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Xavier DeGroat Shares His White House Experience and Life with Autism

April 21, 2021 by trellisservice

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 59th 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 11th 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.

Filed Under: Blog

Spotlight on Black Professionals in ABA: Maia Jackson

April 27, 2021 by trellisservice

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.

Filed Under: Blog

Create a Calm-Down Kit for Your Child with Autism

May 5, 2021 by trellisservice

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.

Filed Under: Blog

A Special Mother’s Day Interview with Becky Schoenfeldt

May 6, 2021 by trellisservice

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 6th 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.

Filed Under: Blog

Understanding the Evolution of ABA

May 11, 2021 by trellisservice

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.

Liltle Preschooler Kid Playing With Wood Blocks And Teacher Educ

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
B.F._Skinner
Dr. B.F. Skinner (Msanders nti, CC BY-SA 4.0 via Wikimedia Commons)

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.

Mother And Young Son Playing With Wooden Toy At Home
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.

Filed Under: Blog

Christian Tsetsos Shares Stories from His Life on the Spectrum

May 14, 2021 by trellisservice

Christian Tsetsos works as an insurance authorization coordinator for the head office of LEARN’s Behavioral Concepts (BCI) in Worcester, Massachusetts, while serving, on the side, as a neurodiversity advocate and Asperger’s/autism speaker. He joined us recently to share stories from his professional and personal life with autism, delving into everything from his life growing up and struggling to make friends to his experience using dating apps and revealing autism to suitors. Here, we offer a recap of the conversation.

Q: You’ve worked for BCI now for 14 years. Tell us about your job there? What aspects of your work do you enjoy?

A: I started working part-time for BCI my last year of high school and continued as an administrative assistant at the main office, while attending college at Worcester State University. I majored in urban studies and realized I liked the human and social services side of the field. Urban studies is an interdisciplinary major that weaves in government, city systems, sociology, and even art, engineering, and psychology. So, my job at BCI involves interacting with and helping people get the services they need.

I liked my work at BCI and the safe space it gave me to develop my social and professional skills, so I stayed on to take a full-time position in 2014, after graduating from college. This was around the time that insurance policies started covering more ABA services. The company was expanding and transitioning from only providing services through school contracts to offering services in client’s homes and in clinics. To this day, I work in BCI’s first clinic.

Over the years, I’ve worked in a number of jobs at BCI—answering phone calls as a receptionist at the front desk, screening candidates for behavior techs as a human resources assistant, supporting recruiting and talking to prospective applicants at career fairs, and coordinating the intake and insurance authorization processes. I like what I do now, in the insurance side of the business, because I’m detail-oriented. Authorizations involve a ton of rules and policies and limits. Remembering and tracking endless details isn’t for everyone, but it’s something I’m good at and enjoy.

What I like most about my role, though, is the human interaction—for instance, I like helping behavior analysts when they don’t remember a particular insurance code. I like feeling needed and being part of a collaborative team.

Q: You also go to colleges and other places to talk about autism and ABA. Tell us about that experience—and how you developed the skills and confidence to put yourself out there and speak in front of crowds.

A: The man who founded BCI, Dr. Jeff Robinson, had been my mentor for many years. In fact, he’s the one who hired me at age 17 and opened the door to my career path. He worked in schools and wanted someone to speak at community colleges about the differences between high school and college—and the kinds of support available for kids with autism and other special needs. I ended up taking part in that event, which led to the Asperger/Autism Network inviting me to do a 45-minute stand-up talk in front of 50 or so K-12 educators. This was a big deal for me, and I felt both open to it and anxious.

I remember, as I stood in front of that crowd, hearing myself talking without really seeing the audience. I focused on delivering the information and probably looked frozen and stiff. Over time, I became more comfortable and got invited back to talk about my own experiences in the K-12 education system as an individual on the spectrum. I talked about various challenges, interventions that made a difference—that sort of thing. Recently, I gave a talk to a group of grandparents about what they might do to support their grandkids on the spectrum.

Q: Public speaking can be a scary experience, but you overcame your fear. What are some of the things you share, in your talks, about growing up on the spectrum?

