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Structural Racism and its Impact on ABA: Disparities in Diagnosis and Treatment

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 stories to help foster conversations about diversity, equity, and inclusion in our communities.

By: Jasmine White, M.S., BCBA, Behavioral Concepts (BCI)

Today, the topics of diversity, equity, inclusion, and equality are at the forefront of many organizations. The long-standing impact of structural racism and its influence on society can no longer be disregarded. People of all creeds are speaking out against injustices and the need to promote inclusion. The dialogues on disparities have led me to reflect on the field of applied behavior analysis (ABA) and the community which it serves. To what extent has structural racism impacted ABA as a practice? Are ABA practitioners able to identify biases within the field? What is the impact on the provision of services? How does it influence diagnosis? The literature on structural racism has shown that even the most well-intended person can possess biases, we are not immune. Therefore, it is our time as a community to gain an understanding of how structural racism has affected the field of ABA.  

Here at LEARN, it is our goal to contribute to a brighter future for all, which means bringing to light sensitive topics that are impacting the communities we serve. While this may be an uncomfortable conversation, it is needed for the development of cultural humility in ABA practice. LEARN’s focus is twofold, call attention to and create a constructive conversation around disparities in diagnosis and treatment related to diversity, equity, and inclusion. As an organization that serves a diverse population, it is our responsibility to bring attention to the disparities experienced by those we serve and to be a part of the solution towards lasting change. 

Ethnicity is known as belonging to a specific racial, national, or cultural group and observance of that group’s customs, beliefs, and or language. Depending on ethnicity, one may have a life exposed to more inequalities. For racial and ethnic minorities in the United States, these inequalities include health disparities, such as higher rates of chronic disease, lower life expectancy, and decreased quality of life compared to the rates among non-ethnic minorities.

Ethnicity also has a direct impact on how early autism is identified, evaluated, and diagnosed. Research shows that not only do Black and Latino children with autism spectrum disorder (ASD) receive their diagnosis and start intervention at an older age than White children with ASD, but they also less frequently receive evidence-based interventions. For Black and Latino families, this directly impacts service opportunities, outcomes, and quality of life. According to the Center for Disease Control, studies have shown that implicit bias, lack of access to healthcare services, and non-English primary language are potential barriers to the identification of children with ASD. The research established that Black and Latino children receiving ABA services were more likely to score lower on caregiver reports of health care quality than their White counterparts, including areas of access to care, referral frequency, number of service hours, and proportion of unmet service needs.  

As a community, we must investigate ways to expand access and resources to those who so desperately need services. Identify areas of structural racism and work to reduce and eliminate them from ABA practice. Train our practitioners to identify and bracket implicit biases. Find communication methods so that all families can have a voice regardless of the primary language spoken. Explore ways to have open and honest networks of communication so that we can continue to have conversations that evoke change. Here at LEARN, we hope to be a part of the solution to these disparities so that we may create an environment where there is equity in access for those we serve.  

Discover more about LEARN Behavioral’s Diversity, Equity, and Inclusion initiatives. Let us find ways to work together to increase awareness and improve access to the communities we serve. Together, we can achieve more.

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.

Jasmine is a BCBA and has worked with BCI for four years. She recently graduated Magna Cum Laude with a Master of Science in ABA from Bay Path University in Longmeadow, Massachusetts. Jasmine is currently conducting her thesis on Implicit Bias in ABA and is looking forward to expanding multiculturalism research in the field.  

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.

Spotlight on Diversity in ABA: An Interview with Joshua Polanco

A board certified behavior analyst (BCBA), managing technician, at LEARN’s Autism Spectrum Therapies (AST) in California’s Inland Empire region, Joshua Polanco provides supervision and behavioral intervention plans for clients in need of ABA services. He earned a master’s degree in psychology and ventured into ABA because he wanted to use that degree in a more direct and meaningful way. He’s also legally blind.

