Self-Diagnosed Autism ... and TERFs
Last night - as is usual in the lead up to Autism Awareness Month - I was subjected to a barrage of abuse from a couple of “warrior parents” on Twitter.
This time around, it was because these two were intensely triggered by my statement about Autism in the media:
Autism Awareness Month Statement
“Well, April is about to start.
While this mostly means spring, fresh air, going outside, spring break, etc... for autistic people, this is the most stressful, dehumanizing, and awful time of the year.
You see, April is "Autism Awareness" month.
You would think it would be a month about us, learning about us, coming to an understanding and maybe learning to have empathy for autistics, but - in general - that's not the case.
No, April ends up being a month to center the parents of autistic children.
You know, because being centered 11 other months of the year isn't enough.
April is when we see an increase in well-meaning (I hope?) posts about autism, featuring the parents of autistics, rather than autistics themselves.
It's the month where these parents become *extra* vocal, extra "oppressed", and extra vicious towards autistics online.
This April, I would like to ask those reading to consider whose voice is being elevated in any "autism" media you see.
When you read an article about an autistic person, and the only people quoted are the allistic people adjacent to that person, ask the reporter/publication why.
When you see articles about autism, autism policy, etc, with no autistics quoted, ask why. Pressure these publications to actually include those that they are writing about.
Know that even when a person is nonverbal, that doesn't mean they don't communicate.
Know that adult autistics should be given the respect and autonomy to speak about our lives and our experiences, and not be spoken over by allistic parents and "professionals".
Know that no one knows more about autism than AUTISTICS.
I was hoping to have my new blog in place by April, but unfortunately, time (time? what's that?) got away from me.
I will be sharing posts from my original blog, as well as from other autistic articles. If you see anything that speaks to you, or makes you think... please share it.
If this month is to be about "awareness" - rather than the *acceptance* that we've been asking for for years - then hopefully that "awareness" can come straight from the sources.
Apparently, I am the devil incarnate for having such radically offensive views like “If you’re going to write about autism, talk to autistics”.
Warrior Parent Patterns
As I went through their tweets to report the barrage of abuse they were hurling at me, I noticed that both trolls shared some characteristics of other anti-autistic bigots.
So, I’d like to discuss those, getting to the point of this post.
One of the accounts belonged to a virulent, mega toxic TERF.
Not entirely surprising, many of these people tend to be. As I like to say, bigotry is like autoimmune disease, once you’ve got one form...
This may sound like a totally separate issue from what I want to talk about here in this post, but it’s actually not. More on that in a bit.
Attacking Self-Diagnosed Autism - and Autistics
Both accounts had a lot of hatred and - and bile to spew - about self diagnosed autistics.
Now, full disclosure - I was formally diagnosed when I was 15 or 16, and none of their accusations to the contrary have the ability to change that fact.
However, I do find it interesting that these people have a habit of both attacking those who identify as having been self-diagnosed, AND accusing the rest of us of being self-diagnosed.
While the entire episode last night was a pretty clear illustration of exactly the sort of thing I was talking about in my statement, I’d like to address this part, specifically.
Silencing of Autistic Voices
A huge problem in the autism/autistic communities is the silencing of adult autistics.
As I’d addressed in my statement, a lot of the time this happens as exclusion from media.
Articles about autism don’t tend to quote autistics, even if the article is about a specific autistic person.
In addition to that, we see a lot of these “Warrior Parents” out there, looking for any autistic with a platform to pick a fight with.
They get extremely offended at the idea that our voices, views, and experiences can be out there at all, and work incredibly hard to silence us.
This can come in the form of bullying - sometimes as individuals, sometimes as an organized group attack on a specific autistic.
This can also come in the form of an attempt to “discredit” autistic voices - and this is where the “self-diagnosed autistics” accusation comes in.
First, a bit of a tangent:
Autistic Parallels to the LGBTQ+ Community
I’ve always been fascinated by the parallels that autistic and LGBTQ+ lives take.
In the early years, it’s being bullied at school and at home... for being "different".
It’s being born in a way that doesn’t line up with the expectations and dreams of the parents, and the abuse that we face.
For many, it’s ABA / Gay conversion therapy. While gay conversion “therapy” is far less accepted these days, it’s the same thing as ABA - the abusive therapy autistic children are forced to endure.
It’s the same methodology - psychologically breaking down the victim until they’re defeated, and start to “mask” themselves, acting more like the “desired” outcome - straight / allistic.
They both lead to PTSD, c-PTSD, depression, a lifetime of abuse, and - in many cases - suicide.
Not surprising, really, that one is just a repackaged version of the other... having come from the same creators.
Masking, remaining closeted, having jobs/etc in jeopardy over disclosure... are common themes to both groups.
Perhaps these commonalities explain the high rate of TERFS, among the “warrior parents” that attack us.
TERF - “Trans Exclusionary Radical Feminist” for those who many not be familiar with the term - is a particular flavour of bigot that attacks trans people.
To them, there is male (XY), there is female (XX), and NOTHING ELSE.
No room for the many cultures - and species - that observe more than 2 genders, no room for intersex people, etc.
Nothing makes these people more mad than people living as their authentic selves, and dedicate a LOT of toxic energy in fighting against those whose existence they “disagree” with.
