Advancing Autism Services: Our Commitment to Public Policy

Written by Dr. Ashley Williams, Ph.D., LABA, BCBA-D, Vice President

National Social Justice Day is a time to reflect on the progress made in creating a more equitable and inclusive society. At LEARN Behavioral, this commitment goes beyond the confines of our therapy rooms; it extends into the heart of public policy advocacy. Our dedication to social justice is evident through our active involvement in various organizations and our continuous efforts to champion policies that support the autism community.

1. Advocating for Autism Services Nationwide

LEARN Behavioral is proud to be an active member of the Council for Autism Service Providers (CASP). Our leadership team actively participates as CASP Special Advocacy Group Leaders in 11 states where LEARN Behavioral operates. This engagement allows us to contribute firsthand to the shaping of policies that impact individuals with autism and their families. Additionally, our membership in the National Coalition for Access to Autism Services (NCAAS) underscores our commitment to addressing state and federal barriers to autism services. By collaborating with like-minded organizations, we strive to create a unified voice advocating for positive change on a broader scale.

2. Advancing Autism Equity Through State Organizations

At LEARN Behavioral, we understand the importance of grassroots efforts in promoting social justice. Our active involvement in local trade and professional organizations, including CalABA, BABAT, WAPA, ORABA, MAC, MIBAP, reflects our dedication to the larger behavior analytic community. Through volunteering and membership in these organizations, we aim to contribute to the development of equitable services for the diverse communities we serve. We believe that fostering connections within the behavioral community is crucial to creating a more inclusive and supportive environment for all.

3. Leading National Advocacy Efforts for Autism Policy Reform

LEARN Behavioral is fortunate to have resident experts in public policy who actively contribute to the
advancement of the autism community. LEARN leaders have published peer-reviewed journal articles on
public policy, presented at local and national conferences, and provided numerous testimonies
advocating for access to care. Our chief clinical officer, Dr. Hanna Rue, is a beacon of leadership in this
regard. Her participation in NCAAS’s “day on the hill” in Washington, D.C., exemplifies our commitment
to effecting change at the highest levels. By engaging with House and Senate offices, we strive to
influence initiatives that positively impact the autism community on a national scale.

4. LEARN Advocacy Network

The LEARN Advocacy Network, led by Dr. Rebecca Thompson, is a vital part of LEARN Behavioral’s public policy efforts, providing a monthly meeting ground for leaders from each state. Driving our advocacy initiatives, this collaborative team engages in meaningful discussions, sharing insights, and staying abreast of the latest developments in public policy. The network serves as a platform where LEARN Behavioral leaders exchange information, ensuring a well-coordinated and informed approach to navigating the complex landscape of policy initiatives.

As we observe National Social Justice Day, it is imperative to recognize the multifaceted approach LEARN Behavioral takes to contribute to a more just and equitable society. Through active participation in national and state organizations, as well as championing public policy initiatives, we are dedicated to making a lasting impact. Our commitment to social justice extends beyond our therapeutic interventions, reflecting our belief in the power of advocacy and policy to create positive change for individuals with autism and their families.

The Advances and Challenges of DEI Initiatives in ABA

Brandon Whitfield, Sr. Clinical Director for AST, part of LEARN Behavioral has presented at several conferences including BABA’s (Black Applied Behavior Analysts) inaugural conference to share ways ABA agencies can bring more equity to the field of ABA. In this conversation, Brandon discusses his role in helping to create The Black Master’s cohort and mentorship program as well as the ongoing need to prioritize DEI advancement in ABA. 

For more information: 

https://learnbehavioral.com/culture

https://learnbehavioral.com/culture/dei

How Neurodiverse Voices are Influencing the Evolution of ABA

Dr. Becky Thompson, Director of Clinical Services for the Wisconsin Early Autism Project (WEAP), and Reux Lennon, Non-binary member of both the LGBT and Autism community and Lead technician with WEAP join us to share their work on the Person-Centered ABA team and the Neurodivergent Advisory Committee.  Dr. Thompson leads LEARN’s Person-Centered ABA team, which is a group of clinical leaders within LEARN who are dedicated to compassionate and individualized ABA services. Reux shares how their work as one of the original members of the Neurodivergent Advisory Committee is creating change and including neurodivergent voices and perspectives.