A: I talk a lot about the social aspects of school, and how, in elementary school, my teachers knew me and understood how to support me. They even helped me make friends. But my middle school was much larger, and I didn’t know my teachers or classmates as well. I felt disconnected. My differences became more obvious to my peers, and I eventually fell into a deep depression, partly because I didn’t have friends and started struggling academically—everything was overwhelming.

Some teachers treated me like the problems were my fault. They didn’t understand that someone with autism could be smart but still have certain challenges. I have a normal IQ, which meant I didn’t qualify for many services. At the time, people tended to look at the issue in black and white terms, without understanding that someone could have a normal IQ but still have anxiety and problems with executive functioning. It was really a lack of understanding and awareness about autism. My mom advocated for me but often ran into the school saying things like, “Well, according to the law, we don’t have to accommodate that.”

As my depression worsened, my mom kicked into full advocacy mode and started figuring out how to navigate the system. She created a system of supports that helped me get through school. She also hired Dr. Robinson as a consultant to help teachers realize I wasn’t making stuff up—that autism is a real condition that creates real challenges.

One of the big things Dr. Robinson did for me was to help my teachers become more compassionate. Of course, there are always people who can see that there is a need and intervene on their own. These people are naturally compassionate. But others need help getting there.

It’s sad, looking back, that I didn’t have a single friend when I graduated from high school. It’s also disturbing that the school was OK with that.

Q: Yes, that’s really sad and disturbing, and remarkable that you found your way to a far healthier, happier place. In your own words, why do you think you struggled to make friends, and how did you eventually start making friends?

A: I didn’t learn social skills in a class. I taught myself, but not until around age 20, when I enrolled in community college. I was lightyears behind my peers but started, around that time, to open my mind to the possibility of having friends. It dawned on me, however, that I had no idea how to go about it. This was a hard realization to make because, in general, society can be judgmental if people aren’t acting a certain way, especially a grown man who looks typical.

I started trying, on my own, to work on learning social skills by putting myself in different situations. I joined various college groups and had small conversations with people to see if the conversations went anywhere. But it took trial and error. For instance, I realized I was insulting people when I said things like, “If you want to do anything with your psych major, you’ll need to go to grad school.” I learned to take a step back and think through how that might come across as offensive.

Q: With your friends today—and even on the dating scene—do you come right out and tell people you have autism?

A: I don’t think a lot of people understand autism if they’re not affected by it. Sometimes, I’m hesitant to come out with it, though I know that telling might open the door to more understanding and compassion. At the same time, I know there’s a lot of misunderstanding about being on the spectrum. People tend to think of it as an intellectual disability, which automatically means I have a lower IQ, I can’t live on my own, I don’t have a job, and I don’t have a partner. That’s just not true.

I have most of those things, in fact. I’m single at the moment but have been on a long quest to find a partner. I went on a lot of dates last summer—really put myself out there. I’m gay and stay active, on and off, on some dating sites. I tend not to mention autism on the first date but do mention it later, and gauge the reaction. As a side note, I encounter plenty of people who are likely on the spectrum but don’t realize they’re on the spectrum—not necessarily on dates but just in general. It’s interesting.

Q: That is interesting. You’ve developed a heightened self-awareness that plenty of people lack. Aside from that, what are some advantages of being on the spectrum that most people don’t realize?

A: One positive is being able to remember certain facts and figures, like I can do in my job now, with the details of insurance rules and policies. As a kid, I would memorize what states border other states, and what towns border other towns. That’s a unique skill.

Q: What do you wish more people understood about autism?

A: People tend to think of autism as something far removed from their lives or something they only encounter on TV. In reality, autism is part of our society. I wish people could understand that there are many people out there in the world on the spectrum, in our everyday lives at work, college, everywhere. It helps to be aware of that and open-minded and accepting of those who come across as different.

