Every year in the time leading up to April, I write a post about autism, in the hope of educating people. Usually it’s with the goal of helping parents understand their autistic kids and treat them better - or empowering autistics themselves - but this year is going to be a bit different.
With this post, I am hoping to reach all the people that fall outside of the “autistic” and “parent of autistic” circles. I want to reach all of the people who don’t know what ABA is, and who assume that the “therapies” being fought for in the news MUST be a good thing. I’m hoping to reach the politicians who probably think that they’re fighting FOR autistics, when really they’re just alienating a key voting base for themselves.
There’s a lot to say, so I’m going to break it up into sections.
Thankfully, I did not go through ABA - “Applied Behavioural Analysis” myself. I WAS subjected to some sort of “therapy” in elementary school, but it was only a few hours a week, and I’m unable to find any details about it. I remember it creeped me out, and now the school and school district say they have no record, and didn’t even keep employee records. (I tried asking about the “therapist” - I remembered his first name). CURIOUS.
However, I am someone with a lot of empathy. I am friends with a lot of autistic survivors of ABA, and I’m acquainted with many, many more. I’m horrified by the abuse they went through, I hear them, and I LISTEN to them. No one should have to go through what these people have endured.
The Origins of ABA
First of all, I’d like to discuss how ABA came about. While one common argument against autistic self advocates is “that was the past”, it’s really not - it’s the very foundation.
ABA is the brainchild of Ole Ivar Lovaas, a psychologist, professor, and bigot. A couple examples of what he thought of autistic people:
"You see, you start pretty much from scratch when you work with an autistic child. You have a person in the physical sense—they have hair, a nose and a mouth—but they are not people in the psychological sense. One way to look at the job of helping autistic kids is to see it as a matter of constructing a person. You have the raw materials, but you have to build the person."
"In any case, what one usually sees when first meeting an autistic child who is 2, 3, or even 10 years of age is a child who has all the external physical characteristics of a normal child—that is, he has hair, and he has eyes and he has a nose, and he may be dressed in a shirt and trousers—but who really has no behaviors that one can single out as distinctively ‘human’. The major job then, for a therapist—whether he's behaviorally oriented or not—would seem to be a very intriguing and significant one, namely, the creation or construction of a truly human behavioral repertoire where none exists."
Yes, ABA therapy was invented by someone who saw autistics as inhuman / subhuman.
Lovaas went on to co author such works as “Behavioral treatment of deviant sex-role behaviors in a male child”, and co-create “The Feminine Boy Project” - a relative to ABA, which sought to “pre-treat homosexuality among young children”. If a boy was deemed to be too feminine / not living up to male gender roles enough, they were subjected to “therapy” to “prevent them from being (staying) gay”.
This was “accomplished” (sorry for all of the quotation marks, I’m too literal not to temper these words, in this context!) Through what would become known as gay conversion therapy - often through physical violence. At least one of the program’s earliest survivors ended up killing himself as a result.
Aside from both “therapies” originating with the same person, they also have the same mindset, the same goals. That autistics and gay people are subhuman / broken, and should not be allowed to be themselves. That they should be subjected to inhumane treatment until “molded” into something deemed more acceptable to society / their parents.
As with gay conversion therapy, ABA doesn’t actually change the subject into what the program / their parents want. A gay kid does not become straight through the therapy, an autistic kid does not become allistic. What it does accomplish is to essentially brainwash the subjects into *acting* more like the type of person desired by the program. After enough bullying, shaming, coercion, and general breaking down of a child’s personality and defenses, that child learns to pretend to be straight / allistic as much as possible, to please authority figures (the “therapist” / parents / teachers), and avoid negative consequences (beatings, denial of food, denial of affection, denial of water, denial of washroom breaks, etc).
So when autistics point out that ABA is “autistic conversion therapy”, and warrior parents act like we’re being histrionic... know that we’re not. This is literally the genesis of ABA. The goals were - and still are - the exact same for both.
Most of society has realized that gay conversion therapy is barbaric, bigoted, and uncalled for. Unfortunately, we can’t say the same for ABA.
