Developing an approach to involving children with autistic spectrum disorders in a social care research project

Abstract

A project researching user-views on the outcomes of social care and support services for disabled children and their families presented new challenges to a research team. While the team had experience of working with other groups of disabled children, this project was the first in which the team sought to work directly with children with autistic spectrum disorders. This paper reports the process by which the research design and methods used were developed and tailored to the needs and abilities of these children. The key lesson learnt was the value of crossing disciplines, research areas and professional boundaries when trying to identify ways of working with a 'hard to reach group'.

What children on the autism spectrum have to ‘say’ about using high‐tech voice output communication aids (VOCAs) in an educational setting

“…This has resulted in children with autism being marginalised from the research process. Whilst we appreciate the challenges for researchers and are frustrated ourselves that we were not able, in this study, to find more reliable ways of accessing the boys' meanings of their experiences we agree with Beresford et al (2004) that it is vital that researchers persist in their attempts to include children with autism, as far as is possible, in the research process.…”

“…The importance of including the voice of the child in the development of provision is highlighted within current legislation (Every Child Matters, (DfES, 2004a); The Children Act, (DfES 2004b)). However accessing the perspectives of children who use non traditional forms of communication is problematic (Morris, 2003;Beresford et al, 2004) and so some children still remain unheard. Those around the child may well be able to offer informative interpretations that can help researchers and service providers understand the child's experience from the perspective of an 'expert witness'.…”

14. Methodological challenges

“…Beresford et al (2004) combined observation, drawing and interviews in their Mosaic Approach (after Clark & Moss, 2001) with children with autism. In addressing the difficulties their participants had in dealing with new experiences they also used social stories (that is, personalised stories using a prescribed format (Gray, 1994)) supported by photos and illustrations to prepare children for a visit from the researcher -to inform and reassure them.…”

“…It is often family members and advocates who can best advise on the individualised, sometimes idiosyncratic communication necessary to the interaction. This may be particularly true for children with autism, for whom an ongoing process of assent together with proxy consent may be needed (Beresford et al, 2004). Proxy consent is rarely considered ideal, but rather a necessary compromise.…”

“…They, among other researchers with learning difficulties, have expanded our understanding of what can be achieved in research terms from just involving people with learning difficulties in academic studies to studies in which people with learning difficulties take the lead. Such possibilities are less realisable for people with more profound difficulties, who lack the intellectual skills to be in control at every, or any, stage of the research process, or for people with autism, who may lack the required communication and social skills and flexibility of thought, making active participation rare (Beresford et al, 2004).…”