fbpx

Advocating for Your Family and Good, Contemporary ABA With Arfa Alam

Arfa Alam is a senior manager at the Partnership for Public Service, a non-profit that envisions a dynamic and innovative federal government that effectively serves our diverse nation. Prior to joining the Partnership, Arfa performed labor human rights and social responsibility work in more than 40 countries in both the public and private sectors. Arfa joins us to share her experience and deep conviction for the appropriate care, and rights for all. She is the proud mother, wife, and sister of disabled and differently-abled individuals, including her two autistic sons, her husband who lives with early onset Parkinson’s disease, and her twin sister, who is deaf and was the first person in life to teach her about differences and empathy. 

As she shares, “As a first-generation American, it is particularly important to me to bring awareness, acceptance, and inclusion to our communities for individuals with disabilities and neurodivergences.” Arfa’s passion for public service stems from her experience as a first-first-generation Muslim-American with special needs family members. We are grateful for the opportunity to have this discussion with Arfa and we look forward to having her with us again soon.

For more information:

https://www.bestbuddies.org/

https://marybarbera.com/

All autism talk (allautismtalk.com) is sponsored by LEARN Behavioral (learnbehavioral.com).

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

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.