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.”
ABA
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.
A Closer Look at The BHCOE
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.
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.
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.
Neurodiversity – Origins and Impact
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 Response
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.
To learn more about neurodiversity, check out our other blogs “Voices for All: Ash Franks” and “Neurodiversity: What It Means, Why It Matters.“
BHCOE Accreditation: Understanding How Quality Care is Measured in ABA
Sara Litvak, Founder & CEO of Behavioral Health Center of Excellence, the only ABA-specific accrediting body joins us to discuss the different ways quality is measured in the accreditation process. This discussion delves into the importance of not only clinical standards but the needs of clients and their families. As Sara shares, “We are here as a support for parents who are receiving ABA. We aim to ensure their needs are protected and that all patients get excellent care.”
For More Information:
https://www.bhcoe.org/resources/
https://www.facebook.com/BHCOE
https://www.instagram.com/bhcoe/
All Autism Talk (allautismtalk.com) is sponsored by LEARN Behavioral learnbehavioral.com
Voices for All: Ash Franks Talks about Supporting Autistic People While Being Autistic and Her Role on LEARN’s New Neurodiversity Advisory Committee
In September 2020, LEARN convened a group of neurodivergent staff to form our Neurodivergent Advisory Committee. The committee reviews and gives feedback on matters relating to neurodiversity and other person-centered ABA topics and was instrumental in the content, messaging, and visual design of LEARN’s Neurodiversity Values Statement. We asked Ash Franks, a member of the Neurodivergent Advisory Committee, to share her thoughts with us.
HI, ASH! FIRST, I’D LIKE TO ASK YOU WHAT IT MEANS TO YOU TO BE AN AUTISTIC PERSON SUPPORTING OTHER AUTISTIC PEOPLE?
Supporting other autistic people while being autistic means listening to what they have to say, however they communicate it, whether it be through an AAC device, sign language, PECS, or verbal language. It also means giving them breaks if they need it, and allowing them to use tools to cope (e.g. stuffed animals, headphones, weighted blankets, etc.). Looking back on my experiences as an autistic child has been very helpful in trying to help children who are at AST.
HOW DOES BEING AUTISTIC INSPIRE YOUR WORK IN ABA?
Being autistic allows me to see different perspectives and ideas compared to neurotypical people, as they tend to think differently than I do.
TELL US A LITTLE BIT ABOUT THE NEURODIVERGENT ADVISORY COMMITTEE AND HOW IT WORKS.
Basically, we are trying to re-vamp ABA materials through a more neurodivergent-friendly lens, so we can make our treatment as effective as possible. Having autistic people and other neurodivergent people look at ABA therapy through their eyes allows them to explain what works and what doesn’t work. This way, we can work to have treatment be as effective, safe, and as fun as possible for everyone involved. Having BCBAs see the autistic perspective is important because we have direct experience with what worked for us growing up versus what didn’t and might be able to help streamline the treatment to be as effective as possible.
CAN YOU GIVE ME AN EXAMPLE OF SOME FEEDBACK YOU HAVE GIVEN IN YOUR ROLE ON THE COMMITTEE?
I tend to give feedback on the more artistic and creative side of things, as I am very geared towards having an eye for creative things in the world.
FROM YOUR PERSPECTIVE, WHY IS IT SO IMPORTANT TO INCLUDE AUTISTIC PERSPECTIVES IN OUR FIELD?
Including autistic people in ABA is super important because we need to account for neurodivergent perspectives to make treatment as effective as possible. Since I am autistic, I can give a firsthand account of what has personally worked for me throughout my life, and what hasn’t. I myself was never in ABA therapy growing up, but I did other types of therapies that I also have found helpful from time to time.
WHAT ARE SOME OTHER PLACES IN OUR SOCIETY THAT YOU THINK IT WOULD BE HELPFUL TO LISTEN TO THE AUTISTIC PERSPECTIVE?
I think listening to autistic perspectives in the workplace would be very helpful. I think having a quiet room for staff that has sensory toys specific for staff would be very helpful, also maybe including a comfy place to sit with a weighted blanket would be good too. Another place it would be helpful to listen to autistic people is when it comes to shopping at malls, since malls can be overwhelming for most autistic people. I know some stores have “quiet” shopping hours where they reduce the lighting and turn off the music, and I really wish more places would do this.
ASH, THANK YOU FOR YOUR THOUGHTS AND FOR THE EXCELLENT WORK YOU’RE DOING ON THE NEURODIVERGENT ADVISORY COMMITTEE!
