Let’s talk about something that has been doing the rounds again: the Actually Autistic hashtag. If you’re unfamiliar with it or have seen it and wondered what it means, I hope this helps.
Disclaimer: Now, I don’t claim to be an authority on the subject, but I was there over a decade ago when it all started. I engaged with countless people across various platforms who shared similar experiences and saw firsthand why we needed #ActuallyAutistic. My involvement wasn’t just as a participant but also from a professional standpoint. I was involved with local Autism services both as a peer support worker and a consultant, giving me a nuanced perspective on its development and the general landscape. While I’m not speaking for anyone whose experiences differ, I aim to offer insight into the origins and significance of the tag for those who might not be familiar with its history or were not involved in these circles at the time.
Right, with that out of the way, the Actually Autistic hashtag was born out of necessity. You see, back in the day, certain subsets of social media, such as groups or hashtags, were dominated by voices that weren’t actually autistic. These were well-meaning parents, professionals, and others who, while involved, weren’t living the autistic experience. Sometimes, their narratives focussed on how dreadful it was to care for their autistic children. There was very little mention of the lived experiences of autistic individuals. Imagine seeing that as an autistic person when all you want to do is find somebody who understands you. It hurt—a lot.
We needed a space where we could exist and be unapologetically autistic without being drowned out by those who, quite frankly, didn’t get it. “You can’t have autism. You’re nothing like my 5-year-old son”. Well, no, I’m a 32-year-old woman, Tracy, but thanks.
So, the #ActuallyAutistic tag emerged. It was to ensure autistic voices were front and centre in conversations about autism, and it allowed us to find each other and build connections.
It was a way of saying, “Hey, we’re here, we have something to say, and our experiences matter.” It’s about self-advocacy, plain and simple. The phrase “Nothing about us, without us” perfectly sums it up. We’re the ones living this life, and when we can, we want to speak for ourselves.
And yes, that includes self-diagnosed people. Diagnosis doesn’t make someone more or less autistic—it’s the experience that counts. So, if you identify as autistic, whether you have a piece of paper to prove it or not, you belong in the #ActuallyAutistic community.
We don’t want to shut out non-autistic voices altogether. No way. Parents, allies, and professionals have their place in the conversation—especially when it comes to advocating for their children or sharing their experiences. But the key is understanding that there’s a difference between sharing your perspective (and knowing the right time and place to do that) and speaking over autistic people.
Back when #ActuallyAutistic started, the autism hashtag was overflowing with non-autistic ideas. It got to the point where wading through the damaging content that was circulating was borderline traumatic. The tag was a way for us to carve out a safe space, free from the “tragedy narrative” and filled with honest conversations about what it’s like to be autistic.
When I first received my autism diagnosis, there weren’t many spaces for people like me—people figuring out what it meant to be autistic and trying to find our place in the world. The #ActuallyAutistic tag changed that. It gave us a platform to connect, share, and grow.
While the #ActuallyAutistic tag might seem less necessary now than it did when it first emerged, and perhaps these misconceptions are a positive sign of how far we’ve come, it’s important to remember its roots and the progress we’ve made. As our community has grown and more spaces have opened up for us to share our experiences, some might feel the tag’s role has diminished. Still, its continued relevance lies in its ability to remind us of the journey we’ve been on and the importance of keeping our voices central in conversations about autism.
Stay unruly, stay informed, and most importantly, stay yourself. 🌈
