Perspectives: Embracing Individuality in Behavior Analysis

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.

Why We’re Embracing Acceptance this April—and Beyond

As you know, April has been Autism Awareness Month for several decades now. This year, after careful consideration, we are shifting our focus for the month from Autism Awareness to Autism Acceptance. Why Acceptance, instead of Awareness?

For one, leading disability groups nationwide, including the Autism Society of America, Easter Seals, The Arc, and the National Association of Councils on Developmental Disabilities, are shifting to Acceptance—and urging the media and other organizations and outlets to do the same. “The shift in the use of terminology aims to foster acceptance to ignite change through improved support and opportunities in education, employment, accessible housing, affordable health care, and comprehensive long-term services,” the Autism Society release explains.

“While we will always work to spread awareness, words matter as we strive for autistic individuals to live fully in all areas of life,” says Christopher Banks, President and CEO of the Autism Society, in the release. “As many individuals and families affected by autism know, acceptance is often one of the biggest barriers to finding and developing a strong support system.”

Here, Banks echoes feedback from a growing number of individuals with autism—namely, that they have been left out of conversations during Autism Awareness Month and presented as a “problem” that needs to be fixed, instead of as individuals with unique ways of processing and existing in the world. Perhaps Kassiane S., an autistic activist, says it best in her widely circulated essay, “Acceptance vs. Awareness,” written nearly a decade ago, in 2012:

The gulf between awareness and understanding is as wide as any ocean. Awareness is all about creating a sense of urgency and fear. Awareness efforts present us as a problem to be solved, and yesterday. Awareness operates in stereotypes and soundbites, not real people. Awareness has no substance; it is but a tool to earn more money to fix us and to promote yet more awareness.

Awareness is easy. Acceptance requires actual work.

Acceptance comes from a place of understanding. Understanding isn’t generated by soundbites and posterchildren. Understanding takes work. To accept us, people first need to acknowledge us as individuals-as three dimensional, growing, developed characters. We are not all the same, and we are not but a collection of deficits. Acceptance is seeing that — and seeing that one’s distaste for an autistic person is more likely than not because of “autism.” Awareness tells you that anything objectionable about us is “autism,” but that explanation is clear, simple, and wrong.

The discussions around awareness and acceptance are part of the larger debate about ABA and neurodiversity, and whether ABA seeks to rid children and young adults of their core identity—and replace it with a socially-accepted, robot version of personhood. This is in no way reflects the aspirations of LEARN, and we consider it an enormously misguided perception, with potentially dangerous consequences. That said, we do realize the debate about ABA and neurodiversity continues. Across our communities, there are those who believe that any use of ABA is harmful to autistic individuals. We obviously disagree, but at the same time, we understand the historical perspective of ABA treatment as a rigid and structured therapy, which many individuals experienced. For these reasons, we view the criticism as part of a larger voice of concern about the rights of individuals with autism.

We bring this up now, as we embark on Autism Acceptance Month, because we consider our direction taken on the matter an opportunity to respond to the critics of ABA and reaffirm how and why we are an organization dedicated to nurturing, and certainly not harming, every individual with autism in our care. In fact, we design our services in a way that accepts, honors, and fosters individuality.

Throughout April and continuing far beyond, we will share stories and information about our use of contemporary ABA therapy and how we tailor treatment to the unique needs, interests, and values of every child and family in our care. Simultaneously, we will publish and give voice to the thoughts and experiences of a diverse range of people in the autism community, from autistic adolescents and adults to parents, advocates, and leading professionals in the field of autism.

Of course, acceptance cannot happen in a single month. Instead, it will take time and, as Kassiane S. says—hard work. Acceptance, too, is a first step toward the other critical goal: full inclusion.

We hope you will join us in this important endeavor as we work collectively to make a difference in the lives of children and families, and the millions of individuals with autism worldwide.

