Autistic people find taking part in research studies acceptable

Autistic people find the idea of taking part in randomised controlled trials acceptable, according to the results of a study partly funded by the Bristol BRC and published in Autism journal. They link their positive attitude towards research participation to a heightened sense of fairness, a preference for evidence-driven knowledge and their belief in science as common good.

Researchers conducting the Autistic Adults and Randomised Controlled Trials (APRiCoT) study interviewed 49 autistic adults, without learning disabilities, between December 2019 and July 2020. They wanted to understand how autistic people felt about randomisation and other trial components. Understanding this would help the study team identify potential barriers and facilitators to recruiting trial participants from this group.

A randomised controlled trial is a study during which a number of similar people are randomly assigned to two (or more) groups to test a specific drug, treatment or other intervention. One group is given the drug, treatment or intervention being tested. A second group can be given an alternative treatment, a dummy (placebo) or no treatment at all.

During the APRiCoT study, interviewees reported being highly motivated to participate in research. They believed taking part in research was a moral obligation because it was the right thing to do. They also saw its potential to directly benefit their community in areas such as mental health, where not much research into effective treatments has been done.

Participants saw added value in including autistic people in decision-making at all stages of the research process, from generating research questions to the dissemination of findings. They felt that developing and conducting research in close collaboration with the autistic community would help to establish trust. They also suggested that adapting communication and being flexible about how participants kept in touch with researchers throughout the study could provide improved access for the autistic community.

During interviews, participants listed some of their concerns about taking part in research. These included:

• Their preference for a controlled and predictable world and how the uncertainty associated with trial design would affect their daily lives
• A distrust of healthcare professionals and medical research developed because of negative past experiences
• Potential barriers to communication between themselves and research teams

Autism is a common neurodevelopmental condition with around 1-2 per cent of children and adults around the world being affected by it. Autistic people are at greater risk of dying prematurely and experiencing other health inequalities compared to the general population. Improving healthcare for autistic people was identified as a clinical priority for England’s NHS in 2019.

Dr Alba Realpe Rojas, Research Fellow at the Bristol Medical School and joint-lead author, said:

“Researchers use well conducted and adequately powered randomised controlled trials to understand the effectiveness of healthcare interventions. It’s the gold standard in the field.

“However, we are increasingly aware that evidence from intervention studies in non-autistic people may not always be directly transferable to the autistic community.

“Commonly used psychological therapies may not be as effective or may have different side effects for autistic people due to communication and neurocognitive differences.

“Our interviewees highlighted that for autistic people, like themselves, who do not have moderate to severe learning disabilities, concerns about research participation may not be much different from those of neurotypical populations.

“Their concerns may be similar to those of neurotypical people, but their communication needs are not. As a research community, we should take these into consideration when designing and conducting trials.

“Getting autistic people involved in research design and conduct as well as much more flexibility in trial processes could help us accommodate the individual needs of this community.”