By: Candice Colón-Kwedor, PhD, BCBA-D, LABA

This year marks the twelfth annual World Autism Awareness Day (April 2, 2019). But of course, many families and advocates were working tirelessly to promote awareness long before this day was created, and they continue to do so today. The Merriam -Webster dictionary states that awareness is the “knowledge and understanding that something is happening or exists.” Knowledge of Autism Spectrum Disorder (ASD) is important but the true part of awareness that should be focused on is understanding, which may only be brought about via experience and education.

When I first started off in the field of applied behavior analysis (ABA) working with children diagnosed with ASD, the services provided to families in the state of Massachusetts were either school-funded or privately paid by the family.  I still remember the many families who reached out in despair and one family’s story in particular, will always remind me of just how far we have come. I remember the mother who would recount her experiences of trying to teach her young daughter basic communication skills. For instance, I can remember the time this mother recalled sitting on her kitchen floor for what seemed like forever until her daughter finally made one simple request and at the end both her and her daughter sat in tears. No doubt these were tears of frustration, but ultimately tears of joy over a victory of progress that they both experienced. This was a mother dedicated to teaching her daughter, but not naïve to the fact that substantial progress would require a team of qualified professionals to help support her daughter. A mother who knew that the parent support she received from the school was good, but it wasn’t good enough, as she needed additional in-home support to provide her daughter with additional learning opportunities tailored to her daughters’ individual needs in their home and community. This same mother would tell stories of long arduous telephone calls with the insurance company trying to get them to fund in-home services for her daughter. The answer she received time and time again was “No”, that at most she could receive outpatient services once a week for one to two hours at a time, and that “ASD was categorized like depression or bipolar” and those were the services she could expect. She would sit on the other end of the phone trying to explain her child’s actual needs; she needed skill building exercises, assistance with her challenging behavior and most of all parent training and collaboration in her home so that she could also help to support her daughter. Unfortunately, these explanations always resulted in no change on the part of insurance company representatives.

As a young professional in the field of ABA and as someone who knew just how much support was needed to make meaningful progress, my heart was heavy when I heard this mother and others tell of their struggles.  I wished I could do more for these families to help them receive additional services. Fortunately, over the last decade, education and advocacy has improved health insurance coverage for medically necessary treatments such as ABA. These advocacy efforts have not only resulted in a trend towards appropriate funding for insurance-based ABA services across the United States but also assisted in awareness regarding the prevalence of ASD and the unique service needs associated with the diagnosis.  For instance, An Act Relative to Insurance Coverage for Autism (ARICA), was a law passed in 2010, requiring private health insurers in Massachusetts to provide coverage for the diagnosis and treatment of ASD. More recently, Current Procedural Terminology codes or CPT codes for ABA, which are codes maintained by the American Medical Association and used by medical providers to bill insurance companies for services, have transitioned from temporary (experimental, but effective treatments)  to permanent (treatments proven effective via scientifically supported evidence) as of January 1, 2019. This change generally requires insurance companies to reimburse for ABA services as medically necessary treatments for those who need services.

Due to such efforts, today the child I mentioned above has had several years of access to insurance-based services in addition to school-based services and the impact has been remarkable for her progress. However, as fruitful as these changes have been, it is important to remember that there are still opponents to insurance based funding who argue that services for those diagnosed with ASD are the responsibility of parents and school systems and continue to raise concerns that mandating coverage for ASD significantly increases insurance premiums. Therefore, I am sure that maintaining funding and, in some states, establishing funding will continue to be a battle in many capacities. Therefore, we must remain dedicated to educating people about the wide range of effects ASD presents and continue to raise awareness and financial support for programs that make the lives of those diagnosed with ASD and their families happier, healthier and safer.

