Dear neurotypical people on social media,
I know that you’re passionate about autism. Maybe your child is autistic. Or maybe your sibling is autistic. Maybe your job involves autism and/or autistic people – perhaps you’re a doctor, counselor, educator, other school faculty, occupational therapist, or maybe even an author, journalist, or researcher. Or maybe you’re interested in the subject out of sheer curiosity.
I applaud you in your curiosity….that is, if you’re actually working for us, in our best interests and out of full respect for our wishes. If your hearts are truly in the right place and you don’t consider the autism spectrum to be the Next Great Plague Sweeping the Nation, then I’m all for your involvement…
…as long as you’re also stepping aside and letting us speak, genuinely listening to us, acting out of respect for us, and truly seeking to learn and support. As long as you’re not afraid to scoot over when one of us wants to step up to the mic. As long as you’re not riding on our coattails in pursuit of a quick profit or donation buck. If all is kosher, then all is calm; all is bright.
We’re certainly aware of your voices, especially on social media. I hope you’re equally aware of ours, and if you’re not, I hope you’re striving to catch up and install yourself as a lurker and respectful interactor in our community.
Social media is, after all, the great equalizer (promoted stories and tweets aside). Everyone has a voice, whether they’re on the spectrum or not. Social media (plural) amplify this voice and make it easier to search, find, and connect using hashtags.
A brief tutorial on hashtags, for those who might find it helpful – a hashtag is a word or phrase, without spaces or punctuation of any kind, preceded by what was known “back in the day” (including my day) as a “pound sign”. For example: #AutismDoesn’tEndAt5. Another example: #SheCantBeAutistic. (Both are excellent hashtags, by the way.)
When one types these into social media (they work the same way on both Facebook and Twitter), the social media platform will automatically turn these into hyperlinks (those words or phrases one can click on that will link to other cyber-destinations), and when one clicks on these, the social media platforms will indeed show all public posts (Facebook) or tweets (posts on Twitter) that include this hashtag.
The upside is that it can be a great way to find people and bring them together. And at first, I couldn’t see much of a downside until, over time, it became apparent that hashtags can be misused by other people.
Neurotypical people who post about autism usually use hashtags (or simply, “tags”) such as #autism, #autistic, or #ASD in order to nitro-boost the visibility of those posts and tweets. Since you’re tweeting about autism, autistic people, and ASD, I don’t take any issue with that.
Some of us (the people who are, ourselves, on the autism spectrum) often use those tags, too. But many of us often find that our posts containing #autism, #autistic, and #ASD hashtags are drowned out and watered-down because they’re competing with the sheer volume of posts from the neurotypical population, which is comparatively privileged.
So, a long time ago in a galaxy far, far away (well, at least, before I took the Twitter plunge), a visionary soul had thrown the #ActuallyAutistic tag onto the wall, and not surprisingly (at all), it stuck.
The #ActuallyAutistic hashtag quickly became a fine, even if low-tech, instrument for discerning posts about autism/autistic people written and posted by neurotypical people (or social media pages/accounts about autism/autistic people built by neurotypical people), and posts/accounts/pages written, posted, and created by people who are themselves on the autism spectrum.
This blunt-but-elegant tool evolved into a surefire method for finding excellent posts/tweets by and people/accounts of others who are actually on the spectrum, and connecting with them. Bonds have been established, built, and solidified. Small, intimate groups of tight-knit neurosiblings finally had an easy way to find each other. It has been bliss!
In a nutshell, nobody (spectrum peeps or non-spectrum-peeps) has the monopoly on the #autism, #autistic, or #ASD hashtags. By contrast, in a rare peekaboo of unwritten netiquette, the #ActuallyAutistic hashtag is been reserved only for autistic people, and thus, it’s hands-off for neurotypical people. This is because the usage of the #ActuallyAutistic hashtag by neurotypical people defeats the tag’s entire purpose. Someone within our own community created it for the sole purpose of separating/distinguishing ourselves, our voices, and our posts/tweets from those of people who are not on the Asperger’s/autism spectrum.
I use the #ActuallyAutistic tag myself…a lot. This is because I actually am actually-autistic. If I were not on the spectrum, then I wouldn’t be ethically allowed (nor would I feel “right”) using it.