I also think some people don’t want to be friends with someone with autism, and I wish that wasn’t the case. At one point in college, I was struggling academically and socially—it was obvious to the rest of the class, so I came out with my diagnosis. Instead of lending a hand, they didn’t know what to do and ended up avoiding me. I’ve had positive experiences, but it was disappointing that my classmates and my professor treated me like a nuisance. Having a teacher or classmate say, “We’re going to help you succeed,” could have done so much.

So, I would say that I wish people felt more comfortable talking about autism, instead of shying away or feeling afraid. What I really wanted, in that instance, is for people to open up and lend a hand.

Q: It really comes down to what you mentioned earlier about natural compassion, versus trained compassion. Is that fair to say?

A: Yes, it’s really about educating people in compassion. That’s what I try to do with my talks. Whether people have it naturally or need to be taught, compassion can go a long way.

Filed Under: Blog Tagged With: Autism Speaker, BCI, Behavioral Concepts, Life on the Spectrum, Neurodiversity Advocate, Public Speaking

Transitioning to Summer: 5 Tips to Make It a Success

May 28, 2021 by trellisservice

by Elizabeth Jeffrey-Arceneaux, M.S., BCBA
Autism Spectrum Therapies (AST), Louisiana

With summer fast approaching, the increased time for preferred activities may be a point for joy and satisfaction, but this can also challenge parents as they attempt to transition kids from necessary tasks and activities. Most children, particularly those with autism, benefit from structure and routine in their schedule.

One of the reasons summer can create a challenge is that routines shift dramatically—or disappear altogether. This is further exasperated by the changing protocols of the pandemic, where we wear masks and stand six feet apart one day, only to loosen the mask mandate and stand three feet apart the next.

There are things you can do, however, to ease this transition and keep your child engaged this summer. Consider these five tips:

Only Take On What You Can Manage

For starters, understand what will allow your child to thrive and what you, as a parent or caregiver, can manage. Professionally, I’ve spoken to many parents who feel tired and frustrated—mostly due to their tendency to take on more than they have the time and energy to manage.

While it’s important to provide opportunities for your child, be careful of overdoing it and creating stress for yourself—and the whole family. Strategize and play to your child’s strengths.

Prioritize Activities

To avoid taking on more than your family can handle, you first need to realize that you can’t do everything—and need to prioritize. Decide the three most important things to you, as a parent or caregiver who knows your child and family well, and plan around those goals. For example, your goals might be to increase education, family fun, and time outside.

With your top three priorities identified, seek out resources to meet those goals. For example, many states offer an extended school year (ESY) option for children with disabilities. This program varies across the United States but provides a way to maintain educational activities at no cost to parents and caregivers in the same school system your child normally attends. Another option might be increased therapy time.

Often, you can find fun things to do with your family by attending events in your city. Many cities, in fact, host particular days in which children with autism or sensory sensitivity are given priority. In Louisiana, where I live, zoos, libraries, and other places host sensory days. These can be a great introduction to new activities. It might take research and planning, but doing so can help your child and family cultivate a wider array of interests.

Spend Time Outdoors

As my colleague, Genevieve Marshall, recently discussed on our blog, time in nature is good for all of us, particularly kids with autism. In fact, many children with autism enjoy water play, which you can set up outdoors, even without access to a pool. Simply fill up bowls or an inflatable pool, and give your child a mix of cups and utensils to interact with water in various ways.

Kids Playing On Beach. Children Play At Sea.

I keep a running list of outdoor sensory activities for my own children that includes:

  • tinting water with food coloring
  • mixing water with sand
  • making mud pies
  • drawing with sidewalk chalk
  • collecting and painting rocks (or simply setting up an easel and paints outdoors)
  • blowing bubbles (and making homemade bubbles)
  • picking flowers or weeds

The list goes on. These activities engage children on a sensory level, while allowing kids to spend essential time outside.

Plan—But Plan Flexibly

Although it’s critical to plan as much as possible for summer, it’s also important to accept and expect that you will need to be flexible. Often, programs like ESY and accessible summer camps don’t last the entire day. You can fill in unstructured time by having a loose schedule in place anchored by sleep, snack, and highly preferred break activities. Consider, too, using a visual aid and timer as you transition between activities, and do your best to stay consistent (and flexible!) across days.