For more information visit:

https://learnbehavioral.com/learnacademy/culture/neurodiversity

All Autism Talk (https://www.allautismtalk.com/) is sponsored by LEARN Behavioral (https://learnbehavioral.com/learnacademy).

LEARN’s Kerry Hoops Uses Assent-Based Practice to Make COVID-19 Vaccination Comfortable for Kids with Autism

By: Katherine Johnson, M.S., BCBA

Senior Director of Partnerships, LEARN Behavioral

Vaccination visits can be terrifying for an autistic child – a new environment, unfamiliar sounds and smells, being touched by a stranger, and all of this culminating in a painful poke. Anxiety and unwillingness to sit for a vaccine shot can lead to parents and medical professionals winding up with a difficult decision: hold the child down against their will or forego the vaccine. At LEARN, we care about our clients’ health and the experience they have when receiving healthcare.

Recently, the Wisconsin Early Autism Project (WEAP, a LEARN organization) partnered with the Autism Society of Greater Wisconsin in a series of vaccine clinics. These events were carefully designed to provide families with autistic children a positive experience while receiving their COVID-19 vaccines.    

The clinics were held in a local children’s museum, and a pair of seasoned clinicians teamed up with each child, who had reviewed a vaccination social story before coming. Parents answered a questionnaire about their child’s experience with shots and specific interests in advance; clinicians used this information to build rapport with the child, make them comfortable, and provide distraction. Choice was built into the entire experience: children got to select toys, the type of bandage they received, and the body part where they would receive the shot. Clinicians also provided non-invasive devices to mitigate injection pain, like the Buzzy pain blocker, and shot blockers. The most intriguing part? Clinicians waited until the child indicated they were ready before giving them the vaccination.

The result was phenomenal: dozens of autistic children receiving their COVID-19 vaccine without a tear. Kerry Hoops, our Clinical Director at WEAP, said that one experience in particular stood out to her: a boy who was terrified that the shot would hurt, asking about it repeatedly. After assuring him they would not let the shot be a surprise, they spent some time doing one of his favorite activities: having races around the museum. They gave him the opportunity to watch his mother get the vaccine, and then took him to a sensory room in the facility where they watched wrestling (WWE) together. Getting him comfortable was a process that took nearly an hour, but the end result was a child who received his vaccine willingly, and left having had a positive experience.  “The coolest thing is seeing the parents’ responses,” said Hoops. “They were so happy because they were not expecting the vaccination experience to go as well as it did.”

The procedures Hoops and our other clinicians at LEARN used are all evidence-based practices commonly used in applied behavior analysis (ABA) called “antecedent interventions.” Frequently, interfering behaviors (like screaming or bolting from a doctor) occur because the child is trying to escape from something uncomfortable or scary. Antecedent interventions are meant to create an environment that the child doesn’t want to escape from. “We’re trying to create a positive experience so when they go in for their next vaccine, they’re not going to be afraid,” says Hoops.  

The most groundbreaking component of these vaccine clinics was it was not the medical professional who decided when it was time for the shot, nor was it the parent. It was the child. In addition to using antecedent interventions, our WEAP clinicians also had the medical professionals hold off on the procedure itself until the child had indicated they were willing to receive the vaccine – something known as “gaining assent.”  

Assent, having a pediatric patient agree to treatment, is a practice that has been required for medical research since 1977, citing the need to respect children as individuals. Since then, some practitioners have extended assent procedures to their regular pediatric practice, asking for the child’s permission before they listen to their heart, for instance. The new BACB ethics code includes a provision for “gaining assent when applicable,” and proponents argue that Assent-Based ABA prevents difficult behavior and teaches children critical self-advocacy skills. The ability to determine what is and is not comfortable and acceptable for oneself is particularly important for children who struggle to use language, or who are at higher risk of being misunderstood because they are autistic. At LEARN, Assent-Based Programming is one part of our overall Person-Centered ABA Initiative. 

