by Ronit Molko, Ph.D., BCBA-D
Strategic Advisor, LEARN Behavioral

Applied behavior analysis (ABA) is widely considered by many professionals and families to be the “gold standard” in intervention for children on the autism spectrum. With decades of empirical evidence to support its efficacy at teaching necessary skills and reducing maladaptive behaviors, ABA is broadly funded by private and government insurance plans and typically supported as the premiere teaching tool for autism.ABA is used more extensively than many people realize. In general terms, ABA refers to the science of teaching and learning or, more specifically, the idea that, over time and through repetition, we can increase behavior that is reinforced, while decreasing behavior that is not reinforced. Corporations and marketing companies use the principles of ABA to affect buyer behavior, just as teachers use ABA to manage students in classrooms. Likewise, ABA is used to train and modify behavior in athletes, musicians, employees, and even animals.

In the autism field, the services market has evolved and expanded, leading to significant variety among ABA providers. Consequently, the term “ABA” has become associated with a broad spectrum of services, some of which do not meet the standards and definitions of true applied behavior analysis.

Additionally, there is growing criticism from self-advocates and autistic adults who received ABA services and now share stories of experiencing PTSD (post-traumatic stress disorder) and trauma from the ABA they received. Stories like these are sad and heartbreaking to hear—and call upon all of us in our field to listen to and learn from the conversations, instead of plowing onward in an obstinate disregard for lived experiences. As a profession, we need to use these conversations to reconsider how we approach intervention, and ask ourselves: are we changing specific behaviors because we determine them to be appropriate or inappropriate or because making this change actually serves the person with autism?

We also need to understand the evolution of ABA over the past 70 years. To understand the evolution, one needs to understand the history, and how we reached the point where some individuals and groups find fault in ABA. In my opinion, we cannot simply declare that old ABA was harmful and bad, while current ABA is helpful and good. If our treatment harms even a single individual, that is one individual too many.

 

The origins of ABA

Up through the early 1900s, the predominant theories and schools of psychology focused on thoughts and feelings. Dr. John B. Watson, a pioneering psychologist, popularized the theory of behaviorism in 1913. Watson believed that instead of focusing on internal and mental states, the practice of psychology should focus on observable behavior. Dr. B. F. Skinner further developed the theories of behaviorism to describe how we learn—essentially, by describing and researching how our behavior is changed based on antecedents (what precedes a behavior) and consequences (what follows a behavior—i.e., the rewards and punishments we receive).

The principles of teaching using ABA were further defined by multiple researchers in the 1960s, forming the basis of ABA. In the mid-1960s, Dr. Ivar Lovaas developed a program designed to teach language to children with autism, using the principles of applied behavior analysis, with the goal of preventing children from being institutionalized. Lovaas’s program included 40 hours a week of intensive and rigid clinic-based ABA, with the findings of his research demonstrating the efficacy of intensive ABA on teaching language and other skills to children with autism. As a result of this research, early intervention programs were launched, and ABA became more popularized as the best form of intervention.

Nevertheless, at this time, the application of ABA was rigid and unnatural. Children were required to sit through multiple, repetitive drills to learn skills and sequences, and the number of hours of intervention were exhausting. The popularization of his methodology created a mindset among some parents and providers that intervention must be highly structured, rigid, adult-driven, and sometimes, aversive, meaning treatment could involve unpleasant techniques to alter maladaptive behavior.

 

Evolving practices

Since the early 1970s, however, the world of ABA and the application of the principles of ABA have evolved enormously. Just like in other areas of healthcare, the field has progressed as more research has been conducted and newer strategies developed. ABA has evolved into a much more naturalistic, engaging, play-based, and child-directed form of intervention. In natural environment teaching (NET), for instance, treatment takes place within the ordinary routines of daily living, occurring during mealtimes, playtime, bath time, community outings (like a trip to the grocery store), and other natural parts of a child’s day. This sort of real-life teaching differs extensively from the overly formal, clinical settings of the past.

Today’s ABA programs should be tailored and customized to the needs, values, and culture of each child and family. ABA services need to involve choice-making and person-centered planning, in which each client and family steer and help make decisions about their target goals and treatment, and what fits within their family’s culture. Ultimately, every client and family need to decide what goals to target in therapy, with guidance from the behavior analyst. As in other areas of healthcare, research and best practice standards guide the strategies, techniques, and intensity of intervention. It is the combination of professional expertise and family input that aligns to create the most effective program for each child.

Consider, for instance, a conversation I had recently with the mother of a non-verbal child with autism who communicates regularly with noises one might describe as grunts. A behavior analyst wanted to use ABA to reduce that particular behavior, but the child’s mother did not agree. “Those noises are my child’s language,” she explained. The mother explained further that with each goal presented by her ABA team, she asked these questions:

• Does the goal respect my son’s privacy?
• Does it foster his independence?
• Does it cultivate his voice and self-expression?

The mother, in this scenario, knew what she wanted for her son—and advocated effectively for him.

