Autism

A balanced view on ABA therapy, by an autistic adult.

This is a snippet from my book, All Across the Spectrum, that you can pre-order here.

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“You’re torturing your child with ABA therapy”

Just like society at large, the autism community is not unified in their beliefs about autism. The first time I mentioned ABA (Applied Behavior Analysis) therapy on my blog, it only took a few minutes before someone said to me, “you’re torturing your child with ABA therapy.” This didn’t come as a surprise. Before Charlie was even diagnosed with autism I had searched the web for therapy options, and found that ABA wasn’t liked by everyone. ABA is the number one therapy recommended by medical experts for children on the autism spectrum, however many autistics reject that conclusion. As an autistic adult, I see both sides of the argument but overall I’m in favor of ABA therapy.

ABA therapy now and then

I think a bit of context is necessary here. ABA therapy has evolved tremendously through the years. It’s not the same as it was 60 years ago when Dr. O. Ivar Lovaas designed the first implementations of ABA to help autistic people. He did so based on principles developed by famed psychologist B.F. Skinner, found in his book, published in 1938, The Behavior of Organisms. Back then they used robotic repetition of learning trials held in sterile rooms, and administered punishment to help autistic people learn new and appropriate skills. In early behaviorism, rewards and punishments were used equally. Later, it became clear that rewards worked better than punishment, and punishment, while it might have encouraged learning for some, also produced fear. The methods used to help people with autism today have changed so much since Lovaas’ initial experiments – it’s unfair that they even bear the same name.

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Play-based ABA therapy

Charlie’s ABA therapy is play-based. There are no punishments. Therapists may give a consequence to Charlie by taking a toy away from him if he’s hitting them or screaming, but most parents do that with their children whether they’re autistic or not.

ABA is not “one size fits all” and a good BCBA (Board Certified Behavior Analyst) will work hard to develop the best program for a child. For instance, we wanted Charlie to gain more independence, so our BCBA designed a program to teach him to brush his teeth and another one to teach him to put on his clothes by himself. There is no punishment if he can’t do it, but if he does, he gets whatever reward he’s into at the time.  Some weeks that might be his tablet. Other weeks it might be a teaspoon of Nutella, or a cookie.

Is ABA therapy ableist?

The biggest criticism about ABA therapy is ableism, discrimination in favor of able-bodied people. I don’t agree that ABA therapy is ableist. You can help someone without changing who they are. Charlie isn’t in ABA therapy because we want him to be normal. We want him to be safe, independent, and to learn to communicate, to decrease his, and yes, our frustration. We want to fade away the less functional and dangerous behaviors, like playing with the cats’ litter box, swallowing rocks, and running in the street, to give him a better shot at life. I’m not trying to “fix” Charlie’s autism.

Therapy is here to make his life easier by providing him with ways to communicate, and most importantly keeping him safe. If it takes giving him a cookie to make him stop these dangerous behaviors and learn self-care, as well as communication, then I’m okay with it.

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ABA and horror stories

Everyone working with Charlie is amazing. But, not all BCBAs, therapists, and therapy centers are great. Some of them are poorly run and the methods used are imprecise and borderline abusive. Though this is becoming less common, it may explain the more current ABA horror stories you read on the internet. It’s important that parents choose an ABA center that aligns with their values, a place where therapists and BCBAs will listen to them when they have concerns or don’t feel comfortable with the way a specific skill is being taught.

ABA therapy and stimming

On the flip side, there is a part of me that sees how ABA therapy can sometimes be harmful to autistic people. For instance, some ABA therapists may prevent a child from flapping his hands or rocking. To me, there’s nothing wrong with stimming as long as it doesn’t get in the way of learning. In school, hopefully the teachers will teach the other children what it means, rather than try to get Charlie to stop because the other children don’t understand it.

But I also get it, constant stimming may prevent a child from focusing in class. I don’t think we, autistic people, should have to change to fit in with neurotypical people, but I also want Charlie to have all the opportunity he can possibly have to learn, and maybe that does mean preventing him from stimming in certain situations. The balance, between wanting people to accept the non-harmful behaviors autistics often engage in and wanting Charlie to be accepted and able to focus in real-life situations, is sometimes difficult to find.

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Yes to ABA therapy with certain conditions

ABA therapy has been a huge help for Charlie, and for us. It saddens me how little importance is given to parents of autistic children. I get that sickening feeling in my stomach when people tell me that I’m torturing Charlie with ABA and that Charlie learning to communicate and developing self-care skills isn’t important because what matters is that he’s happy. Charlie is perfectly happy playing in the cat’s litter box. Charlie’s happy banging his head on the wall. Charlie’s happy running in the street in front of cars.

How about Charlie’s safety? How about me as mother? Should I let my child put himself in danger because he’s happy? Charlie isn’t happy either when he can’t communicate and make himself heard. Thanks to his ABA therapists, Charlie can now communicate basic needs with an app on his iPad, called ProloQuo2go.