What ABA is
The “quick and dirty” analogy is that ABA is essentially like a form of dog training that is generally frowned upon as abusive. It’s intensive “training” using aversive and coercive methods, to force change in a child’s behaviour. A lot of the time, this is about changing harmless self-sooothing behaviours in autistic children - stimming.
Stimming is the rocking, leg shaking, flapping, humming, dance, etc that we tend to do. It expends excess energy, it acts as communication, and it feels good. Stimming can prevent meltdowns, stimming can communicate an oncoming meltdown with enough time to mitigate things - when parents pay attention, learn autistic communication, and learn to recognize patterns. Suppressing stimming is a popular goal of ABA, and to us - that’s completely nonsensical. When you see mention of “quiet hands”, that’s suppression of stimming. The thing is - wiggling our fingers to release energy - as an example - harms no one. Yelling at / slapping the hands of / etc an autistic child who has that energy to release is not only uncalled for, it’s damaging. Teaching a child to suppress something that is obviously a help to them? Why do that? Is wiggling fingers or a bouncing leg really so disruptive that it is worth making a child feel like a pressure cooker?
Anyway. I digress.
ABA is an intensive therapy, usually 35-40 hours a week, of compliance training. Children are (usually) pulled out of school for a good chunk of these hours, missing out on actual education, for what is essentially a full time job. Imagine having to do compliance training - as a 6 year old - for as long as your grown, adult parents spend at a full time job!
In these sessions you may see things like a child being told to pick up a pencil, then put it down. Then pick it up. Then put it down - generally meaningless tasks. This goes on ad nauseum, with the child being “rewarded” - usually with a small candy - for complying. When the children do not comply, aversives are used to punish the child. This can be harsh words, denial of food/water/toilet break/affection (parents), etc.
Harsher aversives *tend* not to be used any more - there are exceptions - and parents love to point this out. However, this does not change the premise or goal of the “therapy”, or the fact that you have a child being subjected to extremely repetitive menial tasks in a brainwashing setting, for 35-40 hours a week.
This is one of those times when I’m not sure how well that I - as an autistic - can convey the horror of something that autistic people feel, to people who are not autistic themselves. It’s like when I talk about hand dryers - I’m sure it seems silly to non autistics, who don’t tend to grasp just how painful they can be to me, and to many like me.
I hope that allistic people reading this can picture a 5 year old, 6 year old, whatever - sat at a table for 35 hours a week, being told to do the same thing over and over again, and see how awful that is. How spirit crushing it is, and how inappropriate of a way to treat humans it is. I just don’t know.
As an aside - at 30-40 hours a week of this training - an autistic child is subjected to more of this training in one year, than their “therapist” went through to be qualified to administer ABA.
What ABA is Not
You may hear a lot of claims about what ABA is, that are pretty histrionic. “Life saving” is my favourite. “Medically necessary” is another. Both are false statements.
With the goal of ABA being to force the child to act allistic, that goal is solely to improve the life of the parents / family around the child. It’s to make their kid appear less “broken” than they see them. A common misconception - what with the name “therapy”, and all - is that this is done to help the autistic child.
The real fact of the matter is that no part of ABA is actually designed to help the child actually deal with autistic issues that affect *them*. It doesn’t teach children to actually calm themselves in the face of overstimulation, it doesn’t teach them healthy ways to release energy (ie: finding a good/better stim), all it teaches is suppression. Suppression is unhealthy.
Healthy stims are a good thing to teach. Working together with parent and autistic child to help the PARENT learn to recognize autistic communication would be a good thing. Helping an autistic child to learn ways around their sensory triggers would be a great thing - however, this is not what ABA is.
What ABA does to Autistic People
Now that I’ve touched on what happens in ABA sessions, I’d like to address what happens afterwards, how ABA can impact autistic children for the rest of their lives.
First and foremost, when subjected to compliance training for 35-40 hours a week, autistic children are taught that they lack autonomy. They are taught that they do not have the right to say “no” to something that they do not want to experience. This is drilled into their head, in a very intensive manner, from a very young age... and that’s incredibly harmful and dangerous. This leaves autistic survivors of ABA to be highly susceptible to various forms of abuse both as a child, and later on in life.
A child's ability to decline physical contact is FAR more important than a parent's desire for a hug.
Additionally, the whole “pretending to not be autistic” thing is extremely problematic.
