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To gain a clearer understanding of the diagnoses
of Autism, Asperger’s and Pervasive Development
Disorder Not Otherwise Specified (PDD NOS).
To learn about services and resources available
through community agencies and how to
successfully access and navigate these for
children with autism.
To learn about the most effective intervention
strategies for providers, parents and families.
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Autism:
◦ Social language and communication deficits including both spoken and
unspoken (pointing, eye contact, smiling) along with challenging
behavioral traits
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Asperger’s Syndrome:
◦ Typically high intellect and verbal abilities, but still lack common social
skills
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PDD NOS:
◦ Known as Pervasive Developmental Disorder-Not Otherwise Specified.
Combination of traits from other categories such as trouble with social
interaction, as well as difficulties in either communication or behavior
Less frequently occurring disorders:
 Childhood Disintegrative Disorder:
◦ Complete loss of language at age 2 with little subsequent improvement
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Rett’s Syndrome:
◦ 90% affected are female who have multiple and severe disabilities
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Autism, Asperger’s Disorder, and Pervasive
Developmental Disorder Not Otherwise Specified
(PDD NOS) fall under the umbrella of Pervasive
Developmental Disorders and are commonly referred
to as ASDs.
PDDs are called “spectrum” disorders because each
child has different symptoms that can range from
mild to severe.
PDD NOS is a diagnosis that is given when a child
exhibits only some of the criteria for autism, an
atypical pattern of deficits, or if the onset of the
disorder is later than age 3.
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In Massachusetts, the rate is estimated to be 1 in 122 children (Mass. DPH 12/05)
ASDs affect 1 in 88 individuals nationally (CDC, 2012) a 23% increase since (2009).
ASDs are 5 times more prevalent in boys than in girls and occur in all races,
ethnicities, and social classes.
The number of children identified with an ASD has been growing steadily in the
last few decades. Some of this increase can be explained by:
◦ more comprehensive research methods (e.g., casting a wider net in health and
educational settings and seeking out those who do not have a diagnosis)
◦ accounting for the entire spectrum (e.g., Asperger’s Disorder and PDD NOS
were included in more recent studies)
◦ improved parent and professional awareness
◦ advanced parental age
Researchers from the fields of genetics and environmental toxicology continue to
investigate other reasons why the rate of autism has increased so significantly.
More children will be diagnosed with ASD this year than AIDS, Cancer and
Diabetes combined
Social skills:
Such as emotions
Understanding how people are feeling
Having a conversation
Communication:
Both spoken and unspoken
(pointing, eye contact, smiling)
Behaviors or interests:
Such as repeating words or actions,
Playing with things in an unusual way
(spinning, lining up toys)
Insistence on following routines and schedules
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ASDs are neuro-developmental disorders that are
characterized by impairments in:
Social Interaction, Communication, and Behavior.
Specifically, individuals with ASDs have difficulty
interacting with others and using language in
conversation. They also have a restricted range of
interests or engage in repetitive behaviors.
These deficits are usually seen before the age of 3.
Individuals with ASDs often have difficulty learning
how to perform everyday activities, and some have
intellectual impairments that cause them to learn
more slowly than their peers.
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Asperger’s Disorder differs from autism
because individuals with Asperger’s Disorder
do not have a history of cognitive or language
delays, yet they have significant difficulties in
social interactions and communication.
Asperger’s Disorder is often diagnosed later
than autism since the deficits may not be
observed until the child begins to interact
with peers in more structured settings.
PDD NOS:
A diagnosis that is given when a child exhibits
only some of the criteria for autism, an atypical
pattern of deficits, or if the onset of the disorder
is later than age 3.
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Currently, there is no known cause of ASD.
Research suggests that ASD is caused by genetic factors, which may
be triggered by environmental causes. Exposure to environmental
causes may occur in the womb or during or after birth.
Ongoing studies are primarily focused on genetic and environmental
causes, such as maternal illnesses during pregnancy, conditions
during childbirth, and chemical exposures in the individual’s
environment.
ASD is not linked to parenting skills or psychological issues. Given
the many similarities and differences between individuals with ASDs,
many researchers suggest that there is likely to be more than one
cause of autism.