#togetherwecan

Justin & Hanna

Justin Funches, President, Autism Services, LEARN Behavioral
Hanna Rue, PhD, BCBA-D, Chief Clinical Officer, LEARN Behavioral

 

LEARN Behavioral specializes in using contemporary applied behavior analysis (ABA) to personalize treatment for children and young adults with autism. With clinical insights refined through decades of service to the autism community, we support more than 5,000 clients across 15 states and the District of Columbia through brands that include AST, BACA, WEAP, BCI, Total Spectrum, Trellis, and SPARKS. Our team consists of more than 30 doctoral-level clinicians, 450 Board Certified Behavior Analysts®, and 4,000 behavior technicians who share a common mission: to find success for every child in our care.

Women Leaders at LEARN Talk About Working in STEM—and Why Behavior Analysts Sometimes Get Left Out

Most of us in the autism field know that women make up the bulk of board certified behavior analysts (BCBAs). In fact, women represent 85.43 percent of BCBAs, according to the Behavior Analyst Certification Board. What often gets overlooked, however, is that the nearly 78,000 female BCBAs across the country are also part of STEM, the acronym for an area of work—science, technology, engineering, and math—notoriously lacking in female leadership. Why are behavior analysts left out?

This week, in honor of Women’s History Month, we asked three female leaders at LEARN what it’s like to work in a STEM field—and how they use science, math, and data analysis in their positions. The women include Chief Clinical Officer Hanna Rue and Senior Vice President Sabrina Daneshvar, in addition to consultant and Women in Behavior Analysis (WIBA) Conference Director Devon Sundberg. Here’s the conversation.

 

Q: STEM is a hot topic right now, but the field of behavior analysis tends to get left out of the conversation. Why do you think that’s the case?

A (Hanna Rue): If you ask behavior analysts if their friends and family understand their job, the answer is usually “no.” As a field, behavior analysis has not done a great job at marketing the positive impact the field can have on socially significant behaviors. When we work with kids, our work looks like play—and that’s great, but what people don’t often see are the copious data collection, critical analysis, and data-based decisions that happen behind the scenes in treatment.

A (Devon Sundberg): As humans, we have an overwhelming desire to pigeonhole all aspects of our lives and tend to view helping individuals as a form of therapy. Mistakenly, society does not often consider therapy a form of science. Applied behavior analysis, especially as practiced at LEARN, represents the union of science and the love for helping others. For instance, we can’t track meaningful change objectively without data, and science is a huge part of what we do.

A (Sabrina Daneshvar): Some people consider behavior analysis a soft science and underestimate the importance of the science we exercise. The term “soft science” is a misnomer. In actuality, we’re doing the same things scientists do by using observation and data to make treatment decisions.

 

Q: You actually use a lot of science and math, both in your leadership positions at LEARN and in your previous clinical work as behavior analysts. Can you talk some about the STEM skills you use—and why they’re a big part of behavior analysis?
Hanna Rue(Circle)

Hanna Rue – Chief Clinical Officer

A (Sabrina Daneshvar): We have scientific rigor and methodologies in place that aren’t always visible. For instance, we make a hypothesis, test the hypothesis, and use evidence-based, scientific evaluation to make decisions and refine our approaches daily. Our work requires us to account for what we observe, while also accounting for sources of variability. There’s nothing simple about behavior analysis.

A (Hanna Rue): I constantly use math to evaluate how we’re doing as a company from a clinical perspective. For instance, we conduct surveys at LEARN to evaluate our services and use the data to inform our training and clinical practices. A number of projects require data analysis and an understanding of parametric and nonparametric statistics.

 

Q: How has ABA therapy evolved with the use of data gathering and analysis? What about aggregated data—how does that contributed to better treatment and services?

A (Hanna Rue): I started working in the field before it was common to have apps assist in data collection. Back then, I collected paper and pencil data and graphed it on good old-fashioned graph paper. Now, we can collect data via an app that can be downloaded to a tablet or smart phone. It is incredible to think that I can see updated behavioral data from clients at any point in time. Quick access to behavioral data helps to improve the quality of behavioral programming and efficiency in clinical practice.

A (Sabrina Daneshvar): I can relate to Hanna—and add that as a field, we’re starting to look not only at a single client’s response to a particular behavior intervention but also to multiple clients across the country. This can only strengthen the work we do and the interventions we administer. Insurance companies are starting to request data, too, as evidence that our services work. Thankfully, we’re in a good position at LEARN to provide it.

