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”.
Trellis Opens New Learning Center in Forest Hill, MD
With over 20 years of experience providing compassionate, contemporaryABA therapy to children with autism, we’re delighted to share that we opened a new Trellis Learning Center this fall in Forest Hill, Maryland. The new center held an open house that included an official ribbon-cutting with their local Chamber of Commerce and opportunities for families to tour the facility, speak with the leadership team, and participate in fun activities. This new location offers a supportive, learning-rich environment where children with autism can work on individual skills in a group setting.
We couldn’t be more excited to support more families in the communities we serve. To learn more about where our services are located, find a location.
Janesville Learning Center Grand Opening
We’re open! 🎉 Check out the Grand Opening of our Janesville, WI Learning Center! We are so excited to offer ABA services in a clinic-based setting at our new center in Janesville.
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.
Autism Spectrum Therapies (AST) Opens 5 New Learning Centers
With over 20 years of experience providing compassionate, contemporary ABA therapy to children with autism, we’re delighted to share that we opened five new AST Learning Centers this past summer and fall in Fresno and San Marcos, California; Goodyear, Arizona; Albuquerque, New Mexico; and Clackamas, Oregon. Each new center held an open house that included an official ribbon-cutting with their local Chamber of Commerce and opportunities for families to tour the facility, speak with the leadership team, and participate in fun activities. These new locations offer a supportive, learning-rich environment where children with autism can work on individual skills in a group setting.
We couldn’t be more excited to support more families in the communities we serve. To learn more about where our services are located, find a location.
Wisconsin Early Autism Project (WEAP) Opens 2 New Learning Centers
With over 25 years of experience providing compassionate, contemporaryABA therapy to children with autism, we’re delighted to share that we opened two new WEAP Learning Centers this past summer and fall in West Bend and Janesville, Wisconsin. Each new center held an open house that included an official ribbon-cutting with their local Chamber of Commerce and opportunities for families to tour the facility, speak with the leadership team, and participate in fun activities. These new locations offer a supportive, learning-rich environment where children with autism can work on individual skills in a group setting.
We couldn’t be more excited to support more families in the communities we serve. To learn more about where our services are located, find a location.
BACA Opens New Learning Center in Indianapolis, IN
With over 10 years of experience providing compassionate, contemporaryABA therapy to children with autism, we’re delighted to share that we opened a new BACA Learning Center this fall in Indianapolis, IN. The new center held an open house that included an official ribbon-cutting with their local Chamber of Commerce and opportunities for families to tour the facility, speak with the leadership team, and participate in fun activities. This new location offers a supportive, learning-rich environment where children with autism can work on individual skills in a group setting.
We couldn’t be more excited to support more families in the communities we serve. To learn more about where our services are located, find a location.
SPARKS Opens New Learning Center in Manassas, VA
With over 10 years of experience providing compassionate contemporaryABA therapy to children with autism, we’re delighted to share that we opened a new SPARKS Learning Center this fall in Manassas, Virginia. The new center held an open house that included an official ribbon-cutting with their local Chamber of Commerce and opportunities for families to tour the facility, speak with the leadership team, and participate in fun activities. This new location offers a supportive, learning-rich environment where children with autism can work on individual skills in a group setting.
We couldn’t be more excited to support more families in the communities we serve. To learn more about where our services are located, find a location.
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.
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.
