What is #ActuallyAutistic (to me, a late identified Autistic Adult) - Finding Community in a Sea of Stigma

Back in 2016 and 2017, when a person would Google Autism or Autistic People, the search results that would populate in response were pretty abysmal.

Recently, I stumbled across a discussion on terms and verbiage people dislike hearing within Autistic community spaces.

I was surprised that a few people had mentioned they disliked hearing or reading the community phrase 'ActuallyAutistic.' These individuals felt as if the phrase 'ActuallyAutistic' was one of exclusion (instead of inclusion) because (in their opinion) the phrase 'ActuallyAutistic' excludes some of our community members (those who are not medically diagnosed) and that people who use it were trying to 'separate themselves' from non-medicalized Autistic People.

The #ActuallyAutistic community that I know is diverse, and many within the community proudly identify as 'ActuallyAutistic' to connect with others who share similar experiences (whether they are medically diagnosed or self-identified). In my experience, this is the most common usage of the term - to indicate the writer of the post is an Autistic Person (regardless of diagnostic status).

If you identify as Autistic, I respect and believe you.

It's not anyone else's place to determine who is and who isn't Autistic.

For those without "medical stamps," your self-identification is valid and your voice matters.

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Autistic People (regardless of diagnostic status):

If you are an Autistic person and you've been excluded by someone using the term 'ActuallyAutistic, 'please know that whoever used the label ActuallyAutistic to exclude you was misusing and appropriating a tag that was invented to include Autistic People not exclude them.

I've been in this community long enough (almost eight years) that I remember what this tag (#ActuallyAutistic) means, what its intended use was (and still is), and that self-identified Autistic People have ALWAYS been included in the #ActuallyAutistic community.

However, because Autistic People back then had NO OTHER TAGS that were ONLY FOR AUTISTIC PEOPLE TO USE, the #ActuallyAutistic tag IS NOT and has NEVER BEEN for non-autistic people to use (because back then, on every other Autism tag, Autistic voices were drowned out by people selling ABA and other quack "cures," or complaining about Autistic people).

#ActuallyAutistic was our microphone, it was OUR place... and for many of us, it was our ONLY space (which did sometimes cause conflict with non-autistic people, used to dominating the autism narrative, who felt entitled to "holding a mic" in our space too, talking over us, refusing to read along, without interjecting their own arguments with the Autistic people sharing their lived experiences with one another).

A person in a creepy mask is holding a finger to their lips.

For most of the internet's history (up to that point), non-autistic people held onto the power, grasping at their microphones with a death grip, refusing to allow Autistic voices to be centered in our own narratives.

Why didn't they want us to speak?

Were they afraid of what we had to say?

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Back in time...

I joined the Autistic community about eight years ago when I was freshly diagnosed (a few months shy of my thirtieth birthday).

An hour-glass on a calendar, glowing in the light.

When I was first diagnosed Autistic in the fall of 2016, my world was turned upside down. I found myself at a fork in the road.

In one direction was accepting what the doctor (and her 14-page report, which detailed my cognitive and mental health assessments) had told me - that I was, and always have been, Autistic.

My other option was to continue living in denial about what was going on within my mind (which probably would have killed me).

I tried to accept the new information, fighting the cognitive dissonance (the mental discomfort experienced when holding two conflicting beliefs) that kept creeping in. However, I found myself falling back into denial (where this new information could not help me) whenever I could find any excuse for why this diagnosis could be wrong.

The words “You are not alone” appears on a board on a teal wall.

The doctor who'd assessed me did a beautiful thing in recommending I read books written by Autistic People, steering me away from medicalized explanations and non-autistic descriptions of Autism (which I could not see myself in).

The Autistic author's words could have been my own words, leaving me feeling naked and exposed.

They were writing about things I'd experienced my entire life, which I had mostly kept to myself (because I thought nobody in the world could ever understand them).

It's like that song "Killing Me Softly" - "Strumming my pain with his fingers... Singing my life with his words... Telling my whole life with his words..."

I was finally starting to believe.

Being hyperlexic, I quickly devoured every book my doctor had recommended to me and then found myself hungry for more stories and words written by and for Autistic People.

I was unsure where to start, so I went to the same place I usually search for information (Google), which was a huge mistake.