 

Q: Did you pursue math, science, and other STEM-related fields growing up? When did you take interest in these areas?
Sabrina Daneshvar(Circle)

Sabrina Daneshvar – Senior Vice President

A (Devon Sundberg): I had little interest in math or science growing up, though I was interested in helping people. My first job was at a group home for children with autism, but no one trained me, and my efforts weren’t all that successful. In my next job, I learned how to provide applied behavior analysis—and realized how much it could have helped kids in my former job, at the group home. I was disappointed that not all children had access to this amazing therapy and excited to finally feel effective in my work. From this, I learned how useful math and science can be when applied to real-life problems. From then on, I was hooked. 

A (Sabrina Daneshvar): Like Devon, I didn’t pursue math and science as a kid. In college, I majored in psychology and fell into the field of autism when I worked as a special education teacher at an autism treatment center affiliated with my school. It was one of the hardest jobs I’ve ever had. I didn’t feel equipped to handle my students and decided to go back to school to earn a doctorate in developmental psychology—to learn how to make things better. As I got more involved, not just in the treatment but also the research, that’s when the science interest in me piqued. I saw the need for science and statistics and haven’t looked back.

 

Q: A longstanding belief (or perhaps a myth) in our society—and in many societies—is that boys are better at math than girls. But what does the research say?

A (Hanna Rue): Empirical evidence does not support male superiority in math or science. In fact, history suggests that the environment was the primary factor resulting in so many more males than females in math and science, with gender stereotypes leading teachers and mentors to encourage boys and young men to participate in math- and science-related activities. Given that behavior analysts understand how much adult attention and praise can shape behavior, it isn’t surprising that more men ended up in careers in science or math. That is all changing now, and I am thrilled.

A (Sabrina Daneshvar): Yes, research shows that boys and girls learn math at similar rates, but it’s the social expectation that boys are naturally better at math that can make boys perform better. Carol Dweck, who wrote the book The Growth Mindset, has done some interesting research in this area. Dweck found that girls who viewed math ability as “a gift” performed more poorly in math than those who viewed it as something they could improve through practice and experience. According to Dweck’s theory, when girls believe they can achieve in math by applying themselves, they can, in fact, achieve in math (and science, too).

 

Q: What advice would you have for girls or women who shy away from or just dislike or struggle with math and science? 
Devon Sundberg(Circle)

Devon Sundberg – Consultant & Women in Behavior Analysis (WIBA) Conference Director

A (Sabrina Daneshvar): Math and science skills are a continuum. There’s a lot of variation in skill levels among various skill sets. For instance, someone might be great at data analysis and struggle with communicating findings or understanding the impact. I’m not the best of math, but I have a solid grasp of statistics and how to do a scientific study. My advice is not to be intimidated—and trust that you will have strengths in one area and limitations in another. And that’s OK.

A (Devon Sundberg): Math and science can make us more effective in the areas we care most about. I wasn’t excited about math or science until I realized these disciplines allowed me to do my job more effectively. At that point, math and science started to come naturally because they served a meaningful purpose in my life.

A (Hanna Rue): For young girls, I think it is important to find activities they really enjoy and discover how they connect to STEM. One of my favorite websites to recommend to parents is A Mighty Girl—it’s full of inspiring stories, books, and resources that focus on female contributions to science and technology.

 

Q: What advice would you have—for women and men, or girls and boys—about working in ABA? What, in your opinion, are some of the advantages of a career in the ABA field?

A (Hanna Rue): Anyone who finds human behavior interesting should consider a career in ABA. The technology of ABA can be used to address an endless number of socially significant behaviors. In fact, behavior analysts now work in fields that involve social justice, health and fitness, reducing waste, and safety.

The field of ABA is relatively young, and opportunities for research and discovery—and to advance our science—are endless.

A (Devon Sundberg): Join the field of behavior analysis, even briefly. In addition to making me more effective in all facets of my life, behavior analysis makes me a better human. Understanding why we behave in the ways we do leads to enhanced communication, grace, and acceptance of others. For these reasons, I hope everyone learns about behavior analysis throughout their life.