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

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Presentation on theme: " Dominant research focus on deficits  Inclusive research methodology with children rarely used  Challenges: › The ‘nature ‘ of autism › Access and."— Presentation transcript:

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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) (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 ›  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 › Setting the scene › Prompt response to participant  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

24 Alderson, P. (2001). Research by children. International Journal of Social Research Methodology, 4(2), Alderson, P., & Goodey, C. (1996). Research with disabled children: How useful is child-centred ethics? Children & Society, 10, 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), Christensen, P., & Prout, A. (2002). Working with ethical symmetry in social research with children. Childhood, 9(4), Davis. (1998). Understanding the meanings of children: A reflexive process. Children & Society, 12,

25 Davis. (2000). Disability studies as ethnographic research and text: Research strategies and roles for promoting social change. Disability & Society, 15(2), 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, Kelly, B. (2005). 'Chocolate...makes you autism': Impairment, disability and childhood identities. Disability & Society, 20(3),

26 Kelly, B. (2007). Methodological issues for qualitative research with learning disablde children. International journal of Social Research Methodology, 10(1), Mason, J., & Urquhart, R. (2001). Developing a model for participation by children in research on decision making. Children Australia, 26(4), 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), Preece, D. (2002). Consultation with children with autistic spectrum disorders about their experience of short-term residential care. British Journal of Learning Disabilities, 30, 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. 26


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