NEURODIVERGENT GLOSSARY Part 1

I have noticed as I go from one Autism support group to another that there is often a lack of understanding in the terminology surrounding Autism and neurodiversity. This is very important for one reason: Fights are constantly starting over miscommunications.

More than that, people are starting to use dog whistle manipulations to start those fights. Meaning that the environment is so charged with tension that a word will SET the page on FIRE. It’s unhealthy and it’s unhelpful. And while, yes, I am on a mission to stop it, I also just want people to be informed. So, you can safely navigate the politics of Mental Health and Autism, both online and in the world, especially when it comes to parents who are trying to provide services for their children.

With that in mind, once it is done, I will be adding this series of Neurodivergent Terms and their explanations to the Neurodivergent Survival Guide under the Me(ntal Health) category on the main menu. And while I will be putting some of my opinion into these definitions I will also be trying to be as unbiased as possible, so that you can make your own decisions.

NOTE: While the majority of these terms are not controversial, the highlighted definitions can be highly controversial and triggering. Use with an abundance of caution and kindness.

Let’s get started, after the jump.

Continue reading “NEURODIVERGENT GLOSSARY Part 1”

Addendum to my CASE for ABA

Or Introducing Dr. Douche-nozzlE and the Thing about the Nazis

TRIGGER WARNING: Again, I will be talking about the abuse of Traditional ABA, this time in a little more detail, so I would say, even more caution is necessary. Also, there are Nazis. Not kidding.

Earlier, I wrote a post about my stance on ABA Therapy, or Applied Behavioral Analysis. My stance has not changed. But I have experienced some harrowing conversations with autism advocates. And it’s not what you think.

The torture in this scenario, was not experienced by these advocates. It was me. It was painful for me, dealing with so much anger as a highly sensitive person. (Not unfounded anger, by the way, but I do think misplaced.)

So I want to go a little more in depth on ABA to handle what I would consider to be some sleight misinformation.

When I say traditional ABA therapy. I am referring to the original therapy designed by Dr. Ole Ivar Lovass- who despite his “great contributions” I would still like to refer to as- a douche-nozzle. I’m sorry, Dr. Douche-nozzle. I say this because of a pretty infamous explanation of ABA where he essentially said that we needed to teach Autistic children, “how to become human.”

Right…. douche… nozzle.

Now you might say, but those were “severely, low functioning” autistic children who could not speak. They did not appear to be human. (And first, I will sigh, then I might explain the fallacy of functioning labels. Then I will regroup, because you are only repeating what you have heard.) That is only because he was looking through a neurotypical view. Non-verbal does not mean non-thinking, and intellectually disabled does not mean without feelings. All of us, were always- ALWAYS human beings.

When I get to the next part, you are gonna want to call him more than a douche-nozzle, so watch out…

What made ABA really abusive, was Aversion Therapy. Basically, they would take painful stimuli, like bad smells, loud sounds, bright lights- you know, what they did in Abu Ghraib- and try to stop autistic behavior like stimming. In some cases, they literally slapped them in the face to stop stimming. I know, I’m getting pissed just thinking about it.

And in what is apparently, not that bad in comparison, when trying to make them “normal” Lovass would make children who didn’t like touching, sustain being hugged for prolonged periods of time. Or for children that didn’t like eye contact, he would FORCE them to make eye contact. All for a “good job” or a bit of candy.

The slap (above) pictured in Life Magazine. The same child and “therapist” (below) are in a face off. Something similar to the below image happened to me as a teenager and I will NEVER forget it. And that was just one time. That’s why these adults are called survivors. Because many of them killed themselves.

In a 1965 Life Magazine article, they described this scene:

Pamela would not stop starring at her hands while she was supposed to be reading (this is either distraction or stimming.) When she resumed her habit of staring at her hand, Lovaas sent a mild jolt of current through the floor into her bare feet. It was harmless but uncomfortable. With instinctive cunning, Pamela sought to mollify Lovaas with hugs. But he insisted she go on with her reading lesson She read for a while, then lapsed into a screaming fit. Lovaas; yelling “No!”, turned on the current. Pamela jumped — learned a new respect for “No.”

Holy shit, right? You want to burn down the world now, don’t you? Yeah, that’s why people are so pissed. That’s why people try to light me on fire through their computer screen.

(There is actually a picture of Pamela in a meltdown that is so disturbing I think it is actually irresponsible to post it, even all these years later. If you would like to look at it yourself, for educational purposes, you can check it out here.)

BUT, I still approve of my son’s ABA therapy. Why? Because they eliminated Aversion Therapy and introduced Positive Behavior Interventions. Positive Behavior Interventions are more about redirecting. So say if a child is doing self harm, like biting himself, scratching, or banging his head, a therapist will redirect that energy to maybe, a preferred object, like a fidget spinner or a bouncy ball, or something that engages that child, something that soothes them, like a swing, or a song. They will also try to analyze WHY that self-harming behavior happened. That way they can change the environment or the situation to help him self regulate without hurting himself next time.

Flapping, spinning, jumping, or running, all of those kinds of stims are welcomed. As they should be!

If the stimming turns to escape behaviors (wanting to leave) in the middle of a task, the therapist will often place a demand that the child ask for a break as soon as they start to show distress. The kid says “I’m done with this task” (or signs “all done”) and off they go! No aversion! It’s the least amount of stress possible while still learning a socially acceptable way to leave a task.

