Why I Left ABA

May 22 2015 ANXIOUSADVOCATE

When I first became an ABA Therapist, I was thrilled. I was actually going to use my psych degree, get paid more than minimum wage, and above all, make a positive difference in Autistic children’s lives. Or at least, that’s what I thought.

Now I look back, and the year I spent working in ABA is my single greatest regret.

When I left, it wasn’t a decision I made overnight. It was a long, difficult process, full of denial and confusion. I don’t enjoy talking about it because I did so many wrong things that affected kids’ lives, and I don’t want to offer any excuses for myself. But I do want you to get a sense of what the process was like, in case anyone reading this happens to be in the same position.

Before I go any further, I want to say that I’m so grateful for the Autistic community for sharing about their lives and their experiences. I’d probably still be working in ABA right now if it wasn’t for their tireless efforts to call out ableism, which helped me recognize it in my own life and in my work. Listening to their voices and their traumatic experiences of ABA is what made me quit, and none of these critiques of ABA are my own. I learned everything from Autistic people, and I’m going to link to many of their writings and videos that influenced my decision to quit.

Since ABA affects Autistic people’s lives first and foremost, their voices are the most important part of this discussion, and it’s essential that you listen to what they’re saying.

And of course, the links in this post are only just a small sample of all the invaluable information that exists within the Autistic community – you can learn so much more by continuing to seek out Autistic writers and speakers. Before you continue reading, I recommend checking out this FAQ page about Autism by Autistic Hoya and this video by Amythest Schaber, because there is already so much misinformation about what Autism even is. And there is no better expert on Autism than someone who actually is Autistic.

I also want to recognize that many forms of therapy for Autistic kids are called “ABA,” but not all would actually be considered traditional ABA and thus they may be less problematic than the forms I’m going to discuss in this post. Many times, a therapy is labeled ABA simply to get covered by insurance. This is why it can get confusing to discuss ABA since the term is used to encompass a broad variety of teaching methods. Please understand that when I’m talking about ABA in this post, I’m speaking from my own personal experience of it. This page is a good summary of the kind of ABA I did (though I never worked at that place specifically), which included Discrete Trial Training (DTT), Natural Environment Training (NET), and errorless teaching.

When I began working as an ABA Therapist, I had barely even heard of ABA before, and it was a bit counterintuitive to me. I googled it, and I found pages and pages of glowing reports from families about how much ABA helped their Autistic children. I saw that Autism Speaks, the largest and most well-known advocacy group about Autism in the US, supported ABA. I saw that ABA was an evidence-based practice built on scientific research, and that it was the most widespread treatment for Autistic kids in America. People billed as “Autism experts” highly recommended it. I walked away feeling mostly great about the work I was doing.

However, I also got my first small exposure to other, more critical perspectives. I didn’t know how to interact with the non-speaking kids I worked with, and this prompted me to do some cursory research about Autistic people’s experiences. I ended up finding Ido Kedar’s wonderful book about his experiences as a non-speaking Autistic, and he taught me that the ability to talk indicated nothing about a person’s intelligence. Ido openly criticized ABA for not realizing this simple fact, among other things, and he often writes in his blog about how much he was underestimated by his ABA team (such as this post). His experiences left me with some doubts about the field, but one negative view was far too easy to push aside in favor of all the positivity surrounding ABA.

And that’s largely what I did for the next several months. I took some of Ido’s criticisms to heart in that I worried ABA wasn’t always a good option for non-speaking kids, but it still seemed like it could really help some of them. So I focused on learning how to do my job well and trying to be the kind of therapist who never doubted any of the kids’ intelligence. I thought that was enough.

After a while, I decided I wanted more opinions about ABA from Autistic people themselves. I went back on Google, and I began to discover a vibrant online community made up of Autistic people and their allies.

When I started finding more blogs and articles from Autistic people describing the trauma they felt as a result of ABA, I was so horrified, I could barely finish reading them. This post by Unstrange Mind was one of the first that I found, and it really made me question my job. 

