Views from the UK autism community We consulted four broad stakeholder groups who have a major interest in UK autism research, including (1) autistic people, (2) parents of autistic children, (3) people who work with autistic children and adults (educators, clinicians) and (4) researchers (academics, funders). This consultation sought to answer the following questions: 1. What are peoples’ priorities for future research? 2. What are peoples’ views and perspectives on current UK autism research? 3. What are peoples’ experiences of engaging with researchers? To address fully these questions, our consultation took two forms. The first was a large-scale online survey completed by 1,633 people. The second was a series of focus groups and one-to-one interviews involving 74 people. Full details of the methods are available in Appendix D. The survey, focus groups and interviews all followed the same structure. They were devised in such a way as to allow participants the opportunity (1) to voice their views and perspectives on future priorities for autism research, (2) to reflect on the current state of funding for UK autism research, and (3) to consider their experiences of engaging with the autism/research community.
What are peoples’ priorities for future research? In the survey, respondents were asked to rate the relative importance of 13 28
questions, which were derived from the 6 key research areas on p.18-19, and their priorities for future research. Respondents were asked to rate the relative importance of the 13 questions on a 5-point scale from ‘not-so-important’ (score of 1) to ‘very important’ (score of 5). Overall, there was broad agreement across all four stakeholder groups that all 13 research questions were of value, each obtaining a rating of at least ‘moderately important’ (see below). When asked to indicate which three of the 13 questions were the most important for research, there was remarkable convergence of views between the groups of respondents. Questions
1. How can we better recognise the signs and symptoms of autism?
2. Are there different types of autism?
3. How common is autism?
4. How do autistic people think and learn?
5. How are autistic people's brains different from the brains of non-autistic people?
6. To what extent is autism caused by environmental factors?
7. To what extent is autism caused by genetic factors?
8. What are the best ways to treat the core symptoms of autism?
9. How can public services best meet the needs of autistic people?
10. What is the place of autistic people in society today?
11. What are the best ways to improve the life skills of autistic people?
12. What does the future hold for autistic adults?
13. Why do autistic people appear to be more at risk from some medical conditions than non-autistic people?