So, when you (the neurotypical people who use this tag) do this, it comes across to us as yet one more affront, one more instance of everyday microaggression, one more attempt to talk (or holler) over us, one more jab, one more example of ableism, one more instance of co-opting our lexicon and taking away our voice. (Some of) you are already trying to co-opt our lexicon by substituting the shame-tainted “tantrum” term and substituting our “meltdown” term because it’s catchy, cool, and parent-shame-free.
Don’t be that guy (or lady).
Our lexicon is ours. Many of us are striving to differentiate because to do so is often a prerequisite (or required first step) to being independently heard. The ultimate end-goal is full acceptance and accommodation, but right now we’re still in the separate-but-(un)equal stage.
I realize that there are no written rules or social media terms of service the govern hashtags or dictate which ones you can and cannot use. Social media platforms will not suspend your account for hijacking other peoples’/communities’ hashtags and using them as your own. You will not go to prison or pay a fine.
But you will, over time, erode the hashtag’s purpose, cause confusion, make enemies, and generally look like an ass.
Don’t be that person (did I say that before?).
A quick Occam’s Razor-esque Tutorial of The #ActuallyAutistic Hashtag:
- If you’ve been diagnosed as being on the Asperger’s/autism spectrum, the hashtag is yours to use.
- If you otherwise know or strongly suspect you are or might be on the Asperger’s/autism spectrum, the hashtag is equally appropriate for you as well.
- If you’re the non-autistic parent of an autistic child, the hashtag is off limits; it’s not yours at all if you’re not on the spectrum yourself.
- If you’re a non-autistic (allistic) healthcare or education professional, the hashtag is off limits; you’re not autistic yourself.
- If you’re a non-autistic researcher, journalist, or author – even if you study/publish/write about autism – forget the hashtag; it’s not for you.
- If you are trolling the Asperger’s/autism spectrum community or any of its kindhearted members–even if you’re on the Asperger’s/autism spectrum yourself (yes, unfortunately, it happens)–the tag is NOT for you, either. Yes, you may be on the spectrum yourself, but I don’t care; you may not use it to bash other members of the community. The hashtag is not a weapon of hostility; it doesn’t exist for you to use it against us in a personal attack or vendetta. I’m sorry that you’re miserable, but go away. I didn’t screw up your life, and neither is a hashtag. Oh, and if you could quit trolling the rest of us altogether, that would be greeeeaaaat….mmmm’kay?
- (The previous point also applies doubly to the (hopefully few) angry, bitter, resentful, irrational, and overly-emotional/immature neurotypical parents of autistic children out there who have also begun to troll us recently. You will get your own post. You’ve been warned.)
Some members of the Asperger’s/autistic community might go so far as to say that a neurotypical person supportively quoting an Aspergian/autistic person shouldn’t use the hashtag either, since they themselves are not on the spectrum. However, I tend to give the non-autistic supporters a little latitude; as long as they are indeed quoting (in acceptance and support, as opposed to mockery or criticism) an Aspie/autistic person (for example, by posting a link to an article, blog post, or book written by someone who is on the Asperger’s/autism spectrum), I tend to appreciate that support and that addition to our community, and I tend to look the other way, making an exception to the “Hands Off Our Hashtag, NT People” rule.
I do admire the autism spectrum community members who call out the neurotypical people who use the #ActuallyAutistic hashtag. I’m pretty sure we’ll continue to do so directly-but-politely, since it’s quite possible for a neurotypical person not to know better and not to realize the ramifications of using the hashtag not built for them. But I’m glad that we tend to speak up and inform them of their gaffe.
Some of you might be reading this and thinking, “what the hell is it this time? Why is she getting worked up about….social media hashtags?”
I agree. First World Problem and all that. Please allow me to explain…
Our community is growing weary of neurotypical parents (AutismMoms(TM) or the occasional AutismDad(TM)), non-autistic researchers and authors, “official” autism spectrum “experts” (who are themselves non-autistic), and many other people who are not on the spectrum, but somehow feel entitled to barge in and take over, ransacking our terminology and diluting our social media news feeds. The #ActuallyAutistic hashtag was designed specifically to filter that shizz out, and find more of our own, so that we can form long-overdue, desperately-needed, and often-lifesaving connections (which the neurotypical population often takes for granted, since there’s a certain amount of privilege inherent in living in a world already in sync with the way you operate).
So to those of you who are still doing that, or thinking about doing it, STOP NOW, leave the #ActuallyAutistic hashtag alone, and be gone.
~ One member of the #ActuallyAutistic community.
This concludes my PSA (Public Service Announcement) for the day.