Developing a social understanding of autism through the 'social model'.

The aim of this study is to design an innovative research methodology to engage young people with a label of 'autism', in the research process. Advancement in the creation of a new and innovative research methodology made it possible for 11 young people to communicate with the researcher about what was important to them as they went through adolescence. 'Barriers' to inclusion in the research process were challenged by developing, practical ways to de-code and translate complex communication systems through the design of a 'communication profile'. Engaging young people with a label of 'autism' in a way that enables them to lead and direct the research process is new and challenges traditional research assumptions. It also challenges traditional research methods used with people with a label of Teaming difficulties' and questions the validity of 'researcher led' narrative. Utilising a more democratic process of 'inclusive' research methodology led to the findings that young people with a label of 'autism' are disabled by 'barriers' within wider society rather than by their perceived 'impairments'. The disabling barriers evident from this research were physical barriers (in relation the physical environment); support barriers (in relation to interpersonal relationships and support); and information barriers (the way information causes disabling barriers if it is not presented in ways that enables understanding). The findings significantly challenged current and past theories of autism and questioned the 'truth' in the 'knowledge' ascertained from positivist research methodologies. Listening to the collective 'voice' of young people with a label of 'autism', urges a move away from a reductionist explanation of 'impairment', to embrace the wider holistic explanation of autism as 'disability'. To advance the continuation of participation in research, this research study calls for a 'paradigm shift' in research methodology, to move away from 'positivist' research methodologies to advancing an 'emancipatory disability research' agenda. This research also calls for the inclusion of people with a label of 'autism' to become engaged in the wider 'social model of disability' debate and to become included as part of the wider disabled people's movement.

Name dc:type.qualificationname

phd

Level dc:type.qualificationlevel

doctoral

Grantor dc:publisher.institution

Sheffield Hallam University (United Kingdom).

Year dc:date.issued

2003

Authors dc:creator

• Aylott, Jill.
• Dunn, Karen

Advisor dc:contributor.advisor

• Walker, Carol

Language dc:language

en