Autism research aims are misguided, says expert --[Reported by Umva mag]

October 18, 2024—Autism research should focus less on discovering the condition’s causes and more on potential policies and resources that could support autistic people to lead healthy, fulfilling lives, says Harvard T.H. Chan School of Public Health’s Ari Ne’eman.

Ne’eman, assistant professor of health policy and management, was among the experts quoted in an October 14 Vox article about the different visions for autism research. One emphasizes scientific research, primarily using mice, to discover the underlying biology of autism. The other emphasizes research that would pinpoint resources that would be most helpful to autistic people—particularly those living with severe autism—in their everyday lives. Such resources could include caregivers, assistive technologies, higher education, jobs, or housing.

“Autism research was really built with the assumption that the goal is a world without autism,” said Ne’eman, who co-founded the Autistic Self Advocacy Network. Organizations like the Interagency Autism Coordinating Committee, a federal group that advises policymakers on what autism research to fund, have in recent years welcomed new members who themselves are autistic, providing self-advocates a new level of influence, the article noted. Still, the vast majority of funding and research remains dedicated to lab science—a priority that Ne’eman says doesn’t well represent people with autism or the neurodiversity movement at large.

“The average autistic person, as well as the average family member, doesn’t wake up in the morning thinking, ‘Have they found a better mouse model?’” he said. “Those with the most severe impairments are especially poorly served by research that does not relate back to their needs.”

Read the Vox article: What went wrong with autism research? Let’s start with lab mice.

Image: iStock/Iryna Spodarenko

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