Although Assent-Based practice doesn’t guarantee that every child will eventually agree to the procedure (2 children of the 73 children in the clinic did not assent to the vaccine), it was overwhelmingly successful. The impact was evident in the enthusiastic responses from parents afterward. One parent wrote, “Thank you for the BEST vaccination experience ever! Our family was overjoyed to have been part of this clinic.” 

LEARN is proud to announce that WEAP and ASGW are planning on expanding their vaccine clinics to regular children’s vaccines in the coming year. For more information, check out the ASGW’s website.

Kerry Hoops, MA, BCBA, is the clinical director for Wisconsin Early Autism Project’s Green Bay region. Kerry began her career helping children with autism over 20 years ago when she was attending UWGB for her bachelor’s in psychology and human development. She fell in love with the job and chose to work in the field of autism as her career. Kerry furthered her education at the Florida Institute of Technology and Ball State University with a master’s in applied behavior analysis and became a board certified behavior analyst (BCBA). She loves helping children and families in Wisconsin and internationally in Malaysia. Kerry also works at the Greater Green Bay YMCA for the DREAM program, focusing on events for socialization for adults with special needs. She has been on the board of directors for the Autism Society of Greater Wisconsin since 2014 and is the acting president.

LEARN more about LEARN’s Person-Centered ABA Initiative. And, to stay connected, join our newsletter.

5 Tips for Navigating Autism Treatment for Your Multilingual Child

Maia Jackson, M.S., BCBA
Clinical Development Manager, LEARN Behavioral

Language development is a critical component of the day-to-day lives of young children. It is used within a variety of contexts, including playing with peers, building relationships, functionally communicating needs, etc. As such, there is a heavy emphasis on language and communication built into most applied behavior analytic (ABA) programs. Because such a heavy emphasis is placed on language, it is important that practitioners are mindful of the specific language or languages that are incorporated in the therapeutic setting. In order for ABA programs to be socially significant, services should represent and accommodate for the dominant language of the family. By doing so, children and their families will experience a variety of benefits.

By promoting the use of the family’s native language, children have an increased likelihood of communication opportunities with their immediate and extended families, friends, and community. In addition to having more opportunities to communicate, the quality of the interactions will be more meaningful as caregivers are more likely to effectively express their own emotions, hold their child’s attention, and more thoroughly discuss topics of interest when using their native language (Zhou, et al., 2019). There are also benefits to multilingualism outside of the familial unit. Research has shown that children who are raised in multilingual homes tend to demonstrate higher perspective talking skills than children who do not (Zhou, et al., 2019). Despite all of the benefits to speaking one’s native language, families often face a number of barriers, especially when seeking out autism-related services.

While we live in a culturally diverse country, English remains the dominant language in most regions of the U.S. When children turn on the TV, chances are the shows they watch are in English. When they go to school, they will receive a primarily English education and their peers will speak primarily English. Autistic individuals who receive behavior analytic treatment in the U.S. are likely receiving those services in English. Despite all of these barriers, there are ways for parents and caregivers to advocate for their bilingual children and family.

1. Look for providers who speak your native language

One of the first measures to take when selecting a service provider is to request clinicians who speak your native language. Bilingual service providers can be hard to find and it may take time, but let your provider know your preference so they can attempt to hire and/or pair you with appropriate staff members.

2. Request translation services.

In cases where there are no staff members available to provide services in your native language, consider asking for translation services. Even if you are proficient in English, it may be easier or feel more comfortable for you to communicate in your native language. Per the Behavior Analyst Certification Board’s (BACB) Ethics Code for Behavior Analysts, the clinician you are working with should make every effort to effectively communicate with you and provide you with the opportunity to ask questions and participate in the development and implementation of your child’s program.