Ash Franks is a Behavior Technician for Learn Behavioral. Ash works in AST’s Hillsboro, Oregon location. Outside of work, she enjoys photography, cooking, video games, and spending time with family and friends.
What is Contemporary ABA?
RONIT MOLKO, PH.D., BCBA-D
STRATEGIC ADVISOR, LEARN BEHAVIORAL
It has been said that history is written by the victors. The colonists won the American Revolution, and so the war has been cast as a noble struggle to escape the yolk of tyranny. Had the British won, history books today would memorialize the conflict as the empire’s rescue from the clutches of ungrateful rebels.
Likewise, able-bodied people comprise the dominant culture in America; thus, we define “normal” along the contours of able-bodied activities. We consider, for example, an autistic mind or a visual impairment that enhances other senses to be of diminished value. In fact, they may simply be different ways of understanding and interacting with the world.
For many of the 60+ million Americans who have some kind of disability, this is a challenge. They are forced to fit their round life into the square hole of able-bodied culture despite the ease with which culture could accommodate everyone, including those with disabilities.
Ableism and Ableist Misconceptions
The inability of the able-bodied to recognize that not everyone is like them has given rise to a new label – ableism. This is the equivalent of the racism White Americans exhibit by failing to recognize the advantages they have versus people of color. We must be attentive to eliminating assumptions that reflect an able-bodied view of the world that does not pertain to everyone.
People with disabilities tell me that ableist thinking includes a variety of knee-jerk assumptions and misconceptions, including this one: that people with disabilities have no autonomy and constantly need help, even if they don’t ask for it.
Another version of this is the idea that people with disabilities must constantly explain themselves, for example by detailing how they became disabled, or that they have average or superior intelligence even though they do not communicate verbally. It is also an ableist misconception that all disabilities are visible. This perpetuates stigmatization and mistreatment of people with mental illness, which is, after all, no different from physical impairment except that it affects the brain. Taken together, these false ableist impressions accrue as barriers to inclusion and equity for disabled people.
ABA Intervention
Applied Behavior Analysis (ABA), considered by many to be the gold standard of treatment for autism, has as its ultimate goal providing autistic individuals with the skills to function at their highest potential and live as independently as possible. The field of ABA has decades of empirical evidence to support its efficacy in teaching new and necessary skills and reducing challenging behaviors that interfere with learning.
Recently, ABA has increasingly become the target of much controversy as self-advocates are speaking up about their personal experiences with ABA and the rejection of the notion that teaching autistic individuals the skills we deem necessary without their input and self-determination is erroneous. Some advocates for this community argue that independence without happiness is a hollow goal, and that autistic individuals should decide what outcome they want to achieve. Becoming as much like everyone else as possible may not be it.
ABA, which is essentially the science of good teaching, has a long history and was originally developed in the 1960s by a group of researchers at the University of Washington. ABA was used to treat individuals with developmental disabilities and initially was a rigid, highly-structured and teacher-directed program which led to some of the negative experiences and associations with ABA. Historically, for example, ABA was used to reduce or eliminate “stimming” – repetitive physical movements and sounds that may soothe and reduce anxiety. We now better understand that stimming helps autistic individuals manage their sensory processing and their environments.
Just like in other areas of medicine and science, the field of ABA has advanced in a significant and meaningful way to become a play-based, naturalistic, family-focused and individualized, contemporary treatment that is tailored to the unique needs and goals of each individual. Another hallmark of a good ABA program is the collection and reporting of data to demonstrate efficacy. Most payors today require providers to demonstrate success, validated by parents, of the participant measured by obtaining and maintaining goals that are developed by the provider and family together. If your service provider is not providing a program that fits this description, you are likely not in the hands of a provider who is adhering to best and current practices.
As the ABA provider community has the opportunity to learn from more adults, something that was not available when this science was first being applied to autism, there are more and more opportunities to adjust and modify services to meet the needs to each individual. The idea that we discard a technology that has successfully treated thousands of individuals because of negative experiences is akin to suggesting that we eliminate an entire specialty of medicine because of some failures of treatment. Having said that, service should always be informed by the individual receiving them, and their advocates who have their best interests at heart.
Every negative experience is unacceptable and should be heard so that changes can be made to ensure an optimal experience for future clients. Good ABA programs are client-centered and solicit the consent and input of all involved. As you consider treatment for your family member or yourself, do your research and ask your provider the important questions:
o Will I participate in determining the goals of treatment for myself/ my child?
o How are your staff trained?
o How is my child’s program developed? Do all clients receive the same program or are they individualized?
o Will there be parent goals as part of my child’s program?
o How often is my child’s program modified or revised?
o How is data collected and reported? How often will I see data on my child’s progress?