This is called masking, and does not change the fact that the child is autistic, it merely brainwashes them into maintaining a facade. Masking is also the reason that many women are not diagnosed until much later in life - because of gender roles and conditioning, we tend to be a lot better at masking, early on.
Masking is why you may think or say “you don’t look autistic” when you meet an older autistic person. We - and masking is something I do, myself - have had an entire lifetime of masking to fit in, whether it was forcibly coerced, or just picked up as a survival skill.
Anyway, this masking - along with the actual ABA itself - is not only exhausting, it has been shown to have disastrous, lifelong effects on ABA survivors.
A large percentage of ABA survivors end up with PTSD as a result of the “treatment”.
A study in 2007 found that nearly half of all ABA survivors met the diagnostic threshold for PTSD. I’ve seen other studies referenced that put the number closer to 85%, and also include C-PTSD.
Is having a child that can better fake “normalcy” really worth setting them up for a lifetime of PTSD and training them to be a perfect target for physical and sexual abuse?
Who Benefits from ABA
The other day, a conservative politician retweeted a tweet from an autistic advocate, that highlighted one of Lovaas’s awful quotes, mentioned above.
I really shouldn’t have been, at this point, but I was shocked to see that “warrior moms” - parents of autistic kids who spend a lot of time going after autistic adults online - attacked his sharing of the quote, calling it hate speech.
Cognitive dissonance about calling it hate speech one minute, while continuing to subject your child to the “therapy” founded on the same principle, by the same person aside... it IS hate speech. That’s the point. ABA was founded on a basis of hatred and ignorance about autistic people.
I digress. I wanted to share that incident, as it had a pretty wild outcome - the parents were accusing the politician of using it to “further his agenda”. (Of course, they don’t accuse politicians on their side of doing the same, when sharing anything pro-ABA. Again, I digress...).
Additionally, autistic advocates - myself included - have also been accused of “agenda!!!”. So, I’d like to touch on that for a minute - the agendas of all parties involved.
Politicians are going to politic. That’s the same for any subject.
The parents are fighting for ABA, because they want “normal” (appearing) kids. It’s not about the child’s health, mental well-being, or future, as discussed above.
ABA “therapists” - BCBA, or “Board certified behaviour analyst” - stand to lose a TON of money if ABA is relegated to the same place that its twin - gay conversion therapy - is.
I saw an article the other day, that parents are paying something like $25,000 for 3 months of ABA. There are many articles out there about how parents “have to sell their house” to afford ABA. That’s... wild.
Adult autistic self advocates that are fighting to abolish ABA are doing so without any hope of personal gain. In fact, we open ourselves up to LOSS by fighting for autistic kids of today. We are constantly harassed by warrior moms and BCBAs online - up to and including death threats, in some cases - and it’s extremely stressful. Some take time off work and pay for commutes and materials to counter protest.
This can come at an extreme cost - not only financially (and many autistics are under/unemployed to start), but also physically and emotionally. Any giant, loud crowd can be extremely distressing and draining, even for pleasant circumstances (I’m personally bracing myself for a big outdoor concert later this year. ) ... but it’s so much worse when you’re outnumbered and surrounded by people who are angry, and whose signage is full of hateful rhetoric about people LIKE YOU.
Yet, we do it. We’re not paid, the best we can hope to gain from our actions is to prevent more autistic children from being subjected to the barbaric and inhumane treatment that many of us have been.
... and that would make it worth it. That is literally our entire goal, our agenda.
Attacks on Autistic Adults
In the past few days, I’ve not only been accused of “agenda!” and “personal gain!”, but also of supporting Autism Speaks (Uh, NO) because of my anti-ABA stance, and more. I’ve had my twitter responses flooded by angry, hateful parents who are *enraged* that adult autistics are speaking up for the child autistics of today. That’s not all, and I’m far from alone in that. With April starting in just a few days, many/most of the “out and proud” autistics I know of only have already been subjected to much of the excess nastiness we’re accustomed to April (“Autism Awareness Month” bringing our way.
As I told one such venomous warrior mom on twitter:
I, for one, cannot wait until the current generation of ABA survivors are all grown up - the children of warrior moms/mommy bloggers. The generation that was blogged about, had their private bathroom habits discussed publicly, who had their meltdowns videotaped and posted for the world to see (and for their parents to gain social media or real currency from!).
