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One Dad’s Story: Giving Back Helped My Family Heal

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Steve Olson’s day once started with an hour-long commute through the traffic-laden corridors of Silicon Valley, followed by long, intense hours at a high-stress job he did not even like.

Today, however, Steve lives an altogether different life. He’s a single father to his teenage daughters, Madeline and Addison; a volunteer with local nonprofits serving people with disabilities and special needs; and a community liaison for LEARN Behavioral, where he builds and fosters partnerships to help kids with autism.

In a recent interview in honor of Father’s Day, Steve shares how his family overcame heartache and sorrow caused by tragic losses—and their journey to a new start in Arizona.

Q: Let’s start with your story, Steve. Your family has experienced significant loss. Tell us about that.

A: We certainly have.

On March 2, 2012, I held the hand of my wife and best friend, Sandra, as she took her last breath. When Sandra lost her short, six-month battle to brain cancer, I knew at that moment that my world would forever change. I never thought I’d find true happiness again.

At the time, I was living in San Jose, California, with my two daughters, Madeline and Addison. We were still recovering from the tragic loss of my first wife, my daughters’ biological mother, Erika, who passed away in 2009 from a car accident.

Life was not turning out how I had envisioned. My daughters had lost both their biological mother and step-mom in the timespan of a few years.

Q: That is a lot for anyone, let alone two young girls. After your wife’s death, how were you able to cope?

A: Initially, I was blessed to have my parents help taking care of the girls. However, both my parents eventually passed away, too—my mom from breast cancer and my dad from a strange and tragic fall into a swimming pool. The timing of it all was terrible, not that the timing of any death is ever good. While this was happening, I did my best to hold things together at home and on the work front. I could somewhat distract myself at work, as I attempted to maintain a successful career in business development, but in all honesty, when I look back on that time period, I know I wasn’t the nicest person in the office or fully present at home for my daughters. I was in a severe grief-induced depression, simply going through the motions but not fully present for anyone.

Internally, I felt like I was failing on all fronts.

Q: What happened next?

A: Something needed to change. My girls and I needed a new start, so we decided, as a family, to relocate to Tempe, Arizona, in June 2018. That decision to leave behind our friends, and my high-paying, Silicon Valley job to take a self-imposed, year-long sabbatical—that decision was based entirely on putting our family first. The decision didn’t come easily, but looking back, it was the best thing that could have happened to us.

Q: What, in particular, made it the right choice?

A: In San Jose, the long hours and continuous stress were affecting all aspects of my life negatively. My girls knew I was still unhappy and welcomed the new start themselves. We didn’t know anyone in Arizona, but Tempe is home to the main campus of Arizona State University (ASU), a school both girls were open to attending. Plus, close to Tempe is Mesa, Arizona, the spring training home of my favorite baseball team, the Chicago Cubs. As an avid fan, I’d visited Mesa several times over the years, including with the girls, to attend baseball games. We loved the area.

A few months after arriving in our new home, we found the Miracle League of Arizona, a local nonprofit that provides baseball programming to individuals with special needs and disabilities. As a family, we started volunteering our time, helping individuals with physical and cognitive challenges get a chance to play baseball.

Q: Can you tell us more about the Miracle League of Arizona, and how it helped your family?
Miracle League of Arizona

A: The Miracle League of Arizona combined several of my life’s passions: time with my daughters, baseball, and helping others. I later accepted a fulltime position at that nonprofit, making a significant financial sacrifice but finding myself far better off in terms of my happiness.

Over time, we realized how much the act of giving back helped us heal from the tragedies we’d experienced. By giving up only a couple of hours of our time per week, we started to feel joy again as a family, while joining an amazing community in the process.

Another thing I discovered, as I worked with and learned more about individuals with special needs, is that I’m the one with the disability. I’m the one worrying about the future or stuck in the past. Individuals with developmental disabilities, including autism, tend to live more in the present. They tend to have a more positive mindset and be fundamentally happy, especially when someone shows them love.

