Breaking Down ABA, Again: Part 1; Ethics, Standards, and Side-Effects

[A note, December 2021: Time passes and I learn things. I hope we all do. I ran across a link to this series of posts recently, and came back to re-read them. And realized that they contain statements I no longer agree with. I have, multiple times, defended limited use of Behavior Modification methods, including ABA. Since then, I have come to understand that the risks of ABA far outweigh the potential benefits. The positive accomplishments I have seen occur in ABA therapy happened despite the use of ABA rather than because of it, and this is one of the most insidious risks of all. Children may still learn in a horrible learning environment, but their success is not an argument in favor that environment! This parallels a common misunderstanding about socioeconomic privilege. Many people use the existence of highly successful people who overcame great odds as an argument that everyone in disadvantaged situations should be able to pull themselves up by their bootstraps. Nothing could be further from the truth. A better explanation of my current beliefs about ABA can be found here https://wordpress.com/post/restlesshands42.wordpress.com/3812%5D

[Read the Introduction here]

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SOMETHING IMPORTANT IS MISSING

ABA-based therapies are currently considered the only scientifically validated “treatment” for autism in the United States. Let me defer, for the moment, discussing what is meant by “treatment” and whether or not that is an appropriate word to use.

Any medical or therapeutic treatment, particularly one used on children, should be subject to rigorous safety testing by independent researchers. To the best of my knowledge, no such research has been done. By this, I mean research that actively looks for any downsides to ABA, and follows clients up in a long-term study with a control group.

I have come across many possible side-effects to ABA (and related therapies/teaching methods), mostly reported by autistic adults and autism parents, and occasionally by professionals. Some may be evident immediately, but others are only noted many years later (perhaps the client is aware of them earlier but is unable to report until much later due to delayed language skills or the difficulty many autistic people have in recognizing and reporting emotional experiences. Also, sometimes the client has to reverse habits learned in ABA therapy before realizing how detrimental they were.)

Here is an incomplete list:

acute emotional distress; decreased self-esteem, self-hatred; depression; anxiety (particularly when being observed by others); suicidal ideation; post-traumatic stress disorder; loss of trust in others, including primary caregivers; increased aggression; reduction in or loss of “savant” skills; inability to respond appropriately to sexual assault, pressure, or predation (attributed to compliance training); difficulty judging or expressing one’s own preferences; and reduced independence. (See sources list 1).

Additionally, any treatment should be held to a set of ethical standards, established by a central organization and required by all practitioners. As autism mother and professional writer Ariane Zurcher notes, people don’t usually have reason to question whether established medical treatments (she uses the example of chemotherapy for cancer) are ethical or not. But most autistic communities have serious concerns about the ethics of ABA.

ABA practices are not standardized, are not regulated, and are open to a large amount of parental influence. This is a problem because most parents of autistic children, while in many ways the ultimate experts on their own children, are not experts on autism in certain crucial ways and make certain assumptions from their own neurotypical perspective that may seem like common sense but ultimately not be what their child needs (currently, most ABA folks also make those incorrect assumptions, but I will address that point later).

To draw a parallel, we expect a doctor to listen to a mother’s description of her child’s symptoms, but we hope that the doctor wouldn’t prescribe an inappropriate medication or dangerous procedure simply because the parents want it. And while parents may have to intervene at times in their child’s education, we don’t expect that a father should be allowed to rewrite exams or insist that the teacher add new material to the curriculum! But most ABA programs are largely centered around the parents’ goals for the child, and those goals, which are usually based on expectations for a typically developing child, are not always healthy or safe for an autistic child. There needs to be some oversight here, based (again) on thorough research.

So this is my first concern about ABA therapies: the methods are not safety-tested, and practitioners are not held to established ethical standards. Would you give your child any other “treatment” that didn’t fit those criteria?

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Sources list 1 (very incomplete, in no particular order, and NOT EASY TO READ, i.e. lots of trigger warnings):

– Oliver Sacks, in “The Man Who Mistook his Wife For a Hat,” recounts an instance of profoundly autistic adult brothers who were mathematical savants until undergoing intensive speech therapy.

– “You’ve heard that eye contact is about sharing and social referencing and subtle messages and cues being sent among communicative partners. That’s not what this is at all! This is the sledgehammer. This is the safeword, if you will, the “this stops now it has to it has to it has to make it stop nownownownownow no matter what”.
“Where did I get this idea? Therapy. That’s where… My brain knows that for most people a straight in the eyes stare is not the signal for “something needs to stop right. now.” but it isn’t that easy. One of the deepest conditioned things I have is “eye contact is giving in. If you do that, the bad will stop.” This is irrational and untrue and the world doesn’t work that way. It’s deep, though, as the first and most consistent of the wrestling matches I had with adults as a small child.” – http://timetolisten.blogspot.com/2014/03/conditioned-eye-contact.html

– “Her internal model of friends is “I do what they tell me to do”. No one has to be nice to her, or put up with her, so she has to do what they ask. “No” isn’t an option… People ask, and she does. And when people don’t ask? She doesn’t know what to do. The guessing is impossible. Not knowing what they want is oh so anxiety provoking that she cannot breathe for hyperventilation. They can tell her they don’t want anything, but that’s never true. People always want something and the guessing game is not a thing she can do anymore.
People say they don’t want anything. They always want something. Stand up, sit down, touch nose, good girl. Do my homework for me. Social media crisis this. Can you cover another shift at work? These, she understands. “Just be my friend” doesn’t mean anything.” – http://timetolisten.blogspot.com/2013/09/the-cost-of-indistinguishability-is.html

– “…what looks like progress is happening at the expense of the child’s sense of self, comfort, feelings of safety, ability to love who they are, stress levels, and more. The outward appearance is of improvement, but with classic ABA therapy, that outward improvement is married to a dramatic increase in internal anxiety and suffering.” – https://unstrangemind.wordpress.com/2014/10/07/aba/

– “Children like yours — children like I was — are taught to be compliant. That’s what 90% of autism therapy looks like to me: compliance training. They become hungry for those words of praise, those “good girls,” the M&Ms or stickers or other tokens you use to reward them. They learn quickly that when they do what you want them to do, they are a “good girl” and when they try to do what they want, they are a “bad girl.” I was not allowed to refuse to hug the man who sexually molested me for a decade of my childhood because I might “hurt his feelings.” That’s pretty major, but there were millions of minor experiences along the way, chipping off my understanding of myself as something owned by myself and not something owed to the world around me.” – http://unstrangemind.wordpress.com/2013/01/27/no-you-dont/

– “People worry a lot about their “violent” Autistic children as they get bigger and stronger and harder to control. But far too often, the “violence” is stirred up by years of very frustrating therapy…. There’s only so long that a person can take being pushed into sobbing meltdowns of frustration before they are willing to do whatever it takes to get the torment to stop. It is not only heart-breakingly cruel to treat a child this way, it is grossly irresponsible. Therapy like this creates problems. The best it will produce is a child trained to do things that make no sense in order to avoid distress and get rewards. The worst it will produce is a child that bites, kicks, hits . . . and gets bigger and stronger along with becoming less and less controllable. This therapy is not designed to raise a child who feels safe and comfortable with who they are, who feels safe to express their individuality, who is mentored in growing and developing into the best person they can be, expressing their true nature in ways others can come to connect with. ” – http://unstrangemind.wordpress.com/2014/11/07/what-does-helpful-vs-harmful-therapy-look-like/

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[This post continues in part 2]