How can research be better informed by the direct involvement of the autistic community and broader autism community? Richard Mills July

Some of the barriers Different perspectives and priorities- autistic people- researchers – families –clinicians – educators (Mapping Autism Research, A Future Made Together (FMT) Poor quality research -methodological problems- bias (NICE) Research seen as distant (ivory tower)..with health bias (FMT) Research fails to address issues of real importance to autistic and autism communities (FMT) Inability to translate research into useful practice that make a difference to people’s lives (FMT) Autistic people and families feel as though treated as ‘guinea pigs’ by researchers- lack of dialogue- and respect (FMT) Language e.g. ‘disorder’ ‘clinical’ ‘treatment’ anathema to many 2

Armchair theory to….??

Outside in…..theories 4

Outside in ….treatments 5 secretin Risperidone

Inside out….theories 6

Inside out… ‘treatments’ 7

Involve A national advisory group –part of NIHR role is to bring together expertise, insight and experience in the field of public involvement in research, with the aim of advancing it as an essential part of the process by which research is identified, prioritised, designed, conducted and disseminated. 8

‘Involve’ as a model-is it enough? Involvement – where members of the public are actively involved in research projects and in research organisations. – Examples of public involvement are: as joint grant holders or co-applicants on a research project involvement in identifying research priorities as members of a project advisory or steering group commenting on and developing patient information leaflets or other research materials undertaking interviews with research participants user and/or carer researchers carrying out the research. Participation – where people take part in a research study. – Examples of participation are: people being recruited to a clinical trial or other research study completing a questionnaire or participating in a focus group 9

Challenges and opportunities Challenges How to listen.. Inclusion of people who can’t speak for themselves Practical barriers to involvement and participation of autism and autistic communities – life can be tough Inaccessible research papers Bias Opportunities Development of new technologies Digital communication makes access easier Changing attitudes to participation and how to engage with people- no excuse Write stuff non -researchers can understand and make use of Improve impartiality through greater participation 10

impact ‘Autistic community’ ‘Autism community’ Strategy Public policy Science and research Ethics Funding model

How can research be better informed? Be respectful Keep it real Make it relevant Make it accessible Be prepared to listen Work in partnership 12

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