Q: That’s a great insight, which, I imagine, influenced your choice to keep working with the special needs community. How else have you stayed involved?

A: I was asked to join the Board of Directors for two nonprofits, Mikey’s League and Pawsitive Friendships. Mikey’s League is an inclusive sports league, with sports like flag football and basketball designed for children with and without intellectual and developmental disabilities to, simply, play together. Pawsitive Friendships provides animal assisted therapy to children with special needs, allowing them to build animal-human friendships, while simultaneously working on individual therapy goals. Both of these organizations, in addition to the Miracle League, give me a chance to raise awareness of the same, underserved population—individuals with disabilities and special needs.

My daughters have also thrived in this environment. My oldest, Madeline, is a now a sophomore at ASU, studying elementary education. While Madeline has always loved children, her time at the Miracle League (she is also a staff member) reaffirmed her plan to teach one day. My younger daughter, Addison, was awarded “Most Valuable Volunteer” last year at the Miracle League for logging the most volunteer hours. She’ll be a high school senior in this fall and hopes to attend ASU in 2022, with interests in social work or, perhaps, becoming a therapist one day.

Q: How did you end up at LEARN Behavioral?

A: The pandemic affected my professional role with the Miracle League, as baseball services essentially shut down completely for more than a year. Lucky for me, when I was fully ready to resume my career—this time with the intent of doing something to help others—I discovered opportunities with LEARN’s new community liaison team. The timing turned out just right. And timing really is everything.

Q: What do you do as a community liaison associate?

A: The community liaison role is the human link between LEARN and the organizations and people we serve within our local communities.

I work with an amazing internal team focused on developing strong relationships with key influencers— physicians, other healthcare providers, school leaders—who can potentially serve as new referral sources to solidify LEARN’s nationwide presence within the industry. Together, we work closely with local clinical teams to coordinate our community outreach and networking efforts.

Before he passed away, my Pops used to say, “Love what you do, and never work another day in your life.” Today, I know what he meant.

Q: Your story is inspirational. Based on everything you’ve gone through, what advice might you offer others undergoing a challenge or in need of a change?

A: Go find your purpose. I know, in my heart, I’ve found mine. The reason I was put on this earth is not only to be “Daddy” to Madeline and Addison (yes, my teenage daughters still call me “Daddy,” and I hope that never changes) but also to serve others.

In our “Keeping up with the Joneses” society, the chase for the better job, bigger house, nicer car, perfect body… it leaves almost all of us feeling “less than.” But what are we really chasing anyway? Is it even obtainable, whatever “it” means?

It took a lot for me to get to this place in my life where I’m happy again, even without my best friend by my side. I never thought I’d reclaim my lost smile. My girls are active and happy, too, in our new community and always want to “give back” themselves—that couldn’t make me prouder.

As someone who spent what felt like years in the fetal position in tears, I realize now that it is, in fact, possible to find joy again. For me, it took giving of myself and helping others to step away from my own problems. By helping others, I didn’t have as much time to think about my problems, and that, in itself, was healing.

For anyone in pain, depression, sadness, or grief, volunteer your time, even when you think you have nothing to offer. Know that there are individuals worse off than you. Find them. Help them. And come to see through these selfless acts that you’re the one getting the greatest payback.

5 Steps to Swim Safety for Your Child with Autism

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As the summer heat settles in, many families head to pools, beaches grow crowded, and our time spent near water becomes part of our routines. What seems like a standard summer activity for most can be challenging for children with autism spectrum disorder (ASD) and their families.

Sadly, drowning after elopement, a term used to describe the tendency for some individuals with autism to wander from caregivers and secure locations, is a leading cause in death in children and adults on the autism spectrum. In fact, a 2017 analysis from Columbia University found that children with ASD are 160 times more likely to die from drowning than the general population. Other studies report similar findings—and highlight a dire need for more awareness and preventive measures.