3. Consider the assessment language.

If your child speaks a language other than English, it is important to discuss the benefits of your child being assessed in that language. Providers use assessment results as a tool to guide the clinical program and decision making. Having the results of the assessment in your child’s primary or dominant languages will give a more accurate picture of your child’s strengths and areas of need. The starting point of the program will be more representative of your child’s language abilities.


4. Ensure the program is visually representative of your child and your family.

Visual tools and stimuli are often used as prompts, supports, and/or reinforcement systems within many ABA programs. These visual supports may serve to outline a schedule for the day, visuals might accompany a short narrative or story describing a social scenario your child might encounter, or you might see visual images used as reminders or prompts of what steps come next in routine with multiple steps, such as hand washing.  These visual items should be representative of your child and your family. Discuss incorporating your native language and culture into these items in order to promote their use and acceptance by your child. If your child accepts the stimuli and is motivated to use them, effectiveness of their intended purpose will likely increase. 

5. Discuss your language and other cultural values with your team.

Per the Ethical Code for Behavior Analysts, your cultural norms, traditions, and expectations should be extended through all aspects of the ABA program. Social interactions, communication, play activities, and activities of daily living are areas that are addressed in many ABA programs and are going to be affected by language, culture, and traditions. Discussing the ways your language and culture impact your day-to-day routines and expectations will help the clinical team develop and implement a program that is best suited to your child and your family.  

Serving as the navigator and advocator of your child’s services is a huge role. Advocating for language will often be just as important as advocating for hours, goals, or other supports.  Use your team to provide support and to feel empowered to be the advocate your child and your family need.

Supports at LEARN:

  • Document translation services
  • Translation services
  • Language Resource Library
  • Staff training and tools related to Diversity, Equity and Inclusion

Zhou, A., Munson, J.A., Greenson, J., Jou, Y., Rogers, S., Estes A.M. (2019). An exploratory longitudinal study of social language outcomes in children with autism in bilingual home environments. Autism, 23(2), 394-304.

Celebrating Women in Autism this International Women’s Day

For decades, women have played a crucial role in diagnosing, understanding, and treating autism spectrum disorder (ASD). As ASD becomes more prevalent, women continue to be instrumental in developing and refining treatment through vast areas of research. There is much to be recognized, not only for women’s incredible contributions to the autism field but also for their experiences living on the spectrum.  

In honor of International Women’s Day, check out our top five All Autism Talk podcast episodes featuring notable women.  

1. Dr. Temple Grandin – Navigating Autism

2. Dr. Ronit Molko- Girls and Autism: Diagnosis, Treatment, and New Research

3. Devon Sundberg- Women in Behavior Analysis

4. Jennifer Cook- Female Life on the Spectrum

5. Adrienne Bradley- Race and How it Impacts ABA and Our Community

All Autism Talk is a leading autism podcast that offers friendly conversation with inspiring individuals in the autism community. To learn more about All Autism Talk, please visit https://www.allautismtalk.com/  

Q&A About ABA Therapy for Children with Autism

FAQ for Caregivers

Was your child recently diagnosed with autism? Are you beginning to navigate treatment for your child? Before you get started, check out these FAQs about ABA therapy.

What is the goal of ABA therapy?

ABA therapy is designed to support autistic individuals and their families, achieve their identified goals, and improve their quality of life. ABA-based interventions are supported by decades of research and enhance social, communication, play, and adaptive skills. Services incorporate the needs and interests of the autistic individual and their caregiver(s). A behavior analyst delivers the ABA services with the help of behavior technicians, who often provide direct care to the autistic individual. Services are tailored to the individual’s unique needs, with their feedback, and evolve over time. Services for children may look quite different than services for adults, given the individuals’ needs differ over time.

What is “contemporary ABA” therapy?

