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Why Many Autistic People Don't Celebrate Autism Awareness Month

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April is Autism Awareness Month, but most self-advocates don’t celebrate it. If one is new to the autistic community, one might be surprised by the pushback against these “awareness” efforts. The month-long campaign has a 51-year history. It was launched in April of 1970 by the Autism Society, which was founded by parents of autistic children. Each year, the controversial organization Autism Speaks promotes the month as one of its awareness campaigns, along with April 2, which is World Autism Day. The majority of the people who celebrate Autism Awareness Month happen to be parents and family members.

In vibrant and active autistic Twitter spaces, self-advocates cite many reasons why Autism Awareness Month is problematic. Chief among them is the concern that organizations and people not representative of the community are usurping April without their best interests at heart. For example, the account known as “The Neurotypicality Research Institute,” a parody handle that centers autism as the default neurotype, explained the issue thus: “Every year, crowds of people descend on social media to celebrate ‘Autism Awareness Month.’ Spurred on by groups who often operate with little autistic input, they flood community hashtags and threads with uninformed and sometimes hostile posts.” In other words, neurotypical users making autistic spaces unwelcome hardly advances the purpose of awareness. “No more autism awareness for me,” pronounced a Twitter user who goes by Autistamatic. “It’s got us nowhere and made unscrupulous people way too much money.”

Autistamatic is referencing the group Autism Speaks, whose 2018 budget allocated a little less than half of its funds to awareness campaigns, compared with only a minuscule portion to the community itself, and whose public stands against self-advocacy have made it the bete noire of many autistic people.

In addition to panning Autism Awareness Month, many self-advocates argue that acknowledgment of their condition is not enough. The Twitter user, “Mawiska goes back to sleep,” explained that she prefers that April’s efforts center acceptance. “I wanna be more outspoken this month saying how wrong the A$ [Autism Speaks] mindset is and I wanna reclaim the whole month and turn it into Autism Acceptance Month rather than “awareness.”

On Twitter, the consensus among the community is that recognizing autistic people, not trying to change them, is a more worthy goal than awareness. “Autism Awareness is: ‘I am aware that you are doing this thing because you’re autistic, so instead of shouting at you I’m going to gently try and shame you out of it,’” said Erin Ekins.

The idea that autistic people should act like neurotypicals or even be eliminated prenatally has been something that has been advocated by Autism Speaks. To counter such views, the Twitter user, “Ms. Deathwish,” pronounced, “This is why I’m all about autism EMPOWERMENT.”

While a portion of the community desires to move to “Autistic Empowerment Month,” there is no consensus on the ultimate goal for Autism Awareness Month. For instance, Twitter user Erika Heidewald explains her position thus: “I know people are really trying to change Autism Awareness Month to Autism Acceptance Month but honestly, I don’t love it because it still feels negative to me. It’s setting the bar too low. It’s like Put Up with Us Month. We’re fucking cool as hell, I want Autism Pride Month.”

Phrased in this manner, “Put Up With Us Month,” doesn’t seem like an appealing goal for the acceptance, empowerment or pride of autistics. To the contrary, Twitter user, “autistictic” is not in support of such a change. “Autism Awareness Month has been Autism Acceptance Month for years in the autistic community. Years of hard work moved this into general society and it‘s finally catching on. Acceptance is important. Autism Acceptance Month is important,” this autistic individual pronounced. “To me, acceptance doesn‘t just mean tolerating people‘s existence. It means truly accepting us as we are.”

Even if self-advocates ultimately disagree, on this much they are of one mind: The majority of those on the spectrum are tired of neurotypicals trying to change them and making them mask through feigning eye contact and not stimming. They are tired of organizations that aren’t representative of the community profiting from them. And they are tired of people wanting to cure them of their neurodiversity. Any month surrounding autism ought to remember the perspectives of the people it claims to serve.

Getty image by Romolo Tavani.

Originally published: March 29, 2023
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