Acknowledge Differences

If you have more than one child, realize and expect that your children are different, and prepare accordingly. For example, I have two toddlers. My youngest, at age two, typically is a wild and reckless toddler who loves new things, fireworks, and getting dirty. At the beach, he holds his father’s hand and loves hearing the ocean and feeling it cover his feet. He doesn’t mind varied environments with different sounds and senses.

My oldest, now three, hates fireworks and covers her ears. All loud noises cause her distress, particularly when unexpected. She loves playing in the sand at the beach but cries that the ocean is too loud. She also hates and refuses to walk across reflective floors. Instead of forcing her to fall in line and like the same things her brother likes, I give her earphones and encourage her to enjoy things from afar. I accept and honor their differences.

As you gear up for what we anticipate will be a more relaxed, open summer than last year, due to the pandemic, keep in mind that planning, prioritizing, and concentrating on what matters most to you and your family are key. Remember, too, that your time and energy are limited. Resist the urge to overschedule your family, and know that downtime is good for us all.

For more tips on helping your child with transitions, read “Easing Your Child Back Into Life Post-Pandemic.”

Filed Under: Blog Tagged With: autism routines, autism tips, autism transitions, parent tips autism, summer routines

Sensory Processing Issues and Summer: Sand, Sweat, Fireworks … Oh, My!

June 23, 2021 by trellisservice

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

Families everywhere are chucking backpacks and school shoes to the back of the closet and getting ready for some fun in the sun. While other members of the family enjoy themselves during the quintessential summer activities, sensory-sensitive kids may feel overwhelmed and uncomfortable. How can you anticipate problems and find solutions ahead of time, so your entire family can make the most of the summer?

Smiling Black Lady Using Laptop And Map At Home, Planning Future

Planning and Preparation

Last-minute plans, like any schedule changes, can be disruptive to children with sensory processing disorders and issues, so planning is key. As you map out your summer, think about the types of activities everyone will enjoy and how you can make those with potential sensory triggers comfortable for your child.

Start by looking for sensory friendly events on your local events calendar. Many communities host special events or days for sensory-sensitive kids, such as performances at theaters without spotlights, blaring music, and crowds, or trips to shopping malls without the usual mob of consumers.

Other ways to plan and prepare in advance include:

  • Calling facilities ahead of time to find out what days and times are less crowded
  • Doing a sensory analysis of stimuli your child might encounter on an outing to pinpoint potential triggers (noise, crowds, smells)
  • Helping your child “practice” the sensory experience in advance (e.g., applying sunscreen to a small part of the body and increasing the amount daily until your child gets used to head-to-toe coverage)
  • Arranging an “out” for your sensory-sensitive child (e.g., creating a Plan B for your overstimulated child, in case Plan A doesn’t work)
Preteen Boy Chooses Clothes In The Wardrobe Closet At Home. Kid

Clothing

Clothing and sensory issues go far beyond tag removal. Summer clothing can make or break an outing.  The wrong clothes can be a source of irritation, but the right ones can offer protection from other sensations your child may not like.

If your child takes time to get used to wearing shorts and short-sleeved shirts, buy some long sleeves and pants in light, natural, breathable fabrics to ease the transition. Likewise, keep in mind these tips about swimsuits, which can cause all kinds of sensory-related problems:

  • Tight straps, elastic waists, tags, and ruffles can make swimsuits itchy and uncomfortable. Have your child try a variety of styles to discover the best fit.
  • Consider shorts-style suits for girls, which can avoid sand inside the suit from sitting.
  • Getting used to a wet suit can take time. Help your child grow accustomed to it by taking baths or showers in the suit ahead of your day at the pool, lake, or beach.

And don’t forget about shoes. The right shoes can help your child avoid the sensory discomfort of walking on sand, grass, and rocks. In addition, flip-flops can irritate some kids’ toes. For an alternative, look into plastic clogs, slides, or different types of water shoes.