But I was also quick to defend myself. Whatever I read, I would try to find anything about the author’s experience of ABA that was different than mine. I assured myself that the ABA I was doing wasn’t the same because we weren’t using aversives, or because we had options for reinforcement that the authors didn’t, or because some of the kids made so much progress, or because I really cared about the kids.

That last reason was the most comforting to me. I thought that because I cared about the kids’ well-being, because I had a strong desire to help them, everything I did must therefore be in their best interest. In my mind, it gave me a special immunity to making mistakes.

Caring meant there was no way I could be hurting them. I now realize how dangerous this idea really is. I’ve hurt many people I care deeply about. Just because you care about someone or have good intentions does not guarantee you’re doing the best thing for them.

But I was convinced that ABA could not be harmful because it was designed to help, or so I believed at the time. The result of this mindset is that Autistic kids are repeatedly forced to do things that are unnatural, uninteresting, or even painful to them, all in the name of “therapy” – and all with smiles and upbeat attitudes from the therapists demanding it. The kids may cry. They may try to escape. They may refuse. But they must do it, because we have decided it is good for them and that we are helping them. They just may not be able to see it or understand it at the time. Real Social Skills writes very poignantly about this kind of attitude among therapists in this post.

This overall concept is called compliance training, and it is an integral part of many ABA programs. The rule is, once you give a command as an ABA Therapist, you must follow through with it no matter what. If a child tries to cry or escape or engage in any other “behaviors,” you can’t give in, because then you are only reinforcing their bad behaviors and making it more likely that they’ll use them in the future.

Hopefully, you can see just how disturbing this idea really is, as I do now. Compliance training does not provide any way for a child to say “no” once a therapist gives a command, because everyone assumes that a child doesn’t have a valid reason for refusing to do something. This video by Amythest Schaber (a.k.a. Neurowonderful) explains why this is so harmful.

As Amythest explains, compliance training sends a very damaging message to Autistic kids by never allowing them to say “no.” It tells them that their feelings are invalid, and at its worst, that there is something deeply wrong with them if they are hurt or unnerved by things that don’t hurt or unnerve us. As if being neurotypical automatically means that we somehow know what’s best for every Autistic child.

Compliance training becomes doubly dangerous when it is not rooted in a real understanding of Autistic people’s experiences. Oftentimes, an underlying reason behind many goals in ABA is to teach kids to look and act less Autistic. If a child has any behaviors that seem “repetitive” or “obsessive,” or any that are just not understood by the neurotypical people around them, then behaviorists often try to change these things. Stimming is the most common example of this, but it could be anything. Walking on tip-toes, talking about the same topic too many times, using echolalia, having an intense interest, not making eye contact, covering ears, not playing with toys in a specific manner – anything that behaviorists deem “inappropriate” often becomes a goal the child has to work on changing. (If you don’t know what stimming is, Amythest has two great videos explaining stim here and here. You can also read this post by BJforShaw.)

The problem is that these kinds of goals completely discount the fact that everyone has a reason for doing something. Just because someone else doesn’t understand why a child is flapping their hands or covering their ears or any number of other things, that does not mean the child has no valid reasons for doing so.

Since Autism often involves special sensory sensitivities, it makes complete sense that Autistic people react to the world differently than neurotypicals. In fact, many Autistic people have already explained that there is a reason for their stim and other repetitive behaviors that might seem strange to neurotypical people – for example, it is a natural expression of feelings and helps regulate overwhelming sensory input, as Amythest explains in her first video about stimming. Things that a neurotypical person would hardly notice, like fluorescent lights or soft background music, can be overwhelming to someone with more heightened sensory systems. This means that refusing to allow a child to engage in stim – which often involves interrupting or preventing their stim by physically forcing their hands down to their sides or on to a table – could be physically painful for them. Julia Bascom writes about how horrible that experience is here. Eye contact is similar; many Autistic people have also talked about direct eye contact as being a very overwhelming sensory experience, such as Judy Endow’s post here.

