How TPGA’s Mods Failed Me

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 peersput 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.

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8 thoughts on “How TPGA’s Mods Failed Me

  1. I can’t fix any of this, but I can say I understand. I wasn’t diagnosed til my late 20s, but I did go through a whole lot of behavior conditioning where people just thought I was lazy, or weird, or “off”, or whatever. My parents, luckily, described it as “gifted” and gave me room to grow, but I had my share of awful teachers and jealous, weirded-out “friends” who ran like hell when I did anything not normal. I can’t even imagine how bad it was for people who were actually diagnosed as kids.

    What this post put well was the sadness. It’s not only anger and betrayal – it’s genuine sadness, at finding a place where things seemed safe and NTs who hung out there mostly defended us. But then, for whatever reason, there’s a massive about-face and they’re throwing us out like my grandfather’s ancestors out of Poland. It feels disorienting, and sad, as well as vastly unacceptable.

    My long winded point, I guess, is: I hear you and I understand. Sigh.

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    1. Thanks. Being heard is a big thing, especially right now. I did make about a dozen new autistic Facebook friends, so there’s that – I just wish I’d made them in Not This Way.

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  2. I’m being anonymous. Because I have no desire to get into yet another war in the autism community. I don’t have the energy to fight this one. Note this doesn’t mean that the war isn’t needed.

    I can’t comment about TPGA because I don’t participate there. I knew better (I’ve yet to see a large autistic community, including large autistic-run communities, that can somehow steer clear of massive horrible conflict).

    This same shit happened about 10 years ago and destroyed the previous very vibrant blogging community. This isn’t new. I still believe there are decent parents, but it is amazing that when autistics dislike a preferred therapy or suggest that maybe, just maybe, parents shouldn’t have the highest and most valued voice in the autism world, even people who gave good lip service to “I want to hear from autistics” suddenly turn into horrible people.

    Despite the force applied to extinguish the behavior of criticizing a parent’s acts, I still will speak out. But it’s hard, damaging, and contributed to 5 years of depression (the ONLY depression I have had as an adult – the other 20 years of adulthood have been depression-free). But I do pick my battles carefully, so maybe they succeeded in extinguishing some of my behavior. I’ve learned that there is now such thing as safe space for autistics.

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  3. I haven’t been up on this because I’m not generally up on, like…anything. And also because I’ve been without medication and therefore asleep for the past 48 hours or so. But I am not getting up on this. Because what the fuck.

    Anyways. This post is the things, though. People are always like “You got so far without a diagnosis, though…” And I’m like “Yep! So, so far. So far that I was twenty-one, only occasionally fed myself, couldn’t scream in a way that made noise anymore, regularly dissociated, and told myself how I should probably be euthanized. That’s how far I made it.” But, you know, I shit where and when I was told to, so I must have been fine.

    Nobody fucking bans Kassiane. Nobody. My ability to write posts whatsoever is something that happened as a result of her writing the way she writes. The End.

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    1. A thing that clarified for me last night after I posted this:

      When a parent/caregiver says “but wasn’t [trauma I exposed you to] better than [some other probably-traumatic option],” implicit in that is the assertion that receiving *appropriate* help *was never going to happen.* We were going to get treated badly or treated worse, so we ought to be happy to be treated “just” badly.

      Screw that. Screw that for us and screw that as an option for children now. We all deserve to have our needs understood, taken seriously, and given the most appropriate treatment available. And…I wasn’t.

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  4. I missed most of the awful things that were said there and I’m upset that TPGA did a complete about face. I’m an NT parent. I’ve spent years alone with my thoughts about my daughter and how to guide her. I avoided parent groups, in person and on line because of the overwhelming “Me” attitudes and so many things that felt wrong.
    Eventually, I began joining online groups and looking for anyone in the sea of self-centeredness, who saw what it was really about-the autistic child.

    It didn’t take long to realize that autistic adults were out there and could help me guide my daughter. TPGA was the first place I’d seen the input and consideration of autistic people. It started a snowball effect that has led me to many other pages, many fb friends who are autistic and generously share their experiences and insights with my daughter and I, and most importantly, my daughter is growing and blossoming knowing that she is not alone, that she is understood.

    It breaks my heart they turned their back on all of you, not for me, but for all of those like I was, who are searching for something they aren’t even sure of. Those parents who have been mired in the doom and gloom, the “me”, that is everywhere, who may have been like me and learned and realized how harmful that is to their child. Children will continue to suffer because of this and that is so very sad and very frustrating.

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  5. Reading this makes me feel all wobbly inside. I think behaviour modification is a good description for what my mother did raising me (and still tries to do). I think what you described in your post explains why I respond so badly to it.

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  6. I feel bad having nothing useful to offer but still posting to ask for help. But I’m 42, I have to do it sooner or later right? So. how do I find someone who can diagnose an adult female as autistic? Who do I see? I can’t be bad/wrong/weird forever without it breaking me. I need something to hold onto that tells me it’s okay. A reason. if you can offer me an direction, please help..

    I live in a tiny town and whatever neurologist are within a 2 hours drive of me already know me and don’t like me and won’t be objective and psych-anything-ists basically offend and freak me out because I do not have borderline personality disorder because it’s not even a thing (unlesss you’re a female) except a hurtful and offensive and WRONG thing (no matter who you are) and they never ever EVER say guys have that and how do you even have a “borderline” personality, it’s like “you almost ALMOST have a personality, like you are THIS CLOSE to having a personality, it’s borderline” WTH is that.

    so yeah that…..

    thank you for writing, it’s helpful just to have people to read who seem to be more like me than most people I’ve ever met in my entire life.

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