1. family and parenting
2. children

Dominant research focus on deficits
 Inclusive research methodology with
children rarely used
 Challenges:

› The ‘nature ‘ of autism
› Access and consent
› Suitable research methods
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 Reluctance
to participate
 Concrete thought processes
 Difficulty in talking about the future
 Lack of personal insight
 Dislike of change
(Preece, 2002)
3
Autism Spectrum Disorders (ASD)
• Autism
• Asperger’s Syndrome
• Pervasive Developmental Disorder
• Higher Functioning Autism
• Atypical Autism
Repetitive or
Unusual
Behaviour
Two-way
Social Interaction
Communication
&
use of Language
Dislike
Change
Prefer
Routine
(Klin, Lang, Cicchetti, & Volkmar, 2000; Bailey, Palferman, Heavey, & Le Couteur, 1998;
Chakrabarti & Fombonne, 2005; Le Couteur et al., 1996; Lord, Leventhal, & Cook Jr., 2001)
4

Ethical and methodological dilemmas
 Access and consent
• Tension between the rights of children to participate in
research, and the carers’ responsibility to protect them.
• Adult preconceptions about children's participation
abilities
 Research methodology
 Traditional research approaches unsuitable
 Traditional data collection methods lack flexibility
 A single method is not likely to suit all
(Beresford, Tozer, Rabiee, & Sloper, 2004; Kelly, 2005;
Kelly, McColgan, & Scally, 2000; Morris, 2003; Preece, 2002)
5

Focus on Teenagers
› knowledge, strengths and preferences
Collaborative participatory
 Teenagers authoritative

› Qualitative methods
› Issues within broad topic areas

Analysis aimed to identify meanings
› Collective
› Individual
‘New’ Sociology
of Childhood
Social Models of
Disability
(Including Alderson & Morrow, 2004; Christensen & James, 2000; Christensen & Prout,
2002; Davis, 1998; Davis, Watson, & Cunningham-Burley, 2000; Kelly, 2005; Kelly,
McColgan, & Scally, 2000; Mason & Urquhart, 2001; Oliver, 1990; Thomas, 1999; Prout &
James, 1990)
7


‘New’ Sociology of
Childhood


Children as social
actors
Co-constructors of
knowledge
Taking children’s
views seriously
Lives in the present
and thoughts on the
future
(Alderson, 2001; Fattore & Mason, 2005; Fattore, Mason, & Nixon, 2005;
Mayall, 2002; Prout & James, 1990)
8
Impairment

physical, cognitive,
communication or
sensory limitations
Disability

oppressive barriers,
negative attitudes,
lack of support, access
or equipment
Social (relational)
Model of Disability
Questions ‘social
norms’
(Davis,
2000; Morris, 2003; Oliver, 1990, Thomas, 1999)
9
Research
phases
Means of
Methods
Communication
Purpose
1
Parent
consultation
Phone
Semistructured
interviews
•Parent recruitment &
consent
•Preliminary info about
teenager
communication
requirements
2
Parent &
Teenager
consultation
Face to face
Semistructured
interviews
•Teenager recruitment &
consent
•I.D. methods &
communication
strategies
3
Individual
engagement
of teenagers
(2 – 5 visits +
other contact)
•Face to face
•SemiData collection process
structured
interviews
•‘Being-with’
(Verbal, Signs,
Cards)
(Verbal, written,
signs, photos,
pictures)
•Email
(written)
10
Six participants
 13 – 18 years of age
 2 females
 4 males
 Secondary education

› Main stream classes with varying support
› School for specific purposes (SPSS)
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Social Stories ™ (Gray, 2002; Gray & Garand, 1993)
Modified Social story (Beresford, Tozer, Rabiee & Sloper, 2004)
12
Lise
would like to see what John* is doing
at school today - Is this ok?
John can say
or nod his head
John can say
or shake his head
Can Lise take some photos of John?
John can hold STOP card
have a break
to stop or
(*Not participants real name. Use of photo permitted)
13

Semi-structured interviews
› Face to face
› Email

Being-with
› Participant observation
› Active participation
› Interaction
14
Strategies
›
›
›
›
›
›
›
›
Communication Toolbox
Preparing participants
Individualising questions
Rephrasing questions
Clarifying answers
Parent assistance
Using humour
Using Individuals’ own ideas
15
16