Risk Factors that may be associated with Autism: Higher incidence in
families with a member who has autism, Risk Factors in pregnancy
and delivery, Fragile X Syndrome, Gene Mutation, and if you have
noticed recent research is looking at causal factors of obesity and
Type II Diabetes.
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No medical or blood tests available to detect ASD
If an ASD is suspected, a multidisciplinary evaluation should
be conducted as soon as possible. During these evaluations,
the child and parents may meet with a number of specialists.
Each professional will conduct part of the evaluation including
a pediatric neurologist or developmental pediatrician,
psychologist, speech-language pathologist, and occupational
or physical therapist and the results will be summarized in a
written report.
ADOS is considered as the standard test for observations for
diagnosing ASD◦ Autism Diagnostic Observation Schedule
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Although there is no diagnostic laboratory test for ASDs, tests are often
recommended for the following reasons:
◦ 1) to search for a cause,
◦ 2) to find out if there are other medical problems that might look like autism (e.g.,
hearing loss), and
◦ 3) to detect additional medical problems that might be co-existing with an ASD.
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Audiologic testing is recommended for any child with delayed language
or at risk for autism. A child who does not speak or respond to others’
speech may have autism, a hearing problem, or some other condition
which interferes with speech.
Neuroimaging, the process of capturing images of the brain, may be
needed if there is an abnormal neurologic examination not explained by
the diagnosis of autism (e.g., non-symmetrical motor examination,
cranial nerve abnormalities, microcephaly). Hypopigmented or
hyperpigmented skin lesions, in which the skin appears lighter or
darker, may be examined by a Woods Lamp. Electroencephalograph
(EEG), a test that measures the electrical activity of the brain, may be
recommended if the child is demonstrating signs of seizure activity or
language regression. Routine clinical neuroimaging, such as Magnetic
Resonance Imaging (MRI), is not recommended as part of the diagnostic
evaluation of autism at the present time.
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Metabolic testing (a blood test) should be considered when there is a
history of lethargy, cyclic vomiting, early seizures, intellectual
disability, or unusual facial features. Untreated phenylketonuria
(PKU) is an example of a metabolic disorder.
Additional blood tests may be recommended. Lead testing is
recommended for children with pica (eating substances other than
food). Individuals may also have their ferritin level checked if there
are concerns of anemia (a lower than normal amount of red blood
cells).
Genetic testing may be used to rule out Fragile X or other genetic
disorders. Girls who fail to progress and lose skills following typical
development may be tested for a mutation in the MECP2 gene,
indicating the presence of Rett’s Disorder. Physicians may also
consider other genetic tests such as CGH (microarray).
Further medical tests may be recommended by the team. Individual
recommendations are based on the child's medical history and
symptoms.
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Many individuals with autism do not spontaneously reach
out to others to share information or feelings.
They often do not know how to engage in simple social
interactions, such as sharing an experience with another
person. For example, a 3-year-old child with autism may
not point to an animal so that his sister will notice it too.
Social skill deficits can make the development of
interpersonal relationships difficult.
Some individuals with autism have difficulty understanding
others’ perspectives, such as recognizing when other
people do not share the same interests.
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Another hallmark of autism is a delay in or a lack of development
of spoken language.
While many individuals with autism develop speech, their
communication may consist of single-word utterances or simple
sentences.
Common speech abnormalities include echolalia (immediate or
delayed repeating of information), unconventional word use, and
unusual tone, pitch, or inflection.
Even if more complex vocabulary is acquired, individuals with
autism may still have difficulties having conversations with other
people.
They also may not understand common nonverbal cues such as
body language, facial expressions, and eye contact.
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Individuals with autism have a restricted range of interests. For example,
a 6-year-old child with autism may play with his or her toy train to the
exclusion of all other toys.
Additionally, they may engage in repetitive play activities such as
spinning the wheels on a toy car rather than pretending to drive it, or
dangling a shoelace in front of their eyes for long periods of time. Other
repetitive behaviors may include motor movements, such as hand
flapping, spinning, or jumping.
Individuals with autism can be very resistant to changes in routine or
transitions between activities. Even a minor change could be a great
upset to an individual with autism.
