People with autism and learning disabilities are “systematically excluded” from research, say scientists.
Dr Audrey Thurm is a director at the US National Institute of Mental Health (NIMH).
Professor Simon Baron-Cohen insists bias against including people with learning disabilities in autism research is not just a problem at Cambridge, but in “the field” as a whole
She says figures show that between 31 per cent and 50 per cent of people with autism have a learning disability.
But previous findings show that just 6 per cent of those participating in research have a learning disability.
Exclusion in four out of ten studies
Thurm and her team looked at bias in current studies. Heading a team of US researchers, she found that more than four in ten (42 per cent) of autism studies excluded those with learning disabilities.
She said studies often exclude people with learning disabilities because they specify that those with genetic and neurological conditions cannot take part. The studies also exclude those who were born prematurely.
These are often risk factors for learning disabilities.
Also, some studies need people to read, write, communicate, take in directions and attend for long periods.
The situation with Cambridge research
Professor Simon Baron-Cohen is the director of the Autism Research Centre (ARC) at Cambridge University.
Biomedical charity Thinking Autism has previously accused the ARC of failing to include people with learning disabilities in research.
Baron-Cohen said those with learning disabilities may be excluded because of the growth in online surveys.
However, parents and carers can respond to these, he added.
Baron-Cohen said bias is a problem throughout research, not just at Cambridge.
‘Systematic bias’
In a statement, Thinking Autism said there is systemic bias against those with the “highest support needs, the most comorbid conditions, and the shortest life expectancy”.
Thurm and her team published their commentary in the Journal of Autism and Developmental Disorders.
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Published: 13 November 2021
