The Self-Harm Bogeyman in ABA

CW: The following article may be triggering to people that struggle with self-harm and contain descriptions that may not be appropriate for everyone.

“ABA has helped this autistic child so much. They’ve stopped self-harming!”

The phrase is beaten like a drum by pro-ABA advocates. It’s an anthem that proclaims, “ABA isn’t bad because it stops harm!” The problem is it doesn’t address what lengths ABA is going to stop that harm. And does harm need to be stopped behaviorally in the first place?

Autistic people are three times more likely to self-harm in both children and adults than the general population. An estimated 42% of autistic people engage in self-injury. It’s clearly behavior that requires attention.

I think most neurotypicals (in the broad sense, not mentally ill) view self-harm as an irredeemable behavior that needs to be stopped at all costs. It’s a visual representation of how abnormal someone is acting. It’s unfathomable; why on Earth would you ever want to hurt yourself? Isn’t that against the integral drive of self-preservation?

Let me be clear, I do not advocate for self-harm, nor do I think that it’s bad to stop it. Certain self-harm behaviors pose a threat to safety and long-term well-being. Some people struggle with head-banging so severe they cause concussions or worse. There are interventions that help with this that are more humane than ABA, but I will get into that in a minute.

In my own experience, I have self-harmed both for sensory seeking reasons and for “mental health” reasons. There are many reasons people self-harm, and most people don’t really think about why someone might use it as a coping mechanism.

For me, my self-harm during meltdowns comes in the form of hitting my head or hitting my head against things. I’m old enough now to regulate my environment, so I can choose soft things to headbang against. I also used to self-harm as a teenager during acute panic attacks. So, why would I self-harm?

It Starts with Understanding What a Meltdown is Like

Think of the most unpleasant busy place you go. Maybe it’s a post office full of people. Maybe it’s the department store the weekend before Christmas. Or maybe it’s a kid’s party where every child is screaming and running around. Now imagine your least favorite song. It can be anything, just that song that when you hear it, you feel angry. Maybe it’s Baby Shark or Let it Go for the 100th time. Got it? Now imagine you’re hungry and tired on top of all of that.

So, putting that all together, you’re at another child’s birthday party, and someone just brought out the cake, and so everyone is screaming. In the background, Cocomelon is blasting at an unholy volume. You skipped breakfast because you were running late trying to take your kid to this f*$&!^@ party, and you worked late, so you got 6 hrs of sleep. Spend a moment here. Hear the screaming, feel the full-body ache of hunger and tiredness, feel the bristling of hearing that song.

It’s horrible, isn’t it? Makes you want to “bang your head against the wall”? That’s it. Now you understand why an autistic child in similar circumstances may actually bang their head against the wall.

For me, it feels like a million sirens are going off in my head all at once, which is physically painful. All I want to do is stop the noise. What stops the noise? Hitting my head. That hard sensation quiets things, even if only for a moment.

Other forms of self-harm do the same thing. They create a sensation so extreme that it can take away the pain for a minute. Like the tongue-in-cheek adage of “Your finger hurts? I’ll hit your leg with a hammer and I promise your finger won’t hurt anymore.”

I’ve also heard from others that sometimes they physically can’t feel the self-harm during a meltdown. If everything is cranked up to a 10, what normally would register as a 10 with banging your head isn’t going to register.

And then there’s the aspect of anxiety. Going back to the kid-birthday-party-hell scenario created earlier, imagine how you would feel. It’s such an overwhelming situation you’d likely feel incredibly anxious. Particularly if you were a child and couldn’t control the situation or remove yourself when the anxiety started to build. Or, maybe you don’t know what “anxiety” feels like, so you’re not sure why you suddenly feel bad all at once and don’t know what to do with it. On top of that, adults around you are freaking out and telling you to stop and wanting you to fulfill all sorts of demands.

What do you do with that anxiety when you don’t know how to cope with it? I’m sure you’re starting to see how self-harm might make sense to cope with anxiety. The body doesn’t process how harm is caused differently when you’re the one causing the harm. It just registers it as harm. And what happens when harm is caused? Endorphins are released.

Self-Harm and Self-regulation

One study examined people’s endorphin levels before and after self-harming (Störkel et al., 2021). They found that people before self-harm had significantly lower endorphin levels. Endorphins after self-harming weren’t significantly higher than daily life. This suggests that self-harm may be an attempt to get back to homeostasis, the baseline endorphin level that we experience daily.

Another interesting finding was that the severity of the injury was tied to the level of endorphins released, which has implications for more severe levels of self-harm in autistic people.

Self-harm serves a purpose. So, when ABA “trains” self-harm behaviors out of a person, it doesn’t address the purpose. There is no physiological intervention done. There is no cognitive intervention done. It only removes the behavior. So, where does that anxiety or sensory overload go?