In addition, there must be a focus on education for the general public in order to reach an ultimate understanding of this vast spectrum of needs so that each person affected by ASD can receive acceptance, support and the necessary action to obtain continual improvements and progress. As I reflect on the changes over the course of my career, I am inspired by those who fought tirelessly to advocate for insurance-based services, but I also know that there is still much to be achieved. For instance, we still have much work to do in the area of the general public’s understanding regarding the diversity of those diagnosed with ASD and the varied level of support that each individual may actually require. No two people diagnosed with ASD are alike and in turn either are the level of services they require. For instance, the 14-year-old boy who needs to be accompanied by his mother or a one-to-one aide in the rest room of the local target isn’t a spectacle to be stared at nor is he a child who should be scolded for being in the women’s restroom. He simply needs the support of an adult to supervise him at all times. The parents of the child engaging in a tantrum in the middle of the mall don’t need to be chastised or labeled as bad parents, they are simply parents who are likely working through a skill with their child or perhaps they are in despair because they are in need of additional services. And, then there is the child who you probably don’t see out in public very often, the one who is still working on safety skills, the one who has to wear protective equipment such as a helmet or arm limiters due to his severe self-injurious behavior, this child isn’t to be forgotten because he too is diagnosed on the autism spectrum (even though you may not be aware of him)  and he too is deserving of support and understanding from his community members. Therefore, I encourage each member of the community to remain open-minded, challenge their judgments, and seek a genuine understanding of ASD via education inclusive of listening to the experiences of those directly affected by this disorder so that awareness can be fully achieved.

By: Sally Burke, M.S. Ed., BCBA, LABA

For the past 25 years, I have worked in the field of Applied Behavior Analysis.  As I reflect on Autism Awareness Month, I recognize that working with people is the most rewarding part of my job. In my role as the Director of Specialty Early Intervention Services, I have the privilege of working directly with the clients and families we serve, my fellow staff, and other providers . I value everything that each of them has to say regarding the well-being of the children we serve and services that we provide.  The ability to empathize with these wonderful people around me has helped to define me as the professional I am today.

Empathy is the action of understanding, being aware of, being sensitive to, and vicariously experiencing the feelings, thoughts, and experience of another of either the past or present without having the feelings, thoughts, and experience fully communicated in an objectively explicit manner (Merriam-Webster, 2019). Or, as the old saying goes, “put yourself in another person’s shoes.”

Demonstrating empathy with families is imperative.  Being able to understand what is happening within the family unit not only makes you a better Behavior Analyst but it makes you a better person. You can have the best clinical idea for treatment in mind but if you can’t understand and respond to the individual family’s needs, you have not fulfilled your obligations as a clinician nor have you maximized the potential outcome.

In the workplace, having empathy can show respect for co-workers and communicate that you care about them as a person.  This can go a long way in developing meaningful relationships, increasing team morale, and building loyalty.  It gives people a sense of being heard and feeling understood. Empathy is a powerful tool in the workforce.

Autism awareness and acceptance starts with empathy. It’s not always easy to understand why someone thinks or feels the way they do about a situation.  It takes time and effort to show awareness and understanding.  If you work hard at this it will eventually become natural to you.

I’m not saying every day will be perfect, however, if you can focus on this attribute, I guarantee you will enjoy life more and do a better job at whatever you do.  Embrace empathy in everything you do, it gets easier and, in my opinion, it’s what matters most.

Work Cited

“Empathy.” Merriam-Webster, Merriam-Webster, 2019, www.merriam-webster.com/dictionary/empathy.

Twenty years ago, I graduated high school with the plan to go to college, get my psychology degree, and work with the troubled teenage youth. I wanted to make a difference in someone’s life. Fast forward to today. Let’s just say, the plan didn’t exactly go as I expected but I could not be happier. After working in youth services using my psychology degree, I realized this just was not the career I once wanted for myself.

In 2010, I joined BCI as a Behavior Technician after taking some time off to figure out my future career path. I soon realized that I found a job where I was able to make a difference is someone’s life, just as I had always wanted. After working at BCI for a year, I was hooked and decided to further my education and pursue a Master’s degree in Applied Behavior Analysis.

