In brief
Participatory research means that people on the autism spectrum and their circle help decide what is researched, how research is done and how results are used. [1] Experts in Great Britain described that autism research has so far often provided little say for those affected and that research funding and questions do not match what the community considers important. [1] A 2022 position paper sees participation as one strategy to align research more closely with the priorities of those affected; an Australian funding programme shifted its funds, after an evaluation, towards services and lifespan topics. [2] How much participation improves the quality or benefit of research is not supported by studies in these sources, but is argued for and demanded.
This English translation was produced with AI assistance and has not yet been independently reviewed.
What “participatory” means
Fletcher-Watson and colleagues understand by it including the view of people on the spectrum and their allies on which research is done, how it is done and how it is implemented. It is important here to recognise and reduce the usual power imbalance between researchers and participants. Forms range from leadership by researchers with autism through equal collaboration to advice from organisations; it is just as important to adapt research so that people without spoken language or with intellectual disability can take part too. [1]
Why participation is demanded
The authors name several reasons: participation could make research more relevant, align it ethically with the values of the community and improve the methods; but there are indications that it is not yet widespread. [1] According to a British report, research funding and results did not match the priorities of people with autism, relatives and professionals; researchers saw themselves as more involved than those affected and families experienced it. [1] They name cultural obstacles (affected people are traditionally seen as study participants) and structural ones (for example hurdles to employment and careers in science). [1] Pellicano and den Houting link the demand with the neurodiversity paradigm: affected people should have a say in all decisions that concern them. [2] On the concept: Neurodiversity: what is behind the concept.
What a British seminar project produced
The project consisted of six seminars over three years, planned and led by people with and without autism; about 200 people took part. A final meeting with twelve people (five with autism, three parents, three professionals, ten from academia, with overlaps) worked out five themes: respect, authenticity, assumptions, infrastructure and empathy. [1] On respect they noted that the expertise from experience of affected people is rarely visible in research; in the project, affected people were visibly involved (a third to a half of participants), the environment was designed to be low in stimuli, and the language about autism was neutral (for example, not describing it as a disease). [1]
Example Australia
Pellicano and den Houting cite a funding programme in Australia that chose a participation-oriented approach: an evaluation of research spending 2008 to 2017 (in which one of the authors was herself involved) showed that in the second five-year period the funds were distributed more evenly between biological research and topics important to the community (for example services and lifespan topics). [2] From this the authors conclude that a broader research agenda, partly led by affected people, is possible. [2]
What do we know – what is still open?
Presented: That participation is demanded and being trialled in pilot projects, and how the authors justify it. [1; 2]
Open:
- Both sources are position and concept articles by researchers who favour participation (for Pellicano and den Houting a position paper on the neurodiversity paradigm, not a systematic review). [2] The editorial team has not read a balanced critical overview.
- Whether participation-oriented studies actually deliver better results is not shown in the sources read.
- The examples come from Great Britain and Australia; the editorial team has evaluated nothing on Germany.
- Different opinions within the community about goals and terms exist. More: Language and terms: autistic, autism spectrum disorder, neurodivergence.
What else you should know
- If you take part in studies: You can ask whether affected people were involved in planning and evaluation and how results are reported back. Note: this is a suggestion from the editorial team.
- Putting research in context: How good is a study? Evidence and recommendations explained explains how to recognise the quality of a study; Open research questions shows open questions.
Note: This article offers general information. It does not replace personal advice or treatment by professionals.
Sources and literature
- Fletcher-Watson S, Adams J, Brook K, Charman T, Crane L, Cusack J, Leekam S, Milton D, Parr JR, Pellicano E. Making the future together: Shaping autism research through meaningful participation. Autism 2019;23(4):943–953. https://doi.org/10.1177/1362361318786721 – Concept article (seminar series)
- Pellicano E, den Houting J. Annual Research Review: Shifting from ‘normal science’ to neurodiversity in autism science. Journal of Child Psychology and Psychiatry 2022;63(4):381–396. https://doi.org/10.1111/jcpp.13534 – Review article (position paper)
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