Mother Applying Sunscreen Protection Creme On Cute Little Toddle

Sun

When spending time in the sun, make sure your child drinks enough water and takes some shade breaks, while watching out for signs of overheating. Also realize that sunglasses are a must for light-sensitive kids. In fact, if your budget permits, buy multiple cheap pairs at the beginning of the summer, so your child never goes without.

When it comes to sunscreen, know that it is essential but, just like bug spray, can be greasy, sticky, creamy. What can help?

  • Try out different types of sunscreen and bug spray to find what’s most acceptable to your child, including sprays, wipes, and unscented versions.
  • Consider using a color-fading sunscreen, too, which fades in color as the lotion is absorbed—and disappears when your child is protected from and ready for the sun.
  • If your child finds pressure relaxing, use the application of sunscreen as an opportunity for a massage.
  • When bug spray is necessary, find a combination bug-spray/sunscreen so only one application is necessary. Alternatively, you can apply bug spray to their clothing before they put it on.
Kids Playing On Beach. Children Play At Sea.

Water Fun – Beaches and Pools

Most children love to get in the water. Some of the sensory experiences that go along with it, like sand and chlorine, are less welcome. Protect your child’s beach towel from sand by placing it in the center of a fitted bedsheet with weights on each corner. Also apply sunscreen before getting to the beach to avoid sticky sand that won’t come off. To remove sand from skin quickly, rub a little baby powder on the area.

Chlorine in pools can be another problem for kids with sensory sensitivities. Nose plugs and goggles that cover the nose can help with the smell. If your child has chlorine-sensitive skin, consider a salt-water pool—or, if possible, stick to lake and ocean excursions. And, of course, remember to take extra precautions to help your child stay safe around water and while swimming.

Little Cute Adorable Happy Caucasian Toddler Boy Sitting In Chil

Parties, Parades, and Car Trips

If parties, parades, and car trips are on your agenda this summer, you’ll want to plan ahead as much as possible to deal with the stimulation. Noise-cancelling headphones can be a life-saver not only in the car but also at parades, fireworks displays, and in many other situations. If your child gets carsick, avoid the rear seats of busses and backward-facing seats, and keep ginger candy on hand (real ginger, not ginger-flavored) to ease nausea.

With summer, of course, comes pesky bugs like mosquitoes and gnats. Carry along an anti-itch stick or cream, in addition to band-aids to cover bites. No one likes to feel itchy, and for sensory-sensitive kids, itchiness and the urge to scratch can feel even worse.

Having an overresponsive sensory system does not mean that summer activities must be missed. With a thoughtful plan that includes carefully-selected activities and the right supports, your entire family can get some rest and relaxation—and enjoy a delightful summer and school break.

For more tips on making the most of summer, read “Transitioning to Summer: 5 Tips to Make It a Success.” And if you’re looking for an autism provider with the ability to tailor treatment to the unique needs of your child, reach out to us at 1.877.576.4824, or fill out and submit our form.   

Filed Under: Blog Tagged With: autism parenting tips

How to Help Your Child Through a Meltdown

November 10, 2021 by trellisservice Leave a Comment

by Bradley Ross, M.A., BCBA, LBA
Assistant Clinical Director, LEARN/AST, Louisiana

There is no “one-plan-fits-all” approach for handling meltdowns. When children with autism hit sensory overload, their reactions can be intense, and knowing how to respond thoughtfully in the heat of the moment can be challenging.  

Unfortunately, there is no magic wand to make meltdowns go away. But there are tactics and strategies to help tame a meltdown when your child feels overwhelmed. The key is to stay calm and work your way through it.

Assessing the Situation, Identifying the Triggers

One thing that can help is to understand the reason for the meltdown, while recognizing that reasons can vary greatly from child to child. For instance, your child may not want to do certain tasks. They may be nervous about school. They may get embarrassed about underperforming, when compared to peers. Or they may struggle with separation from mom or dad.

Some kids have meltdowns because of environmental factors like room temperature, new students, or how the desks are set up in the classroom. Even small changes in the environment can lead to lead to intense feelings—rearranging furniture, for instance. Take note of the time and place of the meltdown and factors that might be overwhelming. Once you identify the trigger, you can see if there is a way to avoid it.

