2.  Dominant research focus on deficits  Inclusive research methodology with children rarely used  Challenges: › The ‘nature ‘ of autism › Access and consent › Suitable research methods 2

3.  Reluctance to participate  Concrete thought processes  Difficulty in talking about the future  Lack of personal insight  Dislike of change 3 (Preece, 2002)

4. 4 (Klin, Lang, Cicchetti, & Volkmar, 2000; Bailey, Palferman, Heavey, & Le Couteur, 1998; Chakrabarti & Fombonne, 2005; Le Couteur et al., 1996; Lord, Leventhal, & Cook Jr., 2001) Autism Spectrum Disorders (ASD) Autism Asperger’s Syndrome Pervasive Developmental Disorder Higher Functioning Autism Atypical Autism Communication & use of Language Sensory Sensitivities Dislike Change Prefer Routine Repetitive or Unusual Behaviour Two-way Social Interaction

5. 5  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)

6.  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

7. ‘New’ Sociology of Childhood Social Models of Disability 7 (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)

8.  Children as social actors  Co-constructors of knowledge  Taking children’s views seriously  Lives in the present and thoughts on the future ‘New’ Sociology of Childhood (Alderson, 2001; Fattore & Mason, 2005; Fattore, Mason, & Nixon, 2005; Mayall, 2002; Prout & James, 1990) 8

9. Impairment  physical, cognitive, communication or sensory limitations Disability  oppressive barriers, negative attitudes, lack of support, access or equipment Questions ‘social norms’ Social (relational) Model of Disability 9 ( Davis, 2000; Morris, 2003; Oliver, 1990, Thomas, 1999)

10. Research phases Means of Communication MethodsPurpose 1 Parent consultation PhoneSemi- structured interviews Parent recruitment & consent Preliminary info about teenager communication requirements 2 Parent & Teenager consultation Face to face (Verbal, Signs, Cards) Semi- structured interviews Teenager recruitment & consent I.D. methods & communication strategies 3 Individual engagement of teenagers ( 2 – 5 visits + other contact ) Face to face (Verbal, written, signs, photos, pictures) Email (written) Semi- structured interviews ‘Being-with’ Data collection process 10

11.  Six participants  13 – 18 years of age  2 females  4 males  Secondary education › Main stream classes with varying support › School for specific purposes (SPSS) 11

12. Social Stories ™ (Gray, 2002; Gray & Garand, 1993) Modified Social story (Beresford, Tozer, Rabiee & Sloper, 2004) 12

13. 13 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 to stop or have a break (*Not participants real name. Use of photo permitted)

14.  Semi-structured interviews › Face to face › Email  Being-with › Participant observation › Active participation › Interaction 14

15. 15 Strategies › Communication Toolbox › Preparing participants › Individualising questions › Rephrasing questions › Clarifying answers › Parent assistance › Using humour › Using Individuals’ own ideas

16. 16

17. 17  Strategies › Max 4 questions per email › Setting the scene › Prompt response to participant email  Benefits › Convenient › Cost effective › Efficient › Generates written data  Limitations › No body language observations › Access to computer and internet › Computer literacy › May compromise young people’s privacy & confidentiality

18. 18  Strategies › Preparation › Spending time in several settings › Observing and interacting › Taking photos and making video clips › Interactive Activities (Use of photos permitted)

19. Talking mat™ (Cameron & Murphy, 2002) Write draw and talk Profile map 19

20.  Participation abilities and competencies of young people with autism differ. › Important to value diverse forms of knowledge and contribution 20

21.  Difficulty convincing adults that young people’s views are important › Researchers must be prepared to continually emphasise value of young people’s views. 21

22.  Sensitivity › Abilities › Preferences  Reciprocity › Style of Communication › Develop rapport › Avoiding ambiguity › Individualizing interviewing style  Flexibility  Respect 22

23. 23  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

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