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Behavior that is aggressive to others
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Self-injurious behavior
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May have either extremely passive behavior or extremely anxious, active
behavior
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Difficulty with transitions
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“Neophobia” fear of anything new
◦ Often food, may have very self-limiting diets
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Strict adherence to schedule or routines
Desire to follow set patterns of behavior and
interaction
Limited interests and /or intense restricted
interests
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Hypersensitivity
◦ Touch, lights, sounds, smells and other sensory stimuli may
be overwhelming
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Hyposensitivity
◦ Little sense of pain, temperature
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Little sense of:
◦ Fear, danger, safety
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Prone to wandering or bolting
Often seek out water sources
Body movements
◦ May have unusual walking pattern or balance, walking on
tip-toes repetitive actions such as rocking back and forth,
flapping of hands, and pacing or constant movement
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Repetitive behavior (perseveration) will simply
repeat words or phrases that have been
spoken to them (known as echolalia) or
memorized from songs, television shows ,
movies or books (known as scripting)
Delayed echolalia: repeating something heard
at an earlier time
Confusion between pronouns “I” and “you”
Lack of response to people
Lack of eye contact
Lack of pointing
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Approximately 50% of individuals with ASD
are non-verbal or do not have functional
speech
People with ASD who are verbal often have far
better receptive language skills compared to
expressive skills
People with Asperger’s Syndrome may appear
verbally sophisticated but still lack
comprehension skills
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First Domain-Impairment in ability to interact with others, lack of
appreciation of social cues, social/emotional inappropriate
behaviors
Second Domain- narrow interest pattern leading to exclusion of
activities (self or others) or relying on memory rather than
underlying meaning
Third Domain- repetitive routines or interests
Fourth Domain- speech and language peculiarities- delayed
onset of language; superficially perfect expressive language; odd
prosody, impaired comprehension, often able to read before
speaking, marked comprehension problems despite good
expressive skills, semantic-pragmatic language difficulties,
nonverbal learning disability (NLD)
Fifth Domain-non verbal communication problems, limited use
of gestures, body language and facial expressions
Sixth Domain-motor clumsiness, odd posturing and odd motor
behaviors, poor performance on neuro-developmental exam
Drawing skills
Musical skills
Arithmetic
Calendar arithmetic
Memory
Perfect pitch
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Normal to above normal intelligence
Affinity for perseverating on subject matters
which are of interest to them at the time-often
passionate and obsessive on the subject
Rule bound-limited ability to differentiate when
rules should be applied or relaxed
Tendency to being argumentative-especially
about rules. If non verbal, the defiance is
expressed physically, outwardly or inwardly
Executive Function Disorder (EFD)- the ability to
plan, to know when to start, shift, delay reactions
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Difficulty in maintaining friendships due to
confusion about social, subtle cues
Difficulty in modulating voice, and in establishing
personal space and distance
Difficulty in understanding another’s
perspective- empathy, (theory of mind)
Unrealistic expectation of one’s own abilities
Difficulty in censoring comments; doesn’t realize
the potential consequences
Trouble with transitions
Hypo or hypersensitive to touch, noise, smells
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Has difficulty keeping track of possessions
Loses track of time and schedule
Starts things but doesn’t complete them-distracted
Has systems for organization but doesn’t use them
Has difficulty with working memory-holding information in
mind while processing and implementing it
Feels challenged when trying to organize information and
relating it to their knowledge
Struggles with transitions e.g. getting dressed, waking
Has a one track mind
Seems to be the last to know what is going on
Doesn’t know how to use an “inner voice” to problem solve
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Psychiatric diagnoses are more likely to be
diagnosed or classified at a later age
Among children with Autism up to 96% are
reported to have a co-occurring developmental
condition
The most common conditions are:
 Learning disability, ADD/ADHD, mental retardation,
and stuttering, many of which can delay or “Mask”
a clinical diagnosis of ASD.
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ADHD can be found in up to 21% of children
High frequencies of attentional difficulties in
94% of children
Hyperactivity in 56% of children
Impulse control in 35% of children
Tic disorders in 22% of children
Some studies say 40%-75% of children with
ASD have ADHD.
