In this informative video, two Board Certified Behavior Analyst (BCBA) moms, Heather and Trisha, share their personal experiences with Applied Behavior Analysis (ABA) therapy and how it has helped their children succeed. For more information about our ABA Therapy services, visit: https://lrnbvr.com/yt-aba-moms
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
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:
All Autism Talk (https://www.allautismtalk.com/) is sponsored by LEARN Behavioral (https://learnbehavioral.com).
LEARN recognizes the critical role that effective training plays in the success of any program or initiative. As a result, we have invested heavily in redesigning our Behavior Technician (BT) Training program to ensure that all our trainees receive the highest quality training possible. With nearly 5,000 BTs working on the front lines each day to provide contemporary ABA services to children with autism and their families, it is essential that our BT training is up-to-date, comprehensive, and effective.
In the fall of 2021, LEARN undertook a significant endeavor to revamp our BT training program, focusing on providing all trainees with a thorough understanding of the core principles of ABA. We collaborated with renowned experts from ABA Technologies to guide the redesign of our program, ensuring that it meets all the requirements for the Registered Behavior Technician® (RBT®) exam and that our BTs are fully prepared to deliver exceptional services to our clients. Additionally, our BTs receive individualized, client-focused training provided by supervisors once they are in the field.
Our commitment to using the most effective training methods and incorporating the latest evidence-based practices sets our BT training apart from similar programs.
Our program includes five core components:
We believe high-quality training requires a strategic and deliberate approach grounded in evidence-based practice. Our training approach is based on direct instruction, a method that emphasizes carefully developed instructional sequences using explicit teaching techniques. With direct instruction, our trainers provide our trainees with clear and concise guidance on how to master new skills and knowledge while ensuring they are fully engaged in the learning process.
But direct instruction is more than just an effective teaching method. It’s also a dynamic and fun training experience that motivates trainees to learn and achieve their goals. Using this approach, we create an engaging and supportive learning environment that encourages active participation and fosters a sense of community among our trainees.
Of course, to ensure that our trainers deliver the highest-quality training possible, we have invested heavily in their professional development. All of our trainers participate in extensive training in direct instruction and receive ongoing support and feedback regarding their use of training techniques. This ensures that our trainers are always up-to-date with the latest best practices in training and can provide our trainees with the most effective instruction possible. At LEARN, we’re committed to providing a world-class training experience that is both effective and enjoyable, and we believe that our approach to direct instruction is a key part of that commitment.
Preview of Impact
We understand that the workforce is constantly evolving, and many people are now seeking meaningful and rewarding employment. With this in mind, we designed our new BT training program to provide trainees with the skills and knowledge they need to make a positive impact on the lives of their clients and their families.
The LEARN BT training program emphasizes the importance of applied behavior analysis (ABA) and its ability to create lasting change in our clients’ lives. Trainees will hear directly from BTs who work in the field and have experienced firsthand the triumphs and victories of working with families. The majority of the training program focuses on learning how to use a variety of techniques and strategies used in ABA therapy and implement them effectively to achieve the best possible outcomes for their clients. Throughout the training program, trainees will have many opportunities to demonstrate their skills and receive feedback.
By emphasizing the impact that ABA can have on clients and their families, we aim to inspire our trainees to approach their work with a sense of purpose and dedication. By providing our trainees with the tools and knowledge they need to succeed, we can help them build rewarding and fulfilling careers that make a real difference in the lives of others.
Live, Small Group Instruction
We take great pride in our team of highly-motivated, dedicated, and skilled trainers to ensure the success of our trainees. Our trainers are not only experts in their fields but also possess a wealth of experience working with trainees from diverse backgrounds with varying experiences. They have an in-depth understanding of how to create an effective learning environment that is supportive, engaging, and personalized to meet the unique needs of each trainee.
To achieve this, we use a highly interactive and engaging training approach that emphasizes hands-on learning experiences. Conducted in small groups, our live training sessions allow our trainers to provide each trainee with individual attention, support, and feedback. This approach ensures that trainees can practice and apply their new skills and knowledge and receive immediate feedback on their progress.
