Autistic people think that much current research into autism is focusing on the wrong things, a Scottish survey has found
“Autistic people who participated also highlighted a deep desire for the research that is done to either be led by autistic people, or be conducted in participatory ways alongside autistic people, because it’s something that affects their lives.” Dr Monique Botha, study co-author and research fellow, University of Stirling
Autistic people would prefer research into autism to focus on mental health, a new study has found.
The study, published in the journal Autism, was carried out by the University of Stirling, who surveyed 225 autistic people in Scotland between May and June 2022. As well as focusing on mental health, participants said they would like to see research into post-diagnosis support and social stigma.
Currently, most funding for autism research is spent on biological studies and a search for treatments.
Dr Monique Botha, a research fellow and co-author of the study, said: “Most research tends to treat autistic people as a homogenous group, but it is important not to treat all autistic people as the same, and to acknowledge the other factors influencing autistic people’s lives. The aim of this study was to work with autistic people, who live in Scotland, to understand what they want from autism research.
“We found that autistic people want applied research into diagnosis, mental health and topics which can enable a good quality of life.
“Autistic people who participated also highlighted a deep desire for the research that is done to either be led by autistic people, or be conducted in participatory ways alongside autistic people, because it’s something that affects their lives.”
Dr Eilidh Cage, a psychology lecturer and lead researcher on the study, said: “Autistic people face diagnostic disparities and a lack of service the whole way through the diagnostic process. They are more likely to have mental illness and are more likely to die by suicide.
“They often do not qualify for services in the community, face higher rates of unemployment and underemployment, are more likely to be victimised – including by caregivers, peers and romantic partners – and are more likely to drop out of or be excluded from education.
“This piece of research outlines a roadmap towards change which could be meaningful, but its impact is not limited to Scotland. As the single largest study of autistic people’s priorities for autism research, it has the ability to influence research agendas across the UK, and globally.”
The Royal College of Psychiatrists has commented on the shortage of medication for attention deficit and hyperactivity disorder (ADHD), which continues to have an impact on both adults and children with the condition. Dr Elaine Lockhart, chair of the Royal College of Psychiatrists’ child and adolescent faculty, said: “We sympathise with every child whose education has been adversely affected by the current shortage of ADHD medication. Many young people rely on this medication as a core part of their treatment, alongside other forms of care such as parenting interventions and psychological therapy, to help them reach their full potential. For some, there are no substitutes that are as effective medication.
“The current shortage is also affecting newly diagnosed children who are unable to access an initial prescription. As a result, they may be more likely to act impulsively at home and at school or to be inattentive and forgetful.
“We understand that many schools and teachers are themselves already under a lot of pressure, but it is important that reasonable adjustments are made for students with ADHD where there are the resources to do so.
“There are simple but effective ways to help these pupils focus and perform well at school such as through classroom seating plans, breaking tasks down into sizable chunks and increased opportunities for physical activities.
“The current medication shortage is a global issue. It is important that stakeholders work together to resolve it as quickly as possible, and the College will continue to push for this issue to be made a top priority.”
This study from the University of Stirling perfectly illustrates the need for patient and public involvement (PPI) in research. What neurotypical researchers believe research into autism should focus on, and what autistic people themselves think it should focus on, turns out to be completely different. Priorities for autistic people include mental health, post-diagnosis support and social stigma rather than biological causes and treatments. We hope that funders will take note and direct money into research that will benefit autistic people themselves rather than into research that aims to find a cure for the condition.