Other parents I’ve talked to celebrate the skills and capabilities their children gained through ABA services, attributing their children’s gains to the dedication of their ABA providers. Many of these parents stress the importance of making sure the goals and strategies they were advised to use fit with the culture and parenting philosophy of their family. Not every parent or caregiver will advocate in this way or have the time and capacity to manage their children’s program. It’s up to us, as a profession, to honor and respect each client and family’s wishes and values, and to discuss issues related to things like dignity, individuality, and self-expression. It’s up to us to honor self-hood.

As the population of individuals with autism is aging, we now have a group of adults who received ABA services and wants to articulate and share their ABA experiences. I urge my colleagues to stop and listen—and use what we learn to inform the future of services. For example, some adults have articulated that making eye contact is physically unbearable, and, yet, this is one of the core skills ABA practitioners teach as a foundational part of learning.

Given what we’ve learned, it’s time to examine the degree to which each of the skills we teach benefits and serves individuals with autism, despite the fact that we may consider them appropriate social and communicative behaviors. In other words, we need to weigh our own self-interest as a society against what we’re learning from the individuals to whom we’ve devoted our careers.

Stay tuned for Dr. Molko’s upcoming story, where she offers advice on what to look for in a quality provider.

Becky Schoenfeldt, a registered behavior technician (RBT) for LEARN’s Behavioral Concepts (BCI) clinic in Worcester, Massachusetts, spends her days helping kids with autism attain goals on their behavioral health treatment plans. At the end of the day, she goes home to do more of the same, only this time with her 18-year-old son, Dougie, who was diagnosed with autism at age three and needs round-the-clock care.

In a recent interview, Becky talked about her journey with autism, the pitfalls and triumphs along the way, and the lessons learned as both a parent and practitioner in the field. In honor of Mother’s Day, she gives advice to other moms—and all parents and caregivers of kids with autism—about the challenges and rewards.

Q: Let’s start from the beginning, Becky. You were working as a case worker for the Housing Authority, helping families from homeless shelters find work and become self-sufficient, when you noticed developmental delays in Dougie. Tell us about that time period.

A: That’s right. At the time, I spent my days—and nights—helping families get back on their feet after setbacks. I also worked for the Department of Youth Services, the juvenile justice agency in Massachusetts that serves kids and teens who were arrested or charged with an offense. The work wasn’t easy and required late shifts. When I became a parent, I knew I couldn’t keep working there because of safety issues related to the challenging behaviors of some of the kids. I had three little children close in age—technically, Irish triplets. Dougie and Stevie, my twins, have a sister Alli who is only 11 months older. I had my hands full.

Stevie and Alli are neurotypical, so I noticed certain things were different with Dougie. Instead of crawling, he would scoot on his butt. He wouldn’t respond to his name or loud noises. We would bang pots and pans and get no response. He also didn’t make eye contact or speak. But he was sweet and adorable. Once he started walking, he would take us quietly by the hand and lead us along. He was a happy boy.

Often, I brought up my concerns to family and friends, and they would say, “Don’t worry—he’ll eat [or walk or talk] when he’s ready.” The pediatrician kept saying, too, that twins do things at their own speed, that I shouldn’t worry. But I knew in my heart something wasn’t right.

Q: What was it like getting the diagnosis?

A: We were prepared and knew it was coming, but it still felt like a kick in the gut to hear those words. I worried about his future, his present—everything. And then I realized: parents of newly diagnosed kids can either wallow in self-pity or start supporting their child so he or she can live the best life possible. That’s what we did—we were proactive and started supporting Dougie.

We lived in Connecticut at the time and enrolled Dougie in preschool, thinking it would be a good opportunity. When I picked him up from school one day, they told me he had eaten rocks—as though that was normal behavior for a child. “What do you mean, he ate rocks?” I asked them. They said it wasn’t so unusual, but I didn’t believe them. I worried about his safety.

We decided to move to Massachusetts, where my mother-in-law worked as a teacher in a local school district. We had high hopes for Doug’s first school in Massachusetts but came to realize our son needed more support than the school could provide, despite their best intentions. Sometime after kindergarten, Dougie spotted a red jeep in the parking lot that looked like his grandmother’s car. Thinking it was, in fact, his grandmother’s car, he bolted out the door, somehow getting past several staff members—six of them, I was told. How could a kid bolt past six staff members? Why couldn’t they protect my son?

For a long time, Dougie has had an issue with bolting. Even today, if he sees something as ordinary as a squirrel across the street or a holiday decoration nearby, he might take off. He doesn’t have the safety skills.

Q: Did you end up keeping Dougie at that particular school? What was your relationship like with the school staff?

A: We realized the regular public school wasn’t right for him. They wouldn’t allow him to use noise cancellation headphones or other coping mechanisms, like a weighted scarf or blanket. Their attitude seemed to be: if you can’t change the environment, you change the kid. But it was more the environment that needed changing, with so many noises and the constant bells ringing and beeping, the harsh lights, smells, and crowds. These things really bother kids on the spectrum.  

We tried to get Dougie placed out of the school and put into a more supportive set up, but that would have cost the school district money they didn’t want to pay. Plus, they would have had to admit that they couldn’t manage Dougie, which they didn’t want to do. So, it was an all-round bad situation.

