I’m going to put a gigantic trigger warning on the next few posts. Be aware that I will be talking in some depth about different sorts of autism therapy. I will reference the Judge Rotenberg Center. I will reference ABA and its more abusive forms. I will also discuss my own experiences as an autistic person using a “homeopathic” form of therapy that I’m not sure has a name, but has the same goals as the classic form of ABA.
One final note: ABA has caused severe PTSD in many autistic individuals. Please do not discount this by saying “it worked for us”. If you need to not read this because you might be offended by criticisms of therapy, back out now. If you are triggered by discussions of the aforementioned therapies, please back out now.
What I am basically doing today is taking something I wrote six months ago and revamping the post so it’s fully applicable to today. When I originally wrote this, I hadn’t heard all of the criticisms of ABA. I knew that it was considered, to many in the autism parent community (the one community I had more offline connections with) to be akin to obedience training. I resisted putting my child through that at first, because I didn’t want to treat her in that way, but there was plenty of pressure by doctors who told me that she wouldn’t acquire the coping skills naturally, so I eventually gave in (I’m not entirely sure why I believed this, as my son clearly managed to acquire plenty of skills on his own, and so did my daughter, albeit at a slower rate).
We began ABA therapy when my daughter was five years old, two months into the 2011-2012 school year.
Let’s back up and discuss what ABA even is. According to Wikipedia,
Applied behavior analysis (ABA) is a psychological approach that utilizes modern behavioral learning theory to modify behaviors. Behavior analysts reject the use of hypothetical constructs and focus on the observable relationship of behavior to the environment. By functionally assessing the relationship between a targeted behavior and the environment, the methods of ABA can be used to change that behavior. Research in applied behavior analysis ranges from behavioral intervention methods to basic research which investigates the rules by which humans adapt and maintain behavior.
ABA for us operates on a positive reinforcement model. Essentially, it takes place mostly at our dining room table. The therapist and my daughter sit down and work on a number of previously set programs. The following are some things that they have worked on in the past year and a half:
Learning to spell her name
Learning to say her phone number
Choosing a favorite item
Putting photos about an event in sequence (such as brushing your teeth)
Learning to write with a crayon, a pencil, and a pen
Learning up to 200 sight words
Learning to use the restroom
Asking for a favorite toy
Making a choice when offered several options
The thing is that for every child, these things will be different. Their goals will be different, but the method of teaching is the same. Where the controversy comes in is the techniques used in punishment and the demand for certain behaviors to occur.
Our ABA therapists do NOT prevent stimming. They allow for choices, for breaks (if my daughter says “break, please”), for a few moments of stimming, for play time outside. We had one ABA therapist who tried to withhold food until she did what the therapist wanted. She also tried to stop my daughter from stimming, and I notified the lead therapist (the BCBA) that this wasn’t acceptable and we needed someone else.
Our therapists do punishment from time to time, but this is after my daughter has done something that is very clearly wrong, such as slap or kick the therapist without any indication that she was tired, needed a break, etc. And the punishment? Time out in her favorite chair for a few moments. This isn’t much different frim what I would normally do as a parent to discipline my kids, and when I was teaching kids, this seemed to work well, too, because it gave them time to cool off and be in a safe place as well. Physical aggression outside of a meltdown isn’t acceptable, and that’s the message we feel is best conveyed in this sort of discipline.
Why do we do ABA? Well, part of it is because the school system for autistic kids in the district we were in last year was terrible, so we see ABA for us as supplemental education. Her teacher last year, a special education veteran of 25years, had eight students in the inclusion classroom, 6 of which were autistic. She wasn’t great with them, and didn’t really know how to handle them, I don’t think, which was surprising when I heard from my daughter’s fantastic preschool teacher how fabulous she was.
We also do ABA in order to help her find productive ways to channel or redirect her stimming. Let me explain what I mean by that. If we let her do whatever she wanted, she would tear to shreds every single piece of paper in this house and peel the paint off the walls. But she has learned alternative methods of stimming that still fulfill her needs without destroying her environment. She currently uses sturdy pipe cleaners to stim, and so far, it’s working. She has paper tearing times, too, but we have limits to that, and she must clean up after she’s finished. And this year, the paper tearing has lessened significantly and she now stims by flapping her hands against her hair,which of course makes for slightly messy hair, but overall, it’s not something destructive or anything I’m bothered by in the least.
We do not do ABA in order to make her less autistic. We do ABA to give her the tools to be more successful — with her friends, in school, in life. It doesn’t get rid of negative behaviors, at least not entirely. She isn’t treated as though she’s a robot. But just like any discipline method that parents do, teaching her what is more socially acceptable (like not touching people without their consent, for example) is the goal.
So, that’s been our experience with ABA.
Is it for everyone? No. My son will likely not benefit from ABA. As a child, I wouldn’t have benefited either. And that’s not because my daughter is considered to be more “severe” than me (damn those functioning labels). It’s because my son and daughter’s educational experiences over the past year have been different. My son is also mainstreamed, and my daughter is in a class (this year) that is comprised of entirely autistic children. His needs are different, just as my needs are different. Had I been diagnosed as a child, it’s possible that the first part of my education may have looked like my daughter’s, and once I hit 2nd grade or so (and became more verbal), it would have looked like my son’s (and did, in fact, even without an autism specific diagnosis).
Now, let me say that I know that we are lucky to have therapists like this. There are a lot of therapists that are NOT like this, that use aversive therapy.
They withhold food, they use horrible abusive techniques in order to force a child to comply.
There are ABA therapists that use drilling, that basically treat their clients as robots, and expect something specific in return.
There are ABA therapists who will see themselves as failures if a child remains nonverbal.
There are ABA therapists who will ignore the fact that behavior can be an attempt to communicate.
I’m not going to sit here and say “well, my daughter’s therapists are nothing like that” and think that’s enough. The entire industry’s thought processes need to change. They need to not look at ABA as a way to make autistic people less autistic (and I say people rather than children, not only as a way to be more inclusive, but also because though it’s mostly children, the company we use serves several adults as well). They need to see that aversive therapy is abusive, and punishments, if they exist, should be extremely limited. They need to understand that autistic children are not wrong as they are, and that their role is to help them be more successful by being themselves and learning social rules that they may not be aware of (in addition to the academic goals) and learning how to navigate them.
And regardless of who tells you differently, ABA therapy is not going to “recover” your child from autism. Because autism is something hard-wired into a person’s brain. Besides, recovery is a deplorable concept anyway, because autistic people aren’t sick.
One last thing. I’ve been told that what my daughter’s therapists do isn’t really ABA but is teaching. And to that, I say “great”! The thing is, if you change the name of it to what it actually is, individual tutoring or teaching, it won’t be covered by insurance. The medical industry believes that ABA is the only “proven” autism therapy (though proven for what , I’m not quite certain. It isn’t Lovaas ABA. It’s not. (Take care if you choose to Google Lovaas, by the way. Content is very triggery). I want therapy and treatment to be more inclusive of things that actually help autistic people. Wouldn’t it be great if insurance covered mentoring of autistic children by autistic adults? Ah, one can dream.