The mom of an autistic son wrestles with the debate about ABA therapy for kids on the spectrum, and asks an autistic adult for input.
As a parent to a wonderful, unique, non-speaking child with autism, I fully support neurodiversity, presuming competence, and methods like RPM to help kids on the spectrum communicate. With all that in mind, I thought it'd be easy for me to interrogate their antithesis, Applied Behavioral Analysis (ABA) therapy. But it's proven tough to sort through my conflicting emotions.
On the one hand, ABA's the first therapy my son got post-diagnosis. It's the only one our insurance fully covered, and it's the one—with its insistence on taking data, making plans, and charting progress— that made me feel like there was some order to our days and to my son's progress. It's the one that introduced us to many compassionate, kind therapists who listened to my concerns and modified programming to best serve my son. Many of those ABA therapists became my friends, and although we're no longer doing ABA, I still call some of them occasionally for advice on addressing some of my son's more challenging behaviors.
On the other hand, the autistic community has spoken out loudly and clearly about why it considers ABA ethically wrong, ineffective, and not the best option for kids on the spectrum. New research shows ABA's repetitive teaching methods don't actually improve learning in people on the spectrum. I've read harrowing accounts of the early days of ABA—when researchers did monstrous things like conditioning children to hug using electroshock—and more recent ones like Julia Bascom's haunting blog post "Quiet Hands" that show many practitioners haven't evolved much beyond those early methods. Many former ABA therapists have contributed to the conversation and raised important questions about control and consent.
All of this has left me wondering: Is ABA really the best choice for kids for with autism? What could be a better option?
In the end, to answer those questions, I decided to follow my new model for approaching all things autism: Ask an actual autistic person. I reached out to Julia Bascom, deputy director of the Autism Self-Advocacy Network (ASAN) and author of "Quiet Hands." Here's what she had to say about ABA:
What's your main objection to ABA?
JB: ASAN's objection is fundamentally an ethical one. The stated end goal of ABA is an autistic child who is "indistinguishable from their peers"—an autistic child who can pass as neurotypical. We don't think that's an acceptable goal. The end goal of all services, supports, interventions, and therapies an autistic child receives should be to support them in growing up into an autistic adult who is happy, healthy, and living a self-determined life.
If you had an autistic child, what would you do to help him or her learn and grow?
JB: It really depends on the child! I would want my child to have the support they need to communicate, manage sensory overload, develop motor skills, and learn and participate in their classes. Depending on the child, that might look like speech therapy, occupational therapy, or support from professionals using a developmental model like Floortime. As my child grew older and started to encounter stigma and ignorance, I'd make sure they had access to support for that as well. Finally, all children benefit from a truly inclusive education, so I would be advocating for effective inclusion in their school. I would also want to make sure that my children had downtime and time to pursue their interests, whatever those interests may be.
What suggestions do you have to help parents deal with challenging behaviors like biting, hitting, screaming, and self-injury? Are many of these linked to communication frustrations? (I know they are for my son.)
JB: We know that people with challenging behaviors have reasons. Evidence shows that, most often, those reasons are linked to either limited communication, or underlying medical problems. Ultimately, addressing those underlying reasons yields the greatest net results—not just in terms of outward behavior, but in other long-term investments in someone's communication ability, health, anxiety, or other needs and abilities.
Isn't ABA just structured teaching? How is that a bad thing?
JB: I think it would be disingenuous to argue that ABA is really just "structured teaching." That said, the idea of providing structured instruction or breaking tasks into small parts is hardly unique to ABA, and is pretty common across a variety of supports aimed at autistic people and people with developmental disabilities.
What was your experience with ABA as a child?
JB: I had experiences of professionals using ABA techniques, including "quiet hands" on me, but I didn't receive formal ABA—I wasn't formally diagnosed until I was 16. What mattered the most, for me, wasn't actually a particular therapy (although there were a lot of those). It was access to an individualized, high-quality education focused on helping me to be the best me I could be. I was exposed to challenging work by people who presumed competence and believed that, with the right supports, I could learn. And I did.
Any other advice, thoughts, or further reading?
JB: Currently many insurance companies only cover ABA. As a result, we see a lot of therapies that aren't really ABA—certainly not ABA as described by professional standards—being called ABA in order to obtain that coverage. So a lot of the time we end up paying less attention to what something is called and more attention to what something does. Sorting objects by color might be called ABA, or TEACCH, or stimming. Forced eye contact might be called ABA, or RDI, or speech therapy.
ASAN is currently developing a toolkit on behavioral health options for families and individuals. It's still very much in development, but our first component, aimed at families and individuals trying to figure out what their insurance will cover and what their choices are, can be found here.
Julia's insight helped me make sense of the ABA debate and to figure out better ways to help my son. Now that we're no longer doing ABA, my husband and I are focused on more organically building our son's communication, practicing daily living skills, supporting his interests, improving his motor coordination, and working on academics each day through RPM lessons. Our goal is no longer to have a child that's exactly like his neurotypical peers—our goal, to use Julia's words, is to "support him in growing up into an autistic adult who is happy, healthy, and living a self-determined life." And you know what? Overall, he's responding beautifully to the paradigm shift in our house and constantly surprising us.
Jamie Pacton lives near Portland where she drinks loads of coffee, dreams of sailing, and enjoys each day with her husband and two sons. Find her at www.jamiepacton.com, Facebook (Jamie Pacton), and Twitter @jamiepacton.