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The good, bad, and the ugly: my assessment of our experience with Applied Behavior Analysis (ABA)

17 Jan

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[1] 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.

 
 

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26 responses to “The good, bad, and the ugly: my assessment of our experience with Applied Behavior Analysis (ABA)

  1. kermommy

    January 17, 2013 at 5:05 pm

    As an adult, I have been given ABA therapy in relation, not to autism, but to OCD. I have had good therapists and not so good therapists. Most of what I found useful was what my therapist called “conscious habit forming”. If you do things a certain way, or stop yourself (or are stopped) from a behaviour enough (or redirected) that becomes a habit. Most of my OCD behaviours were negative, either self harming or destructive to my environment. The way people describe redirecting a dangerous stim to a more positive stim seems pretty similar. Negative consequences or punishment doesn’t work very well, when the behaviour was not exactly harm free to start with. Just my two cents worth, I am no expert, and the modified ABA therapy provided to my autistic preschool age son has done him a world of good. I just wish that a combination of therapies (including mentoring) was available more often. Sticking with a single dogmatic approach seems to be a poor method to work with anyone.

     
    • The Caffeinated Aspie

      January 19, 2013 at 7:11 pm

      I agree, I think. So much falls under ABA therapy that it’s hard to explain how I can be against such a thing when many people’s experiences mirror what I described.

       
  2. Rosanna

    January 20, 2013 at 3:20 am

    Thanks for this article. It is balanced and informative IMO.

     
  3. A Quiet Week

    January 31, 2013 at 7:13 pm

    Rose,
    Another phenomenal article. I have reached the same conclusion about ABA here. My greatest terror of late has been the school pushing ABA for my son’s tics (Tourette’s). Our family issues neurological, not behavioral. I respect very much giving a child tools, and using wisdom in selecting them.

     
    • christine little

      March 16, 2014 at 2:21 pm

      Aba Would Encourage Self Monitoring Of The Ticks Just To Help The child Be Aware Of Them And Reduce Them At His/Her will It Can Be Helpful If The Child Is Bothered By It Or Rhe Ticks Have A Negative Impact On Social relationships

       
      • thecaffeinatedautistic

        March 16, 2014 at 2:30 pm

        Er, no? There are other ways of accomplishing that if it’s important to the child.

         
  4. Stsie

    April 11, 2014 at 6:52 pm

    ABA therapists who come to your home and sit around chatting about their lives, or squander time allotted for your child, while they stare at paper in a the huge binder….this is a scam. And the non stop calling to schedule another meeting with the “clinical team” WHHHHAATTT? Didn’t we just meet like 45 times last month? Oh, that’s right, the more the BCBA clincial comes out the higher the billing so why not come out again and again and charge that medical insurance some more while really not a lot of ABA actual therapy going on

     
    • jen

      August 2, 2014 at 12:35 am

      And this happens A LOT! So many bad BCBA’s and bad therapists out there that give ABA a bad name. Beware!

       
  5. Sheogorath

    July 14, 2014 at 5:47 pm

    Now, your version of ABA is one I can support. Anything that teaches Autistic children things they need to know without aversives or ‘quiet hands’ is A-OK in my book. Well done for demonstrating how it should be done!

     
  6. Gina

    July 15, 2014 at 9:58 pm

    As someone currently undergoing ABA training, I appreciate your post. I can underscore that there are a lot of misconceptions about what ABA is or should be. There have, unfortunately, been bad ABA therapists, just as there have been bad family therapists, or bad trauma therapists. But Board certification requirements have been working to change the field for the better in terms of consistency and standards, and research findings are also contributing to the positive changes. A good BCBA avoids aversive punishment and will not waste your time in the way Stsie describes above. We are being taught that even constructive punishment (such as extra homework or time outs) work best when they’re used together with reinforcement that “rewards” an acceptable replacement behavior for the behavior you’re “punishing,” so ABAs are taught to find out what is reinforcing the unwanted behavior and replacing that reinforcement with something that will instead reinforce a “preferred” behavior. It’s not about treating children like animals or robots or deciding arbitrarily which behaviors should be “preferred.” Rather, it’s about using the natural reinforcers in a client’s environment to help them develop the skills they need to interact well with others, or to reach their goals in terms of being able to function well in their social environment.
    I have written about punishment on my Mom Psych blog, and will occasionally be posting about other understandings and misunderstandings of ABA, hoping this will help people recognize what good ABA looks like so they can insist on its delivery. One way of regulating ABA is through Board certification, of course. But another powerful way is through clients understanding and demanding ethical practice.

