Autistic people want their voices to be heard in future research, say experts
Families want research to be more relevant
A new study has found people with autism want their voices heard more in academic research.
Dr Monique Botha, from Stirling University, and colleagues undertook a study about what the research priorities of autistic adults in Scotland are.
It comes amid plans to introduce the Learning Disabilities, Autism and Neurodivergence Bill to protect the rights of those with autism and learning disabilities.
Botha, who is autistic, said most research is done by non-autistic people in areas of biology and genetics, without collaborating with autistic people and, as a result, the research may not be meaningful to autistic people and their families.
Botha said: “We want to bring autistic people in Scotland together to really understand what is important to them, and to platform their voices. Given the large amount of funding autistic research attracts, surely autistic people should have a say in how that is spent?
“I see first-hand how infrequently autistic people and their families are included in research. Research can have such an incredible impact on people’s lives but, for it to have an impact, we need to be looking at the right things.
“Autistic people have been asking for decades to be heard in autism research, and this project really does that. I think this is a perfect opportunity for policymakers to listen.”
Marion McLaughlin, from Aberdeen, is autistic as well as being a mum to an autistic child, and believes autistic people must have a say in research.
She said: “Historically, autistic people have not been included in these types of decisions because it was deemed we didn’t have the capacity to. I tend to ask people to change the subject of that sentence – would we be comfortable saying women shouldn’t have a say in what women’s research is being done? Would we be comfortable in men having more of a say? Of course not!
“We should expect any minority community, including the autistic community, to have a strong voice in all matters pertaining to them including research.”
Dorry McLaughlin, chief executive of Scottish Autism, acknowledged the importance of the Stirling University research. She said: “This timely research is extremely helpful in providing understanding of autistic people’s priorities and the areas that need to have greater focus.”
Mental Health Minister Maree Todd said:“In partnership with autistic and other neurodivergent people, we have been working to identify and prioritise the issues that matter to them. As a result of this collaborative effort, autistic people and people with learning disabilities have led new work on accessing mental health services and support, and the Learning Disability, Autism and Neurodivergence Bill.
“Our consultation on the Bill was developed with people with lived experience and is a key opportunity for autistic people and other neurodivergent people to have their say about how best to protect, respect and champion their rights.”