The truth is, we don’t know. It’s not something that ABA research has studied. ABA research has been so focused on behavioral outcomes that we don’t know the effect of ABA on anxiety. We know that CBT (cognitive behavioral therapy) and ACT (acceptance and commitment therapy) effectively reduce anxiety in autism. But these differ from ABA in that they are cognitively based.

We have no evidence to support that the anxiety and sensory overload experienced during meltdowns goes away when self-harm is trained out of someone. What kind of harm is caused if we’re not teaching cognitive coping skills to deal with these feelings?

This is the last time I’ll bring you back to the kids-birthday-party scenario, but bear with me. Imagine that state of overwhelm happens frequently, and you don’t have any means of coping with it other than self-harm.

Then, imagine someone comes along and takes away your phone until you stop self-harming. You learn over time that you can get your phone back if you don’t self-harm (or not get it taken in the first place), so you learn not to self-harm. Does having your phone stop you from feeling overwhelmed at the party?

No, having your phone doesn’t stop anything from happening around you. It just gives you access to something that you are really reinforced by. But it was successful because you stopped self-harming, right?

Outside the Scope of ABA

Many clinics don’t train staff at all to deal with sensory meltdowns. As an RBT (registered behavior technician), I asked my BCBA (board-certified behavior analyst) to train us on sensory meltdowns. I noticed staff were often making meltdowns worse. She said, “no, that’s outside our scope.”

If a fundamental symptom of autism is outside the scope of an ABA therapist, and kids are spending 20-50 hrs a week with these therapists, how do we expect them to handle meltdowns? Many behaviorists believe that ABA can fix meltdowns through behavioral mechanisms. I saw this with my coworkers.

We were trained to assume the meltdown was caused by the function of access, escape, or attention.

When they thought it was access, they wouldn’t give the child access to regulating items (stim toys, etc.) until the child performed another task so it “wasn’t contingent on the self-harm.” When it was escape, they’d force the child to do whatever task they were doing before the self-harm, so “we didn’t reinforce them to self-harm.” And when it was attention, they would take the kid to a padded room and then ignore them until they stopped.

I watched the staff do this, and the kids get increasingly agitated, if not immediately meltdown. They would often start with smaller behaviors like crying, which escalated to self-harm when they weren’t given the tools to regulate. The staff was causing meltdowns by not knowing how to handle them.

The level of education ABA therapists have (or don’t) causes real-life consequences. Since I have personal experience dealing with meltdowns, I knew how to help the kids cope.

One kid was violently self-harming and aggressing against others. I dimmed all the lights, helped him get to a safe space and started giving him sensory items I knew he liked. This was the opposite of how I was “supposed” to help him because I was reinforcing his self-harm by giving him coping items. All the other staff was panicking, trying to figure out what to do, and there were about seven adults in the room trying to calm this one kid.

I showed him a sand video and he calmed down almost instantly. I reversed the meltdown because I showed him how to sensory cope. Because we had a good relationship, he wasn’t agitated by me being close to him like some other staff. He stopped self-harming and stopped being aggressive towards others.

Alternative ways of coping

There are ways to deal with self-harm that are humane. And not every self-harm behavior needs to have an intervention. I don’t stop myself from self-harming anymore unless there’s a real risk of harm. I’ve learned sensory coping. I taught myself ways to “harm” that won’t leave lasting marks, like headbanging on soft items, holding ice cubes, flicking myself with a hair tie, or hitting myself in ways that won’t bruise.

Occupational therapy, non-ABA TEACCH, art therapies, and cognitive therapies (like TF-CBT, ACT, and DBT) are all options for reducing harm ethically. These are humane, opposed to ABA because they help address the cause of the behavior. An OT might help you find a space at the party that’s quiet. A non-ABA TEACCH interventionist may teach your family how to help you regulate in the overwhelming environment. An art therapist may have you draw, listen to music, or create something to help you regulate your feelings. And a cognitive therapist may teach you the mental techniques you can use to help bring you back to a state of homeostasis without self-harm.

So, when you hear, “this child is so much better off because ABA fixed their self-harm behavior!” you should be asking, “what skills did they learn to regulate the cause of the behavior?”. For self-harm to be truly addressed, we cannot solve it through further harm.

I Was Part of the “Good ABA”

I became an RBT because I saw a real opportunity to help people.

A coworker mentioned that she had been looking into the voices of the autistic community. She said that there was a big push away from ABA. In training, they presented all the research that supports how much better autistic lives are because of ABA; reduced self-harm, aggression, greater adaptive functioning, and less family stress. With that kind of evidence, who could possibly be against ABA?

Our clinic was a part of the new “good ABA.” It checked off all the boxes of what to look for in ABA clinics; “child-led,” “natural environment teaching,” “reinforcement, not punishment focused,” “communication driven,” and “not discrete trial training (DTT).” I was part of a force for good, part of the cutting edge of the field where ABA was seeing true reform.