And you might ask- Why does it matter that he be socially acceptable? That’s a nuerotypical’s problem, not my kid’s. Well, that’s not really helpful to your kid. They may seem like they don’t care, but autistic people still have the desire to be social. Everyone wants to be loved. And following the bare minimum of social contracts makes it easier to create friendships and romantic attachments. You don’t want him abandoning a dinner date at the table because he doesn’t know how to transition, do you? Or a job interview?

More importantly, to remain safe they need to know how to interact with people so that they are not deemed “aggressive” or “dangerous”. Very bad things happen when typical people are frightened by adults showing “odd” behavior. Autistic people have been attacked, tased, and even shot by police that thought they were dangerous or on drugs. Again, as I have said before and will continue to say, Remember Kenneth French.

OK. But some people still say that ABA is abuse and not to believe anyone that says it isn’t like that anymore. I have two things to say about that-

First, they may be referring to the idea that ABA is trying to teach a child how to be “normal” and in doing so makes them feel like they are broken, or diseased. I think that is a legit concern. But I don’t think it is tantamount to abuse. If this is your concern but you still want to do behavioral therapy, you need to speak with the therapist and make sure they know your opinions on neurodiversity, and what exactly you want your child to achieve, i.e. you want them to be able to eat at the dinner table with the family, but you DON’T want them to be just like “everyone else.”

My biggest concern with this idea is masking. Masking, or pretending to be like “normal” people, can be very harmful in the long run, making them susceptible to abuse on a much larger scale- like domestic or sexual abuse. Because they are just trying to make “normal” people happy. In this, you need to make sure that you are always affirming the good that being autistic brings into their lives, and celebrating their differences. A good solid attachment to their parent will supersede anything that is inadvertently gleamed from a therapist, that is my opinion.

And second, I believe that there is still traditional ABA being performed, today. That is why I don’t shut down advocates that call ABA abuse. Because some ABA is still abuse. And I think anyone that uses Aversion Therapy (the same ideas that they use in Gay Conversion Therapy by the way) should not only have their reputations ruined, they should be prosecuted for assault.

So I do not blindly support ALL ABA therapy, because there is no way to know ALL ABA therapy. I support the therapists that have helped my son with both, PBI, and their love and attention.

I know several parents today who had their kids in ABA, and were horrified to find it was someone like Dr. Lovass aka Dr. Douche-nozzle. That definitely happens. And I think it is my mistake not to say that RIGHT AWAY.

I can’t imagine the betrayal they felt. As my husband says, if I found out that someone was doing that to my son… well, I’m not gonna say what he says. He’s a lawyer after all. He knows where to hide the bodies. (EEesh, that was probably too much. For the purposes of my husband’s possible future murder trial, he has never threatened anyone alive or dead with bodily harm. Plus, I’m his wife, spousal privilege!)

So when autistic advocates get angry, and traditional ABA survivors lobby for the destruction of ABA- you can’t get mad at them. You can’t tone-police. You can’t control their anger, all you can do is what is best for you and your child.

I will say this though. There is a small amount of morality politics, presumption, and judgement involved with some of these takedowns. And no small amount of harassment of legitimate therapists and ABA friendly advocates. (To be clear I am not talking about those affected by abuse.) My advice to anyone, ANYONE who wants to warn parents about ABA is to get into the nitty gritty immediately. Talk about the origins, talk about Aversion Therapy, talk about the risks, BUT also mention PBI. Otherwise, you’re being sensational. And that helps no one.

And advocates are not alone in bad faith this way, even my most beloved school that my son goes to- they are not open enough about the darker aspects of the history of ABA. If you ask them, like I did, they will talk about it. But I think they should talk about it from the get go. Otherwise it looks deceitful.

Still, I don’t know that anyone is ever going to win this argument, technically both are right. I mean, as a slightly different example. I hate the term Asperger’s Syndrome or high functioning autistic, because I think it devalues my son as a non-verbal autistic. I hate that it was traditionally used as a term to explain to the Nazis why not ALL autistic people should be gassed, just the one’s without obvious genius. Personally, I think murder trumps abuse. Just because it happened forty years earlier than Lovass doesn’t mean it didn’t happen…

Hans Asperger’s career at a Vienna children’s hospital, seen here in 1921, blossomed in tandem with a Nazi program to euthanize children with disabilities.
Courtesy of Wellcome Library, London.

BUT, I am not gonna go after a single person who still wants to call themselves Aspie, or even the functioning label folks. It’s a part of their identity, and I can not control how they feel about the situation.

I can only control my actions and my feelings. I once asked Autistic Barbie in a comment, “What will unite the community?” I think we can all agree that electrocuting children and Nazis are bad.

So yes, my point, my addendum is this: The people who say that ABA is abuse are right. And the people who say ABA is not abuse and can be very helpful, are also right. Until there is a federal law against all aspects of Aversion Therapy, you need to get in there and make sure that your services are kosher.

And if you STILL don’t want to do ABA. There are other options, do your research. (Surprisingly, when you ask a person yelling at you about ABA, none of them have actual alternative suggestions. They’re too busy making sure you know that you’re a piece of shit. Just something I’ve noticed.) If I was capable, I would be doing all of this myself. I would homeschool him and keep him away from the dangers of being like “us” in a world that is meant for “them”. But as an autistic adult, with my own high support needs, I recognize the fact that I cannot do it on my own and require professional help.

So… in true autistic echoic fashion, I choose to repeat the words of a character who was most likely,”low functioning” autistic, Mr. Forrest Gump-

That’s all I have to say about that.

The Case for ABA

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…

Continue reading “The Case for ABA”