applied behavior analysis

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.

ABA therapy is not like typical parenting

withasmoothroundstone:

realsocialskills:

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.


withasmoothroundstone said:

I was part of a behavior program where I was locked, with only one other child (we were banished from the adolescent unit for being too socially immature or some crap like that, I think the real reason was we’d banded together to take a stand against abuse that was happening in the institution on a daily basis), on the children’s ward of a mental institution,, and not allowed to go outside or walk to the cafeteria or do damn near anything normal unless I earned enough poker chips.  I also had a therapist who systematically struck me harder and harder in the leg until I made eye contact for a certain period of time.  These things are real and they are not like having to do your homework before you can watch TV.  At all.  Even slightly.  

A behavior modification aftermath

Content note: This post is written with parents and professionals in mind. It’s about a common way that rewards-based behavior modification hurts people, and the importance of being aware of that effect in work with people who might be ABA survivors.

I’ve seen a lot of well-meaning people who are trying to fix special education and adult disability services say things like “you have to find out what they’re interested in and incorporate it.”

This can be good advice. It’s also important to realize that this is loaded, and that not all disabled people are going to be willing or able to show you what they’re interested in.

For people with disabilities, “what do you like?” can be a deeply intimate personal question. It can be very dangerous to let people know what you are interested in.

Autistic people (and others with intellectual and developmental disabilities) are often subjected to intense behavior modification. This is often aimed at silencing them, getting them to pretend to be non-autistic, or otherwise change in ways that deny fundamental things about who they are.

You have to take some pretty extreme methods to get someone to comply with that kind of behavior program. One traditional way is to use painful punishment like starvation and electric shock. These days, that’s considered distasteful, and most therapists prefer to use positive methods.

In practice, what that often means is that anything a disabled person expresses interest in will be taken away and used as a reinforcer for a behavior plan. The more they care about something, the more their access to it will be contingent with compliance with what powerful people in their life want.

Even if the thing they care about is something like math. Or books. Or access to fresh air. Or their teddy bear.

People subjected to this kind of thing learn quickly that when they express interest in something, it will probably be taken away.

And beyond that, they learn that when people know what you care about, they will use it to manipulate you into doing awful things to yourself. In many cases, this includes being manipulated into maintaining a grateful affect and praising the therapist.

When people have experienced this type of violation, sharing their interests with anyone is a big risk. Particularly if that person has power over them. Particularly if that person is a member of a professional culture that largely approves of what was done to them. (And if you’re a teacher, therapist, direct support professional, or similar, you have power over them and your professional culture approves of misusing it.)

It’s important to keep in mind that people you work with have every reason to believe that it is dangerous to tell you what they care about. They don’t know what you will do with that information, and have every reason to believe that you will use it against them. (Or that information they give you will get back to people who will do so.) It might take a long time before some people are willing to share their interests. Some people may never trust you. The way you teach and offer support needs to take this into account.

tl;dr It’s important to be aware of the loaded nature of asking disabled people to express interest in things. It’s important to make space to incorporate interests; it’s also important to allow people to keep their interests private.