Tackling That Troublesome Issue of ABA and Ethics

One of the best arguments against ABA is Michelle Dawson’s article, The Misbehaviour of Behaviourists: Ethical Challenges to the Autism-ABA industry.  If you google Applied Behavioral Analysis you will see glowing reports of its efficacy for more than 30 pages.  I actually stopped at the 30th page only because I didn’t have time to continue.  The first book I read on the subject of Autism was Catherine Maurice’s Let Me Hear Your Voice which details how ABA saved two of her children’s lives from Autism.  (I use this language as it is the language employed by the author.)  Catherine Maurice also likens Autism to cancer and ABA as the necessary chemotherapy.  The whole acceptance model obviously is not employed when thinking in these terms, how could it be?  And perhaps this is the single greatest problem when discussing ABA.   Ethics is not a word one associates with chemotherapy.  Why would it be?  The person considering chemotherapy is doing so because to not do so is to face the very real possibility of death.  When the language around autism becomes synonymous with cancer, one is saying to be Autistic is to have a death sentence.  And while that may seem like hyperbole to many parents and Autistics, it is not so far from the truth when we were informed of our daughter’s autism.

When Emma, then two years old, was given her diagnosis we were told, if we employed 40 hours of ABA a week she would undoubtedly be mainstreamed by Kindergarten.  This was what we were told.  This is what we hoped for.  This is what we chose to believe.  We were also told that a bio-medical approach when coupled with ABA was ideal and so we did that too.  We fought and received 40 hours of ABA a week, took Emma to a homeopath, who through more than a dozen tinctures, did a homeopathic version of chelation (i.e. removed heavy metals from her system).  I also took Emma to a cranial sacral doctor as well as had her on a gluten-free casein free diet.  Despite all of this, when she did not show the sort of monumental leaps promised, the ABA therapists said it was because we were at fault.  Never once did any of the therapists, supervisor or agency waver in their firm belief that ABA was a solid, “scientifically” backed methodology.  It was spoken of as fact.  We were the only variable.  We then did what they advised, we put Emma in an ABA based preschool, continued our own ABA training so we could continue doing it at home, hired an ABA trained therapist to help us implement ABA in the evenings and weekends and again were reassured that she would be mainstreamed by the time she was in Kindergarten.   We didn’t have any alternatives as far as preschools went, so I ignored my gut, my maternal instincts, warning me that this was NOT a method I would ever allow used on my neurotypical son and yet, was allowing to have implemented for my autistic daughter.

After a year, not only had Emma not progressed as the school had hoped, but she was actually regressing and was, what the principal informed us, a “red flag”.  The teacher, obviously aggravated with Emma’s lack of progress even suggested that this was Emma’s fault, that she was “refusing” to comply and expressed her irritation with us.  Emma, at the time was just FOUR years old.  Looking back on those first few years is surreal.  A four year old was being blamed and words like “manipulative” and “misbehaving” were used.  I’m going to interrupt this story to acknowledge, this is one story.  One family’s experience and is an anecdotal tale.  In no way do I believe for a moment that because ABA did not produce the results so many believed it would that our story is somehow scientific fact.  What I will say though is that ABA is, in my opinion, a flawed, at best, methodology and one that we do not, would not ever consider using with our NT son.  Therefore an important question must be asked – Why is that?

Why do we not use ABA for the neurotypical population?  This is where the ethical question must be considered.  This is where the “science” behind the use of ABA begins to fray.  If we really believe Autistic people (and children) deserve the same respect, are truly considered equal as those in the neurotypical population, ABA presents some real problems.   ABA can only really work if we view autism as a deficit and something that must be removed.  Autism is a complex neurological difference that cannot be removed.  I do not believe for a moment that there will ever be a “cure” for Autism.  It was explained to me by a neurologist that Autism is a web of neural pathways branching off and fusing producing new neural pathways, so random, so complex making it impossible to single out any one pathway allowing for a simple removal to produce a non autistic person.

