Research Priorities of autistics studied
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ASPartOfMe
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09 Feb 2024, 9:55 am
Largest ever study of autistic people’s research priorities finds need for focus on mental health
Quote:
The largest ever study of autistic people’s priorities has revealed a desire to focus research on mental health, post-diagnosis support and social stigma.
The majority of funding for autism research is currently spent on biological studies and on the search for treatments and a cure.
New research by the University of Stirling has found that autistic people’s priorities for research lie elsewhere.
More than 200 autistic people in Scotland were surveyed by psychology researchers based in the University’s Faculty of Natural Sciences.
Quality of life
Dr Monique Botha, a 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.”
Prior to this study, only one autistic person for every 11 non-autistic people in priority settings studies were asked about how they would like funding spent in autism research.
Roadmap towards change
Lead researcher Dr Eilidh Cage 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 Scottish Government is currently consulting on proposals for a Learning Disabilities, Autism and Neurodivergence Bill.
Cross-sectional survey
The research was conducted by the Striving to Transform Autism Research Together, Scotland (STARTS) group, a collaborative of researchers and autistic people from across Scotland, led by Dr Eilidh Cage, Dr Monique Botha and Dr Catherine Crompton (University of Edinburgh), and funded by the Royal Society of Edinburgh.
Together, they created a cross-sectional survey. A total of 225 autistic people from almost all council areas in Scotland participated during May and June 2022.
The survey, which also included 50 autistic caregivers of autistic children, involved ranking and rating the importance of 25 different research topics.
The majority of funding for autism research is currently spent on biological studies and on the search for treatments and a cure.
New research by the University of Stirling has found that autistic people’s priorities for research lie elsewhere.
More than 200 autistic people in Scotland were surveyed by psychology researchers based in the University’s Faculty of Natural Sciences.
Quality of life
Dr Monique Botha, a 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.”
Prior to this study, only one autistic person for every 11 non-autistic people in priority settings studies were asked about how they would like funding spent in autism research.
Roadmap towards change
Lead researcher Dr Eilidh Cage 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 Scottish Government is currently consulting on proposals for a Learning Disabilities, Autism and Neurodivergence Bill.
Cross-sectional survey
The research was conducted by the Striving to Transform Autism Research Together, Scotland (STARTS) group, a collaborative of researchers and autistic people from across Scotland, led by Dr Eilidh Cage, Dr Monique Botha and Dr Catherine Crompton (University of Edinburgh), and funded by the Royal Society of Edinburgh.
Together, they created a cross-sectional survey. A total of 225 autistic people from almost all council areas in Scotland participated during May and June 2022.
The survey, which also included 50 autistic caregivers of autistic children, involved ranking and rating the importance of 25 different research topics.
What are the autism research priorities of autistic adults in Scotland? - Sage Journals
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Professionally Identified and joined WP August 26, 2013
DSM 5: Autism Spectrum Disorder, DSM IV: Aspergers Moderate Severity
It is Autism Acceptance Month
“My autism is not a superpower. It also isn’t some kind of god-forsaken, endless fountain of suffering inflicted on my family. It’s just part of who I am as a person”. - Sara Luterman
09 Feb 2024, 12:50 pm
good input, thanks for posting this. It would not surprise me if results would be similar for autistic individuals the world over.
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https://oldladywithautism.blog/
"Curiosity is one of the permanent and certain characteristics of a vigorous intellect.” Samuel Johnson
10 Feb 2024, 4:20 pm
Simply waffle or a whole lot of nothing.
The only good thing stated is it recognises that we shouldn't treat all autistic people the same.
Most of the "priorities" listed have nothing to do with medical research as they are social programs.
Quote:
New research by the University of Stirling has found that autistic people’s priorities for research lie elsewhere.
Who were these people?, i bet the researchers didn't go to psychiatric hospitals or adult care homes, what type of responders did they attract?
These type of questionnaires are naturally biased against the more disabled or ID autistic people that are naturally excluded by their condition into answering these type of questions.
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"The reasonable man adapts himself to the world; the unreasonable one persists in trying to adapt the world to himself. Therefore all progress depends upon the unreasonable man."
- George Bernie Shaw
