrud, A ............................ 10, 46, 48 H Hagopian, LP ...................... 18, 141 Hancock, TB ........................ 10, 47 Har, K ................................... 17, 125 Hardcastle, B ....................... 16, 115 Harin, A ................................ 17, 129 Harper, V ............................. 94, 95 Harrison, B .......................... 11, 64 Hartley, SL ........................... 17, 126 Harvey, MT .......................... 12, 67 Hastings, R .......................... 9, 13, 17, 19, 36, 38, 81, 131, 146, 148 Hatton, C ............................. 15, 16, 108, 110 Hatton, DD ........................... 15, 102, 103 Hauser-Cram, P .................. 16, 116 Hayes, A .............................. 12, 65 Head, LS .............................. 17, 127 Henderson, LM .................... 15, 101 Hepburn, SL ........................ 11, 12, 18, 60, 65, 70, 137 Herbert, J ............................. 16, 114 Hoch, J ................................ 14, 93, 96 Hodapp, RM ........................ 9, 19, 36, 37, 156, 157, 159 Holden, JJA ......................... 15, 100 Holland, AJ .......................... 14, 16, 82, 83, 114 Hopkins, IM ......................... 12, 66 Howard, KS ......................... 8, 22, 24 Hughes, KP ......................... 8, 22, 24 Hurlbut, D ............................ 12, 68 Huws, J ................................ 18, 138 Hwang, Y ............................. 10, 51, 54 I Imaki, H ............................... 10, 51, 54 Iqbal, K ................................ 11, 51, 54 J Jahoda, A ............................ 13, 16, 76, 117 Jahromi, LB ......................... 10, 46, 48 James, A .............................. 17, 128 Jenkins, EC ......................... 9, 15, 16, 30, 32, 100, 113 Jennett, HK ......................... 18, 141 Jobe, BM ............................. 11, 13, 17, 61, 73, 122 Johnson, R .......................... 14, 17, 88, 89, 123 Johnstone, EC ..................... 16, 111 K Kaczmarski, W .................... 10, 51, 54 Kaiser, AP ............................ 9, 10, 35, 36, 46, 47 Kaiser, MY ........................... 11, 63, 130 Karmel, BZ .......................... 11, 13, 17, 57, 79, 129 Kasari, C .............................. 10, 17, 46, 48, 125 Keltner, BR .......................... 8, 22, 25, 28 Kennedy, CH ....................... 12, 67 Kennedy, W ......................... 97 Kenworthy, L ........................ 11, 64 Kepe, V ................................ 14, 83, 86 Kersh, J ............................... 16, 116 Kim, S-Y .............................. 15, 100 Kittler, P ............................... 14, 17, 83, 84, 85, 129 Kledaras, JB ........................ 12, 68 Klerman, LV ......................... 8, 22, 28 Kolnik, S .............................. 17, 130 Kon, N .................................. 10, 51, 52| Kossler, R ............................ 14, 17, 88, 89, 123 Kover, ST ............................. 12, 69 Kovshoff, H .......................... 17, 131 Krinsky-McHale, SJ ............ 9, 14, 30, 33, 83, 84, 85 Kuchna, I ............................. 10, 51, 54 Kupersmidt, JB .................... 13, 74, 77 L Landesman Ramey, S ........ 8, 22, 25 Lee McIntyre, L ................... 18, 133 Lewis, P ............................... 12, 69 Lewis, S ............................... 15, 100 Li, M ..................................... 10, 51, 52 Liang, Z ................................ 11, 51, 54 Lieving, GA .......................... 18, 141 Lin, CS ................................. 10, 51, 52 Liu, F .................................... 11, 51, 54 Liu, X .................................... 15, 100 Lloyd, T ................................ 13, 19, 75, 146, 148 Lott, I .................................... 6, 14 Lubke, G .............................. 8, 22, 26 M MacLean, Jr., WE ............... 12, 17, 65, 126 MacWhorter, KJ .................. 18, 141 Magruder, H ......................... 18, 132 Mahoney, G ......................... 15, 106 Mailick Seltzer, M ................ 9, 11, 20, 62 Malesa, EE .......................... 12, 72 Malow, BA ............................ 15, 101 Mankowski, JB .................... 12, 71 Marzec, ML .......................... 15, 101 Mayeux, RP ......................... 8, 30, 31 Mazzocco, MMM ................. 18, 134 McCann, J ........................... 16, 115 McGrew, SG ........................ 15, 101 McIlvane, WJ ...................... 12, 14, 68, 88, 91 McMahon, CR ..................... 12, 72 Mehta, PD ............................ 8, 10, 30, 31, 51, 54 Moffat, VJ ............................ 16, 111 Morris, RD ........................... 18, 144 Most, D ................................ 11, 60 Mulligan, J ........................... 13, 81 Murakami, N ........................ 11, 51, 54 Murphy, MM ......................... 18, 134 N Nash, S ................................ 13, Natcher, AL .......................... 13, Nazarloo, H ......................... 14, Neece, C .............................. 19, Nelson, LD ........................... 14, Neudorfder, NJ .................... 18, Newell, KM .......................... 18, Ngai, I .................................. 13, Ni, SA .................................. 16, Nicholson, JS ...................... 17, Noone, S .............................. 13, Nowicki, K ............................ 10, 75, 80 73 88, 89 146, 147 83, 86 133 135 74 113 124 81 51, 54 163 O O’Neill, S ............................. 9, 36, 38 Olsson, MB .......................... 19, 145, 146, 150 Orsmond, GS ...................... 9, 16, 35, 36, 109 P Pablo Juarez, A ................... 12, 67 Pan, H .................................. 