“Learning to learn their views”: Including young

people with different communication abilities

in social research

Lise MogensenSocial Justice & Social Change Research Centre,University of Western Sydneyl.mogensen@uws.edu.au

Background 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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Reported Challenges and Barriers

Reluctance to participate Concrete thought processes Difficulty in talking about the future Lack of personal insight Dislike of change

3(Preece, 2002)

4

Autism

(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

SensitivitiesDislike Change Prefer

Routine

Repetitive orUnusual

BehaviourTwo-way

Social Interaction

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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)

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

Combing theories

‘New’ Sociology of Childhood

Social Models of Disability

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(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)

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) 8

Theoretical approach 2Impairment 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)

Research process overviewResearch phases

Means ofCommunication

Methods Purpose

1 Parent consultation

Phone Semi-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

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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)

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METHODS OF INFORM

ATION AND CONSENT

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

12

13

Lise would like to see what John* is doing at school today - Is this ok?

John can say or nod his headJohn 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)

Data collection methods Semi-structured interviews

› Face to face› Email

Being-with› Participant observation› Active participation› Interaction

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Data Collection Methods:Face to face interviews

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

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‘Me t

ree’

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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

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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)

COMM

UNICATION Talking mat™ (Cameron & Murphy, 2002)Write draw and talkProfile map

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Research challenges

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

knowledge and contribution

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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.

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Considerations for facilitating engagement

Sensitivity › Abilities › Preferences

Reciprocity› Style of Communication› Develop rapport› Avoiding ambiguity› Individualizing interviewing style

Flexibility Respect

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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

ReferencesAlderson, 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.

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ReferencesDavis. (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.

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ReferencesKelly, 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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