Here, he shares stories from his journey and experience working with children and young adults with autism—and his take on the importance of diversity, equity, and inclusion (DEI) in the field of applied behavior analysis (ABA).

 

Q: WHY DID YOU GET INTO ABA?

A: I was working as a behavioral technician and providing one-to-one services with multiple clients. I was about to quit after the first two weeks of working in the ABA setting because I did not have any experience with children with disabilities and felt like I was not helping my clients. Ironically, the clients and their families are what made me stay. To me, nothing can beat the sensation of knowing you have made a difference in someone’s life, and I have had so many fun experiences that helped me realize the importance of ABA, and how prevalent it is in our everyday lives. All of these experiences are what drove me to continue pursuing ABA to the position where I am now.

 

Q: WHAT DOES DIVERSITY, EQUITY, AND INCLUSION (DEI) MEAN TO YOU?

A: Everything. I feel these concepts as a whole are very overlooked at times. It’s not only important to have diversity, equity, and inclusion in the workplace but to also recognize the benefits provided when DEI is incorporated into a work environment. In my case, I may be legally blind, but that does not make me useless in a work environment that relies heavily on vision. I am able to continue to make an impact on peoples’ lives through my work and can actually provide a different perspective and understanding when helping clients or co-workers because of my loss of vision.

Q: IN YOUR OPINION, WHAT IS THE MOST CHALLENGING ASPECT OF WORKING IN A DIVERSE ENVIRONMENT?

A: Trying to comprehend various interactions that take place. Balancing the state of empathy and understanding, while simultaneously needing to support and accomplish work objectives that need to be achieved.

Q: WHAT IS YOUR APPROACH TO UNDERSTANDING THE PERSPECTIVES OF COLLEAGUES OR CLIENTS FROM DIFFERENT BACKGROUNDS?

A: The short, easy answer is that I take a step back and just listen. Self-awareness and self-control over your own biases and habits go a long way. It’s important to me to recognize the limitations you have in the moment. For example, you may not always be able to truly understand the perspective of others. This is OK—we are only human. I feel like there are ways to still attempt to understand to some degree. Failure to truly understand someone should not give us permission to disregard their perspective.

I’ve relied, to some degree, on multiple psychology books, articles, and notes from when I obtained my master’s degree in psychology, with an emphasis in clinical counseling and marriage and family therapy. When communicating with colleagues and clients, I always try to review and remember the concepts I learned on the dynamics of communication, including those on cognitive distortions and positive feedback loops. Understanding these can play a huge role on how I understand and communicate during a conversation.

Q: WHY IS DEI IMPORTANT IN ABA?

A: Without DEI, we would be refusing to grow ABA as a whole. ABA is a science that expands to more than any one individual population. Part of everything we do is to help, expand, and make a difference in the world. What better way to accomplish this than to recognize the different things people have to contribute.

Q: TELL ME ABOUT A TIME WHEN YOU ADVOCATED FOR DIVERSITY AND INCLUSION IN THE WORKPLACE OR IN YOUR PERSONAL LIFE.

A: One poignant instance in which I had to advocate for myself is the moment I was officially diagnosed blind, and I had to reach out to the HR department to figure out some resolutions and next steps forward. Luckily, I was part of a supportive team and was able to continue doing the core work I was educated to do and hired for, with some slight accommodations and adjustments.

Q: WHAT’S SOMETHING MOST COLLEAGUES DON’T KNOW ABOUT YOU?

A: I do not know how many people know that I am legally blind. My condition is called Retinitis Pigmentosa (RP). There is no treatment. With this condition, my vision will gradually worsen. There is no telling how much vision I will lose tomorrow…or over the next 30 years. I don’t only have to think about how this affects the work I do with clients but how I adjust my everyday life to prepare for this. Through my work with rehabilitation specialists, I am learning to use technology, to read braille, and even to cook without looking.

Q: ANYTHING ELSE YOU’D LIKE TO ADD?

