The largest ever study of autistic people’s priorities in Scotland has revealed a need for greater research focus on mental health, post-diagnosis support and addressing the social stigma.

The findings of the University of Stirling-led study also reveal that autistic people have a “deep desire” for research to be conducted with or by autistic people themselves.

Currently, most of the funding for autism research is spent on biological studies and the search for potential treatments or a ‘cure’.

However, the Stirling team has found that autistic people’s priorities for research lie elsewhere.

More than 200 autistic people living in Scotland were surveyed by psychology researchers from the university. he results suggest disparities between what people with autism want and the work being done on their behalf span both research and policy.

Quality of life

Dr Monique Botha, a co-author of the study, says a shift is needed in addressing autistic people as individuals rather than a “homogenous” group:

“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.”

Last year, an international neurodiversity conference hosted by Edinburgh’s Salvesen Mindroom Centre heard that the Scottish government prioritises neuro-inclusion.

The government has since launched consultation on its Learning Disabilities, Autism and Neurodivergence Bill – with proposals for inclusive communications and mandatory anti-stigma training.

Yet, prior to the Stirling-led study, only one autistic person for every 11 non-autistic people were asked in priority-setting studies about how they would like funding spent in autism research.

Roadmap towards change

In all, 225 autistic people from across Scotland contributed to the research by the Striving to Transform Autism Research Together, Scotland (STARTS) group of researchers and autistic people led by Dr Botha, Dr Eilidh Cage and the University of Edinburgh’s Dr Catherine Crompton.

Dr Cage says they found that inequalities span from health and wellbeing to community stigma, education and employment:

“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.”

Last year, a Public Health Scotland meeting heard calls to transform Scotland’s employment system to become more accessible and inclusive as part of cross-cutting efforts to tackle health inequalities.

Dr Cage says this research could impact change across research and service delivery beyond Scotland:

“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.”

Dr Botha adds: “This research has the potential to influence the priorities that the Scottish government sets for the next decade.”

The Scottish government’s consultation on proposals for a Learning Disabilities, Autism and Neurodivergence Bill is open to responses until 21 April 2024.

Read more:  Adult mental health services probe begins; Psychiatrists in ‘disbelief' over funding cuts; Scotland prioritises neuro-inclusion, says government; lasgow project makes research accessible to all

Sign up to our bulletin for key health & social care updates straight to your inbox and you can follow healthandcare.scot on Google News.