These kids had it so much worse than we did. I honestly don’t even think I’d still be here, if my own mother had the backing of warrior moms back in the day. I can’t imagine going through school - hard enough as it was - with the added hell of having my childhood blogged about, as ammunition for bullies. I just.. Can’t.
If the parents who attack and harass adult autistics online for speaking up think that WE are angry... just wait til their kids grow up. They don’t seem to realize that we WERE those kids... and those kids will grow up to be us.
The difference, though - aside from all the extra awful they’re enduring?
Back in the day, no one was standing up against ABA and abusing autistic kids, to our generations' parents.
I can't imagine how much angrier I'd be to grow up and see archives of my parents fighting against autistic adults standing up for me. Yikes.
These kids will grow up, they *will* find their community - and their voices - as so many of us have.
I hope the parents that abuse autistic adults online are ready for that day, and ready for themselves serving as a firsthand example *to other parents* of why ABA is a bad idea.
A Word to the Left Wing Politicians:
It is, frankly, appalling to me to see the very politicians who champion women’s rights and fight against rape culture, to fight so loudly for an abusive, unnecessary industry that sets up children to become sexual and physical abuse victims.
As a society, we realize that gay conversion therapy is inhumane. We look at the type of dog training that most closely resembles ABA to be animal abuse. We look at residential schools - an idea that bares striking resemblance to the concept and execution of ABA - as a dark spot on our country’s history, and one that we are trying to make reparations for now, after the fact.
I invite you to take a good hard look at ABA, at what these children are being subjected to, and realize that you are not learning from the mistakes of the past. You’re repackaging and repeating them, with the same tired old justifications that were used back then. You are the parents that subjected gay children to conversion therapy in an attempt to “fix” them - for them to fit in better and have a better life, of course - and you are the colonizers that removed First Nations children - people like my own grandmother, who raised me - from their culture, in an effort to “tame” and assimilate them, forcing them to fit in to mainstream society, and the dominant culture. Not even the lingo and excuses have changed. Be better.
If none of that info, if none of this post is enough to discourage you from continuing the fight to fund ABA, I ask you to consider this:
Many of the qualities and traits of autism put us squarely in the NDP's key voting demographic. There is no such unifying feature to being an allistic parent of an autistic child.
So, if you won't consider the actual needs of autistic children, maybe you could consider the actual needs of your political party.
Do you have any idea how many ABA survivors are voting age? How many autistics are voting age? Those numbers increase every year. I'm asking you to consider that, as you continue to work on harming the younger versions of us. We see, and we remember. (And BOY, we can hold onto memories and grudges!)
I would suggest not only doing some real research into autistic experiences of ABA, but also into common traits of autistic adults. For instance, are you aware of the huge percentage of autistics that are GLBT, non-binary, etc? Are you aware of how our empathy and sense of justice tends to make us extremely social justice minded?
Do you have any idea how you're alienating a great voting demographic, out of ignorance? It's really disappointing. I want BETTER from the parties that purport to champion marginalized groups.
In fact, I hope you can consider what it feels like to watch a party fight for the rights of EVERY other marginalized group, but our own. To see that your empathy ends JUST short of autistic lives and well-being mattering.
Well, I’m on page 7 of a WordPerfect document here, so I should probably wrap this up.
Like I’d said in the beginning, there was a lot of information to cover - and I hope this has been educational for anyone who has read this far.
I’d like to end with a request, for observation of #AutismAwarenessMonth / #AutismAcceptanceMonth:
This April, please consider checking in with your doctor about your vaccine record, and arrange to have any outstanding vaccines or booster shots dealt with.
It may not be the quick trip to AutismLand that some like to claim, BUT I think it's on theme for the month.
Not only would you be helping autistics - by fighting the nonsense stigma people are tarring vaccines with, in OUR name! - you'd be helping everyone - including yourself! Win-win-win!
This is looking to be an especially demonizing / dehumanizing "awareness" month, so it would be nice to see progress made against autistics being used as a boogeyman to usher in a new round of polio, you know?
Please and thank you!