With Autism Awareness month upon us, I positively reflect on my experience working with children diagnosed with Autism Spectrum Disorder. One particular family that I worked with had a non-verbal son. They were told by a doctor that their son was likely never to speak. The client engaged in many challenging behaviors because he was frustrated by his inability to communicate his wants and needs.  After receiving ABA services, the child ended up not only speaking, using words, but ultimately built up his vocabulary to the point of completing full sentences. In turn, his behaviors decreased tremendously using his new replacement skills instead of engaging in negative behaviors. To witness a child grow and even exceed a doctor’s expectations was such a rewarding experience that I knew this was to become my personal and professional pursuit.

Working with children diagnosed autism has taught me more about the world and about myself than I could have ever expected. I have met many children and families in my nine years at BCI and each encounter has opened my eyes to new experiences and adventures. I am humbled each day working in the autism field as practitioner of Applied Behavior Analysis. I could not imagine doing anything else with my life.

SPRINGFIELD, MA… Behavioral Concepts (BCI), a company of behavioral clinicians specializing in the care of children with Autism Spectrum Disorder (ASD) throughout Central Massachusetts, will hold an Open House on Thursday, January 31, 2019 from 3pm to 6pm at their new Springfield, MA center at 90 Carando Drive. The open house will begin with a Ribbon Cutting ceremony at 3pm with Springfield Mayor Domenic Sarno. 

Founded in 2002 and headquartered in Worcester, BCI has grown to become the go-to provider of Applied Behavior Analysis (ABA) services to children diagnosed with Autism Spectrum Disorders throughout Massachusetts.  

BCI’s Open House will feature tours of their new Springfield center and will enable families and the business community to learn more about BCI’s clinical services. Attendees will have an opportunity to meet BCI’s founder and CEO Jeffrey Robinson, Ph. D., and Regional Director Britney Catron, M.A., BCBA, LABA, along with Marcy Schulz, M.A., BCBA, LABA, Assistant Director of Early Intervention ABA Services, and their team of Board-Certified Behavior Analysts (BCBAs).   

Light refreshments will be served and the general public is welcome to attend. 

BCI relocated from a temporary office to a new 7,200 square foot center at Carando Drive in early January. BCI is currently providing Early Intervention services to 75 families throughout greater Springfield. Their Early Intervention services are designed to assist infants and toddlers (birth to age three) in making significant strides in their development. These services are targeted, evidence-based, tailored to their needs, and usually provided in the home. 

Expanded ABA Services for Ages 3+ 

The new Springfield center enables BCI to expand their services to provide center-based, insurance-funded ABA services for children over age three. Center-based services include an Intensive Day Program for preschool-age children, as well as an After-School Program and a Saturday Social Skills group for school-age children. BCI now has five classrooms, as well as a main area, gym and outdoor play yard, providing them with the capacity to serve 30 to 45 children per session in their new onsite program.                                                               

“We are very excited about our new space and the launch of our insurance funded, center-based ABA programs for children age three and older. It enables continuity of services for our families receiving Early Intervention and home-based services from BCI,” said Catron. 

BCI is a partner agency that receives Early Intervention referrals from the Department of Public Health for children under age three with a diagnosis Autism Spectrum Disorder.  

To learn more about BCI, visit https://bciaba.com or call 508-363-0200. 

About BCI 

Behavioral Concepts (BCI) provides Applied Behavior Analysis (ABA) services to children with autism and their families in central Massachusetts. We identify and facilitate effective personalized instruction that allows children to discover more, learn more, and be more – increasing their independence and enhancing their quality of life at home, in school, and in the community. BCI is a Massachusetts Department of Public Health approved provider of specialty ABA services for early intervention. BCI also provides center, home-based, and after school services through private and public health insurance. The organization was founded in 2002 by Dr. Jeffrey R. Robinson. Further information on BCI is available at https://bciaba.com. 

BCI is part of the LEARN Behavioral family of companies, a national organization dedicated to helping all children succeed in school and life. Learn more at http://learnitsystems.com