If your child can have conversations, try to discuss and get to the root of the problem. This can also help you identify patterns of behaviors to address. If your child is unable to have a conversation or communicate verbally, pay attention to other communication cues to try to better understand the problem.

Knowing the cause of the behavior isn’t mandatory, but it is helpful in knowing how to address it. In some cases, you can eliminate the trigger. Other times, you just have to wait it out and  give your child space to rest and recover.

Home-Based Strategies

One way to make your expectations clear is to create a token/reward system at home. For example, you can create a chart on which you and your child come up with and list desired behaviors. Use pictures instead of words if it helps your child understand your expectations. Talk out loud about your goals and the rewards your child can expect for meeting those goals. Remember: the rewards don’t always have to be tangible items like a pack of gummies or a cup of hot chocolate. Rewards can also be experiential, such as playing a special game before bed, reading a favorite book, or baking a tasty treat together.

As you work with your child to create your list or chart of behavior goals, consider these possibilities:

  • Turn-taking: Here, you can explain that you and your child are going to sit down and play with toys. After a minute, ask your child for a turn with their toy. If your child gives you a turn, they can earn a token/reward.  

  • Sportsmanship: Play a game with your child. Ask them if they want you to let them win the first game. During the second game, let them know you’re going to try to win. Tell them that if you win, and they tell you “good game,” while keeping a happy face, they will earn a token/reward.

  • Doing work: Let your child know that in two minutes, you’re going to ask them to pick up their crayons. If they pick them up quickly, they can earn a token/reward.

Start with easy goals. Over time, you can provide less warning and make these more natural,  everyday interactions.

Understanding What Happens at School

Targeting meltdowns at school can be more difficult since you aren’t there. If your school has a reporting system to give you a sense of your child’s behavior each day, that can help you measure progress.

For example, some schools use a color scale: green equals good behavior; yellow is slightly disruptive; and red is a meltdown. If your school does not have a behavior reporting system and you think your child could use one, talk to your child’s teacher.

You could include behavior reports from the school in your token/reward system at home—or even set up a separate system based on these reports. For example, a green mark at school could equal an hour of TV time or three tokens, while a yellow mark could equal 30 minutes of TV or two tokens, and a red mark could equal 15 minutes of TV or one token.

You’re probably wondering, “Why reward a red score?” The reason is to reward your child for the positive behavior—bringing home the report—and to avoid taking away everything. For instance, if they think they will lose every privilege, this can increase the chance of a meltdown at school. Remember that you’re creating a reward system, not a punishment system. Focus on reinforcing positive behaviors, without being too harsh when there is a meltdown.

Also realize that reports you receive from school—or from your child or from your own observations, for that matter—are not a complete representation of the situation. Typically, a number of factors contribute to the situation, and behaviors that happen at school (or anywhere else, such as at the doctor or on the playground) can change according to the environment. Be careful not to make assumptions about solutions that may not work in every environment.

Stick to Your Rules, Celebrate Small Victories

Once you set the rules, stick to them. Avoid bartering. This system holds your child accountable and can begin with goals that are easy to reach. Accept that kids will make mistakes and that all kids engage in meltdowns from time to time. Remember to stay calm and keep your cool—these are key to addressing your child’s behavior successfully.


Start with small goals and set realistic expectations—the first one being: your child’s meltdowns will not stop at once. This is a process that will happen slowly over time. Track your progress, and celebrate the little victories when your child reaches behavior goals.

Looking for more strategies on raising kids with autism? Learn how a “calm down kit” can help your child through the hectic holiday season.

Filed Under: Blog Tagged With: Autism meltdown strategies, Autism meltdowns, Calm down kit, Stay calm and carry on, Taming meltdowns

Autism and Siblings: Tips to Help Your Neurodivergent and Neurotypical Kids Get Along

November 5, 2021 by trellisservice

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

All sibling relationships have their ups and downs. Siblings are our first friends, our childhood tormentors, and our longest-lasting connection. With a shared childhood, siblings can often understand each other better than anyone—including how to push each other’s buttons!