A: I was diagnosed legally blind less than a year ago. In that time, I’ve taken and passed the BCBA exam, which was the first test I’ve ever had to study for and take without my vision, while finding ways to balance my work, as I learn a new lifestyle. I hope the message from all of this is one of inspiration—that no matter how bad things may seem, it’s important not to let the events around you, define you. Take control of the things you can, adapt, and persevere through the adversity. Because this is what we ask of our clients each day.

For more from our Spotlight on Diversity in ABA series, read “An Interview with Angela Parker.”

Neurodiversity: What It Means, Why It Matters

BY RONIT MOLKO, PH.D., BCBA-D
STRATEGIC ADVISOR, LEARN BEHAVIORAL

If there is one enduring hallmark of the American experience, it’s the immense diversity found within our expansive borders. Most of the time, we perceive diversity via differences in skin color, language, clothing, places of worship, or even the foods people eat when gathered around the table with their families. There is, however, one major aspect of diversity that is often overlooked—one that comes as no surprise, considering it cannot be detected solely through visual means. I am, of course, referring to neurodiversity.

Coined in the late 1990s by sociologist Judy Singer—who is on the autism spectrum—neurodiversity is a viewpoint that characterizes brain differences among individuals as normal, rather than as a disability. This viewpoint reduces stigmas around learning and thinking differences, while calling attention to the ability of neurodivergent communities to benefit from multiple perspectives and make greater contributions to society. Central to the movement is a rejection of the idea that these unique individuals need to be cured or fixed. Instead, it’s held that people possessing different types of brains need to be embraced and provided support systems that allow them to participate and contribute as members of the community to the best of their ability.

Grounded in Science

Unsurprisingly, the foundations of this not so new movement are grounded firmly in science and empirical study. By leveraging MRI results from hundreds of individuals, researchers have been able to compare the brains of people diagnosed with learning differences to their counterparts. So far, studies have shown that the brains of neurodivergent individuals are, in fact, unique. For example, the part of the brain that maintains language processing works differently for people diagnosed with dyslexia. Additionally, the prefrontal cortex, which manages executive functioning and attention, develops much slower in children diagnosed with ADHD. In other words, these individuals are not necessarily operating with a learning deficit but rather possess brains that are literally wired differently.

A Neurodiverse Population

Whether a group of kids recently diagnosed with autism or adults still grappling with ADHD or dyslexia, the American neurodiverse population is quite substantial. According to a 2021 report from the Center for Disease Control and Prevention, one in every 44 children in the United States is diagnosed with some sort of autism spectrum disorder, and an estimated 5.4 million adults—or roughly 2.2 percent of the entire population—fall somewhere along the spectrum. Many people on the spectrum have contributed (or still do) to their communities every day, such as Albert Einstein, Anthony Hopkins, Henry Cavendish, Greta Thunberg, Jerry Seinfeld, and Elon Musk. They have been among the world’s highest achievers, impacting the arts, sciences, technological innovation, and activism.

In much the same way as the neurotypical population, the neurodivergent population is broad, diverse, and multidimensional. It’s crucial, then, for the public not only to embrace their different brethren but also to actively promote opportunities for them both in society and in the workplace at all abilities and levels.

Fortunately for society writ-large, corporate America is starting to take notice. A recent article published in the Harvard Business Review named neurodiversity as a bona fide “competitive advantage,” noting the unique and, often, incomparable output provided by atypical members of their workforce. Numerous companies, including Hewlett-Packard, Enterprise, Microsoft, SAP, and Ford, have recently begun to reform their HR practices in an effort to expand neurodiversity in their ranks by identifying, hiring, and empowering these unique individuals. The results, so far, have been outstanding, with managers noting legitimate “productivity gains, quality improvements, boosts in innovative capabilities, and broad increases in employee engagement.”