Your child’s program should be client-centered and future looking which means that your family and relevant caregivers are providing input into your child’s strengths and challenges, and that you and your child are helping to guide the goals of his/her program based on your preferences and needs.
The science of ABA has a long history with decades of research to support its development and evolution. While ABA is most widely known in its application to autism, ABA was developed, and has been applied, to address many circumstances regarding behavior that matter to society. ABA is applied in many different areas including mental health, animal training, organizational behavior management, marketing, forensics, sports, and physical health, to name a few. Just as other areas of science and medicine advance and application of treatments change, so has the field of ABA. Many lives have been impacted by ABA for the better. It is incumbent upon the professional community to listen, learn, and evolve its practice so that their services are as relevant and effective as possible. After all, the purpose of ABA is to help consumers of these services achieve goals they define as meaningful and helpful.
Perspectives: Why Access to ABA Is a Matter of Social Justice
BY NATHAN FRANKLIN
MANAGING BEHAVIORAL TREATMENT TECHNICIAN, WEAP, MILWAUKEE
As our country starts the process of distributing vaccines for COVID-19 and re-opening our cities, many people are hoping that 2021 delivers a return to normal. We are getting that first glimpse of a promising horizon. But instead of trying to return to the old normal, we have a chance to establish a new and better normal, informed by the experiences of the past year.
The coronavirus pandemic brought many new problems to our lives in 2020, but it also exposed problems that have long existed, particularly the racial inequities that are so deeply and structurally rooted in our country.
One of the more well-documented areas of racial disparities is in the area of health care, including behavioral treatment for autism spectrum disorder (ASD), with which I am personally involved. I’ve spent the last 10-plus years providing applied behavior analysis (ABA) therapy to children with autism in Milwaukee at Wisconsin Early Autism Project (WEAP). Studies show that Black and Hispanic children are diagnosed with autism at an older age than white children, are more likely to be misdiagnosed initially, and are less likely to receive an accurate diagnosis at all. Because the best outcomes for children with ASD depend heavily on early diagnosis and treatment, reading these studies was revealing—and brought the issues of racial justice to the forefront of my personal focus.
As a white man working with many children and families of color, I find the reality of a delayed or even absent diagnosis alarming and upsetting—and consider access to ABA a social justice issue that I can personally and directly help address. While I realize the causes of these disparities are complex and must be understood through a larger lens of historic and systemic racism in our societal institutions, I believe we can all make progress addressing these inequalities by starting in our own circles to seek understanding and solutions.
The good news is that by many measurements, the diagnosis gap is beginning to show signs that it is closing, though the problem is far from solved. Getting a diagnosis is only the first step, however, after which actually accessing the necessary services is key. And here again, race, ethnicity, and socioeconomic status can affect access to treatment and the quality of treatment.
For a long time, I took for granted that the vast majority of children I’ve worked with have been Medicaid-funded. Unfortunately, many providers simply do not accept Medicaid clients. While I’m grateful to work for a company that is the exception to that rule, I would call on the federal government, state government, and providers to do more to increase access to services. No one should be denied services because of their income, and since the economic disparities in this country are tied to historic and structural racism, it is not just a matter of social justice but also racial justice to ensure that quality treatment is available to everyone who needs it.
There are other obstacles that can contribute to the lack of access to ABA. For example, many ABA services take place in a client’s home, creating an unintentional barrier for working families, given that home-based services require the presence of a parent or guardian. For families who need multiple people working multiple jobs just to make ends meet, this requirement alone can prevent them from accessing services.
One possible solution is to provide opportunities for treatment that children can receive without their parent or caregiver. In the beginning of 2021, WEAP opened a learning center in the city of Milwaukee, giving communities of color the more convenient access they didn’t previously have but needed. Access is important, and the difference between traveling across a city and having resources in your own neighborhood can be the difference between receiving services—and not.
The services provided for children with ASD are no exception to the general rule of racial inequities, though the research and our understanding are only beginning to develop. For anyone inclined towards research, this is an open invitation to look into these issues more deeply. The experiences of the past year have given us new perspectives to understand that solving a widespread problem requires a combination of research, structural changes, and personal responsibility to do our part in our own worlds. For those of us heavily involved in the world of ASD, this historic opportunity to pursue a new and better normal calls on us to recognize, understand, and address the injustices in our field—and to act with a sense of urgency to ensure that our treatment options continue to improve not only in quality but also in equality.