At LEARN, we refer to our approach as “contemporary ABA.” It is an evolved approach to ABA therapy that promotes individualized treatment, naturalistic and play-based teaching, and is person-centered. LEARN provides a contemporary approach that acknowledges the evolution of ABA, values the individual and their family, and creates space for individuality. Practicing contemporary ABA therapy means that our behavior analysts deeply understand their responsibility to positively and meaningfully impact the lives of the individuals served.

How many hours of ABA therapy will my child receive?

Your child’s hours will be determined between you and your behavior analyst. Your behavior analyst recommends hours based on assessing your child’s needs, other therapies received, and your feedback as the parent/caregiver. Focused programs range from 10-25 hours per week, and comprehensive programs range from 30-40 hours weekly. At LEARN, we provide home-based, center-based, and community-based services, and you can reach out to your local clinical director to find out which services are available in your area. Check out this video to learn about the number of hours clinically recommended for your child.

Are your ABA therapy services individualized?

Absolutely! Each autistic person we serve is unique, and we believe that should be celebrated. Our goal is to promote individual interests and incorporate those into ABA therapy. Behavior analysts make individualized recommendations for services, including hours based on the child and customized goals that fit their needs. Behavior therapists receive training on how to understand the preferences of their clients and include those in sessions to make them fun, rewarding, and engaging.

How is neurodiversity integrated into your approach to ABA therapy?

Listening to the perspective of autistic folks has informed our approach to ABA therapy and led us to incorporate neurodiversity into our practice. Our goal is to elevate the autistic voices in our community, including the individuals we serve, our neurodivergent employees, and the greater neurodivergent community. We’re deeply committed to person-centered ABA therapy practices and promote assent-based care, meaning we validate the identities and experiences of neurodivergent folks and create space for autistic voices to be heard and upheld. Learn more about our commitment to neurodiversity here.

Will my child be required to do discrete trials and sit at a table?

Not all autistic folks benefit from discrete trials or table-top work. For example, a two-year-old child with lots of energy may benefit more from a play-based approach with the therapist sitting on the floor and embedding learning opportunities in play with their favorite toy. Behavior analysts overseeing the treatment plan take time to assess the individual’s needs and work collaboratively with the family to identify an approach to treatment that will work best for the child.

What if someone doesn’t want ABA therapy?

We understand that not everyone seeks ABA therapy, feels it’s the best fit, or perhaps, thinks it’s the right time to try. As with other medical services, the patient (along with their caregiver, if a child) has the right to decide when, if, and what treatment is right for them. Not all ABA therapy providers have the same approach, either, and LEARN supports a family’s right to choose a provider that meets their needs and is a good match for their treatment goals. We want families and our clients to be excited about services and encourage collaboration on our journey together.

Reviewed by Dr. Ashley Williams, PhD, LABA, BCBA-D, Sr. Clinical Director

To learn more about ABA, visit our website. You can also search our locations here.

A Fresh Approach: Empowering Children with Autism

Written by Alison Spanoghe, Behavior Analyst, Autism Spectrum Therapies (AST)

When I first started working in a school system with children on the autism spectrum in the early 2000s, my leaders told me to stick to my instructions — no matter what. They told me this would be best for the children in the long run. As a newbie, I followed orders.

Often, though, that approach led to anger, tears, and resistance from the children who needed my help the most. Despite science backing up the “follow-my-orders” approach, it didn’t always feel “right.”

Today, my approach has evolved to something called “assent-based practice.” It’s a model that puts an end to instruction through coercion. It prioritizes the child’s agreement to participate in therapy rather than mandating that they follow orders.

The Old Way: Extinction

If you’re familiar with applied behavior analysis (ABA), you may have come across the term “extinction.” In simple terms, extinction means not reinforcing a previously reinforced behavior. The aim is to reduce the chances of that behavior happening again.

Let’s say your TV remote stops working. After a while, you’ll stop pressing the power button and maybe look for batteries or ask for help instead. The same principle applies to ABA services. If a certain behavior — like screaming — is not encouraged, the child will eventually stop doing it. You could then teach them a better way to communicate their needs instead of screaming.