Given the impairment in cognitive functioning and language associated with ASD, several experts have hypothesized that children with autism tend not to see water as a danger. Rather, their impulsivity and therapeutic love for the sensations of water can take over. While this may seem like ominous news, on the plus side, a study from the Journal of Autism and Developmental Disorders provides an initial indication that children with ASD can develop skills to avoid drowning.

What does that mean for you, as a parent or caregiver of a child or young adult with autism? Fortunately, you can take steps now to keep your loved-one safe and secure this summer—and beyond. Here’s what to do:

1. Exposure

The earlier you expose your child to water, the better. Sign up for local swim lessons, offered at most recreational centers in surrounding areas. Some specialize in adaptive programs geared toward children with special needs, which can provide an individualized approach to learning to swim, while building confidence and safety near the water.

2. Precautionary Measures

If you own a pool or live near water, make sure you use locks, gates, and other barriers around these areas. After using any small kiddie pools, large tubs, or water play areas, take a few minutes to empty these when done.

3. Strategies

Establish rules for your loved one with ASD. Practice and review these rules before going near water and throughout a visit or trip to a pool, lake, river, or ocean. Present these rules and other strategies in a way that can easily be understood and reviewed often. Consider, for instance, developing a social story that outlines the expectations of what it means to be safe near water. You can also provide replacement behaviors, such as how to enter water and when it is safe to be in water; teach children to identify and respond to common safety signs related to water; and model appropriate behavior when swimming or near water.

4. Discussion

Talk to neighbors who own pools about your child’s increased risk of roaming and drowning. Discuss the issue, too, with all lifeguards at your pool, babysitters, extended family—and even your local police department. As a parent or caregiver, you are your child’s best advocate, especially when it comes to safety. Some police departments provide a safety plan or alert form that allows for your child’s likes, fears, and behaviors to be documented, all of which can help immensely in the event of an emergency.

With these five proactive steps and clear directives, a successful trip involving swimming isn’t out of question—and is actually encouraged. Go enjoy the beach and plan to visit the local pool, but don’t forget the power of preparing and communicating with your local support systems.

Help your child stay safe this summer with the National Autism Association’s Big Red Safety Box. You can apply to receive the box of tools and resources for free, or download the NAA’s Be REDy Booklet for Caregivers at no cost.

Transitioning to Summer: 5 Tips to Make It a Success

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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.”

Easing Your Child Back Into Life Post-Pandemic

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

If the last 16 months have taught us anything, it’s that the only constant in life with COVID-19 is change. And while the persistent evolution of information and safety protocols has left many with a severe case of whiplash, its impact on children has been even more profound—particularly for those with autism. Now, as more Americans receive their vaccinations, and more of the country begins gradually reopening, our children are set to face yet another daunting upheaval: returning to normal life, or adapting to a “new normal.”

This will be easier said than done, however. Depression and anxiety among children have skyrocketed since the beginning of the pandemic, and the prospect of reentering a “normal” society will do little in the way of alleviating that anguish. For children with autism, the sudden reentry into everyday socialization may seem downright terrifying. Children are incredibly resilient by nature, but as we begin to take these first baby steps back toward the lives we used to know, it’s imperative to remember that when it comes to our children’s mental well-being, they’re not out of the woods just yet.

What follows are some strategies you can use to help ease your child into a post-pandemic life.

Structure, Schedules, and Routines

It’s not an overstatement to say that COVID-19 took a wrecking ball to the structure, routines, and cues children had spent a lifetime developing. Activities like school, sports, and outdoor playtime were forced to take a back seat, in favor of safer but more sedentary options like TV, gaming, and, hopefully, reading. And while many parents will feel a natural urge to thrust their children back into the recreational activities they enjoyed pre-pandemic, it will be important not to throw them into the deep end before they feel ready. This is especially true for children on the autism spectrum, who can feel overwhelmed by sudden, unexpected change.

How, then, can you help your child adjust to our sudden “new normal”? Start small. Try reestablishing daily and weekly household routines, such as mealtimes, cleaning schedules, and, of course, play time. Planning small outings to places like a local park will not only help get kids out of the house but also help refamiliarize them with learned social concepts in a comfortable, low-stress environment.