Anyway, I could rant all day about these awful people, but let me try and get back to the point of this post:
I do see parallels between their hatred of trans women, and their hatred of autistics - specifically self- diagnosed autistics.
In both cases, they are heavily invested in denying - and working to suppress - the autonomy of a marginalized group.
They deny people the right to know themselves, and live their lives authentic to who they know themselves to be.
Anyway, I’d like to drop my views on autistic self-diagnosis, as a formally diagnosed autistic. You know, as some education in the name of autism “awareness” month.
Formal DX of Autism
Now - I don’t believe myself to be “greater than” those who are self diagnosed by virtue of my formal diagnosis, but I Think I should put it out there as cred.
Consider it using my privilege for good.
SO. Let’s discuss the problems associated with formal dx.
Most places won’t cover DX (Bizarre, with how medicalized autism is in public discourse!), and assessment can be prohibitively expensive.
Even for those who have it covered / can afford it, there can be huge waiting lists. Assessment comes with many barriers.
One thing I don’t see discussed much is another barrier to getting DXed as an adult - a lifetime of masking.
Personally, I “read” as far less autistic now (assuming certain conditions, anyway), than I did when I was DXed more than 20 years ago.
I think right now I’d “pass” - mask - my way out of a Dx if I tried, honestly.
Now, while I - and many other autistics - can pick one of our own out from across the room, even when they have a lifetime of masking, we can’t expect the same of allistic professionals.
Bias in Assessment Criteria
The criteria used to assess autism is based on stereotypes normed against young white autistic boys.
Now, not only do adult white autistic men not tend to present the same as that norm, but that goes double for anyone female, non binary, or of literally any other race but white.
Age, experience with masking, and being further and further away from that original norm stacks the deck against legit autistics actually being Dxed.
Other Reasons to Support Self-Diagnosis of Autism
Now, barriers aside, there are other reasons to support self DX.
For one, in the current political climate, with the enacting of mandatory registries for autistics*, a rise of Nazis, socially acceptable eugenics programs, rabid "warrior moms", etc ...
... if you don't need it for something specific, I'd *personally* not even bother getting a formal dx.
* Fighting against such a registry was the last thing I did before leaving Minnesota, and several states in the US already have such registries.
These are generally mandatory registries, requiring medical professionals to report autistics to the registry... under the threat of revocation of medical license if they do not.
Not only has there never been such a registry of a marginalized group that *hasn’t* been for nefarious purposes, in no way can “Drs must report or lose their license” be framed as something positive, that’s actually for our benefit.
Actual good doesn’t need to come with such hefty threats.
Parallels to 1930s Germany aside, such registries can be used to discriminate against autistics in matters of family law, housing, healthcare, and jobs.
Ie: no good can come of it, and avoiding a DX if you can IS a matter of safety.
Reality, Autonomy, and Marginalization
Secondly... If you're autistic, you're autistic... whether or not an allistic writes it on an official form.
Personally, I find it pretty ridiculous to gatekeep autism from those who haven’t had an allistic declare them to be autistic.
“You’re not (marginalized identity), because (majority identity) hasn’t declared you to be” is just a really bizarre way to think.
... and that goes double when you look at the fact that autistics tend to be economically disadvantaged by our neurology, AND such DX tends to be prohibitively expensive.
False Negatives Don’t Change Reality
I digress, back to the barrier of a DX. Let’s say an adult autistic goes in for a DX and is unable to obtain one, for whatever reason.
Maybe the pro isn’t aware of how to see autism in adults / non white people / women / etc.
Maybe the autistic is having a particularly good day for masking. Whatever the reason(s), they don’t get their DX.
Does that rejection of a DX make the person not autistic? Nope.
Does not even going for a DX make a person not autistic? Nope.
Whether you go in and get a dx, or don't go in and self-id, or go in and don't get a dx... you're the same person you were before it.
If a Dr tells you you're not autistic, but governing yourself as if you are (sensory issues, whatever) makes your life better? Do it.
Realizing you're autistic is like 95% about "oooooh... so that's why _____".
Those realizations are valid whether or not you have a paper telling you that in the eyes of an allistic with a degree you ARE autistic.
The Arguments Against Self-Diagnosed Autism
Aside from some bizarre exclusivity views, the big arguments against Self Dxed people, as far as I can see, are:
1. That people will be falling all over themselves to falsely declare themselves autistic. This is just nonsensical.
2. That people will be mistaken about being autistic, and declare themselves autistic when they’re not.
So, let’s address that second one.
Let's say being autistic makes sense to you, explains things... and somehow you're wrong (??) about it.
Let's say you ... I don't know, were a toe walker and collar chewer as a kid. SO you find autistics, and you start checking off other things that made you feel alone and like an outsider as a kid.
Even if you're somehow wrong and not technically autistic (Maybe you're ADD with some common threads)... so what? Are you taking anything from anyone?
Is your existence hurting anyone?
Are you feeling better because you found people you can relate to, and learn that any weirdness as a child wasn't actually as "freak weirdness" as you were led to believe?
That's why I'm all for self dx. SO many of us were so alone and isolated as kids, felt like we were just dropped off on the wrong planet, etc. I don't want others to go through that, you know?
I've seen so many lights click on for friends when they realized they were autistic, and they start connecting the dots and are just more at home with themselves.
It's a good thing.
So, yeah. Thanks for coming to my Ted Talk. 🙂
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