Actually Autistic: meaning + origin

I’ve seen people suggest boycotting the hashtag and phrase “Actually Autistic”, so here is my case against that path..

Short answer: You’ll be undoing a decade of activism I and other autistic self-advocates advocated for.

Origin of #ActuallyAutistic

“Actually Autistic” started as a hashtag in response to the autism hashtag being overrun by non-autistic caregivers of autistic children and harmful, anti-autism organizations stressing the need for a cure by using fear marketing.

I remember when it started on Tumblr. We needed a hashtag to use for the autistic community, because non-autistic people were so aggressively pushing harmful autism stereotypes.

The non-autistic/autism community (different from the autistic community) would join together in groups and

• dominate the #autism hashtag
• harass autistic people posting in the hashtag
• report autistic people’s posts for abusive/misleading/spam/self-harm/etc. content so it was removed

And if you think I’m kidding, I’m not. I’ve written about allistic privilege and even had the woman come onto MY BLOG after blocking me after she got my account suspended (because SHE reported ME for harassing HER).

The autistic community needed a safe space on social media to hang out in and share our experiences, thoughts, ideas, and life in general.

People from the autism community would still come and harass us, but it was far less.

#ActuallyAutistic became a source of comfort, especially since we could reply to posts from non-autistic people spreading autism misinformation like, “#Any ActuallyAutistic people able to unpack this/help/etc.?”

And autistics would show up and help each other combat the vitriol from non-autistic people who didn’t believe we were “autistic enough” to share about our experiences being autistic on the internet.

What ActuallyAutistic means

“Actually Autistic” means someone is autistic or suspects they’re autistic, rather than being a non-autistic person claiming to have personal autism experience.

Ergo, it’s always been an inclusive phrase.

Recently, there have been questions about its origin and discussions about whether the phrase “Actually Autistic” excludes self-diagnosed autistics.

While the allistic community had issues with self-diagnosed autistics and even challenged the validity of diagnosed autistic peoples’ diagnoses, this wasn’t really an issue years ago.

I was an active autistic self-advocate for years and never ran into the superiority of diagnosed vs. self-diagnosed autistic people except when interacting with Aspies.

“Asperger syndrome” is outdated and has its own controversies because of its ties to Nazism, so I rarely use the term “Aspies”.

I remember autism forums for autistic people would be overflowing with heterosexual Aspie men and allistic wives complaining about their Aspie husbands…so I didn’t hang out there that much and stuck to Tumblr and Twitter.

However, the autistic community at the time when “Actually Autistic” came about stressed the importance of

1. Including all autistic people as “autistic”, instead of separating/creating other diagnoses because allistics took issue with the word “autism” (e.g. “highly-sensitive people”/empaths, Aspies).
2. Acknowledging the privilege and risk of seeking/achieving diagnosis, especially as mandatory autism registeries came about and diagnosis can make adoption challenging.

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I’m not claiming the autistic community back then was a utopia — rather, the things people focus heavily on today were a default back then.

Autistics didn’t care if you were officially diagnosed, seeking diagnosis or not pursuing diagnosis back then.

The goal/intention/purpose of “Actually Autistic” was always to be inherently accessible and welcoming for the autistic community — and discouraging for people who weren’t autistic and liked to speak over autistic people.

Organizations that partnered with the autistic influencers of that time didn’t ask us if we were diagnosed before we could be on their panel or featured as a “rising autistic voice”. They emailed us asking if we were interested, and we said yes.

It was different then. Less people cared about gate-keeping the community.

I don’t know exactly what caused the community to change so much — what influenced it to change so much — that the origin of this beloved hashtag would be up for debate and even suggested to be boycott?!

All I know is when it was created, why it was created, and how quickly it gained popularity among autistic people across every single platform on the internet.

If you want a symbol for autistic pride with history, it’s #ActuallyAutistic — because we displayed it with pride everywhere, every chance we got.

Because it not only meant that we weren’t allistic caregivers giving commentary on autism — it meant that we, autistic people, are here to stay and share our story and be loud, even if allistics had problems with it.

I’d say you could call it our battle cry, but I’m a pacifist…so what do I know?