These hallmark features of sibling relationships remain true when siblings have different neurological profiles—for instance, when one is autistic and the other not. But there can be additional complexities that make fostering a healthy sibling relationship a bit more work. Here are some tips for nurturing a loving, supportive relationship between your children, when one is autistic, and the other is not.

Use attention-prevention.

Ease the inevitable sibling jealousies by carving out one-on-one time for each child. Neurotypical children may feel unseen as troupes of family members and specialists focus on their autistic sibling.  Special “dates” in which they’re the center of attention can help. But you’ll want to carve out intentional time with your autistic child, too—time not spent shuttling to therapies, teaching, or managing behavior but simply engaging and enjoying. If possible, set aside time once a week, but don’t abandon the idea if that’s too ambitious. Just make it monthly or even quarterly.

Be open about their differences.

Staying away from the subject of differences can inadvertently send the message that it is taboo or shameful. Instead, take a step toward a deeper mutual understanding by sharing age-appropriate information with your children about how they think differently. Perspective-taking can be difficult for all children, particularly those who are very young and those with autism. Siblings can offer a rich mine of learning opportunities to build skills in asking for and listening to another’s point of view. Talk about emotions openly and often to teach your kids the range of reactions individuals can have to the same event.  Also build a history of open communication, in which your children can come to you with their questions and worries.

Listen, listen, listen.

Let’s be honest—even adults can have difficulty connecting with other people whose brains work in different ways than theirs do. Children need a hefty amount of patience and understanding to learn how to love, care for, and enjoy someone who has a different experience of the world. As negative emotions like jealousy and resentment come up, don’t try to talk them out of them. Listen closely, and validate their feelings before you try to solve anything. Your autistic child may communicate their hurts and disappointments in their own unique way, so “listening” may look different across children. Whatever the case, as you learn to recognize the ways your autistic child communicates, pass on this information to their siblings, to build more understanding among your kids.

Share positive experiences.

One key to establishing a strong relationship is to share positive experiences. This can be tricky if you have kids with vastly different interests, sensory preferences, or abilities. Don’t get stuck in old-fashioned thinking that family togetherness only means board games or sports. Instead, find new ways for siblings to play together. One way to expand everyone’s palate for fun is to have regular family time in which each person takes turns determining the activity. In its simplest form, this shows your children how much you value your time together and respect each family member’s interests, even when you don’t share them. When your kids are ready for it, you can use this as a perspective-taking lesson about considering what others will enjoy.

Assist with conflicts.

When you’re trying to foster a healthy sibling relationship, advice from others is often to “let them work it out on their own.” However, if your kids have different neurological profiles, you may need to help your children build skills to problem-solve their conflicts first. You can prevent physical tussles and diffuse situations before they escalate by teaching them to separate from one another to calm down. To prepare, have them practice going to separate “calm-down spots” during conflict-free times. While this method will help in the short-term, to support conflict resolution long-term, seek to learn each child’s methods of communicating, and help them grow those skills so they can use them to express their needs—and better understand each other.

Seek out similarities.

Although differences among our children may be huge, look for commonalities, and mention them often. Do both of your kids like ice cream or have the same kissable cheeks? Emphasize the similarities, particularly when they involve a shared goal, such as not wanting to go to bed or clean their room. After all, siblings are rarely closer than those shared moments of ganging up on their parents! Even a tense moment in the family can be an opportunity to point out that they’re on the same team.

Parenting multiple children is a stressful endeavor, and when siblings are different, it can feel easier to just let them do things separately. But siblings will be in each other’s lives for longer than most other friends and family, so this is a relationship worth investing time in right from the beginning. A healthy sibling relationship can be a lifelong source of comfort and support—and this is something we want for all of our children.

Looking for the latest on bringing up kids with ASD? Listen to our “10 Top-Performing Podcast Episodes About Autism.”

Filed Under: Blog Tagged With: ASD and siblings, autism sibling support, family tips autism, neurodiversity autism, parenting autism, sibling rivalry

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