     
    • thecaffeinatedautistic

      July 15, 2014 at 10:29 pm

      All of this is good but another thing that people need to understand is that there will be many autistic people who are anti any kind of ABA therapy because of their own experiences with horrible abusive treatment by therapists and other professionals, and that needs to be okay. Therapists must not dismiss autistic people because they’re “too angry” or that “ABA has changed”.

      I think that because of insurance coverage, a lot of things that seem like they’re “no brainers” to many people and seems just like common sense teaching and therapy now falls under ABA so it can be covered, even if a decade ago, you might not have called it that.

       
      • Gina

        July 15, 2014 at 10:40 pm

        Agreed! I can’t imagine dismissing anyone for not wanting to come see me. I simply want to be there providing whatever I can to anyone who comes looking. Being dismissed for any reason is demeaning.

         
  7. Kim Oakley

    March 16, 2015 at 4:14 pm

    There is a tremendous need for more BI’s and BCBAs who understand adults with severe autism. Research shows the brain is always capable of learning, no matter what age, so it’s critical these medically necessary services are not denied to severely autistic adults, simply because ABA vendors aren’t able to staff adult cases. Every autistic person should have access to this therapy if their doctor deems it medically necessary. Sadly, there is a shocking shortage of qualified ABA therapists and supervisors who have been trained to work with severely-autistic adults.

     
    • thecaffeinatedautistic

      March 16, 2015 at 4:28 pm

      Or we could eliminate this abusive therapy and replace it with things that actually help autistic adults all across the spectrum, taking into account our differing needs.

       
  8. educationcomboplatter

    July 19, 2015 at 1:21 pm

    I wonder what we could call “mentoring of Autistic children by Autistic adults” for insurance purposes.

     
    • thecaffeinatedautistic

      July 19, 2015 at 3:05 pm

      Hmmm. Well I know that there are social skills training programs out there. It’s not precisely peer mentoring as there is an age difference. Yeah, this is a good question.

       
  9. Amy Scanlon

    July 19, 2015 at 7:02 pm

    I disagree that all people with autism can’t recover. I think some can. We don’t know why some people can recover and others don’t. That’s a bit of a mystery. The “You can’t change it because it’s wired into the brain.” reasoning however is questionable. We know now that the brain can rewire itself.

    Studies on very early intervention particularly ESDM show that it can make the child’s brain less autistic. It doesn’t create “work-around” pathways for the majority of the children. It shores up brain circuits and pathways that tend to be weak in autistic children and makes them stronger.

    It has to be noted that methods like ESDM (or Miller Method or RDI) don’t use adversives and look to developmental models rather than just Skinnerian ones.

    I was told that I could never get rid of my dyspraxia because it was “wired into the brain”. However, I did through Tomatis, Mendability (not just for autism!!), NeuroNet, Interactive Metronome, vision therapy, and a lot of OT. The thing is between all that and an obscure martial art, I managed to create new pathways in my brain

    So yes. Changes in the brain can occur for some people. WE do have a lot to learn about why some people get results and not others.

     
    • thecaffeinatedautistic

      July 19, 2015 at 7:42 pm

      You cannot change how the brain is wired and keep the person the same. You cannot guarantee that you aren’t taking away a person’s entire personality and sense of self while you “rewire” the brain.

      There isn’t such a thing as recovering from Autism because autism isn’t a disease or something that happens to you. It is a huge part of who you are as a person. If you see a person who claims to have recovered their child from Autism they are either having their child suppress autistic behavior or there was something unrelated that was happening to their child.

      “Not autistic” is in no way a desirable result and I find it insulting that you think it is. That you think so little of my neurotype that you think that removing or changing it is a worthy goal.

       
      • Meredith Scanlon

        September 4, 2015 at 4:02 pm

        Everything in that post you wrote amounts to speculation. There is no proof that making a person non-autistic will change their personality. Autism is not a personality type. Also the brain can be changed by music lessons, learning another language, by studying math up the advanced levels, by singing lessons, by sports of martial arts.

        So why are the neurological correlates of autism sacred? I don’t see why they are.

        I’ve had a full recovery myself-one that scientists of the 1980’s told me was impossible-from Multiple Learning Disabilities, Dyspraxia, severe SPD, and social communication issues. By learning about the technologies of neuroplasticity, I managed to rid myself of those disabilities. I am still an ENTP if that’s what you mean by personality, and my sense of self is in some ways stronger.