I was at a loss before ABA therapy came into our life. There’s no way I could have accomplished what Charlie’s therapists did for him, on my own. An autistic child grows up in a world comprised almost completely of neurotypical people, and they have to learn how to function within it. ABA’s ultimate goal is to help autistic people live an independent, safe, and happy life in this world – and I think that’s wonderful. While I understand some of the concerns with ABA therapy, in my opinion, when done well, administered by caring people who are open to criticism and who keep a child’s best interest in mind, ABA is the best therapy for children on the autism spectrum.

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16 Comments

  • Reply
    André
    2019-03-16 at 3:16 AM

    Removing loved things from the child to make them earn it as an reward is abusive and makes the child lose intrinsic motivation and stop sharing what they like

    • Reply
      Andreea
      2019-03-20 at 5:16 PM

      And you’ve walked how many miles in these parents’ shoes? Abusive is when you cause intentional harm, professional therapy for a child who needs to learn certain skills, skills that he does not have the ability to develop on his own unlike many of us, is not abusive. It may be unpleasant, but then again so is time out (for any child).

      • Reply
        Marco
        2019-06-24 at 2:03 PM

        I walked in the child’s shoes. I am now 56 and a university professor. I’s abuse plain and simple.

    • Reply
      Katherine
      2019-05-18 at 4:45 PM

      Removing things is literally what every parent does.

  • Reply
    Nikki
    2019-03-21 at 4:10 AM

    As a pediatric PT, I can tell you what you are doing is not abusive. Good for you and good for Charlie for working toward greater independence and less frustrations! It takes a lot of work and dedication and selflessness on your part to commit to this much therapy. Pat yourself on the back.

  • Reply
    Jessica W
    2019-03-21 at 12:35 PM

    Mama, you are amazing. You are so inspiring. You are a wonderful mom to your boys.

  • Reply
    Sonia
    2019-03-21 at 4:25 PM

    I am an autistic mom with kids on the spectrum. Ans i believe ABA fo e well CAN and DOES help the child. Good job mama

  • Reply
    Jen Phillips
    2019-04-28 at 5:43 AM

    Intensive repetitive forced behaviour all for a bite of cookie is abusive. It may not seem that way to some especially because it is effective at altering behaviour. Yes it can help to change behaviour that is dangerous but there are also other less intensive or repetitive methods that can do this. Research is beginning to emerge that shows how ABA and behaviour therapies damage mental health in the long term. If you can access it here are the references: Gardner, F., (2017). First-Hand Perspectives on Behavioral Interventions for Autistic People and People with other Developmental Disabilities.
    Milton, D., & Moon, L. (2012a). The normalisation agenda and the psycho-emotional disablement of autistic people. Autonomy, the Critical Journal of Interdisciplinary Autism Studies, 1(1).
    Kupferstein, H. (2018). Evidence of increased PTSD symptoms in autistics exposed to applied behavior analysis. Advances in Autism, 4(1), 19–29.

    • Reply
      David N. Andrews M. Ed., C. P. S. E.
      2019-06-26 at 5:14 PM

      Kupferstein, H. (2018). Evidence of increased PTSD symptoms in autistics exposed to applied behavior analysis. Advances in Autism, 4(1), 19–29.

      That paper is an absolute embarrassment to any autistic adult who wants to get taken seriously in science. I say that as an autistic adult who wants to get taken seriously in science. I also say it as an autistic psychologist who taught research methods and data analysis at postgraduate level for two years at his alma mater.

      There was NO clinical verification of any diagnosis of either autism or PTSD. There was no definition given of what ABA actually is, and nor was there a description of what was being done in any intervention being given to autistic people taking part in the ‘study’ – this makes it impossible to differentiate between ABA, per the definition given by the BACB, and anything being ffered under the name of ABA but not fitting the definition. I don’t remember reading about a control group of any sort.

      Had she been my student, I would have failed that paper. For a master’s graduate, I expect master’s level performance. That was not a master’s level paper.

      • Reply
        Keisha B
        2019-07-18 at 9:06 PM

        This is because she’s not a scientist. She has a music degree and a “Master of Arts in Transformative Leadership”.

        She claims to be a doctoral student but both schools I’ve seen listed for her are unaccredited diploma mills which I assume she chose because they would also her to claim “doctoral research” for poorly-conducted studies supporting her own biases and agenda without the right or oversight of a real college.

  • Reply
    Jen Phillips
    2019-04-28 at 5:45 AM

    Also I forgot to mention that there is a strong evidence-base in the research related to mental health and intrinsic/extrinsic values that can be used to argue against reward based systems too. In a nutshell: teaching children to do something for a reward teaches them that what is important is doing things for the rewards (extrinsic gains). The research surrounding mental health has shown that when a person’s choices in life are weighted more towards doing things to gain extrinsic rewards their mental health suffers. These people are more likely to undertake tasks that they often hate just so that they can gain the reward and this pattern continues throughout their life i.e. they might end up chasing high flying careers just for the large wage that comes with that so they can buy the big house, nice car etc., rather than the fact that they love the job, therefore they make themselves miserable but they don’t realise that the things they are chasing won’t make them happy. This is because the reward satisfies briefly but it is fleeting happiness and it is not self full-filling, Some people might also develop problems with addiction too, because they feel they have to constantly reward themselves. They might become addicted to shopping, smoking, alcohol, drugs, food etc. Reward systems for young impressionable minds, whether autistic or not, are not good for mental health in the long run.