Strategies
› Max 4 questions per email
› Setting the scene
› Prompt response to participant email


Benefits
›
›
›
›
Convenient
Cost effective
Efficient
Generates written data
›
›
›
›
No body language observations
Access to computer and internet
Computer literacy
May compromise young people’s privacy & confidentiality
Limitations
17

Strategies
› Preparation
› Spending time in
several settings
› Observing and
interacting
› Taking photos and
making video clips
› Interactive Activities
(Use of photos permitted)
18
Talking mat™ (Cameron & Murphy, 2002)
Write draw and talk
Profile map
19

Participation abilities and competencies
of young people with autism differ.
› Important to value diverse forms of
knowledge and contribution
20

Difficulty convincing adults that young
people’s views are important
› Researchers must be prepared to
continually emphasise value of young
people’s views.
21

Sensitivity
› Abilities
› Preferences

Reciprocity
›
›
›
›
Style of Communication
Develop rapport
Avoiding ambiguity
Individualizing interviewing style
Flexibility
 Respect

22

Young people diagnosed with autism
Were a diverse group
Had something to communicate
Had different views to their parents
Had different knowledge of and interest in
autism
› Did not think autism was always most
important in their lives
›
›
›
›
23
Alderson, P. (2001). Research by children. International
Journal of Social Research Methodology, 4(2), 139-153.
Alderson, P., & Goodey, C. (1996). Research with disabled
children: How useful is child-centred ethics? Children &
Society, 10, 106-116.
Alderson, P., & Morrow, V. (2004). Ethics, social research and
consulting with children and young people. Essex:
Barnado's.
Beresford, B., Tozer, R., Rabiee, P., & Sloper, P. (2004).
Developing an approach to involving children with autistic
spectrum disorders in a social care project. British Journal
of Learning Disabilities, 32(4), 180-185.
Christensen, P., & Prout, A. (2002). Working with ethical
symmetry in social research with children. Childhood, 9(4),
477-497.
Davis. (1998). Understanding the meanings of children: A
reflexive process. Children & Society, 12, 325-335.
24
Davis. (2000). Disability studies as ethnographic research and text:
Research strategies and roles for promoting social change.
Disability & Society, 15(2), 191-206.
Davis, Watson, N., & Cunningham-Burley, S. (2000). Learning the lives
of disabled children. In P. C. A. James (Ed.), Research with
children: Perspectives and practices. London: Falmer Press.
Fattore, T., & Mason, J. (2005). Working seriously towards new
partnerships. In J. Mason & J. Fattore (Eds.), Children taken
seriously in theory, policy and practice. London: Jessica Kingsley.
Fattore, T., Mason, J., & Nixon, D. (2005). Participation: Count me in!
Involving children and young people in research. Sydney: NSW
Commission for children and young people, and Social Justice
and Social Change Research Centre, University of Western
Sydneyo. Document Number)
Fattore, T., Mason, J., & Watson, E. (2007). Children's
conceptualisation(s) of their wellbeing. Social Indicators
Research, 80, 5-29.
Kelly, B. (2005). 'Chocolate...makes you autism': Impairment,
disability and childhood identities. Disability & Society, 20(3), 261275.
25
Kelly, B. (2007). Methodological issues for qualitative research with
learning disablde children. International journal of Social
Research Methodology, 10(1), 21-35.
Mason, J., & Urquhart, R. (2001). Developing a model for
participation by children in research on decision making.
Children Australia, 26(4), 16-21.
Mayall, B. (2002). Towards a sociology for childhood: Thinking from
children's lives. Buckingham: Open University Press.
Morris, J. (2003). Including all children: Finding out about the
experiences of children with communication and/or cognitive
impairments. Children & Society, 17(5), 337-348.
Preece, D. (2002). Consultation with children with autistic spectrum
disorders about their experience of short-term residential care.
British Journal of Learning Disabilities, 30, 97-104.
Prout, A., & James, A. (1990). A new paradigm for the sociology of
childhood? Provenance, promise and problems. In A. J. A.Prout
(Ed.), Constructing and reconstructing childhood: Contemporary
issues in the sociological study of childhood. London: Falmer
Press.
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