Disclaimer: a content warning for nonconsensual treatment. This post represents my views alone and not those of my employer. I am not autistic, but as someone working for an autism organization I am striving to listen to their voices.
As part of working in the autism world, I’ve been spending time reading and learning about various therapies used to treat autism. There is quite a bit of controversy in the autism world about just about everything, but one of the most controversial therapies is called Applied Behavioral Therapy. It is an evidence based therapy that is considered the gold standard by many treatment providers. It is also considered abusive by many people who actually are autistic.
After spending a class delving in depth into ABA, I understand many of the criticisms that autistics bring to the table, and I want to signal boost some of the problems that I saw in the class, things that apply to many of the ways we talk and think about autistics in general, and things that seem as if they could easily be remedied in order to access the positive elements of ABA (because there are some elements of the therapy that rest on solid and respectful principles).
Let’s start with that. The underlying principles of ABA as they have been explained to me rest on the idea that every behavior has a function, and if you believe that a behavior is not helpful to someone, you have to give them another way to fulfill that same function. This seems like a really good principle. If someone is engaging in self injurious behavior, or their life is being impacted by their behavior negatively (they can’t socialize but they’d like to, they can’t get out of the house, they’re having a hard time getting a job and would like one), it makes sense to help them change that behavior. But it’s also incredibly important to make sure the person isn’t left without their coping mechanisms entirely and has support to fulfill their emotional, physical, and social needs.
Unfortunately that principle appears to get lost really often.
What also gets lost is that any time someone is being treated for anything they need to be an active part of their treatment. Whether they are verbal or not, “high functioning” or not, they need to have some way to communicate their consent and acceptance of the treatment. I actually heard an ABA practitioner say that you might be working with people who “aren’t capable of consenting.” I don’t think it’s possible for me to state NO to this sentiment strongly enough. Consent is not something that is exclusively verbal. It happens in all kinds of ways. It is very, very obvious when non verbal folks don’t consent to treatment, and if you think you’re allowed to continue a treatment after your client has had a meltdown, started crying, started screaming, tried to run away, or tried to hurt you, then you clearly have no respect for the way that your client is withdrawing consent.
What really frustrates me about ABA is that it doesn’t seem to consider the person whose behavior is being modified an equal and active participant, nor does it recognize that they are the expert on their mind and life. It doesn’t take advantage of their knowledge base and attempts to bypass that really important source of information in the process.
In one class that I was in, the presenter spent three hours discussing ABA and behaviors, and only at the end of the session did they mention you could ask someone what they were trying to communicate with their behavior or what they might want to do. One story they told included the fact that they had never just simply asked their client to change the behavior, and instead had tried to motivate the person in all sorts of behavioral ways without making it clear to the person what they wanted and why.
Even when we are talking about behaviors, we have to remember that a part of human behavior is communication. Sometimes that is verbal and sometimes it comes in the form of behavior, but we can communicate with other human beings. Writing off the importance of that communication for helping us understand the behaviors of autistics is a way to continue othering people who are neurodivergent, and for us to ignore what they want and need.
This leads me into the next point: people with autism are people. Just like any other person, they will have preferences. Sometimes there isn’t any deep, important, mental illness scarred reason for liking one way over another. If you get preferences so do they. That means when they tell you “I don’t like this,” you respect their preferences. Unless there is a serious reason that their preference needs to be overruled (e.g. they will only ever eat pizza and it is causing a serious health concern), then there’s no reason to ignore their preferences. Don’t tell me you can’t tell if they’re communicating preferences to you. You know what non verbal communication looks like. You can figure it out. People with autism communicate and it’s not something to be ignored.
What really gets my goat about the way neurotypicals talk about people with autism is that they act as if someone with autism would never have preferences about their treatment, or about the things they find helpful or not helpful. There always has to be some underlying REASON, like “I’m not a visual thinker” or “I had a bad experience with it,” instead of it simply not resonating. One example that I heard of this was when someone asked why one person might not like the 5 point scale, or why it might not work for them when it worked for someone else. The instructor’s response was that they might have had a bad experience with it in the past.
Think about that. If two people are taught the same skill in school and one of them finds it helpful and the other doesn’t, do we assume that it’s because one of them had a bad history with it? No. We probably assume that people are different and sometimes one method of learning is helpful to one person but not helpful to another person. It doesn’t mean there’s something wrong with the method or with the person, just that they don’t mesh.
People with autism get preferences. Most especially they get preferences when it comes to their treatment. It is really hard for me to fathom how a treatment system that rests on the concept of reinforcing positive behaviors does not focus at all on communicating with the individual to understand their preferences, desires, and aims. How can you use positive reinforcement if you don’t know what the person wants?
At this point I don’t know if ABA can fix the problems that so many autistics have talked about, or escape the allegations of abuse. What I do know is that for treatment of autism to move forward in a positive way it has to do so with the full consent of the people getting the treatment. If that means our first priority is researching how to community, then so be it. Autistics already have ways of communicating. As providers are so fond of saying, every behavior is communication. Why are we so bad at listening then?
ETA: Thanks to Benny Vimes for pointing out that another huge problem with ABA is that it’s often used to push autistics to behave in less autistic fashions, e.g. making eye contact or reducing hand flapping. I will probably write further about this in another post, but hand in hand with the idea of consent is the idea that there needs to be a reason to treat someone. There is NO reason to change a behavior if the person who is doing it doesn’t want to change, unless they are actually literally hurting themselves right now. There is NO reason to force allisticness on someone who doesn’t want it.