While that might be good in theory, behavior isn’t always that straightforward. Also, the extinction approach can sometimes lead to other issues, like longer tantrums, aggression, or even distrust toward caregivers. That’s where assent-based practice comes in.

The New Way: Assent-Based Practice

Assent-based practice focuses on making sure the child agrees to take part in therapy — even if that agreement is nonverbal. When a child is actively engaged, that’s one indication that they are communicating that they agree with participating in treatment.

This type of approach involves:

  • Constant check-ins
  • Respecting when the child no longer wants to participate in treatment
  • Adapting the approach based on the child’s response
  • Teaching the child to communicate

The goal of this technique is to equip children with autism with skills that are useful in any situation. It also helps them advocate for themselves and make it clear when they want to say “no.” It’s more of a compassionate way of providing care.

Why Assent-Based Practice?

There are many benefits to using assent-based practice. It can:

  • Build Trust: It helps establish a safe and trusting relationship between the child and the therapist.
  • Promote Expression: The child learns that they are seen and heard. It encourages them to express their feelings.
  • Respect Autonomy: The child’s “no” is respected, promoting their dignity and independence.
  • Enhance Learning: This approach avoids standoffs. It allows more reinforcement of language use and engagement in the session.

Assent-based practice has become a popular topic in ABA services. It emphasizes getting the child’s agreement before continuing therapy. It teaches children to express their feelings. It also respects their dignity and independence.

Therapists can use this approach with any child at any time, leading to faster learning and better rapport with the child. While our understanding of assent-based practice continues to evolve, it is a worthwhile approach to consider because it puts the child first.

Alison Spanoghe is a behavior analyst with Autism Spectrum Therapies (AST).

Making the Most of Summer Break by Building Essential Skills

As the school year draws to a close, summer break ushers in a bit of a recess for parents — a hiatus from packed lunchboxes, school runs, and homework.

For families with children with autism, though, summer break can also mean disruption to your routine. It can create a lack of social interaction, and it can mean there are more demands on your time as a parent.

Here’s where you can turn those challenges around. Summer doesn’t have to be a lull in the progress your child with autism has been making all year. All you need is a strategy to leverage summer break to be a time to help your child build essential skills.

That starts with setting clear goals, creating a new routine, and incorporating skill-building into fun activities. But how do you do that?

Look for Structured, Play-Based Programs

The first step is to find a program that can keep your child engaged in social activities. Providers in cities across the country offer structured, play-based social skills programs. These programs are crafted with children in mind, aiming to bolster key skills such as socializing, communication, cognition, and sensory perception — all through the power of play.

These summer programs often take place in play-based, group settings, mirroring the school environment, but with the added benefit of one-on-one support. They foster collaboration and inclusion, often welcoming siblings to join, too.

Building a More Trusting Environment

Next, make sure your child is engaged in the process. In the world of applied behavior analysis (ABA), behavior technicians and behavior analysts lead summer social skills programs and promote group activities that help children build friendships.

Programs group children of similar age and skill level and include age-appropriate games and activities. This helps them to learn and communicate effectively.

You might hear your ABA provider using terminology like taking an “assent-based practice.” That’s an approach that focuses on making sure your child agrees to participate in treatment. Using an assent-based practice, therapists encourage children in the program to step out of their comfort zone and try new things. This approach is person-centered and fosters a safer and more trusting environment.

Staying Active to Prevent the ‘Summer Slide’

The “summer slide” refers to the learning loss students experience during summer breaks. Social skills programs for children with autism can play a crucial role in preventing the “summer slide” by promoting continuous growth and development.

These strategies can turn summer break challenges into opportunities to:

  • Build a consistent routine: A summer social skills program that provides a consistent daily schedule is often comforting to children with autism.
  • Help your child retain skills: By continually practicing social skills throughout the summer, your child can retain and even improve upon the skills they learned during the school year.
  • Encourage peer Interaction: Summer programs offer opportunities for social interaction with peers, which is critical for building friendships.
  • Foster personal growth: Summer social skills programs can boost self-esteem and confidence by providing opportunities for success and achievement.
  • Give you a respite: Summer programs can also provide parents with a much-needed break, allowing you to recharge while knowing your child is in a safe and nurturing environment.

