Why I put my son through a controversial, “damaging” therapy
TRIGGER WARNING: I talk about modern Applied Behavior Analysis and its practical applications in this post. But for those that experienced trauma from traditional ABA, there may be nothing practical about it, and should not read this.
Before I go any further, I want to make a statement about the abuse allegations against traditional Applied Behavior Analysis Therapy, or ABA. I think they are absolutely true. It’s not really a question that the way that children were forced into a behavior that is unnatural for them was bad. That is a bad idea. I also think it is the worst application of ABA imaginable.
You see, the therapy itself, is not what is damaging. It is how it was, and in some places, is still, used. It is only a tool. It’s like a syringe. With the right content, it’s a life saver, with poison.. well, you’re done. (I know, I know, this is technically the kind of semantics the gun lobby uses. Guns don’t kill people, people kill people. But the gun sure does make it easier, right?)
So with that in mind… Why would I, a neurodivergent person, who believes in the autonomy of autistic people, put her son in ABA therapy?
Trust me, it’s not easy. Everyday I question if it is the right choice. And everyday I weigh the benefits over the consequences, and choose whether I want him to continue.
And before I go into my reasons, I would like to refer you to an autistic adult who actually went through ABA. His opinions and experience are EXACTLY the same as my own, but he has the legitimacy of having actually been through ABA therapy himself. And here is another account of an autistic man who went through traditional ABUSIVE therapy. His description of forced eye contact triggered real panic in me. His argument is very good, and makes it understandable why so many people are against ABA. And, lastly, here’s an unbiased account of the controversy from Spectrum News. OK.. Back to my post…
Again, why? Why would I do it? There are two reasons…
First, I want him to understand that he is different. Different is not bad. I want him to know that we are different, and neurotypical society has very specific rules. And we have to live by those rules until society catches up with us. He will always, always know that there is nothing wrong with him. But in a world where autistic adults, men especially, are shot and killed over meltdowns… I want my son to know how to cope in their world, so he can survive their world.
This isn’t how I would like to solve this problem. I would prefer that the world was safer for him, more understanding, more accommodating- and I am doing everything I can to make that happen for him- but we do not live in that world. And just as I would not send a vulnerable daughter into a drunken frat house known for sexual assault, I will not send my son into this world unarmed. He needs to know what people expect of him so that he can remain safe. Again, I don’t want the world to be like this, but I am practical enough to know that I don’t want my son to be the next Kenneth French.
Second, my son has both Apraxia of Speech, and Dyspraxia. Where autism is just another type of person and, in my opinion, should not be pathologized or overly treated, Apraxia of Speech and Dyspraxia can be quite debilitating. From my understanding, both of these issues are a matter of connection from the brain to the body, just like my auditory processing issues. My son has to physically learn how to make his mouth into certain sounds for spoken language. He can’t just listen and repeat, like most people can naturally do, including other autistics. He has to practice over and over and over, the only thing that will help is muscle memory. So I have him in speech and occupational therapy, of course, but an hour a week is just not enough to get that kind of muscle memory.
This is where ABA came into our lives. My son goes to an ABA clinic that gives one on one therapy but in the setting of a preschool. So, honestly, he actually spends a huge amount of his day taking sensory breaks, climbing rock walls, playing in sensory bins, cuddling with his therapists, running around, and most importantly, stimming. No one stops his stimming. (This is not just my rule, it’s a rule of the clinic.)
But on top of all that sensory, he also does academics like matching. Matching concepts is his favorite. He loves to match items and categorize them, it’s very comforting for his mind. (I think he got that from me.) And then, most importantly for his apraxia/dyspraxia, he drills on things like clapping and waving. Is clapping necessary to his life? No, but the ability to move his hands the way he wants to is necessary. Especially when it comes to sign language.
You see, I want him to have as many forms of communication as possible. So he uses an AAC device (or what we call a talker) and he uses signs. He isn’t fluent in either yet, but he’s working on it. (He is doing drills in those skills daily as well.) Occasionally, he speaks, which we love, but remember a hug and kiss communicate “I love you” just as much as words. So communication is the goal, not necessarily speech.
His school also helps him with desensitization. And this is where it occasionally gets sticky for me. Personally, I don’t think anyone who doesn’t have a problem with misophonia, or sensitive hearing, should be telling my son when he can or can’t use his noise canceling headphones. Sure, they want him to stretch his ability to handle noises (And that is a practice supported by many autistics, including Temple Grandin herself) but there is a consequence to inundating a person with painful sensory input. It creates meltdowns, and meltdowns build trauma, and trauma leads to abuse. So headphones are definitely still apart of his life.
(I have also since learned that they want him to have his headphones for ANY and ALL sensory issues. It was not actually about desensitization but rather that the little prince had started to pretend that he couldn’t hear them and would run away to play. They would honor that he needed a break, they just didn’t want any confusion about what headphones are for. And just for clarification, anyone who uses noise canceling head phones knows that you can still technically hear what is going on around you, it just muffles the worst of the noise. He was totally messing with his teachers. Which I find… hilarious.)
My son’s school is a lovely place full of so much caring and understanding. The therapists treat the children like people, not problems to be solved. My son’s therapists in particular have done so much to help him. He has two therapists, one for the morning, and one for the afternoon, with a caseworker who oversees them both. All of them have kind, quiet natures, some of them are neurodiverse as well, and I believe that they would all walk into traffic for my son. Without question.
There are some issues that I have to stand my ground on. And I think “functional play” is sometimes an unnecessary pursuit. But all I really have to do is tell his caseworker that such a goal is not a priority for us. Drilling his muscles is what is important to us. Practicing sign language. If I could have the same atmosphere with no ABA and just Speech and Occupational therapy, maybe I would. But that is not an option at this moment. And honestly, my son’s therapists and caseworker know that this is the goal for us. Not necessarily “compliance” but understanding of rules, comfort in a neurotypical structure, and the ability to use his body the way he wants to.