        These days I have little patience for those who say my prior “neurotype” if you even want to call it that was “different, but OK”. I like people in ways I didn’t before.

         
      • thecaffeinatedautistic

        September 4, 2015 at 4:12 pm

        Good for you? I’m glad you’re a happier person?

        And I don’t think I ever took the position that the brain is stagnant and can’t be changed to some extent. Yes, of course, we all learn and grow. But when you try and take away something that is who a person is at their core, that isn’t okay.

        And no, I’m not talking about a Myers Brigg personality type. I’m talking about what makes me who I am. How do I see and experience the world? And your experience seems to be outside of that, which great for you. But disability isn’t a dirty word and there’s nothing wrong with being autistic. And I don’t in any way dislike people in a way that you should judge my experience as basically “not ok”.

        I’m ok just the way I am and I resent outside forces that think I’m wrong or disgusting for wanting to basically be the best me I can be instead of the best neurotypical me I can be.

        But what do I know? Since you apparently think that you should be able to dictate what other autistic people need and all.

         
  10. Ettina Kitten

    August 11, 2015 at 2:55 pm

    ” The medical industry believes that ABA is the only “proven” autism therapy ”

    Oh, I hate this so much. I have read a number of double-blind studies into other therapies for autism, including some with far fewer ethical concerns (such as RDI, TEACCH, and various other educational techniques). Sure, they haven’t been studied as extensively as ABA, but they have been studied.

    Plus, if a treatment is unstudied, that’s very different from it being ineffective. It just means we don’t know if it’s effective or not.

     
  11. David Fee

    August 18, 2015 at 8:55 pm

    My ASD daughter has no experience with ABA because it’s not available. Nothing about ABA being an unavailable option for many kids. No insurance covering ABA can bought at any price in some states and once you get outside the major cities good luck finding a therapist.

    The 75% of adults who were diagnosed with some form of autism in the first big wave in the 1990s aren’t functioning independently now so the fun is just beginning.

    Realize that ALL forms of education have a measure of behavioral change unless you believe all kids are born to sit quietly in rows and listen to teachers for hours every school day.

     
    • thecaffeinatedautistic

      August 18, 2015 at 9:14 pm

      Better than before the 1990s when anyone who wasn’t verbal was sent to an institution,I’m guessing. And no one lives independently unless you live alone and grow your own food and make your own clothes.

      I’m not saying that changing behavior is wrong on all levels. I’m saying that approaching autism as a behavioral disorder rather than a neurological one where the goal is to change behavior without addressing why the behavior is happening in the first place is wrong. Every time. Even if it looks OK. Even if it doesn’t seem coercive. Even if it seems that they’re listening to your kid.

      It’s been quite awhile since I wrote the original post and I know now I wouldn’t subject my child to such a thing again. Insurance be damned.

      Services need to be available. But therapists and therapy that attempts to make autistic children indistinguishable from their peers by attempting to change behavior are dehumanizing. They do not value autistic people as acceptable.

      This is not the same as having rules and expectations in a classroom.

       
  12. Philip Gowler

    August 19, 2015 at 2:04 pm

    Hi,
    I am reading all these posts with interest.
    I am an NLP therapist and EFT practitioner, and a client has asked me to help their ASD daughter who is 18. I would not have any intention of changing anything except perhaps to help the lady cope with the stresses that she may be finding and attempting to deal with. I certainly would never claim any cure, but perhaps just ways to ease the stress and help make life more tolerable.
    I would really appreciate your opinions on this. Thank you.

     
    • thecaffeinatedautistic

      August 19, 2015 at 2:10 pm

      Ooh, my close friend is an NLP therapist too! He’s helped me personally a lot through that school of thinking so yeah I’m definitely in favor of this. The way I see it is there’s two kinds of therapy – one to help the person and one to help the person be more acceptable to others. ABA tends to fall into the second category. CBT can fall into both. But I’ve found that for the most part, NLP is mostly the first. It’s helped me and I think if the goal is helping the person achieve THEIR goals and help calm anxiety etc, it’s probably mostly good. That isn’t to say that there can’t be bad therapists even within good therapies.

      Also, thank you for referring to her as a lady and not as a kid. Even as a 34 year old, I sometimes get referred to as an autistic kid even though I’m clearly an autistic adult.

       

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