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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.

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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.”