Back in 2016 and 2017, when a person would Google Autism or Autistic People, the search results that would populate in response were pretty abysmal.

A mac laptop sits on a desk with Google open on it.

I found Autism Speaks, the CDC website, a bunch of people selling ABA and other "solutions" for "Autistic Behaviors" that "disrupted the lives of the people around them," and a slew of blogs written by non-autistic parents, caregivers, and professionals talking (complaining) about Autistic People, without including us in the conversation. This was back in the #NothingAboutUsWithoutUs days (a phrase I don't see used as frequently today).

Back then (around 2016-2018 and prior), almost EVERYTHING written and shared about Autism that "went viral" got press or traction was some non-autistic person complaining about an Autistic Person, someone looking for a cure to, cause of, or prevention for Autism, or a person selling some new (or repackaged) "solution" to "Autism" and "Autistic behaviors" - further dehumanizing and marginalizing us.

"Autism won today," they would say as if they were "at war" with what they perceived to be "the worst parts" of their loved ones, and people in the comments would cheer them on, talking about "how horrible" it was to "live with Autism" (note these were non-autistic people who do not LIVE WITH AUTISM they live with an Autistic PERSON). There is a difference.  

Even worse, many of these parent bloggers (self-proclaimed Autism Warrior Parents battling their child's Autism) had very narrow views of what Autism could be, and many were very loud and outspoken that people (like me) "can't be Autistic" because we do things they've been told their children never will.

Back then it was common for these types to write you, send you messages, telling you why they didn’t believe you were Autistic, expecting you to defend yourself or “stop taking the spotlight away from families who are struggling with real autism.”

To some people, the only REAL Autism is the kind of Autism that suffers.

Not suffering visibly enough (or in the ways people are used to seeing) will make every other presentation of Autism “not real” to them, there are some people whose own cognitive dissonance won’t allow them to expand their view of what Autism is (even though the medical text books had already expanded - back in 2013).

Cognitive dissonance can be a beast like that.

Remember earlier, when I mentioned I was dealing with a LOT of cognitive dissonance around my Autism diagnosis early on?

I was looking for any "evidence," "proof," or reason my doctor was wrong.

For a while, I got stuck on these Autism parent blogs as (false) "proof I wasn't really what my doctor said I was" because they were all I could find (other than the Autism Speaks website) once I was done reading the books on my reading list.

After weeks of reading all the medicalized gloom and doom about "Autism" and all the things "people with Autism can never do" (and also being dismissed by multiple people to whom I'd disclosed my diagnosis face to face) and reading the comments on these blogs complaining about all the "people like me" who were "being diagnosed these days" I was almost entirely convinced I'd been misdiagnosed and that there must be "something else going on with me," but then a miracle happened...

I stumbled across the ActuallyAutistic hashtag, and my path was forever altered (in the best possible way):

I found my community.

After weeks of searching and failing so badly that I almost gave up, finally, I was surrounded by the words, thoughts, and opinions of other #ActuallyAutistic People (instead of non-autistic people talking about how much of "an inconvenience Autism is" in their lives).

A desert oasis with a beautiful reflection.

Finding the ActuallyAutistic hashtag was like finding a beautiful oasis in the middle of a desert after a long walk in the heat without water- I was thirsty for their knowledge.

Eight years ago, when I was early in my journey, all the hashtags associated with Autism (except #ActuallyAutistic) were dominated by non-autistic people complaining about Autistic People (which is very demoralizing if you, yourself, are an Autistic person).

Back then, we had no place to connect except #ActuallyAutistic - a tag invented to mean that the person writing was doing so from an Autistic point of view instead of what was more common at the time - non-autistic people talking on behalf of (and often over) Autistic People.

Users of the #ActuallyAutistic tag in those days (and today) are both Autistic people who learned about their identities through medical channels, as well as those who are self-realized - because getting a diagnosis doesn't "magically" make someone Autistic.

I was Autistic even before I was diagnosed.

I needed a second opinion because I was struggling with unraveling heavily masked aspects of my identity and was unsure of my own reality at that point in time.

I also needed a medical diagnosis because I was planning to seek medical accommodation (I'd been denied because I didn't have paperwork backing up my needs) at work.

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I hope this helps,
- Lyric