16, 116 Pang, D ................................ 8, 16, 30, 31, 113 Pantino, E ............................ 14, 17, 88, 89, 123 Parker, D ............................. 94, 95 Parsa, RA ............................ 15, 104 Patel, BP ............................. 8, 30, 31 Pearson, RK ........................ 12, 66 Pedersen y Arbona, A ......... 18, 136 Pennington, B ...................... 12, 70 Perales, F ............................ 15, 106 Pert, C ................................. 16, 117 Petalas, MA ......................... 13, 75 Phan, HTT ........................... 17, 129 Philofsky, A .......................... 11, 12, 18, 60, 70, 137 Piazza, V ............................. 18, 140 Pitcairn, TK .......................... 18, 142 Poe, MD ............................... 11, 56 Pollina, EA ........................... 10, 51, 53 Pownall, J ............................ 13, 76 Tally, B ................................. 12, 67 Tarvainen, M ........................ 96 Thompson, T ....................... 14, 87, 88, 90 Timmins, C .......................... 16, 115 Tobin, EL ............................. 18, 141 Toogood, S .......................... 13, 80 Toole, LM ............................. 18, 141 Totsika, V ............................. 13, 80 Trower, P ............................. 16, 117 Tycko, B ............................... 9, 10, 30, 32, 50, 51, 52 Urbano, RC ......................... 9, 19, 36, 37, 157, 158 Urv, TK ................................. 9, 30, 33, 34 V 103, 128 137 49, 152, 155 123 S Salas, M ............................... 10, 51, 52 Sallows, G ........................... 14, 88, 90 Schatz, JN ........................... 8, 22, 24, 27 Schmidt, C ........................... 10, 51, 53 Schroeder, S ....................... 12, 69 Schupf, N ............................. 8, 9, 10, 16, 30, 31, 32, 34, 50, 51, 113 Selkirk, M ............................. 16, 117 Sevcik, RA ........................... 16, 18, 19, 120, 144, 152, 155 Shanahan, M ....................... 15, 103 Sherman, S ......................... 7, 9 Shin, JY ............................... 9, 40, 41, 42 Shinde, S ............................. 95 Siddarth, P ........................... 14, 83, 86 Sideris, J .............................. 15, 102 Silverman, WP .................... 8, 9, 10, 11, 14, 16, 29, 30, 31, 32, 33, ............................................. 34, 51, 52, 54, 83, 85, 113 164 T U R Rabe, A ................................ 11, 51, 54 Raitano Lee, N .................... 12, 70 Ramakrishna, N .................. 11, 51, 54 Ramey, C ............................. 8, 21, 22 Reeves, RH ......................... 6, 20 Reilly, D ............................... 18, 138 Remington, B ...................... 17, 131 Richmond, EK ..................... 12, 69 Roberts, JE .......................... 12, 15, 17, 71, Rogers, SJ ........................... 12, 18, 65, 70, Rojas, C ............................... 11, 63 Romski, MA ......................... 10, 19, 45, 46, Roof, E ................................. 14, 17, 88, 89, Rosenbloom, ST ................. 19, 157, 160 Rovito-Gomez, T ................. 15, 100 Ryan, R ................................ 9, 30, 34 Small, G ............................... 14, 83, 86 Smith, AL ............................. 10, 19, 46, 49, 152, 155 Smith, LE ............................. 8, 22, 26, 28 Snead, K .............................. 13, 77 Spillane, A ............................ 18, 139 Stenfert-Kroese, B .............. 16, 117 Sterling, A ............................ 13, 78 Stone, WL ............................ 12, 15, 72, 101 Stoneman, Z ........................ 19, 146, 149 Strickland, S ........................ 18, 140 Sudhalter, V ......................... 11, 13, 57, 79 Sullivan, C ........................... 12, 67 Sullivan, K ........................... 15, 102 Symons, FJ ......................... 14, 92, 93, 94, 95, 96, 97 Valdovinos, MG ................... 15, 104 Valenti, SS ........................... 9, 41, 42 Vaughan, F .......................... 18, 138 Velinov, MT .......................... 16, 113 Viet Nhan, N ........................ 9, 41, 42 Vijay, P ................................. 10, 47 Voronov, SV ......................... 10, 51, 53 W Wallace, G ........................... 11, 64 Wang, L ............................... 15, 101 Wang, P ............................... 10, 41, 44 Warren, SF .......................... 8, 13, 19, 22, 26, 78, 151, 152, 153, ............................................. 154 Watson, LR .......................... 11, 17, 56, 121 Weber, A .............................. 12, 69 Wegiel, J .............................. 10, 51, 54 Wendelschafer-Crabb, G .... 97 Wenk, MR ............................ 10, 51, 53 Wheeler, A ........................... 15, 102 Wilkinson, KM ..................... 14, 88, 91 Williams, KR ........................ 18, 142 Williams, L ........................... 13, 81 Willis, DS ............................. 18, 142 Wilson .................................. 13, 76 Wise, JC .............................. 18, 144 Wishart, JG ......................... 7, 15, 16, 18, 111, 115, 142 Wong, CS ............................ 18, 143 Wood, S ............................... 16, 115 X Xing, L ................................. 10, 51, 52 Y Yale Kaiser, M ..................... 17 Ye, L ..................................... 16, 113 Yoder, PJ ............................. 12, 19, 72, 152, 153 Young Ryu, S ...................... 10, 41, 43 Z Zigman, WB ........................ 8, 9, 10, 16, 30, 31, 32, 33, 34, 51, 52, 113 165 Notes Notes
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