Questioning Autism Interventions; The Controversy of ABA

I still remember the joy and excitement I’d felt after taking my ABA test and learning that I had passed. Registered Behavioral Technician. That was what I was now. It was a new chapter, and I was ready. I’d believed what I was doing was correct, that this was true advocacy. I was enthusiastic and ready to learn and grow. I deeply thought that this was going to be a great job, that it was admirable even.

Not at all the truth.

The best decision I’ve recently made was letting my RBT license expire. For good.

The First Crack in the Foundation

It was my very first day as a behavioral technician, and I was incredibly eager to make a difference in the lives of autistic children. With a binder full of behavior logs/data sheets and a head full of behavioral principles, I felt prepared and confident. I had been trained in what I had been told were the “gold standard” interventions for autism — the approaches that were backed by “decades of research.” I would eventually learn this not to be the case. Eventually, in the long run, I learn more and gain a better insight and understanding of my own true self.

When starting out, the training process was fast. They didn’t really go into much, if any, detail when it came to the definition and explanation of what autism actually was. Understanding the different characteristics and profiles of autism didn’t seem to matter a whole lot. Behavioral principles and strategies were the primary, if not only, focus.

That rubbed me the wrong way. It was something that I remember at the beginning, that I took note of in the back of my head.

I wanted to have a more detailed description and more information on the characteristics of autism. But I unfortunately had to put my trust in believing that applied behavioral analysis was truly the best intervention and treatment for autism. Not at all the case.

What ABA Teaches Autistic Kids

Through my training and what I had learned while being in the field of ABA, I always assumed that manipulating external/environmental factors would change the behaviors of autistic children. I was taught and understood that, through reinforcement, the likelihood of a particular behavior could be manipulated and changed.

In ABA, there’s actually no intent in understanding cognitive processes and their influence on individual behavior. It is a known fact that autistic individuals experience differences in sensory processing, motivation, and problem-solving — Unfortunately ABA doesn’t really care to understand that, I’ve learned.

ABA primarily teaches compliance. It overly focuses on eliminating/encouraging behaviors rather than actually listening to individual experiences and aiding in building relevant life skills for each individual. The longer I worked in ABA, the more and more I started to realize and understand this reality. I absolutely hated it.

Not only that, but when I eventually learned the horrific history behind the founding of ABA and the way it was originally used in its early stages, I was completely done with it all.

ABA was first developed by O. Ivan Lovaas, in the 1960s. At the time, Lovaas created applied behavioral analysis as a way to extinguish autistic behaviors.

Therapists were much more likely to use punishment — slapping, yelling, even electric shock—to decrease “undesirable” behaviors. They expected children to follow their rules and do exactly as said, with no regard to the child’s internal experience. Absolute cruelty.

A particular quote, said by Lovaas himself, sums it all up pretty well: “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.” —Yikes. This is what ABA was created from; the belief that autistic individuals are not at all human. The foundation of ABA is incredibly toxic. It makes it far worse that ABA often fails to recognize this history. Still, even today. (Source)

Listening to Actual Autistic Voices

As an RBT, I had to run all of the trials each session that I had with a kid (a lot of them, more than once). I always felt incredibly stressed trying to plan out and get all of the trials in and have enough data. It was a high-stress environment, that was very demanding.

Most people that were hired in did the training, worked for one or two weeks, and then eventually quit. Both ABA clinics that I worked at (I hate that they are called clinics, like autism is some form of disease) had incredibly high turnover rates. Because of the high turnover rate, they normally hired just about anyone. As long as you could pass a background check, nothing else really mattered. I heavily despised some of my coworkers; some shouldn’t have even been working with kids. They were miserable, so they made the kids miserable.

Once I started questioning and learning more of what autism actually was, then I found the online autistic community. I started listening to actual autistic voices — not what ABA told me was the voice of autism. Slowly, I began to realize that a lot of what I was seeing and hearing concerning autism was actually somewhat similar to my own personal experience. I started to question it all.

I was never diagnosed in childhood or went through any true ABA therapy as a kid (I’m just now, at 27 years old, trying to get a diagnosis—a long and overall terrible ordeal). But I’ve slowly started to realize that even though I never had ABA services, some of the “therapy” that I experienced as a kid was most likely similar in some ways. Or, at the very least, it harmed me in similar ways.

Unlearning and Relearning An Autistic Identity

As a kid, I constantly struggled with navigating social interactions. Most of the time, I preferred to stay in my own space and do my own thing. I was the kid that took a book with me to school and would find a corner away from everyone else to read at recess. Every day. I spent most of my time in my own mind, alone.

When I was around 8-9 years old, I started to see a psychologist to treat unmanageable, incredibly high levels of anxiety. I was diagnosed with a generalized anxiety disorder. My treatment involved lists every single week that challenged me to expose myself to many different social situations and uncomfortable interactions/situations.

The focus was primarily on changing my behavior and encouraging me to pretend to be someone different. It was all about appearing more social and, basically, appearing as neurotypical as possible. A masterclass on how to mask, is how I conceptualize it now.

After every therapy appointment, I would come home and have a meltdown in my room. I knew deep down that my anxiety was never truly getting better. But I was going to one of “the best” child psychologists in town. He was supposed to know his stuff and be competent. He was not.

Also, I can only laugh at it now, but he would start my therapy appointments by throwing a football directly at my face (and not always at the very beginning, so I would really not know when it was coming). The less that I would react and flinch, the higher the indication was that my anxiety was managed. Or something along those lines —- It was basically him testing and teaching me how to mask my face end expressions. Appear okay and not anxious. He never actually tried to understand the underlying purpose behind my anxiety or help me actually manage it.

So, as a child, I learned to act and heavily mask in order to appear functioning. If I could appear normal, then maybe with time I would hopefully become exactly that —

 Normal.

And it’s also worth noting that at the time, I felt like my parents dealt with enough, regarding my youngest sister (who eventually, in adulthood, was diagnosed autistic). Growing up, her meltdowns were more external, and she appeared to have higher support needs than I did. I couldn’t burden them any more, it was already hard enough as it was — That’s what I believed. The presentation of autism can be vastly different— me and my sister are living proof of just that.

Unlike my sister, I internalized everything. I learned how to turn inwards, internalizing everything and heavily masking. That is the only way in which I survived, I truly believe.

Understanding, Acceptance, and The Neuroaffirming Way

So, if hateful and harmful practices were the foundation of ABA, where should we go to help autistic individuals and children? Neuroaffirming therapies/supports that are willing to fully understand and acknowledge individual needs and differences in support needs. That’s where we should funnel autism support and resources now and moving forward.

There needs to be an understanding that autism not only impacts a person’s childhood, but follows them into adulthood. It is something that they will live with and that is a part of them for the entirety of their lives. No amount of therapies or interventions will “cure” autism. It is not just a childhood condition that needs early intervention to “treat” it.

Support needs vary vastly, and it’s important to understand that autism can present in a vast array of ways. It’s important to be curious and to question your own knowledge and biases. We should all be learning and building a more empathetic understanding of autism together. Continue learning and listening to actual autistic voices. There is hope in the future of autism support and acceptance. We will get there someday, I truly hope.

Love,

Kaitlin

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