Do autism researchers focus on things that autistic people want them to?
New research from Scotland finds some disconnect between academic and autistic community research priorities.
19 March 2024
Millions of pounds are invested every year in research on autism, yet few of these projects actively seek to include autistic people in their design phases. Many scholars and activists have called for more participatory approaches, arguing that there is a disconnect between the types of studies that are undertaken and what autistic people and their allies actually want from research.
Identifying issues that the autistic community would like to see researchers prioritise on is the central focus of a new study by the University of Sterling's Eilidh Cage and colleagues, which itself utilises a participatory design: the project was partly led by autistic researchers, as well as community-based autistic co-researchers from the Striving to Transform Autism Research Together — Scotland (STARTS) initiative.
The 225 Scottish participants for this latest study were recruited through online channels, personal networks, and autistic charities. All described themselves as autistic: most had a formal diagnosis, while others were either seeking a diagnosis or were self-diagnosed.
Prior to the study, the team's autistic co-researchers collated general topics they felt would be both important and unimportant to autistic people, and gathered existing literature on research priorities. From this list, the team selected 25 potential research priorities for participants to rate on 5-point scale from 'not at all important' to 'very important', then rank in order from most to least important.
After doing so, participants specified which of these questions they felt researchers should examine within their top three research priorities, and shared whether or not there were other questions they felt should be researched, but which had not appeared on the list.
Participants often provided insights relevant to their identities; women felt that more focus should be placed on the experiences of autistic women, while those who were LGBT+ felt issues relevant to that community should be highlighted, and older people felt issues affecting older autistic people were a higher priority. While not unexpected, this finding in particular clearly indicates that an intersectional approach, that acknowledges autistic people are a diverse group with diverse needs and concerns, continues to be important to build into research around autism.
Overall, however, the top priority for participants was mental health and wellbeing, particularly in terms of how mental health services can meet the needs of autistic people and how autistic people can experience greater wellbeing. Other priorities within the top ten, excluding the identity-based topics mentioned above, were improving diagnostics, the development of person-centred support services, stigma, employment issues, violence and trauma, education, and life skills. (Specialist readers digging for potential new research topics may find diving into the 'Qualitative Responses' section of this paper very useful.)
Perhaps most interestingly, though, is that 50 participants also highlighted many other potential topics that had not been placed on the initial list of 25.
Eleven of those 50 shared their desire for more research on the role of commonly co-occurring conditions (Ehlers Danlos Syndrome and Mast Cell Activation Syndrome are mentioned in particular), and how these intersect with common learning differences seen in autism, ADHD, dyslexia, and beyond. Nine mentioned rejecting Applied Behavioural Analysis, and asked for research into alternative approaches that 'focus less on training', and more on 'supporting and responding to the ways autistic minds work.'
Participants were also keen to see research focus more on non-White autistic populations, highlighting intersectional issues faced by those of various races, cultures, and backgrounds. Research on cognition and strategies to improve short term memory were requested, too, alongside topics relating to reproductive health, such as parenting and the menopause.
Taken together, these widely varying suggestions paint a rich picture of research priorities in autistic communities which are largely not prioritised by academic teams — something the team themselves describe as a "stark contrast." Interventions, genetics, and treatments — some of the most popular topics in autism research — were not a priority for these participants. In fact, these three topics were rated least pressing by this sample. This, they authors write, means that current funding "fails to meet the everyday needs of autistic people across the lifespan."
What is clear from this research is not only that current priorities may not be focusing on what matters to autistic adults, but that participatory approaches to research design can reveal valuable community insights. One of the key strengths of the research is that it was co-created with autistic researchers, allowing their years of lived experience to provide totally different angles that deepened and enriched the whole course of the study.