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The most common are: Anxiety disorder,
mood disorder (bi-polar disorder), obsessive
compulsive disorder and oppositional defiant
disorder.
Early delays in communication skills,
challenging behaviors or impaired social skills
may be more general markers for conditions
later diagnosed as more complex psychiatric
or developmental conditions.
The intensity and severity of psychiatric
symptoms in individuals with ASD are
influenced by a number of factors including:
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Severity of core deficits,
Severity of cognitive impairments,
Presence of co-morbid medical disorders,
and
Life experiences related to coping with a
disability and or combination.
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Recent studies using standard psychiatric
assessments indicate a majority of children with
ASD ranging from 5-17 years meet criteria for
DSM Axis I diagnoses at 72%-80% with:
◦ anxiety disorders, bi-polar disorder, ADHD, other
disruptive behaviors and major depression most
commonly reported.
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Oppositional defiant disorder may be related to
core symptoms of Autism or may be consistent
with a true ODD diagnosis and the prevalence
rate is seen to be 25%
7.0%
6.0%
5.0%
4.0%
3.0%
2.0%
1.0%
0.0%
2008 National Health
2008 National Health
Survey Study
Survey Study
General Population
ASD Population
6.4%
25.0%
20.0%
21.0%
18.0%
15.0%
0.7%
10.0%
0.4%
0.5%
0.1%
General
Population
5.0%
0.0%
1.7%
1.7%
1.0%
ASD Population
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The Autism Division at Department of
Developmental Services oversees the
management of the Autism Waiver Program.
Autism Clinical Managers provide oversight,
technical assistance and monitoring. There are
seven DDS funded Autism Support Centers across
the state.
These Centers provide support brokerage
services to assist families with service planning,
identifying service providers and managing their
budgets for this program.
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DDS/Respite
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Autism Support Centers
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Autism Resources
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TILL’s Autism Support Center
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Advocates: Autism Alliance of Metro West
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HMEA: Autism Resource Center
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NSARC: The Autism Support Center
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Community Autism Resources
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Community Resources for People with Autism
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The Family Autism Center
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An individualized planning process, resulting in an Autism
Support Plan of Care, assists each family in identifying the
assessed needs of their child and the specific waiver
services available to address these needs.
All services have limits on their frequency and scope. With
the assistance from a Support Broker and oversight from
an Autism Clinical Manager, each family develops and
directs a plan of supports and services within the limits of
an individual budget, up to $25,000 based on the child’s
assessed needs.
Families receive support in identifying, hiring and training
providers who are qualified to deliver these services.
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Provides one‐to‐one behavioral, social and
communication based interventions through a service
called Expanded Habilitation.
The service consists of one‐to‐one interventions
developed and monitored by a trained clinician and is
carried out in the child’s home and community.
Expanded Habilitation includes, but is not limited to:
◦ Behavioral approaches such as Applied Behavioral Analysis
(ABA).
◦ Developmental and Relational Models such as: Floor Time
and Communication Models.
◦ Expanded Habilitation Services should help children
develop basic adaptive skills, elementary verbal skills and
appropriate interactive and play skills.
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Obtain a diagnosis that is documented in writing.
For an individual in Massachusetts for whom the
diagnosis of autism or a related developmental
disability is being considered, a referral should
be considered.
A diagnosis by a Developmental Evaluation Clinic,
school psychologist, or private clinician typically
provides documentation of a disability.
Documentation of a disability is necessary to
access the services provided by public agencies
for individuals with disabilities.
Education
 Obtain a functional, educational assessment
during the early adolescent years.
 Assure that the results of this assessment are
integrated into goals of the IEP.
 Assure the IEP includes experiential,
community based goals.
 Assure there is an annual evaluation of
progress made on all goals.
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All students need to prepare themselves for the
opportunities and challenges of adulthood. Such
preparation is critical for individuals with autism because
it is the key to a happy and productive life.
Public Law 94-142 that guarantees a free and appropriate
education for all school-aged children.
Individuals with disabilities must maximize their abilities
and opportunities in preparation for satisfactory
occupation during their adult years.
An educational assessment should measure the student’s
ability to function independently in areas essential to daily
living as an adult (e.g. communication, social, self care,
independence, etc.).