Communicate with Your Kids

Some children will initially feel reticent to exit the cozy, slower-paced lifestyles they’d grown accustomed to over the last 16 months. Others may feel anxious to reengage with high-stress social environments after a year of isolation. Understanding what your child is feeling will be crucial. For children living with depression, anxiety, or autism, too much, too fast, too soon may only worsen their anxiety.

Make it a point to have regular conversations with your child about their mental health space, and what activities they might feel comfortable, or uncomfortable, participating in. This will help foster a relationship of mutual trust and understanding, and provide your child with a sense of agency they may have been lacking over the previous year.

Be Aware of Emotional Cues

No matter your child’s age, it’s possible the pandemic has left traumatic effects on their mental well-being. Recognizing your child’s emotional cues will help you better understand what is causing their distress.

It’s natural to feel stress when adapting to a new environment, and some children may show common signs, including changes in appetite and sleep, or increases in behavioral issues. However, if you believe these sustained symptoms are beginning to affect your child’s mental health, it’s essential you contact a health professional. This is particularly crucial for children with autism, who can struggle to effectively communicate their feelings. If you find it difficult to understand the emotional cues of your child, it’s better to consult a psychologist or other professional to help find ways you and your child can overcome this stressful time.

For more on helping kids with autism manage stress, read “How to Support Kids with Anxiety or Depression.”

How Parents and Caregivers of Kids with Autism Cope with Stress

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

Parenting can be stressful, and research shows that parents of autistic children consistently score higher on stress indicators than other groups of parents. While stress can be good for us—in manageable doses, it can energize and motivate—prolonged bouts of stress can lead to health problems. In fact, parents of autistic children report that they experience more depression, anxiety, and stress-related health problems than other parents. Parental stress has also been associated with marital distress, less effective parenting, and dropping out of treatment.

Why is this? Although no causal relationships have been definitively shown to exist between parental stress and kids with autism, several factors likely play a role. Some families cite pressure to get treatment early on, amplified by stories of “recovery.” A lack of sleep, financial burdens magnified by the need to pay for treatments, a greater necessity for parental vigilance and advocacy, and the presence of challenging behavior can also contribute to more parental stress.

If parents of kids with autism do, as research indicates, experience higher stress, what, then, does the research say can help parents and caregivers cope? Here are three research-backed suggestions:

1. Effective treatment for children

It stands to reason that effective treatment can mitigate some of the parental stress experienced by families with autistic children, particularly those whose children struggle with communication and challenging behavior. As numerous studies suggest, the effects of challenging behavior (aggression, defiance) on the family system are a major factor in parenting stress.

What, then, triggers or leads to challenging behavior? Often, challenging behavior is precipitated by communication difficulties or unexpressed/untreated pain—and, as you likely know, autistic children have more health problems than typical children. Intervention that supports your child’s communication, assists them in accessing medical services, and arms you with behavior management tools can lower distress in both child and parents. Likewise, reducing challenging behavior can also help you avoid the social stigma and feelings of exclusion and isolation that many parents report.

2. Coping strategies

Some research suggests that how parents direct their focus has an impact: those who concentrate on getting help, solving problems, and finding meaning in their experiences have better outcomes than those who avoid their emotions and stressors. It’s also clear that social supports can ease parent stress; this may be in the form of emotional support (family, friends, other ASD families), informational support (schools, professionals), or online communities. Other coping strategies found to be important in reducing stress include:

Optimism – Your family can cultivate optimism by shifting thoughts about why things are happening to what we can do to change them. For example, say a favorite service provider is leaving. A pessimistic parent might think they are partially to blame for the provider leaving (perhaps: she doesn’t care about us enough to stay), while a parent shifting to optimistic thinking may chalk up the loss of a provider to simply bad luck, and something that everyone experiences from time to time. The pessimistic parent may feel helpless in the face of changing providers, while a parent shifting to optimistic thinking will focus on what they can do to help the next provider be successful.

