I want to be me' : learning from teenagers diagnosed with autism using collaborative, participatory research

Abstract

An increasing number of children are being diagnosed with autism. While much literature exists about autism, a literature review highlighted that research about children and young people diagnosed with autism is predominantly within etic or adult expert research. The experiences and voices of children and young people are largely missing from research literature and from policies based on research. Some researchers who have sought to be inclusive of diagnosed children's views have reported difficulties in using traditional research approaches. Others have excluded those unable to articulate their views verbally. The dual aims of this research were to a) learn about the lives of a small group of teenagers diagnosed with autism, and b) develop an inclusive qualitative research approach that would enable meaningful engagement of individual young people with a range of cognitive and communication abilities. The theoretical framework for this research was informed by a constructionist paradigm drawing on concepts and principles from the 'new' sociology of childhood and the social model of disability. A collaborative participatory approach, informed by phenomenological and ethnographic traditions, was used. Consultations were conducted prior to the main data collection stage, first with parents and then with teenagers. The consultations involved establishing rapport, asking for consent and obtaining information about individual teenagers' communication abilities and preferences. Taking into account the increasing number of children and young people being diagnosed with autism, I suggest that further research is necessary to better understand their lives. However, researchers need appropriate time and resources in order to be inclusive of children and young people with a diverse range of abilities and requirements. In order to change negative stereotypes and attitudes towards those carrying diagnostic labels such as autism, I propose that significant steps should be taken to develop programs that increase awareness and understanding about impairment and disability. It is important to include young people's views in developing such programs in order to make appropriate decisions about processes that affect their lives.

Date of Award	2010
Original language	English