Oh, college me (picture above). So young, and kind, and full of hope. In this picture I was probably somewhere between the ages of 19-22. I was an active member of my campus church group, the psychology club, an undergraduate research assistant at two labs in the psychology department and a provider of Applied Behavior Analysis (ABA).
This post is about the journey that I've taken in understanding the history of ABA therapy as well as how my own thoughts and opinions have changed as I've aged to the ripe old age of 29. Let's jump in!
What is ABA?
The following is from the Autism Speaks page on ABA:
"Applied Behavior Analysis (ABA) is a therapy based on the science of learning and behavior. The goal is to increase behaviors that are helpful and decrease behaviors that are harmful or affect learning. ABA therapy programs can help increase language and communication skills, improve attention, focus, social skills, memory, and academics, and decrease problem behaviors. Positive reinforcement is one of the main strategies used in ABA. When a behavior is followed by something that is valued (a reward), a person is more likely to repeat that behavior. Over time, this encourages positive behavior change. Understanding antecedents (what happens before a behavior occurs) and consequences (what happens after the behavior) is another important part of any ABA program."
It's an umbrella term that covers a lot of different therapies like Discrete Trial Training (DTT), and Task Analysis.
So sounds great right! We love when kids gain skills! So...
What's the issue?
Adult Autistic people are the group who have, by far, been most outspoken about the damage that can be done by ABA. In an effort to center their voices- I'll highlight some quotations from Autistic adults here and link to their work:
"Many therapies can be helpful for autistic people, like physical therapy, speech therapy, occupational therapy, and AAC. We think these therapies should be easier for autistic people to get. But there are some therapies that focus on making autistic people seem “normal” or appear “less autistic”. The most common type of this therapy is Applied Behavioral Analysis (ABA). ABA uses rewards and punishments to train autistic people to act non-autistic. ABA and other therapies with the same goals can hurt autistic people, and they don’t teach us the skills we actually need to navigate the world with our disabilities. Sometimes people say they use ABA to work on other skills, like communication. There are better ways to teach those skills. We work to make those better ways available to everyone." - What We Believe, Autistic Self Advocacy Network
"Despite making ABA therapy fun and positive, the underlying goals of ABA have not changed. And it is these goals that, like gay conversion therapy, do long-term damage to the human psyche. ABA is not designed to consider the child’s feelings or emotional needs. You can go to any ABA website and read what they say and you’ll see that there will be no discussion of the child’s emotional welfare or happiness, only behaviors. To ABA, behavior is the only thing that matters. In an video [where there is a] crying child, an autistic person wonders why she is so unhappy. Is she exhausted? Overtired? Overwhelmed? And when she stops fussing and goes back to doing the work, we can see the resignation on her face. She isn’t happier. She’s just accepted that her feelings don’t matter and the fastest way to escape the situation is by complying." - Invisible Abuse: ABA and the things only autistic people can see, by C.L. Lynch, Published on NeuroClastic
"ABA (applied behavior analysis) is the modern form of B. F. Skinner and Ivar Lovaas's theory of behaviorism as applied with vicious and efficient cruelty to the lives of thousands of Autistic children and youth across America. While the ethical, monitored use of it may be beneficial in the case of life-threatening behaviors, its uninhibited use and abuse is a great way to induce internalized ableism, self-hatred, and post-traumatic stress disorder. Many Autistic adults who were put through ABA as children now have PTSD." - What They Should Be Talking About, by Lydia Brown Published on their blog Autistic Hoya. (Lydia is an intense person, but their blog is what initially clued me into the fact that there even was a controversy around ABA).
Controversial Take 1
Something one of my fellow graduate students said to me once really stuck with me when we were having a discussion about the controversy around ABA.
"I don't know Ashley, I just think if you're a nice person then your therapy will be nice."