Growing up, Dougie had severe self-injurious behaviors (SIBs) like head-banging or hitting his head. He often did this on the school bus, and the bus monitors weren’t trained to handle it. I had to leave work several times to pick up Dougie from school, especially in 6^th grade—that year was horrible. But the school principal was great, and knew we needed something different. We ended up hiring a lawyer to help us get the school district to “outplace” Dougie, meaning they paid for him to attend another school. It worked, and that was the best $350 we ever spent.

Q: That sounds like an incredibly rough year. What happened next? How did you get Dougie the help he needed?

A: Around the time, I had retrained in my career and worked as a behavior technician for BCI. It was stressful because I kept having to call out of work to take care of Dougie. I finally went to Dr. Robinson, the founder, and asked if Dougie could get a spot in a social skills group at BCI. We worked out an arrangement, and Dougie started ABA therapy.

Eventually, with the help of Dr. Robinson and the lawyer, we secured a spot for Dougie at a school for kids with autism, the Center for Applied Behavioral Instruction (CABI), in Worcester, and that has made all the difference. He has one-to-one attention, a highly-structured routine, and only six or so students in the classroom. He’s a happy kid now—a completely different kid now. He’s doing geometry. He works as a cashier in the school store. Best of all, he actually seeks interaction and even physical contact, like a hug, from people he trusts.

He also discovered he likes art. Just like his dad, Dougie is a talented artist. He loves to draw on whiteboards, and loves to draw Sonic characters.

Q: CABI seems like a great place. Have you thought about life after CABI? How long can Dougie stay there?

He can stay at CABI for four more years, until he ages out at 22. It’s gone by so fast. My husband and I both have to work, and we’re not sure what we’re going to do. We’re looking at day programs because Dougie will still need structure. But I want him to do more than bag groceries at Shaw’s. I hope he can find a job and do something related to art, something he’s passionate about, though I wonder how he can hold down a job if there’s a loud noise, like a baby crying. He would need an understanding, supportive work environment.

I worry about Dougie getting older—and me getting older. I don’t want him to end up in a residential program. For many people who work at those facilities, it’s just a babysitting job. But it’s far more than a job. It’s someone’s life you’re molding.

Q: Yes, it’s an opportunity to really influence and mold, as you say, an individual’s character—a person’s whole life, really. What has it been like for you, as a mom and an RBT?

A: Helping kids and families with autism is who I am and what I do. I’ve finally found something I enjoy, and it’s nice working with families. I never dread going to work because when I open that door, I know I’m a positive reinforcer. The other week, one of my kids fell asleep during a session, so we had to reschedule. Then I didn’t see her the next week because of Dougie’s spring break. When I finally got to see her, she gave me an enormous hug. That’s pretty rewarding.

When we had to go full remote with COVID, life was a rollercoaster. Dougie adjusted well because I set up his environment and work area similarly to school, with his visuals and sensory objects in place. We followed his treatment plan and kept making progress.

Q: What advice do you have for other moms or caregivers raising kids with autism?

A: I see a lot of single-parent families, mostly where it’s just the mother. That’s not easy, especially if there are other kids in the family she has to care for. When parents have their own personal problems they’re dealing with, that can make it difficult to support the goals of therapy at home. But that part of therapy is so critical—learning has to continue in the home environment.

The advice I can give other moms and parents is to build your support network. It might take work, but the effort is worth it. Also remember that no challenge is too big, and no victory too small. I like a challenge and decided to rise to the challenge of raising Dougie and two other kids, while helping kids in my job. It’s not easy, but it’s my life, and I wouldn’t trade it for anything.

Q: With your busy schedule, how do you practice the important art of self-care? What will you do for fun this Mother’s Day?

A: For self-care, I make every moment count, even when I’m at the grocery store. Sometimes, I just enjoy the quiet of walking down an aisle alone, getting to think or move at a slower pace for a moment. This summer, I’ll go to the zoo and water park with my family. We’ll get outdoors and do some of the things we couldn’t do last summer because of COVID.

On Mother’s Day, I’ll be with my family, but the weekend before, my daughter, Alli, will be home from college—she goes to Roger Williams University in Rhode Island. On Sunday, I’m taking the two of us to get our nails done. It’s an early Mother’s Day present before she has to go back to school.

As parents and caregivers, we’re hard-wired to respond to our children’s cries with efforts to comfort and soothe. Nothing is more frustrating, however, than when our efforts fall short—and our child spirals into a meltdown. What can help? In a few words: a calm-down kit.

A calm down kit is simply a collection of objects and items to help children cope with their emotions in a positive and safe manner. Also known as sensory integration boxes or toolkits, each calm-down kit can look a little different, depending on the needs and interests of your child. Of course, you can buy preassembled calm-down kits online, but your kit won’t have the magical ingredients that can comfort your child (aka, the objects and items your child loves), and often, these kits don’t take into account things like ages and sensory needs.

How, then, can you create your own calm-down kit to soothe your child’s sensory system during a meltdown? Here’s a breakdown of what to include—and how and when to use the kit.

 

What to include in your kit

As a parent or caregiver, you know your child best. Ask yourself these helpful questions:

• What soothes your child when restless?
• What usually calms your child down?
• What does your child like to do?
• What are your child‘s favorite items?

