ABA therapy is not like typical parenting

Content note: This post is about the difference between intense behavior therapy and more typical forms of rewards and punishments used with typically developing children. It contains graphic examples of behavior programs, and is highly likely to be triggering to ABA survivors.

Anonymous said to realsocialskills:

I just read your thing about people with disabilities and their interests. Don’t people do the same thing to typical children? Restrict access to things enjoyed until act ABC is completed? For example, growing up, I was only allowed to watch tv for 1 hour a day IF I finished all of my homework and schoolwork related things first.

realsocialskills said:

It’s not the same (although it has similar elements and I’m not a huge fan of the extent to which behavior modification techniques are used with typically developing children either.)

Here’s the difference: Most children actually should do their homework, and most children have interests other than television. Typically developing children are allowed to be interested in things, and supported in pursuing interests without them becoming behavior modification tools.

(Another difference: intense behavior modification is used on adults with developmental disabilities in a way that would be considered a human rights violation if done to typically developing adults.)

Using behavior modification tools for one or two things in a child’s life isn’t the same as doing it with everything in someone’s life. Intense behavior therapy is a violation on a level that it’s hard to describe.

Intense behavior therapy of the type I’m talking about typically involves:

  • Being surrounded by people who think that you’re broken, that all of your natural behavior is unacceptable, and that you need to be made to look normal in order to have any hope of a decent future
  • Having completely harmless things you do pathologized and modified (eg: having hand flapping or discussing your interests described as “a barrier to inclusion”)
  • Having those things conflated with things you do that actually *are* a problem. (eg: calling both head banging and hand flapping “sensory seeking behavior” and using the same reinforcers to eliminate both) 
  • Being forced to stop doing things that are very important to you, by people who think that they are pointless and disgusting or “nonfunctional” (eg: using quotes from TV shows to communicate)
  • Being forced to do things that are completely arbitrary, over and over (eg: touching your nose or putting a blue ball in a red box)
  • Being forced to do things that are harmful to you, over and over (eg: maintaining eye contact even though it hurts and interferes with your ability to process information)
  • Having everything you care about being taken away and used to get compliance with your behavior program (eg: not being permitted to keep any of your toys in your room)

(Behavior therapy often also involves legitimate goals. That doesn’t make the methods acceptable, nor does it make the routine inclusion of illegitimate goals irrelevant.)

Here’s an explicit instruction from a behavior expert on how to figure out which reinforcers to use for autistic children:

Don’t assume that you know what a child with ASD likes. It is important to ask a child, observe a child or perform a preference assessment. When asking a child about reinforcers, remember that multiple reinforcement inventories can be found on the Internet.

You can also simply sit down with a child and ask them questions like “What do you like to do after school?” or “What’s your favorite food?"or "What toys do you like to play with?”

When observing a child, set up a controlled environment to include three distinct areas: food, toys, and sensory. Then allow the child somewhat free access to this environment.

Watch and record the area that the child goes to first. Record the specific items from this area that the child chooses. This item should be considered highly reinforcing to the child.

Continue this process until you have identified three to five items. Remember that simply looking at an item does not make it reinforcing, but actually playing with it or eating it would.

Notice how it doesn’t say anything about ethics, or about what it is and isn’t ok to restrict access to. This is about identifying what a child likes most, so that it can be taken away and used to get them to comply with a therapy program. (Here’s an example of a reinforcement inventory. Notice that some examples of possible reinforcers are: numbers, letters, and being read to). 

People who are subjected to this kind of thing learn that it’s not safe to share interests, because they will be used against them. That’s why, if someone has a developmental disability, asking about interests is often an intimate personal question.

This isn’t like being required to do your homework before you’re allowed to watch TV.