It's not a comfortable thing to think about- the idea of the provider him/her/themself being the make or break between whether a given practice is abusive or not. Humans love to categorize and we want clear guidelines about what therapies are GOOD and what therapies are BAD. There are obviously practices that are inherently abusive and I wrestle every day with whether or not ABA as a whole is one of those practice, or if elements of it are. But I've also known some pretty evil Cognitive Behavioral Therapists (CBT) who implement their therapy in a fairly evil way.
It's not so much that I have a rosy opinion that I think any therapy has the power to be good, it's more that I think all therapies have the potential to be evil (#raisedCatholic). When I was an ABA provider, I think I was nice. Granted I'm sure we'd all love to think that. But I could never quite bring myself to ignore my patient's feelings. We took breaks, I thought of ways to show my patients how to ask for what they needed before it came out in aggressive or self-injurious behavior, we took walks, we sat by little streams, we spun in circles and jumped on trampolines. I enjoyed being around them so much that I decided I wanted to make an entire career out of.
And I made mistakes and probably did some damage too. When I was ages 19-22 I didn't have the confidence that I have now to say that I was uncomfortable with extinguishing harmless stims, or trying to sensitize children to overwhelming stimuli without an understanding of the underlying anxiety. I can't ignore that I did those things. I can only take responsibility for them and use them to better know the kind of provider I want to be moving forward.
Controversial Take 2
"What's the difference between a cult and a religion?" "A religion allows you to ask questions."
By now, I'm sure many of you are picking up on the fact that I went to Catholic school. The above is a quote from my 11th grade religion class. I don't know why but it's really stuck with me. And it's one of the biggest personal problems that I have with the ABA field as a whole. C.L. Lynch was not exaggerating in the above quote when she said that ABA doesn't care about feelings. Within the ABA world it literally feels taboo to use emotion words like "anxious" or "sad". In my experience, in this way ABA feels...cult-y.
I'm a CBT provider, but I can still sit down with a psychoanalyst and have an interesting discussion about the pros and cons of both of our approaches. I will only speak for myself but I've never met an ABA provider who can do this. If I've ever tried to initiate a discussion about the relative pros and cons of ABA's purely behavioral approach I've never been met with thoughtful consideration- only outright rejection. As someone who believes in the importance of self-reflection for ethical practice, that's a little frightening. I think if ABA is going to step into the future then the therapists need to get comfy with a good long hard look in the mirror to identify legitimate pros and cons. It's okay guys, all the other therapists are doing it!
Do You Still Recommend ABA?
Full disclosure, sometimes I do. I recommend whatever therapy makes the most sense for the person or family in front of me, with their unique circumstances, at their specific moment in time. Some of the kids and young adults I've worked with have been engaging in dangerous or even life-threatening behavior. In those cases it's 1) Manage the behavior first so the kid and family live, 2) Explore the underlying emotion difficulties going on that may be contributing to the behavior. In cases with serious aggressive, self-injurious, or other dangerous behavior (elopement, pica) I'll absolutely recommend ABA to families to stay safe, in combination with other therapy like Occupational Therapy to address sensory needs, or counseling to address emotional needs later on. I'll sometimes also recommend it for my kids who are having a really hard time understanding cause and effect connections because there's such a heavy emphasis on this in ABA.
I wish I had more space here to get into second generation ABA therapies (also called Naturalistic Developmental Behavioral Interventions- NDBIs) like Pivotal Response Training (PRT) and Early Start Denver Model (ESDM). Therapies like this have made a lot of improvements from first generation ABA therapies like Discrete Trial Training (DTT), and are generally the first thing I'd recommend if I feel ABA would be helpful.
Final Thoughts
My thoughts to families considering this kind of therapy- vet your providers hard. Explain your values and goals as a parent. Explain or assist your child in explaining their own values and goals. If you feel uncomfy with something trust your instinct, don't allow yourself to be scared, bullied, or explained into being okay with something you aren't okay with. Look for people who genuinely like and see the inherent value in your kid.
That's all until next time!
I'll see you all in hell.
Ashley
Comments