Compliance training and harmful therapy goals are two of the biggest problems with many forms of ABA, but there are plenty of other concerns that Autistic people and their allies have raised about the ABA they experienced. This is by no means an exhaustive list, but some further concerns include:

-Using explicit aversives to actively discourage unacceptable behaviors (see this post by Ink and Daggers).
-Withholding all rewards unless kids ask for it or earn it, including food, breaks, and affection.
-Not allowing any free time or only very small breaks in 5-hour/8-hour days (again, see this post by Unstrange Mind, which also details many other problems with ABA, including the goals meant for normalizing kids).
-Not recognizing motor apraxia, which may give the appearance an Autistic person does not understand a command, when in reality, they may not be able to get their body to obey them because they experience a disconnect between their mind and their body (again, see this post by Ido Kedar, this post by Amy Sequenzia, and this post at Emma’s Hope Book).
-Allowing behaviorists to have too much power (see this post by Real Social Skills).
-Using verbal prompts (“quiet hands,” “nice hands,” “hands down”) and physical prompts to prevent children from stimming (again, see this post by Julia Bascom).
-Using functioning labels to define a child’s abilities (see this post at Musings of an Aspie and this video by Amythest Schaber).
-Routinely using physical restraints as a solution for kids engaging in violent or destructive behaviors, instead of as an absolute last resort that is recognized as being harmful (see this post by Real Social Skills and this checklist for identifying sources of aggression at We Are Like Your Child).
-Not presuming the kids to be competent and, relatedly, not providing adequate means of communication (see this post at Emma’s Hope Book and this post by Ido Kedar).

Of these things, the ABA I was part of included all but the first.

When I was immersed in the field, I didn’t fully realize the ableist mindset underlying so many of the kids’ programs. Other people had been working in the field for years, and they spoke confidently about the teaching methods they used. Parents trusted them; a lot of them were probably told the same things I was. The people I worked with treated me kindly and considerately. I repeatedly heard that it was the only scientific evidence-based practice for Autistic kids and the most effective one, so I trusted the BCBAs who were writing the kids’ programs, and I assumed that there was a good reason for why we did the things we did.

Of course, ignorance isn’t an excuse. Whether I took the time to listen to Autistic people or not, the ABA therapy I did was harmful to those kids. Knowing or not knowing didn’t change that.

It took me a while to fully realize and accept why many Autistic people oppose ABA. I would wake up and go to work, determined to find more reasons why my ABA was good. I would feel happy to see my client and watch my client be happy to see me. I would be with people I admired and respected, hear about some of the kids’ progress, and in those moments, everything I read the previous night would feel like just a bad dream. Then I would go home, continue to look up more about what Autistic people had to say about ABA, and again have to try to convince myself why my ABA was different.

During this time, I tried everything I could to see if there was a way I could do ABA without running into ethical issues, but I repeatedly found that I had to make a choice between doing the ABA and respecting the child.

Withholding rewards was part of the ABA. Making kids talk or sign, even when it was clearly not the best form of communication for them, was part of ABA. Extinguishing stim, coercing eye contact, teaching neurotypical play skills were part of ABA. Forcing compliance was part of ABA. If I didn’t want to do any of those things, it meant not being an ABA Therapist.

When I finally began voicing my doubts to the people I worked with, the most common defense I heard was that ABA is a scientific, evidence-based practice, and that we need to rely on scientific studies more than anecdotal evidence from Autistic people themselves.

But those words really aren’t as impressive as they seem, in many cases of ABA. Yes, the methods used in ABA are “effective,” but only in the sense that a lot of Autistic people who go through ABA come out looking “less Autistic.” That is, an Autistic child is likely to learn to suppress Autistic behaviors by going through ABA that has normalization at its roots. But that doesn’t say anything about how ABA affects an Autistic person’s self-esteem, emotional state, and view of the world. It doesn’t say anything about whether ABA is ethical. If we’re measuring whether ABA helps Autistic people feel safe, accommodated, and accepted in a largely neurotypical world, then it’s very ineffective, according to the overwhelming evidence from the Autistic community.

Here’s an example. If someone beat a child to prevent him from doing something they didn’t like, he would probably stop doing it, and you could then say beating is an “effective” method. They could even take data as part of a scientific study to show you that their child’s behaviors decreased after they started beating him. But obviously, that doesn’t mean anyone should beat a child. That doesn’t mean it’s not abusive when a child is beaten. That doesn’t mean that child will grow up feeling healthy and happy about who he is. Abuse is never okay, and science cannot address the ethics of a method.