Summer break can be more than just a pause from school. With the right approach and resources, it can be a valuable opportunity for your child with autism to continue their development and build essential skills.

By integrating structured play-based programs into your summer routine, you can foster a trusting environment that encourages personal growth and social interaction, while also providing a much-needed respite for you as a parent.

So, view this summer not as a challenge, but as a chance to fuel your child’s progress, further nurturing their unique potential.

Click here for more ideas on making the most of summer.

Addressing Health Equity in ABA Treatment Part I: A Black Mother’s Experience

LEARN is committed to fostering a culture that embraces what makes us each unique—be it race, ethnicity, gender/gender identity, sexual orientation, religion, national origin, disabilities/abilities, or socioeconomic background. LEARN aims to acknowledge the lived experiences and diversity of perspectives of our staff and welcomes our teammates to share their story to help foster conversations about diversity, equity and inclusion in our communities.

By: Asia Johnson, BCaBA, Autism Spectrum Therapies

Asia Johnson (she, her, hers) is an Assistant Behavior Analyst in AST’s greater New Orleans, Louisiana region and the co-chair of LEARN Behavioral’s DEI Employee Resource Group.

Walking on her tiptoes was interesting but cute. Rocking back and forwards raised my eyebrows. But the repetitive “I’m going to stop, I’m going to stop,” felt like weights pulling on my heart.

I had never heard the word autistic before. Little did I know that in a matter of months, the diagnosis of autism spectrum disorder (ASD) would be commonplace. I would sit in my living room with tears in my eyes and my phone in hand watching my daughter attempt to self-regulate. I felt helpless. For days this cycle would continue, leaving me uncertain if I was a good mother. I revisited each trimester of my pregnancy, actively attempting to re-evaluate anything I may have done wrong.

A mom of two with limited resources but a Medicaid card ready to go, I assumed it would be a walk in the park to get my daughter evaluated. I naively thought they would immediately tell me what was causing the concerns and provide tools to assist her. I imagined myself falling backwards into a hammock free from the weight of the world only to fall through the very net I assumed would hold me up. I was told there would be a nine-month wait before I’d receive a call about the evaluation. I was devasted. Even more, devasted to learn that if I had private insurance, I could have achieved a diagnosis in a few weeks.

As a Black woman who experienced medical malpractice during my pregnancies, I was on edge. I wasn’t sure I could trust clinicians to have my best interest at heart, let alone my child’s. With the pending evaluation, I wanted help but preferred help from someone who looked more like me. I kept wondering how a white female could relate to my child or me. Culturally we are different, from the way we comb our hair to how we greet another person.

When diagnosis day finally arrived, I was elated to put a name to all the restless nights. My daughter was diagnosed with autism spectrum disorder. I left that day with reassurance that I was indeed on the right track. But as I toured different facilities, I did not see anyone that looked like us. This feeling left me disappointed. No one in my family had walked this path, so I had no help with guidance or insight, but I was determined to obtain some help. As a parent, we are tasked with some minor and some major decisions to make on our children’s behalf; making the natural choice to seek applied behavior analysis (ABA) services was a significant decision in my eyes.

While I was grateful and relieved to finally have a diagnosis, I soon had a new concern. I quickly learned that the field of ABA lacked diversity within leadership roles. The most recent demographic data report by the Behavior Analyst Certification Board (BACB), reports 70.05% of certificants are white, with the remaining identifying as Latinx (10.56%), Asian (6.85%), Black (3.93%), Pacific Islander (0.38%), and American Indiana (0.28%).

