Research priorities of the autism community: A systematic review of key stakeholder perspectives.
Autistic people and their allies want research that improves daily life and provides lifelong skills, not just lab-based studies.
01Research in Context
What this study did
Hull et al. (2021) pulled together every paper that asked autistic people, families, and professionals what autism research should focus on.
They read the studies, grouped the answers, and built one big picture of what the community wants scientists to study.
What they found
The top wish is simple: fund work that makes daily life better and teaches skills that last a lifetime.
Lab studies that do not help outside the clinic fell to the bottom of the list.
How this fits with other research
Frazier et al. (2018) asked the same question in a survey three years earlier and got the same answer—applied beats basic science.
Carson et al. (2017) ran a small meeting on jobs and transition; their three priorities (train employers, boost family supports, grow research capacity) fit inside the 2021 review like a Russian doll.
Kim et al. (2024) later showed most stigma programs are weak one-shot videos—exactly the kind of low-impact study the community told Laura et al. to stop funding.
Why it matters
When you write a grant or pick an intervention, choose the one that teaches shopping, working, or making friends—skills that still matter at thirty, not just at three. Share the 2021 wish list with your director so your clinic’s research hours target what autistic clients say they need most.
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02At a glance
03Original abstract
It has become very important in autism research to ask the autistic community about what kinds of research they think should be done in order to improve the lives of people with autism. Many studies have reported on research goals from people within the autism community, such as parents of people on the autism spectrum, and practitioners and clinicians who support people on the autism spectrum. So far, the research goals from all of these studies have not been considered together, which is important so that all autism research can be working towards the same goals. We reviewed seven studies that looked at the priorities for autism research from key people within the autism community. Each of the reviewed studies are described according to (a) the types of people involved in the study, (b) the way the research goals from each group of people were identified, (c) the country where they were from and (d) the most common research goals from across all of the studies. Within these seven studies, research that will lead to real-world changes in the daily lives of the autism community and a greater focus on skill training for people with autism across their lives were found to be very important. From this review, we found that it is also very important to include a range of different people from the autism community when deciding what autism research goals should be focused on so that future research can be more helpful for the autism community.
Autism : the international journal of research and practice, 2021 · doi:10.1177/1362361320967790