ActuallyAutistic Is For Both Formally Diagnosed People And Self-Diagnosed People

People have recently suggested other hashtags and group names in the fediverse. This will only compound the problem.

If there is one thing that us autistic people do not like, it is allistic (i.e. non-autistic) people talking for us. At the same time, it does make sense for people who have to care for autistic people to be able to talk about issues they may be facing. So it is desirable to distinguish the two cases. We want to know when autistic people are talking about their own experience, and when people who are not themselves autistic talk about issues that the people who are autistic deal with.

I’ll note here that this desire is not arbitrary. The history of the medical science behind our understanding of autism shows that as long as we let allistic doctors, and allistic people in general, speak about the autistic experience, we are going to get a skewed view of what autism is. It is when autistic doctors started examining autism that a lot of the earlier sexism, racism, ableism, etc. were uncovered.

In the following argument, I’ll just talk about the hashtags, but the same logic goes for the groups.

Early on, everybody was using the autistic and autism hashtags. The problem with this is that both the voices of people who were actually autistic, and the voices of people who were talking about, or for, actually autistic people were mixed. You couldn’t readily know who was who.

I don’t know how it happened exactly, but eventually people who were actually autistic got fed up with the lack of distinction and created the ActuallyAutistic hashtag. By using this tag instead of the autistic or autism hashtags, people would know that the person speaking is autistic. So far, so good.

However, once in a while, someone comes along, looks at the ActuallyAutistic hashtag, and is hesitant to use it because they are either self-diagnosed, or they are in the process of self-diagnosis. This can range from mild annoyance, to a full on angry rant.

I’ll note here that I’m self-diagnosed. I do not recall being confused by the hashtag ActuallyAutistic. However, my memory is not great, but if I was confused, it was for a very short time. I quickly realized that people can use it even if they are self-diagnosed. I definitely did not go on a full on rant about it.

In order to allay the qualms of those who would think that the ActuallyAutistic hashtag is only for people who have a formal diagnosis, people have recently been suggesting alternatives:

  • AllAutistics
  • AutisticMe

In my view, these hashtags do not solve anything. The problem with the ActuallyAutistic hashtag is the not “actually” part but the “autistic” part. Am I autistic? I’m self-diagnosed, so I must not really be autistic, and I can’t use the hashtag. The exact same logic applies to AllAutistics, and to AutisticMe. If I doubt my autism diagnosis, because I’m self-diagnosed, what right do I have to use these tags?

Note that the autistic and autism hashtags do not suffer from this problem. How is anyone going to be able to talk about autism and not be allowed to use these hashtags? Here’s an analogy. If someone wants to post about a Labrador dog, they can use the hashtags dog, and labrador. However, if they want to talk about a chihuahua, and they use these very tags, people are going to take them to task over it.

I absolutely guarantee you that people are going to come, look at the AllAutistics and the AutisticMe hashtags, and have the very same issue that people have with ActuallyAutistic hashtag. The set of people having a problem with the new tags won’t be the same set of people who had a problem with the old tag, but they are going to be there.

There would be a way to make sure that people understand that a hashtag applies both to self-diagnosed people and people with a formal diagnosis. It would be to use something like SelfDiagnosedAndFormallyDiagnosedAutistics. However, this hashtag is very unwieldy, even if we replace “diagnosed” with “dx.”

I think multiplying the hashtags is a self-defeating proposition. For one thing, the multiplication of hashtags merely adds to the confusion without removing any of it. In addition to this, the ActuallyAutistic hashtag has the weight of history behind it. Devon Price mentions it in Unmasking Autism. There are probably other resources out there that mention it too. More importantly, it is a cross-platform label that autistic people immediately recognize. Not so for AllAutistics or AutisticMe.

I cannot support this multiplication of hashtags. However, I’ll go where the community leads me. After all, I did not pick the ActuallyAutistic hashtag either. Do note that I said the community, not a small subgroup of this community.

So yes, if you are self-diagnosed or in the process of self-diagnosis, you can absolutely use the ActuallyAutistic hashtag.






3 responses to “ActuallyAutistic Is For Both Formally Diagnosed People And Self-Diagnosed People”

  1. Aerliss Avatar

    @yourautisticlife I pretty much agree with everything here, but wanted to add to this bit;"It would be to use something like SelfDiagnosedAndFormallyDiagnosedAutistics. However, this hashtag is very unwieldy, even if we replace “diagnosed” with “dx.”"Every time I read "formally diagnosed" I think "previously diagnosed but not anymore, maybe the diagnosis didn't fit?" 😅

  2. Zumbador Avatar

    @yourautisticlife Yeah I think I agree.Hashtags are always going to be a bit blurry, and we can't control how people read them, or how they are misunderstood, no matter how carefully we craft them, or how many wikis we create!More important to me is to repeatedly state the message that self diagnosis is valid. And that requires more than a "#" and a few letters to bring across.

  3. Benjamin 🏳️‍⚧️🏳️‍🌈 Avatar

    @yourautisticlife it took me about five years to engage with the autistic community because I was (long story but mostly) self diagnosed. So I felt like I didn’t have the experiences actually autistic people would share and I shouldn’t take up spaceNew hashtags wouldn’t have fixed that. The community as a whole became (and is becoming) more welcoming and communicating better about self dx and we just need to lean into that process