"Ethical" ABA still lacks empathy

The ABA providers I worked with, almost all of whom frequently touted how ethical they were and how much they love autistic people, all seemed to have a severe deficit in their capacity to recognize the emotions of the people they were working with. It was truly a bizarre disconnect to have someone tell me how ethical they are and then turn around and ignore the emotions of those they professed to care about. Here are some examples of emotions that they seemed to have absolutely no capacity to understand in their clients:

 

Ennui
 

A long time ago when I was in high school, I spent a few months not in school for medical reasons. I had nothing to do but pace and do puzzles, and it was the single worst experience of my life. I usually describe this time as being marked by having a profound sense of ennui, the same kind of feeling you get when you are unemployed and feel like you should be having a nice, relaxing time but can’t because your life is stalled and in limbo, or how I felt during covid when I couldn’t go into the lab to make progress on my research.

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A year ago, the daughter of a friend of a friend killed herself after having been “homeschooled” after being bullied. In reality, she had very little to do all day, and I saw her go from being a happy person who tried to cheer everyone up, to thinking life was so meaningless it was worth ending. A lot of the people I saw in clinics were under such close supervision 24/7 that while they might have felt the same way, all they could do was hit themselves in the head repeatedly. The providers would say of the students and clients, “it must be automatically reinforced self-injury and they must enjoy the sensory sensation of their hand hitting their head, because we can’t figure out why else she is doing it.” It did not occur to them that people, particularly autistic teenagers and young adults, have a fundamental drive to be doing things, and that it is unethical to suppress that. Often the clients did stop hitting themselves or attacking when I started genuinely helping them to be able to do things. A lot of these providers were shocked at the results I was getting, which would not be the case if they had empathy for the students and understood how awful it is to be confined to a room all day. Letting them stim and being physically in the room with them is not enough to make it suddenly different than the old ABA.

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One of the things about the way ABA organizes itself is that because older clients needing their services tend to have been more severely neglected and therefore engage in higher rates of aggression and self-injury, and may also be as large as the staff, ABA staff tend to "work their way up" from small children to teens and young adults. This results in providers working with them who have no experience working with or have no understanding of the emotional needs of teenagers, which they justify because they claim autistic people are "developmentally disabled." These providers think they can talk to autistic teens the way they talk to children, which is obviously upsetting to a teenager, and they fail to recognize that developmentally, teens and young adults need different things than children. They also seem to think that how much someone speaks in a conversational manner dictates how much they can understand, and will often say bizarre things like "I wonder what goes on in their heads?" or "I like to imagine they can understand us" about the clients. They frequently fail to talk to teenagers like human beings because they think that someone not responding back means they can't understand you, which I think most people who have ever raised a teen would probably have something to say about.

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Anxiety

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Many people find chemistry, my area of expertise, very stressful. Back when I taught chemistry, students would come to my office hours and I would ask them to do the problem they were having trouble with and would watch to see where they got stuck. I noticed if they wavered before writing something, I noticed if they looked up at me for reassurance, I noticed if their brow furrowed, I noticed if their shoulders started slumping, and I noticed all kinds of other tiny markers of frustration, confusion, anxiety, and hopelessness. I thought about whether it made sense to tell them to keep trying, to give them a hint, or to explain the answer. None of these things are things that ABA providers think about.

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When I was working in ABA and working with a student on a sorting silverware task (because of course they were having him sort silverware), I told the BCBA that teaching someone to sort silverware didn't seem that different in technique to teaching chemistry, and she looked taken aback. To me, I was just tracking all the same things I tracked in chemistry students, but instead of tracking their micro-hesitation about whether to write an x or an x , I was tracking his micro-hesitation about where to put a spoon. At the end of the day, I knew how to do both tasks readily so there wasn’t much difference in the teaching of how to perform the tasks. In both cases I was simply keenly aware of how the student was feeling and whether a push or a wait or an assist would be best.

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Most ABA providers, instead of paying attention to the feelings of the students, seem to get frustrated with them when they aren’t doing something correctly, which has always baffled me. If someone doesn't know how to do something, and you never teach them how to practice on their own, how is that possibly the student's fault? For almost everyone, learning is an incredibly stressful task as it is, and they do not need someone getting annoyed with them for doing something wrong. When I began hosting conversation groups for learning Dutch, which eventually morphed into a beginner class and a book discussion group for intermediate learners, people would have so much anxiety about speaking and doing it wrong, and the most common feedback I have received over the years is how grateful people are that I emphasize that it’s okay to make mistakes. What most people in ABA clinics don’t seem to realize is that many people are terrified of making mistakes, and it helps so much with learning when you help people feel comfortable about it. I think if the ABA providers had ever taught themselves a skill or were good at anything at all they would probably have a better understanding of how to teach.

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Once when working in ABA, I saw an RBT yelling at a student for getting something wrong. The student, who was a teenager with limited speech, then began trying to hit the RBT's arm, so she ran away while reprimanding him. The BCBA, who was in the room, told me that they "weren't sure the function of his behavior.” These people legitimately do not understand why someone would get upset in such a scenario. When I told her I thought he probably did it because he had just been severely yelled at for a minor mistake and didn't like it, she said she would need to "look into it."

 

 Helplessness

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Once I was working with a 5-year-old with limited speech who loved playdoh. He had a game where he would pretend to add ingredients to his cup of playdoh, as if he were cooking something or making a potion. When he started putting it towards his mouth to pretend eat it, RBTs would come over and yell “NO!” at him. He, being 5, started doing that more, and even started putting it in his mouth. One RBT, who was 200 hours short of the hours needed to become BCBA, yelled "NO!" at him while I was working with him, then told me “if he does that again you can just take it from him.” I was later told by the BCBA that he would no longer have access to playdoh. In short, he lost access to his favorite thing because the ABA providers reinforced his playdoh-eating behavior. The RBT seemed absolutely confused when I suggested that it is wrong to take away someone’s favorite thing just because you reinforced eating it, and that it might be more ethical to teach the child not to eat it than it would be to take it away. They told me they were in the right because "autistic children need to learn to accept no." If you stop for a minute to think about how it would feel to have everything you've ever liked or shown interest in taken away from you or be subject to removal, you can understand why I would want to prevent that feeling of helplessness in someone for something they weren't even responsible for.