Making the future together: Shaping autism research through meaningful participation.
Sue Fletcher-Watson, Jon Adams, Kabie Brook and 7 others
PMID 30095277WHAT IT FOUND
Autistic people and allies said autism research should be shaped by autistic people from the start, not only as participants.
Five themes emerged: respect, authenticity, challenging assumptions, infrastructure, and empathy.
Key findings
01Autistic people and allies reported that autistic voices should be heard and taken seriously at all stages of research.
02The final meeting, attended by 12 people, produced five topics.
03The seminar series was not fully inclusive to people with a learning disability, and no non-speaking autistic people took part.
STILL TO COME
How it was doneWhat they foundWhat it means for SLPs
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What it does not show
The article is a report of seminar discussions, not a trial or clinical outcome study, so it does not show that participatory research improves patient care. The five themes came mainly from a final one-day meeting attended by 12 people, including 5 autistic people, 3 parents, 3 practitioners and 10 academics with overlapping roles. The authors state that the report is not a set of empirically-derived recommendations. The seminar series was not fully inclusive to people with a learning disability, and no non-speaking autistic people took part. Discussion focused more on social science and psychology than biology or neuroscience.
Declared interests
The article reports funding from the UK Economic and Social Research Council.
The easy way to misread this
Do not read this as evidence that participatory research improves clinical outcomes or patient care. It reports discussion themes from a seminar series and a final meeting of 12 people, not a tested treatment.