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Beyond the “Cause”: What the Autistic Community Actually Needs

Lyric, in the door of the travel trailer they and their partner David live in. They’re wearing a black shirt with grey sleeves and maroon pants. In the background is tall pine trees.

Lyric, in the door of the travel trailer they and their partner David live in. They’re wearing a black shirt with grey sleeves and maroon pants. In the background is tall pine trees.

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am Autistic, not a “person with Autism“ – because “without Autism“ I would not be the same person.

Being Autistic impacts every aspect of my essence, from my interests, strengths, and weaknesses, to the people and activities I enjoy immersing myself in (and the depth with which I dive into my passions and my relationships with others).

Being Autistic is a whole body experience, one that is intertwined with every facet of my identity, including the way I move through the world (physically and mentally), as well as how I engage with social constructs (like gender, time, money, and the way I view the world and its systems).

Lyric, in the door of the travel trailer they and their partner David live in. They’re wearing a black shirt with grey sleeves and maroon pants. In the background is tall pine trees.

Autism is not something that could be removed from me without completely changing who I am as a person and how I perceive the world around me.

Despite what our government wants the world to believe about Autistic People, my life as an Autistic Person is not a tragedy, and (even if it were possible, which it isn’t) I’d never want “a cure“ for being Autistic (or to give up my Autistic brain).

While some who share this Neuro-Type with me do prefer to call themselves “people with Autism“ (and I don’t see it as my place to correct them), in my own writing I do not use this language, due to my own preference, and because I firmly believe that the use of this type of description for Autistic People can lead non-autistics to falsely believe that Autism is something that could be “removed“ from an Autistic Person, enforcing the ideals that non-autistic people are the baseline of society (something I strongly reject).

I personally feel the phrase “person with Autism“ is dehumanizing because:

In recent months, the Trump Regime’s “Make America Healthy Again“ (MAHA) movement’s main conversation around Autism and Autistic People has been about finding what causes us to be Autistic and how to “cure Autism,” or how to “prevent“ future Autism (how to stop more Autistic People from being born).

This is dehumanizing to Autistic People because:

This “prevention“ mindset directs public attention, money, and research away from the things that actually help Autistic People live better lives.

I’ve seen where this type of mindset leads us.

Nine years ago, when I was newly diagnosed as Autistic, there were Facebook groups full of what we called “Bleachers” (parents who were convinced, falsely, that Autism was a parasite that could be removed from their Autistic loved ones, by giving them bleach enemas and other non-scientific means), encouraging other parents of Autistic children to do the same.

If we go back even further, we find a dehumanizing quote from Ole Ivar Lovaas, one of the founding fathers of ABA (Applied Behavioral Analysis), in the January 1974 issue of Psychology Today magazine:

You see, you start pretty much from scratch when you work with an autistic child. You have a person in the physical sense—they have hair, a nose, and a mouth—but they are not people in the psychological sense. One way to look at the job of helping autistic kids is to see it as a matter of constructing a person. You have the raw materials, but you have to build the person.

While Lovaas is long gone, his ideals of building a person and programming Autistic People to be “socially acceptable“ are still widely embedded into practices used to forcibly assimilate Autistic People even today (and into the marketing materials of these and other assimilation-based programs, that focus on modifying Autistic individuals to fit into society without modifying society’s systems to better accommodate Autistic People).

When we focus on “removing Autism from society,” we are distracted from the actual needs of Autistic People, diverting funds that could be focused on inclusion and quality-of-life research.

You can read more of this one on Substack and Patreon.

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