Emotional acceptance – Some parents report acceptance as a coping strategy that tempers stress. Continuously comparing an autistic child and their development to that of a non-autistic child can perpetuate anxiety. Accepting that an autistic child has unique needs, such as additional educational services and a parenting approach that is quite different from the approach used with siblings, can help ease some parental distress.

Cognitive reframing – Cognitive reframing is a coping strategy that can help families who have a child with differences adjust. For instance, parents might reframe their situation to see difficult events, rather than a difficult child, and view those difficulties as manageable—i.e., as problems that have a solution.

3. Mindfulness

A growing number of studies reveal that mindfulness programs can help reduce the additional stress experienced by parents of autistic children. Generally, programs consist of meditation, focusing on physical sensations, and letting go of thoughts. Some also include a discussion of stressors or light stretching. Parents participating in mindfulness programs report decreases in stress and depression, improvements in sleep and health, and increased self-compassion and feelings of well-being. In a study that paired mindfulness practice with training in positive behavior supports, the mothers experienced stress relief, while simultaneously learning strategies that significantly reduced their children’s aggressive and disruptive behaviors.

Raising a child with communication and behavior challenges is incredibly stressful, but it doesn’t have to sentence you to a life defined by stress. Do your best to recognize when the pressures of your life are creating a chronic stress situation, and take steps toward relieving the strain. This will not only improve your own health and happiness but also benefit your autistic child and the entire family system.

To read one mom’s account of the stress of parenting, see “To All the Other Parents of Children with Special Needs: I Feel You.” To dive into the research on coping strategies for parents and caregivers of kids with autism, see these studies:

Bazzano, A., Wolfe, C., Zylowska, L., Wang, S., Schuster, E., Barrett, C., & Lehrer, D. (2015). Mindfulness based stress reduction (MBSR) for parents and caregivers of individuals with developmental disabilities: A community-based approach. Journal of Child and Family Studies, 24(2), 298–308. https://doi.org/10.1007/s10826-013-9836-9

Da Paz, N. S., Siegel, B., Coccia, M. A., & Epel, E. S. (2018). Acceptance or Despair? Maternal Adjustment to Having a Child Diagnosed with Autism. Journal of autism and developmental disorders, 48(6), 1971–1981. https://doi.org/10.1007/s10803-017-3450-4

Ekas, N.V., Lickenbrock, D.M. & Whitman, T.L. Optimism, Social Support, and Well-Being in Mothers of Children with Autism Spectrum Disorder. J Autism Dev Disord 40, 1274–1284 (2010). https://doi.org/10.1007/s10803-010-0986-y

Fox, L., Dunlap, G., & Powell, D. (2002). Young children with challenging behavior: Issues and consideration for behavior support. Journal of Positive Behavior Interventions, 4, 208–217.

Lucyshyn, J. M., Dunlap, G., & Albin, R. W. (Eds.). (2002). Families and positive behavior support. Baltimore, MD: Brookes.

Siah, P. C., and Tan, S. H. (2016). Relationships between sense of coherence, coping strategies and quality of life of parents of children with autism in Malaysia: a case study among chinese parents. Disabil. CBR Inclus. Dev. 27, 78–91.

Singh, N. N., Lancioni, G. E., Karazsia, B. T., Myers, R. E., Hwang, Y. S., & Anālayo, B. (2019). Effects of Mindfulness-Based Positive Behavior Support (MBPBS) Training Are Equally Beneficial for Mothers and Their Children With Autism Spectrum Disorder or With Intellectual Disabilities. Frontiers in psychology, 10, 385. https://doi.org/10.3389/fpsyg.2019.00385

Walsh, C. E., Mulder, E., Tudor, M. E. (2013). Predictors of parent stress in a sample of children with ASD: Pain, problem behavior, and parental coping. Research in Autism Spectrum Disorders, 7, 256-264.

Christian Tsetsos Shares Stories from His Life on the Spectrum

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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.

Understanding the Evolution of ABA

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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.