Do I still have moments where I question the use of ABA? Yes. Although I know that every parent there has good intentions, sometimes I do wonder what they want from their kids? And I have a serious problem with the more masking parts of conforming that are more associated with manners. Is it really that important for them to say “thank you” or “how are you?” That feels more like performance to me. And performance leads to masking, and masking leads to burnout, and burnout leads to trauma, and trauma leads to abuse, and that cat ate the rat, and the rat ate the bat.. you get the point.
A quick example of this- I was talking to another student after therapy while they waited for their mom to pick them up. I’m kind of a fixture there because I am often there for my son’s other therapies, like speech and occupational therapy, so all the kids know me or at least have seen me. I was complimenting one of the little girls and said, “You are very charming! That means that you make people happy, and that makes them smile.” And her very well intentioned therapist said, “What do we say? We say thank you.” And I very quickly responded, “She doesn’t have to say anything if she doesn’t want to. I just wanted her to know that she makes me happy.”
It’s little things like that that can turn into bigger things. No one is saying that good manners are bad, it’s just that manners are the unwritten rules of neurotypicals. And the unwritten rules of neurotypicals are often a problem for people like us. So putting such a focus on good manners, only shows us that you think manners are more important than our mental health. And that’s not ok.
If you are neurotypical and have your child in traditional ABA therapy and don’t see what all the fuss is about… Well my best metaphor would probably be this:
You are dropped into a completely different country. (I don’t mean to sound xenophobic, but let’s say India. India is about as different from milk toast USA as you can get.) It’s loud, you don’t understand the language. The beautiful colors are distracting so that you can’t focus. The smells are strong and nothing like you have every smelled before. You don’t understand the currency, or the social customs. All of this is still ok, disorienting, but still, you’re ok.
Suddenly, the authorities show up. They say that your language is not allowed. They say that your customs and manners are wrong. They have put you into an involuntary re-education program. They are very nice about it, they’re good, kind people, but they still don’t want you to be yourself. They say there is no place for people like you. You have to eat curry, you have to wear a sari, you have to know every unwritten rule or you won’t be a successful person. You have to assimilate and you have to do it now.
Would you be cool with that? Of course not. You would always be uncomfortable. You would always feel out of place. You’d probably find some kind of happiness, but the world would still feel foreign to you.
That sucks, you might say. But what the hell am I suppose to do to help my kid? Our ABA therapy is working. Am I just supposed to pull him out?
No, I don’t think so. I don’t think that’s the answer. Like I said, ABA is just a tool. And not all ABA therapists work the same way. What you do need to do is be in constant communication with your child’s therapist. You need to make sure that stimming is accepted, accommodations are welcome and available, and you need to make sure that the therapist knows that autism is not a sickness. You don’t want a cure. You want reasonable tools to help your child thrive. And if the therapist can’t accommodate you in this way, then you need to find a new therapist.
One last, but very important thing, if your child is in ABA therapy, you should put them in good cognitive behavioral therapy as soon as possible. In fact, if your child has no other difficulties and is merely just autistic, I would skip ABA entirely and go to cognitive behavioral therapy (CBT) alone. Especially, if they are older and ABA is inappropriate for them. Preferably someone with experience in autistic adults. I don’t necessarily trust counselors for autistic children, because it is usually just another kind of conforming. That is my experience, others mileage may vary.
It is too soon for my son to go to CBT because his ability to communicate is still very rudimentary, but the sooner your child understands why they are frustrated, who they are, what they can do to better understand the world they live in- the safer and healthier they are. (Remember, no more Kenneth French, whatever it takes. You can’t control the police but you can teach your children about safety.) And if you don’t trust a counselor, which I don’t blame you when it comes to this kind of thing, look up the principals of cognitive therapy yourself. That is what I am doing. I also work with a counselor on my own cognitive issues, daily. (And by the way, you don’t need to be autistic to do ABA or Cognitive Behavioral Therapy. They are, technically, “good” for everyone.)
Okay. Honestly, this is the last thing… I know that we as autistic people, sometimes would prefer that traditional ABA was just wiped off the map. Why wouldn’t we? It’s a practice that has left a painbody in the side of all autistics everywhere. But just like the world, ABA is what we make of it. We can let abusive therapists use it for harm, or we can use it to inoculate our children to masking and autistic burnout. Had someone taught me the rules of neurotypicals as an autistic person, my life would have been so much easier. And in the end, isn’t that what we want for our kids? Just for something to be a little bit easier in such a difficult world. I know that’s what I want.
My son goes to the Place for Children with Autism, a Chicagoland based group of ABA clinics. I know that the name is a little person-first, but I actually appreciate its straight forward sensibility. At least it wasn’t something insulting like “Puzzled minds” or “Poor Little Autistic Kid Daycare.” The first one is real, the second one is not. I think. I hope. They have always been very cooperative to our needs and supportive of my child, and I refuse to distance myself from them because of controversy, merited or not. I would recommend them in a heartbeat. For more information, click here.
Also, if you look at the promotional videos on their website, not only are the children diverse, they are stimming! Proof! No one is stopping them from stimming. The only time a child is “stopped” from any autistic trait, it is self harm. All therapies should be this way.
If you are curious about Kenneth French’s murder, here are some links to fully understand the direness of the situation all autistic peoples face.
Trigger Warning: This reaction from Mrs. French is heartbreaking and can trigger some big emotions and fears.
- Mrs. French responds to the idea that Kenneth was “aggressive”
- Officer involved will receive no charges in Kenneth French’s murder, or the injuries of his parents
- One of the first posts I read about the incident, by Jo Ashline