We believe that diversity, equity, and inclusion (DEI) are essential to creating a positive and productive work environment. We understand that a diverse workforce not only brings unique perspectives and experiences but also fosters creativity, innovation, and growth. That’s why we’re committed to supporting robust DEI initiatives that enable all employees to feel valued, supported, and empowered.
Our approach involves facilitating access to various resources, affinity groups, and training programs that promote DEI in the workplace. These initiatives include regular workshops and training sessions designed to help employees better understand DEI issues and learn how to apply best practices in their day-to-day work. Our trainers highlight the importance of DEI initiatives and encourage active participation from all employees.
Moreover, we believe that DEI initiatives are not just a box-ticking exercise but a fundamental aspect of our organizational culture. We recognize that fostering a culture of diversity, equity, and inclusion requires ongoing commitment, engagement, and action from everyone in our organization. As such, we encourage all employees to actively promote DEI and share their experiences, ideas, and perspectives with others.
Child Development & Play Training
At LEARN, we take pride in serving a diverse age range of clients, specifically young children. We recognize children are naturally curious and playful and that play is essential to their development. As such, we prioritize training our staff to engage children in meaningful and developmentally-appropriate play activities. We designed our training program to provide staff with the skills and knowledge they need to facilitate play-based learning experiences that are both fun and educational. We cover many topics, from the basics of child development to the latest approaches in naturalistic teaching. Our trainers work closely with staff to ensure they have a deep understanding of how to play with children at different developmental levels and tailor activities to meet each child’s unique needs and interests. By investing in our staff and providing them with the tools they need to succeed, we provide high-quality care to the young autistic children we serve.
Within LEARN, we’re committed to providing our trainees with the knowledge, skills, and resources they need to succeed in their careers. Our BT training program is just the beginning of a lifelong journey of learning and professional growth. We believe that ongoing education and skill development are essential for staying competitive in today’s fast-paced and constantly evolving job market.
That’s why we offer a range of advanced training programs, workshops, and continuing education courses that enable our trainees to deepen their knowledge and stay up-to-date with the latest best practices in their field. We’re dedicated to supporting career advancement and providing our trainees with the resources and guidance they need to achieve their professional goals.
Whether you’re just starting your career or looking to take the next step, LEARN is here to support you every step of the way. We’re committed to providing a world-class training experience that empowers our trainees to achieve their full potential and positively impact their communities.
Interested in working with us? Search our careers here: https://learnbehavioral.com/careers
Kerry Hoops the current President of the Autism Society of Greater Wisconsin and the clinical director for Wisconsin Early Autism Project’s Green Bay region joins us to share about a unique clinic event and what can be learned. Kerry shares details of sensory-friendly covid vaccine events that utilized assent-based practice to create a comfortable experience for children. As Kerry put it, “When it was time for the shot, that was determined by the child. We were very open and honest with the child and let them know it would only happen when they said it was ok.”
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.
Dr. Ellie Kazemi is the Chief Science Officer at Behavioral Health Center of Excellence (BHCOE), an accrediting organization focused on improving the quality of behavior analytic services. She is also a professor at CSUN, where she founded the M.S. in Applied Behavior Analysis (ABA) program. Dr. Kazemi joins us to share about the accreditation process and the importance of assessments and measuring outcomes in the field of ABA. As Dr. Kazemi discusses the value of connecting the perspectives of the families and the clients, and shares, “To measure outcomes you should see progress from different perspectives”.
For More Information:
All Autism Talk is sponsored by Learn Behavioral.
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.”
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.
By Katherine Johnson. M.S., BCBA
Senior Director of Partnerships, LEARN Behavioral
Judy Singer is an autistic Australian social scientist. In the 1990’s, seeing echoes of her mother’s struggles in herself and her own daughter, it occurred to Singer that this common thread pointed to the possibility that their differences were actually neurological traits. They were having a first-hand experience of that part of biodiversity that is the natural range of variations in brain functioning: she coined it neurodiversity.