Diversity of all kinds, including neurodiversity, strengthens our daily institutions. Just as we are seeing a focus on diversity, equity, and inclusion (DEI) in employment and other areas of life and commerce, we must also remember that recognizing and celebrating differences, promoting justice and fairness, and ensuring true support and inclusion applies not only to people with observable differences but also to our neurodiverse populations. Not all cognitive differences are visible, and it’s crucial to keep in mind that there’s more than meets the eye when it comes to true diversity.

In another blog post, Dr. Molko explains the history and evolution of applied behavior analysis (ABA) therapy. Read the story.

Spotlight on Diversity in ABA: An Interview with Giovanna “G” Bosco

Giovanna “G” Bosco (she/they), a training tech at LEARN Behavioral and AST’s Mandeville, Louisiana, location, spends the bulk of their days preparing and onboarding staff to join the LEARN and AST team. When a friend from another AST region mentioned the open position, G’s love of being around children prompted her to apply. Then, after the job offer arrived, they jumped at the chance to work with kids regularly—and spend her days making a difference in the lives of others.

G took time recently to talk about their work with LEARN’s Diversity, Equity, and Inclusion (DEI) Plan, along with her experience working in ABA at AST. Here, we share the conversation.

Q: What does Diversity, Equity, and Inclusion (DEI) mean to you:

A: To me, diversity is an adjective I use to describe the environment in which I like to place myself. When I think about those individuals I call my friends, co-workers, and fellow community members, I think about how no single person is like another. We each look different, have different social histories, and may even differ on how we function neurologically. Although we may be different from one another, I can learn from each of them things that I would never know if I only surrounded myself with people who look and act like me.

Equity is about establishing a level playing field. I am aware of the privilege I have, and it isn’t enough to ask that those who were not born into same privilege be treated equal. I want everyone to have access to the resources that will ensure everyone has the same fighting chance to be successful in life. Inclusion, or to include others, is an action I decide to do each day. It involves creating an environment that welcomes others and makes them feel safe and secure.

Q: In your opinion, what is the most challenging aspect of working in a diverse environment?

A: Where I live, in Louisiana, the population isn’t all that diverse. So, the most challenging aspect I could identify is in communication, and how I work and relate with new hires who come through training. But recognizing the role communication plays in any interaction with another person is probably a challenge we could all benefit from realizing and thinking more about. As I mentioned, we all have our own differences (internal and external), and recognizing and appreciating that can go a long way. But it’s not always the most intuitive thing to do.

Q: What is your approach to understanding the perspectives of colleagues or clients from different backgrounds?

A: I think the most important thing to do is to create a safe space where people can come forward and explain their perspective on the situation. We might all have different ideas on how to complete tasks or how to address certain situations, but if those involved and I are respectful and open of other ideas, a solution can almost always be found.

Q: Why is DEI important in ABA?

A: In our line of work, it is never just about the diagnosis. Our clients are diverse racially, religiously, and in so many other ways. These social identities will always intersect with their diagnosis, and you cannot serve a client without addressing all of the factors that make them them. So, I think DEI in ABA is important for many reasons. Having a diverse staff can help improve the services we give to our clients and their families … and having staff who are self-aware and willing to learn about each client’s culture will only help us provide quality services. DEI can make us all better colleagues, friends, and neighbors, too.

Q: Tell me about a time when you advocated for diversity and inclusion in the workplace or in your personal life.

A: This one is difficult for me because I don’t truly feel like I’ve advocated for this in the workplace or in my personal life. It’s something that’s just felt inherent—this is coming from someone who always received the citizenship award growing up because I was friendly to everyone. So, I may not be so intentional on acting on it. It started with something my mom always told me: “If you see someone sitting alone, sit with them, even if they don’t want to talk.” I think, overall, that’s a pretty great starting point.

Q: What’s something most colleagues don’t know about you?

A: Most of my wonderful co-workers know that I have a beautiful wife and am part of the LGBTQIA+ community. However, something most of my colleagues don’t know about me is that I identify as non-binary.

To find out how and why we tailor ABA treatment to the unique needs and values of every client and family, read “Perspectives: Embracing Individuality in Behavior Analysis.”