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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