It’s even more concerning that ABA was founded by Ivar Lovaas, who bluntly stated that he believed Autistic people weren’t even people. This is an exact quote from him: “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.” Lovaas also used electroshock on kids with Autism.

Of course, very few people in ABA today would outwardly agree with what Lovaas said about Autistic people. Most probably aren’t even aware. But his thinking is still clear in many aspects of ABA – too many behaviorists continue to discount the fact that Autistic people have valid reasons for their way of doing things, even though there is now an entire community of Autistic self-advocates to explain their own experiences.

If your goal is to help a certain community, one of the first things you should do is make sure you’re in touch with the community you’re trying to help. Their voices are more important than anyone else’s. And yet, many ABA programs remain completely disconnected from Autistic people themselves.

Once I realized that nothing was going to change after I expressed my doubts, I finally couldn’t defend myself anymore. ABA was wrong, and I had to get out. I compiled a list of many of the anti-ABA articles I’d read from the Autistic community, emailed it to my supervisors, talked with some of them again about why I was leaving, and then I finally got the hell out.

I’m lucky that I was able to just walk away from it. But there are still far too many Autistic kids who can’t leave, no matter how much they want to.

Kids I care about are still in ABA, 5 days a week for 25-40 hours. And they could easily spend another decade or more of their life there. Many of them will grow up in the field, internalizing the message that they are flawed simply because they were born with a different neurotype. The simple fact is that many Autistic people who went through ABA describe it as being abusive, and some even have post-traumatic stress because of it.

If you work in behaviorism or ABA – if your job has any of the characteristics mentioned above – please take the time to read what Autistic people are saying and really evaluate whether you are helping or harming. Talk to your supervisors or coworkers about what you’ve read from people in the Autistic community. Ask yourself whether you would feel comfortable talking to an Autistic person about your job. I know that it’s daunting, and honestly, it’s not easy. It wasn’t easy for me. But I made it through it, and you can too.

Also remember: this is not about you. This is not about what’s easiest or most comfortable for you, or what’s best for your career. This is about Autistic kids and adults who grow up feeling traumatized and devalued. This is about truly helping Autistic people by making society more safe, accepting, and accommodating of all neurotypes. Make sure you’re fighting for that goal and not against it.

Learn More
Autistic Hoya: Autism FAQ Page
Amythest Schaber: What is Autism?
Ido Kedar: A Challenge to Autism Professionals
Unstrange Mind: ABA
Real Social Skills: Nice Lady Therapists
Amythest Schaber: A Few Words on Compliance Training
Amythest Schaber: What is Stimming?
Amythest Schaber: What is Verbal/Vocal Stimming?
BJForShaw: I Stim, Therefore I Am
Unstrange Mind: O is for Overloaded, Overstimulated, and Overwhelmed
Judy Endow: Autism and Eye Contact
Ink and Daggers: I’m Sorry, but That’s Not Earning Your Token
Emma’s Hope Book: “Presume Competence” – What Does That Mean, Exactly?
Amy Sequenzia: My Uncooperative Body
Emma’s Hope Book: Rethinking Your Beliefs About Autism
Musings of an Aspie: Decoding the High-Functioning Label
Amythest Schaber: What About Functioning Labels?
Julia Bascom: Quiet Hands
Real Social Skills: A Basic Problem with ABA
Real Social Skills: Restraint is Violent
We Are Like Your Child: A Checklist for Identifying Sources of Aggression
Emma’s Hope Book: Tackling That Troublesome Issue of ABA and Ethics
Amythest Schaber: A Note to (What Feels Like) Every ABA Therapist Ever
Ink and Daggers: Dear “Good Behaviorists”
Real Social Skills: If You Want Me to Believe You’re a Good Behaviorist
Unstrange Mind: What Does Helpful vs. Harmful Therapy Look Like?

[Photo: Copyright Lali Masriera cc // Unaltered]