My daughter’s primary struggle was with receptive communication. She could speak but would often talk at people. Her conversations would lead to questions she overheard on television: “Did you know your heart is located in your diaphragm?” However, my child was rarely truly interested in the actual response; if she was, she didn’t wait long to receive the answer before jumping in with another medically driven question. It seemed as if her focus was on the oohs and ahhs or the “wow, how smart” conversations that would follow.

ABA was described to me as a treatment option using empirical studies to promote behavior changes among people living with autism spectrum disorder (ASD). ABA included various treatment settings, and my daughter was provided two options. Option one was to have a behavior technician come into our home. The clinician explained how they would use ABA practices to decrease her comorbid diagnosis of sibling rivalry. Option two was an after-school social skills group to target her ability to reciprocate verbal responses when communicating with others. However, both did not resonate with my lifestyle nor my views as a Black parent, especially with the syntactic structures and linguistics I noted in our brief conversation. I often wondered if my family’s values would be accepted or would I have to have a practitioner come into my home and encourage their societal norms, and that was not something I was willing to accept. As a single mom, I also pondered how I would be able to bring my daughter to a social skills group while working a full-time entry-level job.

I wasn’t wrong to worry. Research shows that Black Indigenous Persons of Color (BIPOC) families and those of low socioeconomic status may encounter issues with inappropriate treatment delivery because of different cultural perspectives. I knew BIPOC families receiving treatment from white practitioners could often face implicit biases because of the country’s systematic racism, which frightened me. Unfortunately, the data says  white clinicians are likely to make assumptions regarding treatment based on stereotypes and their own lived experiences, leading to inaccurate recommendations. So, I did not move forward with ABA services. I did not feel any facility I visited had clinicians who knew how to properly teach my brown-skinned child how to speak the English language, consistent with my families’ syntactic structures.

This pivotal moment in my life shifted my perspectives and my professional journey. I decided that I could (and would) become the Black clinician I once sought. My journey has been harrowing, and often times I still feel like I remain the elephant in the room. But today, there is a peek of light at the end of the tunnel.

When parents embark on a journey designed to make socially significant changes in their child’s life, resistance is likely to happen when approached by a white clinician – especially in southern regions. The south has been known for racial divides and limited resources for Black communities. Southern states have long represented large Black populations and are often referred to as the Black Belt.  Nonetheless, Black patients continue to fight a battle for health equity and justice. ABA services are no different; the Journal of Autism & Developmental Disorders found that African-American children with autism were diagnosed an average of 1.4 years later than white children and spent eight more months in mental health treatment before being diagnosed.

BIPOC patients deserve support in their fight for equal services. BIPOC patients deserve consideration when formingeffective treatment plans. After a long road to a proper diagnosis, families should not face additional challenges in teaching their children the tools necessary for productive and responsible citizenship consistent with their cultures.

My goal as a clinician has always been to inform the world of societal differences that may impact treatment modalities. One example is the lack of acknowledgment often witnessed when practitioners teach verbal and behavioral skills. Often, Black individuals are forced to code-switch. When practitioners not familiar with the cultural nuances in language, work in some homes, they may dictate using what they are familiar with. Code-switching is exhausting, yet many Black individuals are forced to use the “standard language” society deems acceptable in a field focused on effective treatment. As a Black woman, I’m aware of this struggle (and have had to do it in my own life and work). I’m even more aware and conscious that it may be more challenging for those who are autistic to change their behavior readily, let alone the spoken language they are accustomed to hearing.

My experience as a Black Medicaid recipient who crossed various obstacles with my daughter’s diagnosis and treatment process encouraged me to seek out a company devoted to expanding diversity when I finally received my certifications. I am now a Black clinician striving for continued growth with ABA services in the south. I am hopeful for change as I continue to acknowledge cultural differences within my treatment plans.

LEARN pledges to create a community centered around trust, respect, tolerance, and empathy. Read more about LEARN’s DEI journey in our 2021-22 DEI Annual Report and find out how we are investing in our clinicians cultural competence and increasing the diversity of our clinical team. Together, we’re better.