Gather together an assortment of items generated from the questions above, along with objects that cater to various senses, such as sight, sound, touch, and taste. For instance, you might include:

• A weighted or soft blanket, which can help kids who respond well to deep pressure receptors.
• Fidget toys that can occupy the mind and fingers by giving kids something on which to focus.
• Noise cancelling headphones, which can provide the peace and quiet kids need during a sensory meltdown or outburst to calm their bodies.
• Bubbles, which can help kids take deep breaths for relaxation, without realizing it.
• Chew toys to provide oral sensory support and help some children focus and manage feelings of anxiety and sensory overload.
• A stress ball to squeeze and release anger and overwhelming feelings.
• Plastic baggies full of various materials like kinetic sand, oatmeal, pasta, pine nuts, or rice, which can satisfy cravings for tactile stimulation.

 

How to use the calm-down kit

Once you have the items, place them in a backpack or cloth bag, and take the kit with you in your car or on the go. Then, once a sensory meltdown starts, use the items either to refocus your child’s attention and lessen the magnitude of the meltdown after it begins. Keep in mind, too, that  you can use the kit anytime, even during typical downtime. Using the calm-down kit during downtime will serve as practice and enable your child to figure out what items help in times of distress.

Again, the goal of the calm-down kit is to give kids the tools they need to transform their inner state from upset to calm. These kits can make all the difference, not only for your child but also for  you, as a parent or caregiver.

Want to learn more about sensory issues? Listen to our podcast, “How Lighting Can Affect Your Circadian Rhythm,“ on All Autism Talk.

Our new series, “Spotlight on Black Professionals in ABA,” continues with an interview with Maia Jackson, the clinical development manager of LEARN Behavioral’s Autism Spectrum Therapies (AST) office in Oakland, California, in the East Bay region of the San Francisco Bay Area.

The series comes on the heels of an analysis conducted by the Behavior Analyst Certification Board (BACB), which found that Black behavior analysts make up only 3.6 percent of the total board certified behavior analysts, a number that lags behind the 13.4 percent of Black people living in the United States, according to 2019 U.S. Census data.

Here, Maia talks about her experience and the critical need for mentorship in the ABA field.

Q: Thanks, Maia, for taking time to chat with us. Let’s start with the beginning: how did you get into ABA? What attracted you to the field?

A: My senior year in college at Sacramento State University, I still didn’t know what I was going to do. I majored in psychology, which is kind of general. As I got closer to graduating, I went on Craigslist—that’s a sign of my age—and saw a job posting that said, “Work with kids!” I really enjoyed kids and thought, Why not? I ended up taking the job and doing direct intervention with four- and five-year-old kids with autism spectrum disorder (ASD). They were adorable.

After a few months of that, I knew I wanted to continue but in a way that allowed me to grow in the field. I started Googling and looking at various options for graduate school, ultimately enrolling in National University’s master’s program in education, which offered a specialization in ABA.

Q: What was graduate school like for you?

A: It was an interesting, though busy, experience. I kept my job with Bridges, an ABA provider in Sacramento, and juggled work with studying. It helped that most of my courses were online, but that also made it harder to make connections and interact with my peers and professors. My studies lasted about a year and a half, and when I graduated, in 2009, I needed a board certified behavior analyst (BCBA) to observe and supervise me in the clinic for a set number of hours, in order to earn my own credentials as a BCBA. But ABA was still a relatively new field, at least in regard to autism, and I couldn’t find anyone to supervise me. There just weren’t that many BCBAs around at that time.

In 2011, I ended up taking a job with AST, which had recently opened a new office in the Bay area. The office caseload grew quickly, which was exciting but also challenging—I was thrown into the mix. There was a learning curve, but I got the supervision and support I needed to earn my BCBA certification and ultimately help kids and succeed in the position.

Q: What was the supervisory experience like for you? What kind of feedback did you receive on your work in the clinic?  

Someone from one of AST’s more established offices in southern California drove up to supervise me, and that was a real game-changer. I came to think of her as my mentor. In fact, I didn’t know what I had been missing until I had someone come in and provide that level of support. Mostly, what she gave me was time—time to sit and listen as I talked about my cases, time to answer my questions, time to trouble shoot. I hadn’t had that level of support before. She gave me her input and clinical guidance and expertise. Plus, she was a woman of color, like me, and I hadn’t worked with a woman of color in ABA until that time, even in grad school. She gave me the confidence to express my thoughts and concerns about the job, and advice on how to balance my professional and personal lives. We still keep in touch and call each other to troubleshoot or even just catch up.

Q: It sounds like the relationship with your mentor was a game changer, indeed. How has that experience influenced your continued work in behavior analysis?

A: Well, right now I work as the clinical development manager, supporting newly hired trainers and providing training to new supervisors, so my job, essentially, is to help guide and support new employees in clinical positions. This is important because the better trained we are, and the more we feel supported in our positions, the better the outcomes for our clients and the higher retention rates for our team.

I’m also part of a team of five professionals at LEARN launching a mentorship program for employees taking part in our organization’s Future Leaders Diversity Advancement Program Cohort, designed to increase the number of Black BCBAs at LEARN. The program provides financial assistance to employees attending National University’s master’s program in ABA. As I mentor, much of what I’ll do is what my mentor did for me—listen, guide, and help troubleshoot any problems that come along, whether related to the field or to things like work-life balance.