Teaching goals derived from the assessment should be
included in the IEP and progress on those should be
reviewed annually.
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Assure a written ITP (Individualized Transition
Plan) is in place at age 16.
Assure a referral to Vocational Rehabilitation has
been made at age 16 or older if a work capability
assessment is desired.
Assure a referral to the Single Portal Agency /
Local Management Entity has been made by the
beginning of the final year of school unless your
relative with autism is able to function
independently.
If the VR assessment or Transition Plan includes
any form of employment, assure a referral is
made for Long-Term Supported Employment.
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By the age of 14 the student with autism should have the
above mentioned assessment and it should be reviewed
annually to measure progress toward appropriate
assessment-based goals.
At the age of 16 a written Individualized Transition Plan,
like the IEP, should be developed in conjunction with the
family and reviewed annually until the transition from
school to a future setting occurs.
The process of transitioning to the next setting should be
by the beginning of the final year of education, unless the
student can function well without assistance. As part of
the referral, all future needs should be listed, (e.g.
vocational, recreational, residential, transportation, etc.)
even if they are not needed immediately
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The Children’s Behavioral Health Initiative is an
interagency initiative of the Commonwealth’s
Executive Office of Health and Human Services
whose mission is to strengthen, expand and
integrate Massachusetts state services into a
comprehensive, community-based system of
care, to ensure that families and their children
with significant behavioral, emotional and mental
health needs obtain the services necessary for
success in home, school and community.
Standardized Behavioral Health Screening in Primary Care
Standardized Behavioral Health Assessment, using the
Child Adolescent Needs and Strengths tool (CANS)
Intensive Care Coordination
In-Home Therapy
Mobile Crisis Intervention
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Family Support and Training
In-Home Behavioral Services
Therapeutic Mentoring Services
These covered services can be accessed
through:
◦ Outpatient therapy,
◦ In-Home therapy, or
◦ Intensive Care Coordination, as part of the youth’s
Individual Care Plan (ICP) or treatment plan (for
Outpatient or In-Home Therapy).
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Use calm, simple language
Be literal and specific
Avoid slang words
Never try to stop a repetitive behavior unless it is self-injurious
or dangerous to others
Avoid touching or standing behind the person
Always be aware of the possibility of bolting
Allow the person to finish the behavior because this selfstimulating (stimming) can be self soothing
Be aware of hypotonia-people with ASD often have underdeveloped trunk muscles and may be unable to support their
airway when lying flat on their chest
Remember that stressful or upsetting situations overwhelm
people with ASD and can adversely affect them. They may
struggle with tasks they could normally perform (regression)
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Sign language
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Pictures and visuals
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PECS – Picture Exchange Communication
System
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Assistive technology
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All people can benefit from visual supports
Visual cues may be easier to follow than
auditory cues
Visual cues stay in place after the auditory
cue is gone
Individuals with autism often have difficulty
with auditory processing
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Assist in following routines/schedules
Cue when there are changes in routines
Cue us to follow rules
Help remember directions
Provide tangible concrete information
Increase independence
Remind us of significant events
Provide concrete reminder of what to do or
say
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Prepare-organize expectations
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Preview-teach skills prior to activity
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Prompt-provide instructional cues during
an activity
Review-reinforce skills through review after
an activity
May be related to difficulty processing the
information their body receives through
various senses. Disturbances can occur in any
or all of the following areas:
1.
Analysis: how the person interprets the
2.
3.
sensation
Memory: how (or if) the person remembers
similar sensations and proper responses from the
past
Processing: how quickly (or if) the sensation
reaches the central nervous system to be
interpreted
Many individuals with ASD already have
difficulty with communicating, the added
frustration of sensory challenges may result in:
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Negative behaviors like object or physical
aggression
Withdrawal from activities
Self-stimming activities
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Recognize that everyone has some sensory
issues
Learn to distinguish between hyperactive and
hypoactive sensory systems
Make observations of individual’s behaviors
in relationship to sensory input
Make environmental changes if possible i.e.,
lights, fragrances, music, clothing tags
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Engage in an activity with the child
Go to their level:
Use calm simple language
Avoid idioms or slang “You're pulling my leg.”