  • Reply
    connie edwards
    2019-06-27 at 12:37 PM

    when i was a kid my mum wanted me to learn to love books; she would put aside half an hour of an evening, turn the lights down low and make reading “a special time”. we would cuddle and enjoy reading together. my brother and i have been avid readers all our lives. THIS IS ABA. people forget that the principles of aba are 99% common sense; they are the things that we do as parents/carers all day, every day. ABA principles are utilised in every intervention that works. let’s not vilify a science because of a whole lot of pre-conceived ideals. conversely, let’s accept that there have been lots of wrongs that have been performed in the name of aba but that we need to spend more time talking with open minds about what we want to achieve and how we are going to do that…

  • Reply
    Suzie
    2019-06-29 at 12:01 PM

    Thank you for writing this 🙂 all the best. I hope many other parents find it helpful, positive and objective.

  • Reply
    Becky
    2019-07-09 at 7:12 PM

    ABA therapy saved my son. We started at 18 months and continued until he was 3 and he is currently 9 and THRIVING. Happy as a clam, able to function beautifully in society, has friends…is an all around different kid. If that’s abuse then call me the biggest abuser on earth because I’m so thrilled with all it’s done for him.

  • Reply
    Joanne P
    2019-07-19 at 3:15 PM

    I live in the UK and we don’t really have ABA here. Our health service exists to support people not make money for “therapists” who insist the child NEEDS 40 hours a week of their expensive services!

    My son is currently learning his life skills such as getting himself dressed. I lay the clothes out the right way round and he puts them on. Once he is dressed he can either carry on playing or we go out, whatever we’ve planned for the day. There is absolutely no need for an extrinsic reward like a cookie (aside from the issues around sugar defeating the teeth cleaning lessons LOL). We need to promote intrinsic motivation to help him later in life.
    Same with learning to use his AAC – he also uses ProLoQuo2Go but the reward is getting us to understand his wants and needs, not getting a cookie for doing so.

    All the other things the author describes can be learned without ABA. Thousands of British children have done this for many years, I chose the two examples as they resonate with the life stage we are currently at.

    My final question is always the same – if ABA is so different now, then why use a name which actually affects autistic adults with PTSD so badly that the very acronym is banned in many support groups?

  • Reply
    Angelica
    2019-07-25 at 1:18 AM

    I would strongly recommend that any parent considering ABA for their child makes sure to ask a very important set of questions of the BCBAs:

    – A UN Special Rapporteur on Torture says what is done at the Judge Rotenberg Center is, in fact, torture. The BACB has not stripped the credentials of the BCBAs involved in using shock devices as aversives, and will not, as it is not against BACB ethical guidelines. Are the ethical guidelines at your facility different from the BACB’s? If so, in what ways? (If no, run. Run like hell. Ethical guidelines that allow torture are insufficient to protect your child.)
    – Have you lobbied the BACB to get more stringent ethical guidelines so that children are protected from harmful practices like those currently in use at the Judge Rotenberg Center? If not, will you do so? Will you encourage fellow BCBAs to do so?
    – Have you boycotted ABAI conferences that include the Judge Rotenberg Center as a speaker, and have you lobbied for the Judge Rotenberg Center to no longer be included as a speaker? If not, will you do so in the future?
    – BACB ethical guidelines do not require that my child’s needs are put above my own. We are both defined as the “client”, and no prioritization is given to the needs of the one receiving services over the needs of any other person defined as a client in that document. What guarantees do I have that you will ALWAYS put my child’s needs above my own, seeing as the ethical guidelines of your profession don’t require you to do this?
    – Do you agree with the use of physical punishments and physical aversives, which are permitted under BACB ethical guidelines? (If yes, run. For your child’s safety, run.) If no, have you lobbied the BACB to remove their inclusion among things considered ethical by your profession? If you have not in the past, will you begin now?

    No facility (or person) that condones or excuses torture like that at the Judge Rotenberg Center is safe for your child to be near. No ethical guidelines that permit torture are stringent enough to keep your child safe. A person who isn’t willing to speak out against a member of their profession committing torture cannot be relied upon to tell you if it’s happening to your child. If you’re going to consider ABA, please, PLEASE ask these questions. Keep your child safe.

    Further reading/viewing for context:
    BACB Ethical Guidelines for BCBAs: https://www.bacb.com/wp-content/uploads/BACB-Compliance-Code-english_190318.pdf
    Judge Rotenberg Center Torture Compilation by former JRC Staff (video): https://www.youtube.com/watch?v=Ko-ip3MImik [It’s long and hard to watch at times. Watch the whole thing. It’s from 2012, but JRC is still using GEDs today.]
    How the ABA Industry Endorses the Use of Electric Shock Devices on Autistics: http://autisticbride.co.uk/2019/05/24/how-the-aba-industry-supports-the-use-of-electric-shock-devices-on-autistics/

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