Mentoring is something I truly love doing. It differs from a supervisory role, where people might be guarded and careful with what they say. In a strong mentor relationship, people can pick up the phone and call anytime without worrying how they’ll be perceived. The focus is on building confidence, happiness, support, and growth.

Q: In your own words, why do you think it’s important to increase the number of Black professionals in ABA—and to increase diversity across the field, in general?

A: At LEARN and AST, we have a diverse clientele, though I’d like to see an even more diverse clientele—to see a broader range of children accessing services. Systemic issues prevent some children from getting the care they need. It often starts with well-baby checks, for instance, where a pediatrician might not refer patients who are Brown or Black to the appropriate resources in a timely manner or might not diagnose them early enough. Difficulties with transportation, work schedules (with parents working multiple shifts), and funding also prevent some children from getting the care they need. Plus, not everyone can afford services. Even with insurance, a $40 to $45 co-pay several days a week adds up quickly.

Early diagnosis and intervention are also critical. Studies show that Black and Hispanic children are diagnosed later than white children. We need to do more to make sure all children are diagnosed as early as possible so they can take advantage of the benefits of early invention. Increasing diversity among BCBAs, who can go out in the community and conduct parent and caregiver workshops, while raising awareness to pediatricians and other people in the community, are key to better serving the broad range of children in need. LEARN’s partnerships and community liaison team are doing that important work, and I would love to join and support their effort going forward.

Read the first interview in this series, “Spotlight on Black Professionals in ABA: Brandon Whitfield,” and find out more about our Diversity, Equity, and Inclusion Plan.

by Genevieve Marshall, Ph.D., BCBA-D, LBA
Clinical Director, SPARKS

Years ago, in an undergraduate social psychology class, I recall my professor focusing an entire lecture on how the industrial revolution affected our relationship with nature. Specifically, the professor talked about the migration to cities and the increasing amount of time children spent inside, whether working or at school. Coupled with an increase in pollution and limited urban green space, doctors started seeing a rise in depression, anxiety, and general malaise. Their prescription? A fresh air retreat—time away from the city, time spent in nature.

I remember thinking how obvious and ridiculous the lecture came across at that time—of course, deprivation from nature is a bummer. Who doesn’t know that? When our visual environment is made of overly designed spaces and straight lines, it messes with our perception and psychology. A lack of Vitamin D from sunlight makes people sad; how strange it was to me that people needed to see a physician for medical advice, when nature was free and plentiful.

In my reaction, twenty-some years ago now, I recognize my privilege in being able to spend leisure time outdoors. As a child, I spent every day of every summer outside camping and canoeing or cavorting around my grandmother’s cottage. I built tree forts and caught frogs. In the winter, we skied and went sledding. I see now that access to abundant nature was a privilege. My parents could facilitate access; it aligned with their ‘crunchy’ conservation mindset, and they were afforded time away from work or caregiving. We also lived in a place close to nature—it was accessible, and, so, I took for granted that access was not always free.

Fast forward to the present day, and I no longer consider the lecture ridiculous. After all, we are navigating a pandemic that has increased our screen time and, for many of us, our sedentary behavior. We are worn out and ground down from restrictions, global illness, and death. For me, the monotony of quarantine, especially through the cold winter months, brewed an apathy that made the idea of time outside seem too effortful or uncomfortable.

As an adult this past winter—a parent and an employee one year into the pandemic—my enthusiasm for the outdoors froze. My boys, too, started to fight me on going outside. Their curiosity and energy dulled. Too tired to stand firm, I would sit with them and watch The Never Ending Story or Captain Underpants for the umpteenth time. The greyness of winter pandemic life started to feel like a never-ending cycle of work, chores, and screen time.

Then spring hit. The days stretched longer and felt brighter. The trees started to come alive, and I felt like wearing pants with buttons for the first time in a while. My boys, not so much. They were still trapped in the brain fog of remote learning and social isolation. They were suffering from Nature-Deficit Disorder. The only prescription? More cowbell. Apologies, that’s not right. The only prescription? More time outside.

Richard Louv coined the term nature deficit disorder in his international bestseller from 2005, Last Child In the Woods, where he writes that “the child in nature is an endangered species, and the health of children and the health of the Earth are inseparable.” In his more recent book, Vitamin N: 500 ways to Enrich the Health & Happiness of Your Family & Community, Louv suggests that pediatricians across the country are now writing park prescriptions. The science is clear: time in nature is as important as eating a balanced diet and sleeping well. As Louv explains, experiences in the natural world boost the immune system, stimulate learning and creativity, and serve as a buffer to depression and anxiety. Confirmed by our optometrist at a recent eye exam, time in nature can even improve myopia.

So my family took a page from Louv’s book: we set up a rule that we had to spend 30 minutes engaged in movement outside every day, rain or shine. I would be a liar if I told you we accomplished this goal every day. In fact, I resorted to peppering in a few behavior analytic interventions (see: Premack Principle) to buoy the effort and enthusiasm. But it has gotten easier, and we are all feeling less ‘blah.’ We plan one big activity every weekend—a hike, a long bike ride, or a yard project. Pokémon Go city hikes are a favorite. We also use an app that identifies trees, and we dusted off our bug vacuum just in time for the Brood X cicada season.

