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Lydia X.Z. Brown, a policy counsel at the Center for Democracy & Technology known as Autistic Hoya online. Photos: Gabriella Demczuk

Autism Is an Identity, Not a Disease: Inside the Neurodiversity Movement

Activists argue that rather than trying to ‘cure’ or treat the neurodivergent, society should learn to accept, appreciate, and accommodate their needs

At first glance, the Autistic Self Advocacy Network (ASAN) annual gala in November looked like many a Washington, D.C., nonprofit fundraiser. Approaching the swank ballroom of a downtown hotel, I saw the standard check-in table by the door, and coat check nearby.

“Disability culture is so full of joy. We dance together; we support each other; we share pictures; we make families together.”

Activists are demanding that neurodivergent people be treated as decision-makers in the medical community, rather than just the subjects of “expert” decisions. They criticize prevailing disability therapies as designed to make people appear non-disabled, rather than supporting disabled people’s priorities. They’re clamoring for greater representation within government bodies that oversee research, funding, and policy. They’re advocating for policy change and seeking leadership roles in government, academia, and business. In Pennsylvania, community organizer Jessica Benham recently won the Democratic nomination for House District 36, in her bid to become the first openly autistic woman elected to the state legislature, on a platform of infrastructure and accountability to voters, especially the most marginalized. “Autistic people can be leaders,” Benham told me over coffee in the South Side Flats section of Pittsburgh late last year. “And I’m saying that not just with my words but with my actions.”


For many autistic adults, Autism Speaks is the enemy, and represents the goal of eliminating autism rather than embracing autistic people as part of human diversity.

Since then, Autism Speaks has become a juggernaut in the autism community, pulling in $60 million in annual revenue. (Compare that to ASAN’s annual budget of $1.1 million.) Every April, the nonprofit lights up landmarks around the country, such as New York City’s Empire State Building and the CN Tower, as part of an awareness-building campaign. Its blue puzzle-piece logo is arguably the most visible symbol of autism since Dustin Hoffman’s 1998 portrayal of Raymond Babbitt in Rain Man.

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Jessica Benham recently won the Democratic nomination for Pennsylvania House District 36. If she wins in the November general election, she’d be the first openly autistic woman elected to the state legislature.

Activists argue that rather than disabled people trying to conform and pass unnoticed among the general population, the world needs to change to accept, appreciate, and accommodate the needs of millions of Americans.

“I’m developmentally disabled and I’m psych disabled… That’s not something that needs to be approached with the intent of trying to fix me… I’d like to ask, how are you engaging with people who have these disabilities? What are our priorities in not being medicalized and therapized?”


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Margaret Price, PhD, an Ohio State University professor who experiences post-traumatic stress disorder and wrote the book Mad at School, about mental disability in higher education.


Written by

Journalist writing about science, children, mental health, race, gender, disability, education and related topics. Author of The Good News About Bad Behavior.

Journalist writing about science, children, mental health, race, gender, disability, education and related topics. Author of The Good News About Bad Behavior.

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