I don’t believe anyone would argue against helping an Autistic person cope with the challenges they face, but the larger question is how do we do that?  Restraining someone who needs to concentrate by flapping is not the answer.  Insisting children sit quietly so they can “attend” and be “table ready” when flapping or twirling a piece of string actually helps them listen and concentrate does not make any logical sense.  Insisting that the non autistic way of communicating is the ONLY way to communicate is limiting and unhelpful to those who cannot express themselves by speaking.  Viewing Autism as a list of deficits that can be corrected through a series of discrete trials will not make an autistic person any less autistic.  Teaching Autistic people how to ‘pass’ so they can blend in better with non autistics is similar to the belief that a closeted gay person will live a happier and more fulfilled life by being closeted than someone who is “out”.

I don’t agree with the basic tenets of ABA because it is a methodology based in looking at those it treats as deficient and inferior.  This is not a model I believe will help Autistics or any of us in the long run.  We, who are not autistic are in a position of power, we are the majority, we are the ones making the rules.  That does not mean the rules we make are correct or even right.  We must be willing to examine what our objective is in using ABA.  Is the objective to make someone blend in better and if so we must ask ourselves why?  Before ABA is considered, ask yourself, is this a treatment you would employ for your neurotypical child?  What message are we sending our Autistic children?  What will this message do to their self-image?  What message will be internalized, a message they will carry with them well into adulthood?  Will this message serve them, make them feel good about themselves, help them lead happy, fulfilled lives.  After all isn’t that what ALL parents want for our children?

*I urge any who are reading this to read what autistic people are saying about ABA.  Ido Kedar, a non speaking Autistic teenager has written a book, Ido in Autismland where he criticizes ABA and describes why.  Any of you who are ABA therapists, it is incumbent upon you to read his book.  He is one of a number of Autistic people who are speaking out about ABA.

Other posts dealing with ABA:

Non-Speaking With A Lot to Say
Trauma & Autism

Emma as mermaid!

182 responses to “Tackling That Troublesome Issue of ABA and Ethics

  1. Thank you for writing this article. My son just got diagnosed last May 2015 and with the diagnosis came 25 hours of ABA therapy and 5 days in a special needs preschool. He would have ABA from 8-11 then school from 11-4 and then ABA in the afternoon from 4-7. I didn’t know anyone with an autistic child so I thought this was normal. I watched my son go through this rigorous schedule and even after a week I knew it wasn’t right. Everyone kept telling me he needs it, but I just didn’t see how a three year old needed to be trained like that unable to spend time with us as a family. We stopped ABA. He became withdrawn. He’s already non verbal and he communicates with me through grunts and squeals and jargon that only I can understand. When he had ABA he would just look at me blankly like he didn’t know how to communicate cause the therapists wouldn’t let him do his squeals to ask for things. Speech therapy has helped him more than ABA. I love my son as he is. If he never mainstreams with neurotypical kids then so be it. I can’t watch him get trained like all his stims are something that’s a problem when they calm him from his meltdowns…

    • My 3 y/o son is scheduled to start ABA next week 4 days a week from 12-2:30 after having school 8:30-11:30. I have a bad feeling about it, but I keep hearing people say how great it is. And you said the exact reason why I don’t want to do it. It’s to much. And I love my son the way he is, I don’t want him “normal”!

  2. Thank you so much for this article. I am in ABA , I have been for years, and I do believe it can work, but I don’t believe it is about “fixing” – there is nothing wrong with someone with autism or any other sort of of different skills. I think the job of a good ABA company and therapist is to help a person accomplish what they want to accomplish. Now, I work with adults and so that is my primary goal. I will say that ABA can mean different things different places, so parents should definitely look into a company before starting their kids there. I also don’t think 40 hours a week is the answer. It is the quality, not the quantity that matters. A good ABA therapist and company should focus on the goals of the individual and the family, and not be about reaching an idea of “normality”.

  3. I know of a little boy who when he was ten was expelled from school his mother was told that he would have to go to residential school three hours away her only hope was aba home therapy. At the time he spent all day naked and self harming over a thousand times a day three years later he is a changed child. Aba is not for every one but if you get the chance you can see this little boys journey on Face book page Skybound therapies

  4. I am a BCBA and am sad to read your post. Many of things you are saying about your experience with ABA are NOT typical of ABA and do not sound like good behavior analytic practice. I am sorry for the added difficulty you faced and wish you and your family all the best!