On this Earth Day, start to think about how much time you spend outside, and how much time your kids spend outside. I would be a hypocrite to stand on this organic fair-trade soap box and tell you to limit your environmental impact by removing meat from your diet or to stop purchasing single use plastic. A conservation mindset is important, but you have to take care of yourself to take care of others (and the world). You can skip the Birkenstocks and tree hugging—and just spend some time outside. Get some Vitamin N (nature). It is rough out there, but I promise, sunshine and fresh air will make you feel better.

 

Want to know how nature can help your child or teen with autism? Browse these stories and studies:

“Exposure to Nature for Children with Autism Spectrum Disorder: Benefits, Caveats, and Barriers,” Health & Place, v. 55, 2019

“Nature as a Healer for Autistic Children,” Alexandria Engineering Journal, v. 58, 2019

“Vitality from Experiences in Nature and Contact with Animals—A Way to Develop Joint Attention and Social Engagement in Children with Autism?” International Journal of Environmental Research and Public Health, 2019

“Kids with Autism Benefit from Outdoor Classroom,” Toronto Star, 2013

 

Looking for tips on integrating nature into your autistic child or teen’s life? Consider these ideas:

“Time Outside: Ideas for Families,” LEARN Behavioral, 2020

“Tips for Playing Outside, and Why Children with Autism Benefit from Outdoor Play,” Marcus Autism Center

“Learning Opportunities in Nature: How Discovering Nature Benefits Children with Autism,” Marcus Autism Center

“Playing Outdoors: Building Skills, Exploring and Creating Memories for Those with ASD,” Autism Awareness Centre Inc., 2020.

Last fall, when Xavier DeGroat received an opportunity to work at the White House as an intern in the Office of Presidential Correspondence, he packed his bags at his home in Lansing, Michigan, and relocated for three months to the thriving metropolis and national capitol of Washington, D.C. Only Washington, D.C., wasn’t the usual hub-bub of activity. Under lockdown due to COVID-19, an eerie quiet fell over the city—a quiet, intermixed with the frenetic anxiety of the 59^th presidential election and the departure of then-President Trump.

Still, Xavier welcomed the chance to serve his country and work in the White House. Recently, LEARN talked to Xavier about his experience in Washington, his work for the autism community, and his thoughts, as an adult with autism, about some of the community’s most pressing issues.

Q: Tell us, Xavier, about your experience as a White House intern.

A: From September to December in 2020, I lived in D.C. It was a wonderful experience that gave me a lot of networking opportunities, which is great for my advocacy work with my foundation, the Xavier DeGroat Autism Foundation. Of course, it was a turbulent time, with the presidential election and COVID. Security was a major issue, but I had a job to do. In the Presidential Correspondence Office, I checked the mail and the endless letters coming to the president—there were letters about issues relating to stimulus checks, letters of sympathy for the death of Robert Trump, the president’s brother, and a mix of critical and supportive letters for the president, too.

I had met President Trump the previous year, in the Oval Office, when I had a chance to speak with him about matters related to the Department of Homeland Security and the police force. You see, sensory overload anxiety can be triggered easily in people with autism at airport checkpoints, which are full of crowds, noises, and bright, flashing lights. So, I was there to talk about the TSA regulations that need changing, in addition to regulations about restraining people with autism and disabilities. The meeting was supposed to be only five minutes long, but I was there for a full half hour. “Do you mind if I call you X man?” President Trump asked me. He was really friendly and personable.

Q: That sounds like an amazing experience. Now that you’re back in Michigan, what are you working on now with your foundation?

Right now, I’m devoting time to fundraising. I’ve realized over the years that without money, we can’t do much. I also have some events coming up next spring in Ann Arbor, Michigan. I’m a big sports fan and love the idea of sensory rooms at stadiums. Jim Harbaugh, head coach of the University of Michigan’s football team, will be part of the initiative, along with his brother John Harbaugh, head coach of the Baltimore Ravens.

Soon, I’m going to the Oval Office to speak with Joe Biden and Kamala Harris about health insurance, and how hard it is for people with autism who can’t work to afford insurance.

I’m also publishing a book about my experiences.

Q: What, specifically, is your book about?

A: It’s a memoir about my life. I have a long story full of challenges that I eventually overcame—I hope I can inspire other people. I was diagnosed with autism at age 4, though originally told I had ADHD and given Ritalin. Later, they realized I had some sensitivities and anxiety and told my parents I have Asperger’s syndrome. I also had epilepsy, which was more concerning than autism for my family because of the health risk.

In school as a kid, I was labeled with “the R word” and had a hard time understanding or using sarcasm, nuance, and what I call “gray language skills.” I took things literally, like many people with autism. This would lead me to use the wrong word, miscommunicate, or struggle to conceptualize conversations. Ultimately, it led me to get bullied at school.

I spent a lot of time during my childhood at home and alone. I didn’t get the resources I needed, and school was overstimulating. I wanted an in-between, where I could have family around to support me and activities to keep my mind and body in shape. Things like LEGOS and puzzles calmed me.

High school was the most challenging time. I dropped out of school in 11^th grade for about three months when the bullying became especially bad. Kids were immature or disrespectful. I couldn’t cope, and even some of my teachers didn’t understand me. They tried to give me accommodations, like extra time on assignments, but my problem was really with the whole environment. My dad helped me find a summer school program, which allowed me to catch up and still earn my diploma the next year.

