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By Katherine Johnson, M.S., BCBA
Senior Director of Partnerships, LEARN Behavioral

 

Eye contact. “Quiet” hands. These were goals for autistic children everywhere in ABA programs in the 1990s. As a generation of autistic children have come of age and grown into autistic adults, we’ve heard their criticisms, a few of them being: eye contact is painful; stimming is soothing; I shouldn’t need to change myself for your comfort.     

One of my first clients was a clever, curious-minded little boy driven by his love for animals great and small—particularly gorillas. I was proud of the program his team and I built, thick with motivating, play-based learning opportunities. Yet, when a supervisor conducted a consult, she privately admonished me for failing to target his quiet but persistent vocal stereotypy. Standing by my decision, I told her we wanted him to speak eventually, and that decreasing vocalizations now would be useless and cruel—we would shape them later.

Looking back, I still agree with my decision to hold off on treating the vocal stereotypy, even if I’m more than a little embarrassed by some of my other decisions, not to mention the overall self-satisfaction of my youth. After all, I considered myself part of the “new wave” of compassionate autism care, only targeting things that were significant to the client. Or so I thought.

Because … did I require this sweet boy to make eye contact and have quiet hands during 1:1 teaching?

Oh. Yes.

Yes, I did.

Nearly 50 years ago, in 1972, an article was published in the Journal of Applied Behavior Analysis that criticized how the science of behavior analysis was being used in our society. In the article, “Current Behavior Modification in the Classroom: Be Still, Be Quiet, Be Docile,”[1]  authors Richard Winett and Robin Winkler concluded that behavior analysis was being used to preserve the status quo of flawed institutions, when it was the systems themselves that were in desperate need of change. Behavior analysts were keeping students quiet, instead of helping them learn—and keeping psychiatric patients in line, instead of helping them successfully re-enter their communities.

Winett and Winkler’s article was required reading in my graduate program two decades later, in the 1990s, and I remember hearing frequent references to it in professional circles. Even so, during this time period, applied behavior analysis treatment was not consistently tailored to the needs and interests of individual clients and families, leading to programming that sometimes shaped behavior to look non-autistic.

In the ’90s, bullying and discrimination of all varieties were facts of life. Initiatives to teach school children to be “kind,” through district-wide acceptance programs and anti-bullying campaigns, were not yet the norm. In the field of ABA, there was talk about how people with developmental disabilities had “the right to … eat too many donuts and take a nap.”[2] Yet, when selecting goals for children with autism, increasing eye contact and decreasing stereotypy (“stimming”) were nearly always on the list. Our intentions were pure: we taught our clients to behave in ways we thought would increase their chances of acceptance in an imperfect, discriminating society.

But you know what they say about good intentions.

Questions we asked ourselves: Will her stimming be met with teasing? Will that echolalia prevent him from being invited to birthday parties? Will anyone hire him if he can’t look them in the eye?

Questions we did not ask enough: Does this child want to look like everyone else? What is our programming communicating to her about herself? Is the lack of societal acceptance of these habits perhaps the thing we most need to change?    

A child-centered, family-focused approach

Today, half a century after Winett and Winkler published their article, some ABA providers continue to place importance on making their clients look and act like neurotypical people, while others have evolved their practice to foster and integrate each client’s individuality.

In my opinion, one of the most important parts of behavior analysis is building a close and authentic collaboration with children and families—and working together to identify meaningful goals. A goal might include, for instance, the teaching of self-advocacy, which often starts with teaching mands (requests) to the youngest children. Then, as children grow, we teach them to do things like ask for breaks and to negotiate. Eventually, we teach them to set their own goals and self-monitor their own progress—in short, how to reach for their dreams.

In a child-centered, family-focused model of care, treatment revolves around the individual interests, needs, and values of the client and family. Goals change over time, just as individuals and families, and what they need, prioritize, and value, change over time.

And so, let us not dismiss the lived experience of the autistic adults who have mastered self-advocacy and have criticisms of ABA. Instead, let us listen and learn, using their feedback to improve how we work with clients and families.

We are not in this field to control others. In fact, we became behavior analysts to help and are dedicated to using the science of behavior to make meaningful, positive changes in the world. We have fought for our clients’ right to effective treatment. Now, let us come together and use our collective power to fight for acceptance and eliminate discrimination in our communities. Autistic adults and families touched by autism are leading the charge on this, and many behavior analysts are following suit. Let us put the power of our science behind it—and join them in their efforts to welcome and support individuality.

[1] Winett, R. A. & Winkler, R. C. (1972).  Current behavior modification in the classroom: be still, be quite, be docile.  Journal of Applied Behavior Analysis, 5(4), 499-504.

[2] Bannerman, D. J., Sheldon, J. B., Sherman, J. A., & Harchik, A. E. (1990).  Balancing the right to habilitation with the right to personal liberties: the rights of people with developmental disabilities to eat too many doughnuts and take a nap.  Journal of Applied Behavior Analysis, 23(1), 79-89.

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