Content Warning: this article contains descriptions of abusive therapy. Reader discretion advised.

It still haunts me hearing that electronic voice say “granola bar.”

The longer I worked there, the more I started seeing the red flags that weren’t visible when I initially wore those rose-colored glasses. It started with one of my favorite students, a nonspeaking child who was incredibly intelligent and very funny.

I could tell that he was bored with his programming. 90% of it was maintenance. He already knew how to perform the desired behaviors. They were still there because the BCBA and others couldn’t reliably get him to produce the behaviors.

We were encouraged to run DTT-style trials with him, where he would get frustrated easily to the point of self-harming. He was doing this with every tech three times a day, 40 hrs a week.

I started seeing other coworkers gossip about him, discussing how he was “manipulative” because he would seek reinforcement without performing “desired behaviors he knew how to do.” I couldn’t help but laugh at the idea of a 7-yr-old being “manipulative” of adults around them.

That kind of thinking was what led to my first instance of seeing something so morally abhorrent that it was impossible not to speak up. I shadowed another RBT and watched the student request food on his AAC device. Previously, the supervisor had set up an eating schedule for the kids to eat their lunches during the school day, and he was out because of training.

The RBT gently told him no, that he would have to wait for lunch, and he went and played. He continued returning to his AAC, asking for food, and the RBT continued to deny him. I watched this slowly escalate over 30 minutes until I saw the student start breaking down crying. He brought her to his snacks and pointed at them, and the RBT continued to say no.

I urged her to let him, but she brushed me off, saying that it would be “reinforcing maladaptive behaviors.” He went to other staff and brought them to his snacks, and everyone ignored him because he was exhibiting “attention-seeking” behavior. He manded over and over again, and it still haunts me hearing that electronic voice from his AAC device say “granola bar.”

I had enough and sat him at the table and gave him food. He continued to cry softly as he ate his snacks, so emotionally overwhelmed he couldn’t stop. I told my supervisor about the incident, and she wrote up a “training protocol” that was posted on the door of how lunchtimes were flexible.

I asked if she was planning on telling his parents, and she said, “What is there to tell? A kid having a problem behavior for food? That’s nothing new. We don’t report that kind of thing in our clinic, and if we did, there’d be way too many things to write reports on!”

 “It’s like he had PTSD or something!”

That’s not where it stopped. Shortly after, another supervisor bragged in a staff meeting about their research on the IISCA and a functional analysis they ran on a nonspeaking child.

The child had a history of self-harm and aggression, so they were trying to target the behavior so they could “turn it on and off at will.” They first gave the child homework and a bunch of puzzles all mixed together, so there was no solution.

In response, he didn’t have a “maladaptive behavior,” so they were forced to escalate. They started yelling at each other from across the room (knowing this kid had extreme hypersensitivity to noise) and banging items around the room. They brought in a speaker to blast music that the kid hated. The music was so loud it could be heard in other rooms.

He continued to self-regulate and didn’t have a maladaptive behavior. They started forcing him to watch clips of TV shows he hated and did all of these aversives combined, trying desperately to produce a behavior.

Finally, what broke him after 20 mins of what I can only describe as torture, they let him get up as if to let him leave and then forced him to sit down when he had reached the door. The kid started crying, and they considered the functional analysis a success.

I was horrified as my supervisor enthusiastically told me how much better he was making this child’s life. All I could feel was the deepest pit in my stomach, knowing how horrible my own sensory problems were and imagining that on a child who could not stop it.

In a staff meeting, the BCBA joked that “it’s like he has PTSD or something” when discussing him avoiding the room they were in, both supervisors and the RBT who were present at the time. She discussed how frantically he would act when she would even start to blast music to “turn on the behavior” and how quickly he would scream “my way, my way, my way!”

She said all of this laughing and boasting about it, and I looked around and saw my coworkers laughing with her. They didn’t understand how cruel it was. They had no training on dealing with sensory regulation in autistic children.

Every clinic considers itself to be the “good ABA.”

This clinic considered itself part of the “good ABA” and still does. I had no idea how to report it and was traumatized by my experience. I had heard about how stringent the BACB was with documenting events to take a case seriously.

At the end of this, I didn’t have enough documentation to feel like they would genuinely do much, especially hearing their inaction at even more significant ethical violations like JRC’s use of GED shock devices. I could already envision the slap on the wrist or, worse, complete dismissal “proving” my supervisor in the right.

I went public with the information, knowing I would be terminated.

Statistically and anecdotally, not every clinic can be the “good ABA.” It’s so easy to lose sight of what’s happening when you’re hearing things described in more appealing language. When valid criticisms are raised, ABA therapy has historically been morally disengaged.

I urge practitioners to watch the reaction of refusing to acknowledge harm when presented by autistic people, by coworkers, by supervisees, and by that feeling in the gut that something isn’t quite right.

It’s time the field listened to autistic people, especially when it’s difficult.