Around that time, when I turned 17, the doctors did some tests and realized I didn’t have epilepsy anymore. This was truly enriching. I was able to get my driver’s license and start driving a few years later, after everyone knew it was safe. I could go anywhere I wanted, on my own timeframe. That was a real turning point.

Now, I’m doing some groundbreaking things and devoting my life to helping people with autism.

Q: That’s an inspirational story that many people, autistic or not, would love to read. What are some things you wish people understood about living with autism?

A: Children with autism need to be themselves. They need time to touch things or even rip things and make a mess. They’re not staring off into space or exploring aimlessly or because they’re just wanderers—they’re doing it because they’re curious and trying to make sense of the world and figure things out. They need space to think and ask questions, and some schools just aren’t the right environment for that because they focus too much on being on time and doing everything within a certain time period.

I think neurotypical people can learn a lot from neurodiverse people if they take the time. In fact, I don’t like to think of autism as a disability because it’s really about neurodiversity. If you look at an autistic’s neurodiversity, you might see that certain skills can be even more accelerated than a person without autism.

I would also advise people not to get anxious when an autistic is quiet. Some are introverts. They keep to themselves, and that’s OK.

Q: After listening to some of the conversations about Autism Awareness versus Autism Acceptance Month, our organization, LEARN, decided to embrace acceptance, without losing sight of awareness. Do you have any thoughts on that conversation?

A: I like the change to acceptance, as long as we realize that without awareness, there can be no acceptance. It’s takes about 99 percent awareness to have one percent of acceptance. It all starts with education. We can’t force people to accept something they don’t understand. As the late Congressman John Lewis once told me, everybody is aware that I’m Black, but that doesn’t mean they accept me. So, yes, acceptance is the greater goal.

Unlike some autism activists, I don’t get too hung up on language. It’s more about how the person treats me than whether they call me “autistic” or a “person with autism.” Some people might prefer one to another, sort of like some people preferring “Black” to “African American.” It really just depends.

Q: You’ve created an impressive platform for your advocacy work. Who inspired you along the way?

A: My parents inspired me. I know I cost them a lot of money growing up, and sometimes I feel ashamed of that. But they also said to me: “We want you to be successful. We want you to be independent.” They set those goals for me, and that helped.

I don’t have a bachelor’s degree yet, but I’m looking at finishing college. I want to earn a degree, but I think I’ve had great life experiences that add up to more than a degree, probably. Nikola Tesla didn’t go to college but became who he is today through hard work and effort. He definitely inspires me.

Temple Grandin, the scientist and activist, also inspires me. She’s a friend of mine and has told me: “You have a mission to do something specific with your life, and you’re doing it. You’ve pulled yourself up and earned it.” She’s all-generational in her advocacy and believes that it’s not so much words that matter. It’s how you use them. That’s why I have a problem with some of today’s activities—they sometimes go a little too far. I consider myself more middle of the line.

As a child, I wanted to be an astronomer. Later, when I met Stephen Hawking, he encouraged me to get out there and explore, which is what scientists do. He said I didn’t have to be a paid scientist at NASA to think and act like a scientist—I could be an amateur scientist and use that mindset in my life. He said that when people with autism ask questions—How big is the sky? How big is the universe?—maybe they’re interested in learning things. They’re not being annoying. They actually want to figure things out.

When Evie Mutsch, at age two-and-a-half, started applied behavior analysis (ABA) therapy at the Wisconsin Early Autism Project (WEAP), she spoke no words and tended to express herself in tantrums, her mom, Kelly, says. Today, however, at age 10 and a half, words pour from her mouth as she talks about the intricacies of the animal kingdom, her work co-running an eco-friendly clothing business with her mom, and her fascination with United States history, particularly the events surrounding the Revolutionary War and westward expansion.

Recently, our team at LEARN talked through Zoom with Evie and Kelly about what it’s like to run a business, Eco Evie, at such a young age. Eco Evie makes garments for kids and women made entirely from recycled water bottles—each shirt, for instance, comes from 11 to 16 water bottles—and donates a portion of each sale to endangered animal conservation efforts. The brightly colored tank tops, hoodies, tops, and dresses feature such animals as the Amur leopard, black rhinoceros, monarch butterfly, pangolin, and sea turtle. Here’s a recap of our conversation.

Q: Evie, we looked at your website and watched the CBS news story about your business. Wow—we are impressed! What does it feel like to have your own business as a fifth grader?

A (Evie): It’s both strange and wonderful. Sometimes I have to remind myself that I already have a career. I’m a child who has a career already. It’s hard to believe. What will I do with the rest of my life?

Q: How did you get interested in endangered animals?

A (Evie): It maybe started after I finished 4K [kindergarten]. Before that time, I wanted to be an astronaut and was really interested in outer space. I’d always liked animals but started to learn more about endangered animals and how much they need our help.