The neurodiversity paradigm considers all brains to be normal; brain differences are simply the neurological counterpart to genetic variations in height, eye color, or hair color. Scientists consider such variation in biological traits to be essential to the health of individual populations and entire ecosystems. When viewing autism through the lens of neurodiversity, it comes to light that some of the individual differences that have been assumed to need remediation in the past, may actually be important in helping society as a whole make progress through new and different ways of thinking.
The concept of neurodiversity has been enthusiastically embraced by that portion of the autistic community who are able to speak, as it promises to alleviate some of the bias and discrimination they have experienced. Their common message? Specific words and types of support can have unintended negative effects, causing them to feel inferior, powerless, misunderstood.
Arising from these negative experiences is a more widespread understanding of how words and actions affect the private events (thoughts and feelings) of people on the spectrum. ABA practitioners are charged by the BACB Ethical Code to “treat others with compassion, dignity, and respect,” and the voices of the neurodivergent convey essential information about ways to do this.
LEARN’s neurodiversity initiative is a direct result of listening to the insights of autistic folks who are able to express their experiences of living in a society that was built for neurotypical people.
- Development of a Person-Centered ABA workgroup – Learn Leadership charged a workgroup of clinical leaders with the task of supporting clinicians in reaching our vision for a neurodiversity-informed, Person-Centered ABA approach. The workgroup includes clinicians, supervisors, and clinical development individuals.
- Forming of a Neurodivergent Advisory Committee – The first action of the Person-Centered ABA workgroup was to formalize a process for getting input from the neurodivergent community. The committee is made up of neurodivergent clinicians and non-clinicians who work at LEARN; they meet regularly to review and give feedback on articles, trainings, and other materials, and are compensated for their role on the committee.
- Co-creation of the Values Statement – The Person-Centered Workgroup and the Neurodivergent Advisory Committee co-created a values statement, entitled “LEARN Values Neurodiversity.” The statement was written in order to express our position to our clinicians and also guide subsequent actions by the Person-Centered ABA Workgroup. It was presented at an internal training and is available on our website.
- Communication – Shifting the mindset of a large organization doesn’t happen overnight. In order to connect regularly with our clinicians on person-centered topics, a portion of our monthly video message to clinicians includes information about subjects related to neurodiversity, such as ableism, assent, and including client input in treatment planning. It’s important that staff are not only hearing this information but also discussing it, so each month, clinical teams engage in discussions with their colleagues on these topics.
- Assent Leadership Workgroup – With the addition of “assent” to the BACB ethical code and the subject’s importance to treating our clients with compassion, dignity, and respect, LEARN is offering “guided exploration” groups in assent that meet regularly for four months. The intention is to create local leaders in Assent-Based Programming throughout our network.
- Treatment Plan Evaluations – Our Treatment Plan Evaluation team works hard to review clinicians’ clinical work through the permanent product of their treatment plans. These reviewers have been given resources to help them identify Person-Centered practices to promote in their feedback.
- New Hire Training – In the 2022 revision of our New Hire Training for behavior technicians, we are explicitly teaching them about neurodiversity and assent, as well as ensuring that language throughout is respectful, and that programming examples fit Learn’s conception of Person-Centered ABA.
- Autistic Voices – Throughout this process, we are having an increasing number of autistic guests on our podcast and making it a regular practice to interview autistic folks for guest blog posts. These are ways that we can listen to autistic voices ourselves and also use our resources to center those voices in the ongoing cultural conversation.
As ABA practitioners, we have always cared about our clients – helping and supporting others is our entire reason for being. In the initial years of our still-young field, that care was expressed by taking a singular approach: teaching skills to help them function in our society. As autistic self-advocates find more channels by which to make their voices heard, the themes that are emerging tell us that there is more to supporting this community than just teaching skills. For instance, using words that validate our clients’ identities and sense of self is important. We can create a positive emotional experience for the people we support during the learning process – by listening to them and giving them agency. And most importantly: where success measures are concerned, our clients’ quality of life should be central.
LEARN is listening.
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.