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Autism Community Split in Four, Says NIMH Chief

April 11, 2014

The autism community is conflicted in many ways, most obviously between those seeking a cure versus those who see the autism spectrum as a natural state of neurodiversity. Dr. Tom Insel, director of the National Institute of Mental Health, codified those divisions even further in his Autism Science Foundation 5th Anniversary Celebration talk, “From four kingdoms to one community for autism.”

Dr. Insel laid out the four “kingdoms,” or schools of thought:

Autism as an illness. Those with this view see autism spectrum disorders as a neurodevelopmental disorder. This group is looking for genetic factors, or biomarkers, with a cure as the goal.

Autism as an injury. This camp sees ASD as a “response to an environmental insult of some sort,” making autistic children the “canaries in the coal mine” who might just be warning us of the effects of toxins or even climate change. Here, the goal is prevention.

Autism as an insight. This viewpoint sees autism “as a window into the social brain.” Here, the goal is comprehending the fundamentals of how the brain grows and functions.

Autism as an identity. Here, autism is seen as a disability. Adults on the spectrum have become self-advocates who focus on functional outcomes. The goal is inclusion, with advocates seeing themselves as part of a civil rights movement with the motto “Nothing about us without us.”

Dr. Insel then raised another way of looking at things: “Maybe there really are at least four different disorders involved—we should be talking about ‘the autisms.’” From this perspective, he said, “there are people who may be more in this illness kingdom” versus, say, those for whom identity is a better approach.

Dr. Insel noted that the divisions within the autism world mean it’s “not the same type of [unified research] community that works on cystic fibrosis or Type 1 Diabetes.” He said the problem is so serious, great scientists are saying they have a lot to offer but this is “a community I don’t want to deal with. It’s too difficult.”

The enormous conflict between these four very different groups needs to be overcome if progress is to be made, he continued. He emphasized the need for finding shared interests to unify the community, such as the demand for greater services for—and understanding and recognition of—adults on the spectrum. And scientific efforts that bring together the far-flung kingdoms are crucial, he concluded. “Science has a way of letting us understand.”

Tagged with: Science and Research, Self-Advocacy