A (Kelly): We live five minutes from the Milwaukee Zoo and have been going there forever. One day, Evie looked up at the endangered animals sign and asked, “What does this sign mean?” She was in first or second grade, and she turned to me and said, “We need to help the sea animals because they can’t speak, and can’t help themselves.” This was a huge turning point for us, unleashing a side of Evie I hadn’t seen before. We started making and selling bracelets with the little colorful rubber bands, Rainbow Loom bracelets. We sold them everywhere—in the neighborhood, at school, at the park—and then one day Evie turned to me and said: “We can’t just make bracelets all the time! What else can we do to help the animals?” From day one, she was business-minded about helping animals.

Q: That’s a great story. How, then, did you decide to make eco-friendly clothing?

A (Kelly): Well, I knew that whatever Evie picked, she was going to do something significant with it—she was that committed—and we started thinking about what we might do together. I studied fashion design in college and worked for the corporate offices of Kohl’s and Bon-Ton, focusing on children’s clothes. So, I knew something about the industry and how to make clothing. After a number of conversations, we made the decision to focus on clothing—clothing made from recycled materials and manufactured fully in the United States.

Q: It sounds like the recycling part of the business model, then, just made sense. You were helping animals—you also wanted to help the earth, which would, in turn, help animals. Tell me about the recycling part? What is your clothing made of, and how do you source your materials?

A (Evie): Our clothes are made entirely from plastic water bottles. If you can believe it, I’m wearing a bunch of plastic—but it’s soft and not scratchy.

A (Kelly): We put a lot of thought into where we get the materials and manufacture the clothing. If you look at the tags of most of the clothing we wear, nearly all of it is made overseas, which requires a lot of fuel for transportation and shipping. We didn’t want that and found a company in Yadkinville, North Carolina, that can turn recycled plastic into yarn, creating a product called Repreve. From there, a mill nearby turns the yarn into fabric, and then we do all the printing, cutting, and sewing here in the Milwaukee area.

We only make what we sell, so we don’t make extra. We minimize waste.

Q: What a feat of engineering and planning. Tell us, Evie, what endangered animal interests you most, and what additional animals would you like to raise awareness and money for through your clothing?

A (Evie): I like them all. Baby sea turtles are interesting. Not many make it to the sea because, when they’re born, they confuse the artificial lights of the city with moonlight and go in the wrong direction. Artificial light is a big problem.

We’re thinking about choosing elephants and manatees [for our next projects] because they’re starting to become endangered. Manatees are called “sea cows”—they eat so much food! They’re not carnivores, and they eat three whole bathtubs full of food, like plants and leaves, every single day. But boat engines are harming the plants they need to survive.

This week, they listed the second species of African elephants as endangered. These elephants don’t have the long neck adaptation that giraffes have to get leaves, so they use their tusks to scrape leaves off of tall trees.

A (Kelly): Yes, choosing what animal to do next is serious business in our family. You can imagine our discussions over dinner!

Q: Evie, when you’re not learning about endangered animals and working on the clothing business, what do you like to do?

A (Evie): I like to read, especially Tui T. Sutherland’s Wing of Fire series. I also read graphic novels, like anything by Raina Telgemeier. In Ghosts, a girl moves to Northern California, where the sun only shines for 62 days a year. Later on, she discovers her home isn’t like other homes. It’s a mansion on a hill, and then there’s a ghost who likes orange soda. A ghost who likes orange soda—if you can imagine that. It’s unbelievable!

A (Kelly): Recently, you read an entire book on U.S. history.

A (Evie): Science used to be my favorite subject in school, but then Ms. Johnson, my fifth-grade teacher, introduced the Revolutionary War and showed us a series of videos called Liberty about a group of boys who were Loyalists going to New York. I can tell you—I would not be on the Loyalists side because I wouldn’t want to be taxed! It’s hilarious that King George thought he could get away with that. At the end of one of the videos, George Washington declined being king and said: “I was a general. I will leave as a citizen.”

The Homestead Act was later but before the Civil War, and before the U.S. government unlocked the frontier. Part of it belonged to France, but France didn’t have enough money, and the U.S. paid what would be considered a huge amount of money today. Then Lewis and Clark explored the west with the help of Sacagewea. That’s when the Homestead Act started.

Q: You know a lot about U.S. history, Evie. That is wonderful. Kelly, before we leave, I wonder if you can talk some about how the business has helped both you and Evie in your journey with autism.

A (Kelly): After everything we went through with Evie, with more than three years of intensive therapy, I had said, wow, if Evie ever asks for anything within reason, I would do it—no questions asked.  And she wanted to start a business to help animals, so I said yes. My hope for her with this business is that she can work on her communication skills. I’d love for her to get some business experience and skills as she gets older that can help her throughout life.  She’s part of nearly every decision, coming up with what we share about each animal on the website and choosing the animals and information featured in our coloring activities for kids.

As for our journey, we feel so fortunate. The first few years were really rough, with Evie being non-verbal and prone to screaming and rolling around on the floor when she was frustrated. I also felt hopeless and didn’t know what the future would hold for us. At that time, I wished I had a 10-year-old Evie to watch and see how far she has come, and how well she is doing now. That’s another part of the reason we’re doing this—we want families with autism to know we’ve been in your spot, and it’s going to be OK.

The other day, a woman who saw our news story, and whose grandson was diagnosed recently with autism, told me how much our story helped her. If I can help or inspire even one person, then it’s totally worth it.

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.