It’s been a really tough week to be autistic.
This week, The Thinking Person’s Guide to Autism (TPGA) had a massive, multi-thread moderator fail on its Facebook page. I can’t link to the most offending threads even if I wanted to, as they’ve been deleted in their entirety. But the “highlights” (lowlights?) I personally witnessed include:
(TW: insults, support for ABA therapy, trauma-inducing treatment of autistic people.)
- Repeated bullying and insults from parents of autistic kids to autistic adults, negating, ignoring, and belittling autistic adults’ descriptions of their own experiences with ABA;
- At least one parent referring to autistic people’s behavior as “animalistic,”
- At least one parent referring to her autistic five-year-old’s meltdowns as “psychotically violent” (PROTIP: Unless you have objective evidence that a person is losing touch with reality, you do not get to call that person or their actions “psychotic.” That word has a meaning. Your personal interpretation of that person’s behavior is not objective evidence.)
- The banning of Kassiane, of Radical Neurodivergence Speaking, for what, as near as I can tell, amounted to using swear words to express her position upon being attacked (repeatedly and at length) by various parents. (I did not get to read this part of the fail as thoroughly as I would have liked before TPGA deleted it.)
TPGA’s mods made huge mistakes here. This hurts my heart, as I thought I had found a community in which non-autistic parents really were making an effort to listen to autistic people’s experiences in order to avoid wreaking on their own children the same mistakes that were wrought upon us by our own parents and caregivers.
This post is about that. It’s about what reading all those angry-parent comments, over and over, did to me. What it’s still doing to me.
The original TPGA Facebook post that started this multitudinous round of failure was a parent query. The parent had been told that their son needed “behavior therapy” because, when he got frustrated, he often “said things he shouldn’t.” The parent was looking for guidance on this point.
My comment was one of the early ones, and I stand by it. I am extraordinarily wary of any therapy/teaching/treatment/intervention that seeks to remove a coping-mechanism “tool” from the student’s range of options for dealing with a situation. Helping a child increase the total number of options available, identify situations where the set “frustration tools” might be useful, and choose the right tool for the situation, yes. Absolutely. But training a behavior out of a person remains to me utterly verboten.
“But what about kids who hurt themselves?” many parents on this thread asked. “What about how Swearing in Public is Bad? What is this kid going to do when he grows up and tries to get a job?”
I’m 32 years old, gainfully employed, and happily married. And self-injury and swearing a blue streak are still tools in my frustration toolbox. I haven’t gotten rid of them, and thirty years of trying to get rid of them only made me need them more. Being able to manage my frustration effectively only came when I focused my energy on building more tools, not on destroying tools I already had.
“But what about me?” many parents on this thread asked. “I can’t take my kid anywhere. I can’t have a conversation with my kid. I can’t tell my kid to do stuff and my kid does it.”
PROTIP II: It’s not about you.
This is where the entitled parents, the mods’ failure, and K’s banning all intersect in a giant whirlpool of failure and triggery trauma for me. Because while I was never subjected to “official” ABA, I was raised to understand very clearly that there was a “right” way to do things, that I mostly did it “wrong,” and that doing it “wrong” was a sign either of willful disobedience, of woeful “delay,” or both – and that if I ever let anyone find out I was woefully “delayed,” I’d end up institutionalized.
(The use of the lives and bodies of people who can’t pass for neurotypical to shame and terrify me into passing at all costs is a problem that deserves its own post – or series.)
Nothing was ever explained to me, because nobody ever bothered to understand why I might do things in certain ways – from hitting my head on things to unexpectedly leaving the room while setting the dinner table. If I did not do things the way I was expected to do them, I was Bad. If I persisted in being Bad (by, say, getting distracted by the prisms that hung in our dining room window or by blurting out “what are you doing here?” instead of the more polite “hello, how are you?” when unexpectedly meeting in public someone I knew from elsewhere), then I was denied things I needed – like food, bathroom breaks, or even sleep – until I stopped being Bad.
And because I survived high school, because I made it through college, because I went to law school and got an apartment and lived on my own, nobody who was complicit in training me to Not Be Bad understands that it was wrong to treat me as Bad in the first place. They think that treating me as Bad worked. They look at how “successful” I am, and, post hoc ergo propter hoc, they assume that because they rigorously pointed out all my Bad behaviors, I stopped being Bad and “learned” to be “successful” instead.
They don’t understand that their treatment of me is the reason I still have PTSD, or was the reason that I stayed in a violently abusive relationship for over seven years. (Because saying “no” makes other people uncomfortable, and that is Bad.)
And when these things come up, years later, they still say things like “but wasn’t that better than being labeled/institutionalized?”, as if they should get cookies for choosing this trauma over that trauma. As if traumatizing me was their inevitable answer, their duty. As if I needed to be traumatized in some way – so wasn’t it better to be traumatized in the way that saved them face?
The parents in this week’s TPGA threads of fail said the same things. Isn’t ABA trauma better than letting my kid do whatever it is my kid does otherwise? Isn’t it better for my kid to listen, to come when called, to set the table and say please and thank you? Isn’t it better for us to be able to go out in public without other people finding out my kid is Bad?
Better for whom?
I lived with the trauma of being Bad for years. Decades. Even after my autism diagnosis, I lived with it because, even though I had found a psychiatrist who could identify autism in adult women (a feat in and of itself), I could not find a therapist who understood what decades of being Bad Because Autistic does to a person. Explaining the PTSD that results from growing-up-autistic-trauma is like trying to pin Jell-O to a running horse.
Kassiane, though, knew. Her posts on what it means to be “indistinguishable from peers” put words to my life in a way no one ever had. Her words were my first-ever steps into finally starting to process a lifetime of ongoing trauma. I’ll be processing it forever – PTSD never goes away – but I can process it now. I have, from those first blog posts of Kassiane’s, been able to move on to find the tools and the support people to help me process. Kassiane gave me the words to identify what had happened to me.
And that’s the full circle. I trusted TPGA to help non-autistic parents of autistic kids avoid doing to their kids what non-autistic parents and caregivers did to me. TPGA repaid that trust by allowing those parents to justify the same old arguments in ways that perpetuate the same old trauma. And TPGA’s mods capped it all off by banning the very first person whose words gave me a way out of that trauma.
It’s been a really rough week.