  5. My daughter has been doing ABA therapy for 2 1/2 years and I have never seen any of the therapists where she goes do, or attempt any of the things you said, they have all been extremely loving and wonderful with my daughter and neurotypical son. Those therapists your daughter were involved with sound atrocious and I am terribly sorry for what happened. What they did does not sound typical of ABA.
    We only go 3 days a week for 2 hours at a time and have seen phenomenal progress. I agree with an earlier comment that quality is more important than quantity. That is why it is so important to look in to the values and goals of anyone working with your child. They should want to work on the goals of the individual and family.
    I am friends with other mothers of Autistic children and they didn’t see the same type of results in their children from ABA that I have in my daughter. However, they are helping their children with other methods. Everyone has a different road to travel. What works for one child, won’t work for another.

  6. I am the owner/ director of a govt funded, large therapist and child client based organisation and I am saddened to hear you have obviously had a very bad experience. What you have raised, is far from typical of what it is we do. I hope you might consider as well as others who read this article, that one bad experience meted out in this way can undo the amazing work that this methodology offers to millions of people around the globe. Please look at the science and yes, be pro-active in looking for the professionals that have the skills and abilities to provide the best services and outcomes for your child, but please do not take one criticism or one bad experience and apply it to the entire treatment process. Do your research and your child will reap the rewards.

  7. Hi there all, here every person is sharing these kinds of experience, so it’s nice to read this website,
    and I used to visit this blog everyday.

  8. Gives me the creeps the whole idea of it. If you subjected ABA to a NT child for some intrinsic issue, such as Tourettes or a tic and forcing the kid to STOP doing the behaviours that annoy people you would be hearing about it on the news. It is allowed on autistic kids because they are viewed as problems in society. They are made to stop acting like they are disabled by getting them to stop flapping, have quiet hands, or whatever the hell they are doing or saying/odd noises BECAUSE everybody else is uncomfortable with THEM. The ludicriuos thing about all this is that the autistic child/person couldnt care less about their behaviour. Other than teaching them how to bathe, dress and feed themselves, badic schooling and non aggressive behaviours at home and in public leave these poor kids alone and tolerate them the way they are.

  9. Pingback: ABA, Abusive Bullying of Autistics | autisticzebra

  10. I think it depends on the child. I was worried about Aba, but my son after 4 months has gained many new skills ( like simply drinking from a cup, or drinking water ). I sit in for every second of the therapy. I actively participate and when I think he’s spent, we go and do something fun like blow bubbles or burst water balloons. Taking a naturalistic approach is important and backing off is important too. I was skeptical but now I love Aba! It’s not perfect but none of the other therapies are perfect ( it dumbs the child down a bit and programs them to answer or respond even when they might not want to). But the small loss of some of his autonomy is worth the new skills he us gained. That’s what you have to weigh as a parent the trade off and so for for me it’s been great but I’m waiting for the moment when it no longer is helpful.. That’s when I too will pull the plug. Our Aba team simply followed my son around and tried to create opportunities to engage him. He love his team and I don’t think I would allow it to continue if he didn’t. You know your kid and if they aren’t happy it’s not worth it! I stand by you decision because as a parent that’s all we want is for our children to be happy.
    Lots of love,

  11. I am a homecare aide. I work with an autistic boy that get ABA. I am not a fan. It’s basically a reward and punishment program. I see him getting bribed and forced to do things that he doesn’t want to do such as finishing his lunch. I would not use ABA for my own kids if they were on spectrum.

  12. Emma is beautiful, you are beautiful! Thank you so so much for this article. I have my Natalia and I have been so against ABA therapy! I was against all of it! I wanted to be a mom of HFA child who struggles but not alone! She has me! I only fight the school system to give her support that she as autistic child in USA deserves. I don’t need charity or anything. Just school academic support. Natalia is 12 and only now in middle school started to feel ok. Just because I encouraged her to be just the way she is!!! I have non autistic child younger than her and I do little different with both. I believe my daughter with autism be better off without ABA therapy.

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