Talk in short, direct phrases
Be literal and specific
Make eye contact
Remain calm:
Avoid overreacting to inappropriate behaviors as
this could inadvertently reinforce this behavior
Practice patience:
Allow for delayed response to questions or
commands
Assist with transitions
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Utilize positive behavior reinforcement strategies
when ever possible:
◦ (“Nice job getting out of the pool”)
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Model positive behaviors:
◦ Use calm body language
◦ No screaming
◦ Avoid negative phrases
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Utilize visuals as much as possible:
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Picture cards
Written daily schedules
Written rules or directions
Simple phrase board
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Recommended
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More research needed and proceed with caution or use in conjunction with the
recommended:
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Applied behavior analysis (ABA)
Positive behavior supports (PBS)
Medication – can help with symptoms and for serious behaviors
Developmental therapies (DIR/Floor time or RDI)
TEACH
Social stories
Animal therapies
Art therapy
Music therapy
Herbs and Homeopathic treatments
Most vitamin therapies
Proven ineffective:
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Auditory integration training
Facilitated communication
Secretin
Psychoanalysis
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Reinforcement
Shaping
Prompting
Task analysis and
chaining
Discrete Trial
Instruction
Activity Schedules
Verbal Behavior
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Pivotal Response
Training
Natural Environment
Training
Incidental Teaching
Token Economy
Generalization
Maintenance
Functional Behavior
Assessment and
Intervention
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www.wrongplanet.net -Wrong Planet is the web
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www.aspennj.org/ Asperger Syndrome Education Network
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www.autism.healingthresholds.com- Summarizes
community designed for individuals (and parents /
professionals of those) with Autism, Asperger's Syndrome,
ADHD, PDDs, and other neurological differences.
 www.dotolearn.com –Do2Learn: Educational Resources
for Special Needs -picture communication cards, songs,
games and activities for autism and special needs children.
Many free printables.
(ASPEN) ASPEN provides families and individuals whose lives
are affected by Autism Spectrum Disorders and Nonverbal
Learning Disabilities with education, support and advocacy.
current autism therapies, treatments, research and
news
◦ www.tillinc.org -Towards Independent Living and
Learning, Inc.
◦ www.fcsn.org - The Federation for Children with
Special Needs
◦ www.aane.autistics.org - The Asperger’s
Association of New England◦ www.autism-society.org/massachusetts Autism Society of America’s Massachusetts
chapter ◦ www.autismspeaks.org - Autism Speaks
◦ www.autismconsortium.org -Autism Consortium
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The Autism Consortium
The Federation for Children with Special
Needs
Asperger's Association of New England
(AANE)
Mass Advocates for Children
The Lurie Center
Boston Medical Center
Children’s Hospital
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A psychologist
◦ A Psychologist will administer developmental and intelligence testing. These tests
yield important information related to the child's abilities, limitations, and overall
level of functioning compared to other children the same age.
Behavior Therapists
◦ A Behavior Therapist will use behavioral assessments to design, implement, and
evaluate procedures to help the child learn new skills and reduce challenging
behaviors.
Occupational Therapists
◦ An occupational therapist will assess the child's fine motor and self-help skills to
determine if the child is able to complete age-appropriate activities such as getting
dressed, using utensils, brushing teeth, or writing.
Physical Therapists
◦ The physical therapist will evaluate the child’s gross motor skills and coordination
(e.g., running, biking, throwing, catching).
Speech Language Pathologists:
◦ A speech therapist will assess the child's communicative abilities, including the ability
to understand and use language, articulate clearly, use language for different
functions, and engage in conversations. The speech therapist’s evaluation should
result in specific treatment recommendations for improving the child’s speech and
communication.
Joshua Lyons
 Autism Services Coordinator
 TILL’s Autism Support Center
 (781)302-4835
 [email protected]
Elizabeth Waters
 Director of Family Supports
 TILL’s Autism Support, PCA, IHBS, Children’s Services
 (781)302-4824
 [email protected]
Ann Cotter-Mack MS BCBA
 Director of Behavioral Services
 (781)302-4835
 [email protected]