It’s more like:

  • Not being allowed to go to the weekly meeting of the science club unless you’ve refrained from complaining about the difficulty of your English homework for the past week

Or, even further:

  • Not being allowed to join after school clubs because you’re required to have daily after school sessions of behavior therapy during that time
  • In those sessions, you’re required to practice making eye contact
  • And also required to practice talking about socially expected topics of conversation for people of your age and gender, so that you will fit in and make friends
  • You’re not allowed to talk about science or anything else you’re actually interested in
  • You earn tokens for complying with the therapy
  • If you earn enough tokens, you can occasionally cash them in for a science book
  • That’s the only way you ever get access to science books

Or even further:

Being a 15 year old interested in writing and:

  • Being in self-contained special ed on the grounds that you’re autistic, your speech is atypical, and you were physically aggressive when you were eleven 
  • Having “readiness for inclusion” as a justification for your behavior plan
  • Having general education English class being used as a reinforcer for your behavior plan
  • Not being allowed to go to English class in the afternoon unless you’ve ~met your behavior targets~ in the morning
  • Not being allowed to write in the afternoon if you haven’t “earned” the “privilege” of going to class
  • eg: if you ask questions too often in the morning, you’re “talking out of turn” and not allowed to go to class or write in the afternoon
  • or if you move too much, you’re “having behaviors that interfere with inclusion”, and not allowed to go to class or write
  • or if you mention writing during your social skills lesson, you’re “perseverating” and not allowed to go to class or write

Or like: being four years old and not being allowed to have your teddy bear at bedtime unless you’ve earned 50 tokens and not lost them, and:

  • The only way to earn tokens is by playing in socially expected ways that are extremely dull to you, like:
  • Making pretend food in the play kitchen and offering it to adults with a smile, even though you have zero interest in doing so
  • You gain tokens for complying with adult instructions to hug them, touch your nose, or say arbitrary words within three seconds; you lose two for refusing or not doing so fast enough
  • You lose tokens for flapping your hands or lining up toys
  • You lose tokens for talking about your teddy bear or asking for it when you haven’t “earned” it
  • You lose tokens for looking upset or bored

Or, things like being two, and loving books, and:

  • Only having access to books during therapy sessions; never being allowed unscripted access to books
  • Adults read to you only when you’re complying with therapy instructions
  • They only read when you’ve pointed to a picture of a book to request it
  • You’re required to sit in a specific position during reading sessions. If you move out of it; the adult stops reading
  • If you rock back and forth; they stop reading
  • If you stop looking at the page; they stop reading
  • If you look at your hand; they stop reading
  • Adults interrupt the story to tell you to do arbitrary things like touch a picture or repeat a particular word. If you don’t; they close the book and stop reading.

Here are a few posts that show examples of the kind of thing I’m talking about:

tl;dr Intense behavior therapy has some things in common with methods that are used with typically developing kids, but it’s not actually the same. Intense behavior therapy involves violation and a degree of control that is not considered legitimate with typically developing children.

It's ok for people with disabilities to want attention

A lot of things that people with disabilities do get pathologized as “attention seeking behaviors”, whether or not they have anything to do with wanting attention.

That’s not the only problem with the whole concept of “attention seeking behaviors”.

Another problem is that there’s actually absolutely nothing wrong with wanting attention. In fact, all communication involves seeking attention in some way.

Taken literally, here are behaviors that involve seeking attention:

  • Saying hello
  • Asking if someone is ok
  • Writing a blog post
  • Performing on stage
  • Teaching a class
  • Waving to someone
  • Asking a question
  • Reporting a problem
  • Commenting on something
  • Posting on Twitter

“Attention seeking” isn’t a neutral technical term. It’s professional jargon for saying “this person becomes unworthy of attention when they do this, and so we’re going to aggressively ignore them.”

That’s a value judgement, generally a very harsh value judgement. There’s nothing scientific, technical, or medical about that kind of judgement. And it’s a very cruel thing to do to people who don’t deserve it.

tl;dr Calling something an “attention seeking behavior” isn’t a technical term; it’s a (generally unwarranted) insult.

If you want me to believe you're a good behaviorist

Content note: this post is about ABA (applied behavior analysis), and what it would take for a behaviorist to be considered ethical. Proceed with caution.

When self advocates talk about the problems with ABA, a lot of behavior therapists say things along the lines of “that’s not real ABA; ABA is a science, not a particular method.” Or “that’s just some bad practitioners.” They will say this even when self-advocates criticize things that are routine practices in ABA, and even when they are in fact explicitly advocated in the BACB standard of practice for behavior therapy.

If you want people to believe that you’re not the kind of behaviorist they’re criticizing, acknowledge that most behaviorists are, and that they have completely legitimate reasons not to trust you.

