Lise Mogensen Social Justice & Social Change Research Centre, University of Western Sydney

1. “Learning to learn their views”: Including young people with different communication abilities in social research Lise Mogensen Social Justice & Social Change Research Centre, University of Western Sydney l.mogensen@uws.edu.au

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

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

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

5. Reported Challenges and Barriers • 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. Epistemological approach • 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. Combing theories ‘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)

8. Theoretical approach 1 • 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)

9. Theoretical approach 2 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 (Davis, 2000; Morris, 2003; Oliver, 1990, Thomas, 1999)

10. Research process overview

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

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

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. Data collection methods • Semi-structured interviews • Face to face • Email • Being-with • Participant observation • Active participation • Interaction

15. Strategies Communication Toolbox Preparing participants Individualising questions Rephrasing questions Clarifying answers Parent assistance Using humour Using Individuals’ own ideas Data Collection Methods:Face to face interviews

16. ‘Me tree’

17. Data Collection Methods:Email Interviews • 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. Data Collection Methods:‘Being-With’ • Strategies • Preparation • Spending time in several settings • Observing and interacting • Taking photos and making video clips • Interactive Activities (Use of photos permitted)

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

20. Research challenges • Participation abilities and competencies of young people with autism differ. • Important to value diverse forms of knowledge and contribution

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

22. Considerations for facilitating engagement • Sensitivity • Abilities • Preferences • Reciprocity • Style of Communication • Develop rapport • Avoiding ambiguity • Individualizing interviewing style • Flexibility • Respect

23. Key points • 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

24. References 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.

25. References 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), 261-275.

26. References 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.