Autism research doesn’t prioritise what autistic people want – new study
Scottish study published in journal Autism reveals disconnect between subjects of academic research and priorities identified by autistic people themselves.
For more than a decade, health services in the UK have aimed to put patients and the public first, under the mantra, ‘No decision about me without me’. But a new study suggests that research into the developmental disability autism don’t take the same approach – and so fails to meet the needs of autistic people.
Photo by Karmishth Tandel
Indeed, Dr Eilidh Cage and colleagues at the University of Sterling conclude in their new paper that research projects related to autism rarely include autistic people in their design. The entirely predictable consequence of this is that research is not focused on things that autistic people would themselves prioritise. As a result, sizeable budgets invested each year in this kind of research could be better targeted to have a real impact. There is a lot that researchers could learn.
The study used the kind of participatory model that it finds is not being employed elsewhere. It was partly led by autistic researchers, working alongside community-based autistic co-researchers from Striving to Transform Autism Research Together — Scotland (STARTS).
Via autistic charities, online channels and personal networks, the research team recruited 225 participants across Scotland who all described themselves as autistic – most had a formal diagnosis while some were in the process or seeking diagnosis or had self-diagnosed.
Each participant was given a list of 25 research priorities, in part based on the team’s review of published work on autism. Participants scored these on the basis of importance, and were also asked to add areas they felt should be researched that did not appear on the list.
It sounds simple enough but the result of this study are extraordinary, and suggest a huge, untapped potential for new investigations. The top priority was mental health and well-being, from how such terms are defined to the support available to autistic people. Then came ways to improve the identification and diagnosis of autistic people. Next was services and support across the lifespan of autistic people, followed by ways to prevent stigma and discrimination.
By contrast, some of the most popular areas for current autism research, such as genetics, interventions and treatments, were given little priority at all by participants.
What’s more, 109 participants added new areas needing research. These included the role of commonly co-occurring conditions such as Ehlers Danlos Syndrome and Mast Cell Activation Syndrome, as well as how these intersect with common difference in learning found in autism, ADHD, dyslexia and so on. Some participants were keen to see alternatives to Applied Behavioural Analysis and training programmes, and more research on non-White autistic populations, as well as on cognition and reproductive health.
The study certainly provides plenty to inspire targeted, effective new research. ‘We implore autism researchers to listen to autistic people,’ conclude the authors. ‘We call on funders to fund traditionally under-researched areas and provide sufficient funds for participatory approaches.’ The hope, they say, is to drive research into autism that, ‘is unified, progressive and impactful.’
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