For instance:

“What kind of staff are you?” she continued. I was unsure of what she meant so I asked her to clarify. “Well, do you work in a group home or an office?” I told her that I worked in an office and I was a behavior therapist. I must admit that I said the behavior therapist part with some pride. She stared at me, “What do you do?” she asked in a very measured tone. “I’m a behavior therapist. I work with people who have problems.”

That was it. She was angry. “You shouldn’t be here. You lock people in little rooms. You shouldn’t be here.” Both her anger and her words took me aback and before I could answer my friend spoke up. “Maybe it’s good that he is here then. He may learn something from the movie that will help him understand people better.” She agreed and the two of them discussed my betterment. When others started to arrive she left us to help people find seats.

Sitting through that was bad enough but sitting next to someone who was bound to feel smug for the next few hours was nearly intolerable. At the reception afterwards she approached us again and asked if I had liked the movie and I assured her I had. She wanted to know if I had learned anything and I told her that I did. I learned that it was good to be challenged about what I do from the people I do it to. Even though I had not locked anyone in a little room for some time, I knew that I had used time out and other procedures like it. I knew that I would remember her for a long time, but especially whenever I wrote a program to manage someone’s behavior.“

— Dave Hingsburger, “i to I: Self Concept and People With Developmental Disabilities”
Note here, that he didn’t respond with anger and say "I don’t lock people into little rooms! I’m not that kind of behaviorist! How dare you judge me like that?!”. He listened to what she said, acknowledged that she had good reasons to say it, and realized that this should give him serious pause for how he treated people in behavior therapy. He didn’t assume that no longer doing one particular abusive practice meant that he was immune to that kind of criticism.
If you are a behavior therapist, especially if you are a BCBA, a lot of people have very good reasons not to trust you. Even if you’ve never personally locked someone in a little room, your colleagues still do and still retain good professional standing. Even if you’ve never written a program to extinguish stimming, your colleagues still routinely do so, and your professional association’s guidelines for practice in autism therapy explicitly encourage this.
You can’t rely on the positive reputation of behaviorism for legitimacy, and at the same time expect to be immune from the negative reputation of behaviorism that comes from the horrific abuses that have been and still are committed by behaviorists. 
If you choose to be a behaviorist, particularly if you chose to be a BACB cerified BCBA, and particularly if you call what you are doing ABA therapy - you are not entitled to any benefit of the doubt. You’ve got a hell of a lot of evil weighing you down.
You are the product of a discipline that locks people in little rooms as punishment, and did so even more frequently in the past. It’s not against the current ethical standards of practice.
Quiet hands is still practiced. So is shocking people. The current standard of practice for autism therapy still calls for 25-40 hours a week, even for young children. It still calls for treating stimming as a target behavior for elimination. 
Don’t expect us to be deeply impressed that you don’t personally torture anyone. The fact that it needs to be said, means that you have to work hard at proving yourself if you want to be trusted. And don’t expect people to believe you right away either, because a lot of people who say they don’t torture people really just mean that they do it in subtle ways, or that they do it only as a last resort. Self advocates have a lot of really good reasons to doubt that you’re an exception. If you want to be seen as one, acknowledge that you’re unusual in that regard and that they have every reason to assume you’re not trustworthy.
If you want to distance yourself from abusive behaviorism, do it all the way. Don’t wait for self advocates to associate you with abusive behaviorism. Distance yourself from abusive behaviorism even when doing so harms your professional reputation (and it will, because abuse is the norm). Acknowledge that self advocates and others have every reason not to trust you. Horrible things have been done by behaviorists for a long time. Horrible things are still being done.
Maybe you don’t do any of that. Maybe you don’t torture anyone or teach them antiskills. Maybe you don’t insist on a number of hours that prevents someone from having any down time, non-behaviorist education, or social relationships.
Maybe your teacher doesn’t do those things either. But someone who taught their teacher, did. And someone you and your teacher regard as a collegue in good standing, still does. 
The fact that you personally don’t torture anyone, even if true, does not undo the tremendous evil in behaviorist culture, theory, and practice. It does not absolve you of the responsibility of dealing with it, either.
Don’t expect the benefit of the doubt from those of us who are from communities that have been harmed (and are still being harmed) by behaviorism. You don’t deserve that as a default, no matter how good you are personally. Any respect you get for your professional work is something you have to earn personally, and you’re starting with a debt.