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.

Five Tips for Selecting the Best Holiday Gifts for Kids with Autism

Buying the perfect gift for kids and other loved ones can be challenging, and this can also be true when buying gifts for kids with autism. To help make your gift-giving easier, here are a few helpful tips to keep in mind when purchasing gifts for autistic children.

Focus on what brings the person joy.

Research shows that incorporating interests and preferences into the learning and play environment of kids with autism can increase positive behaviors and aid in skill acquisition (1). With that said, we can capitalize on what someone already likes. For example, if a child likes dogs, shop for games, activities, or toys that are dog-related. If a child enjoys swimming, activities that involve water play may be a hit (e.g., water tables, sprinkler toys, water beads, grow capsules). Alternatively, if a child is sensitive to loud noises, a toy fire truck with a siren may not be appropriate. Ask friends and family of the person for whom you are buying the gift what that person generally likes and/or dislikes.

Focus on the person’s strengths and abilities.

Many toys come with age recommendations, and while these recommendations are helpful, they might not always lead you to the perfect gift. A good rule of thumb when purchasing a gift is to consider the age and the development of the person for whom you are buying a gift. For example, the game “Apples to Apples” would not be developmentally appropriate for a non-verbal teen, even if it is an age-appropriate game. When looking for the right gift, focus on the person’s strengths. For instance, if the non-verbal teen mentioned above is great at drawing, then a sketch pad or an adult coloring book could be a more appropriate gift. If you are unsure about the child or teen’s strengths, ask a friend or family member of the person for whom you are buying the gift about their specialty areas and abilities.

Note: Be sensitive to how family and friends of a child and teen with autism may feel when being asked questions about the skills of their loved one. When asking questions, always frame them from the perspective of accomplishment (e.g., what skills have they mastered) and not deficit (e.g., in what areas are they delayed) to be supportive and respectful of their growth and development.

Be mindful of behavior triggers and safety risks.

Some children with autism engage in behaviors that put them or their loved ones at risk of harm. For example, if a child engages in pica (e.g., eating nonfood items), gifts containing small objects may pose as a choking hazard. Another example is if a child engages in aggression towards others, gifts with violent content may not be appropriate, as additional exposure to violence may interfere with their goals. Alternatively, a sensory-seeking child may benefit from gifts that allow them to stim. For example, if a child rocks back and forth, a swing may be a great way to meet their sensory needs. Additionally, certain objects can elicit sensory sensitivities which can trigger behaviors in some children and teens with autism (e.g., loud noises, highly preferred items, phobias, etc.). Ask friends and family of the person you are buying the gift for if there are any behaviors that possess a safety risk that need to be considered before purchasing a gift.

Focus on toys that encourage interaction with others.

Social deficits are a defining characteristic of autism. When gift-giving, try to purchase gifts that encourage social interaction. While almost any toy or game can be turned into a group play, certain activities may be more conducive to social interactions than others. For example, instead of buying a computer game, consider purchasing “Bop It,” which is an electronic interactive game that can be played among a group of friends or family.

Focus on finding new things they will love.

Children and teens with autism sometimes have restricted or limited interests (e.g., only talking about trucks or only playing with dinosaurs). To help build upon their current interests to introduce them to a wider range of activities, try finding new activities similar to their current interests. For example, if a child’s favorite activity is playing with “Play-Doh,” kinetic sand or slime may be an appropriate gift to help expand their interest due to its similarity in form of play. Ultimately, gifts that will provide new experiences may act as potential new reinforcers (e.g., stimuli that increase behaviors) and could significantly enrich the child or teen’s learning environment.

Resources

Increasing Task Engagement Using Preference or Choice-Making
Some Behavioral and Methodological Factors Affecting Their Efficacy as Classroom Interventions

For more holiday tips, check out Reducing Holiday Stress for Families of Children with Autism and Preparing for Holiday Meals.

Design Element Shape

And to stay connected, join our newsletter.

Help Your Child Build Friendships With Kids With Autism

The following is an interview published by Chicago Parent with LEARN Behavioral Chief Clinical Officer Dr. Hanna Rue, Ph.D., BCBA-D.

By: Claire Charlton

Your child likely has the opportunity to build friendships with kids on the autism spectrum. How can you help cultivate these unique relationships?

This back-to-school season, your child is settling into a new routine alongside children of many abilities, and as they are making new friends, now is a great time to encourage them to reach out and build a friendship with a child with autism. Because autism is a spectrum disorder, your child’s classroom, cafeteria, chess club, or ballet class will likely include a child with autism, says Hanna Rue, Ph.D., BCBA-D, Chief Clinical Officer with LEARN Behavioral.

Current statistics show that 1 in 44 children has been identified with autism spectrum disorder (ASD) — for boys, the prevalence is four times higher and numbers vary from state to state, according to data from the CDC. “I’m never surprised when a parent comes to me and says their child has met a peer with typical autism characteristics in the classroom,” says Dr. Rue.

Kids with autism have strengths and challenges just like their neurotypical peers and can bring a lot of value to a friendship. “What I have found is that neurotypical kids are amazed that some kids with autism have the same special interests as they do,” Dr. Rue says. “Maybe they are passionate about zoo animals and can provide all sorts of information that neurotypical kids are impressed by.”

Each child is different and not every child mixes well with groups of peers. A child with autism is often able to look past differences or idiosyncrasies that can put off neurotypical peers, which makes them a good source of friendship for kids who struggle to fit in, Dr. Rue says.

While it may appear that kids with autism prefer to play alone, they really do enjoy companionship and sharing their interests with others. Here, Dr. Rue shares some wisdom about how to help your child build friendships with kids with autism.

How to make it happen

A child with autism may experience sensory sensitivities that neurotypical peers can empathize with. Loud noises, loud music, bright lights, even transitioning between activities can present challenges for some children.

“Sometimes a child with autism has challenges with communication and that can cause distress on either side,” Dr. Rue says. “I always tell folks if they are working with kids to develop friendships to allow for plenty of warm-up time.”

When planning a playdate, take it slow. Show your child’s new friend a quiet room in your home where they can take a break if needed, and recognize that if they take this break, it likely signals that they are overwhelmed, not disinterested. Communicate to your own child that everyone is frightened or overstimulated by something at some point and help them recognize their own fears or needs.

“I have seen some amazing pure human kindness across developmental stages,” says Dr. Rue. “When a child with autism has a meltdown, their friend can just sit and be in close proximity. They recognize independently that their friend is having a hard time. Or they assist with transitions through prompts like ‘follow me, sit at my table for lunch, hold my hand so you don’t get lost.’ Kids are pretty intuitive and can recognize that just being there and showing the way is a huge help.”

Parent encouragement can help blossoming friendships grow. Here’s what parents can do to support their children as they make and sustain friendships with kids with autism.

Talk about diversity early and often

When a parent is aware of their own child’s developmental level, they are better prepared to help them make friendships with anyone — and be inclusive on the playground and in the classroom, Dr. Rue says. This is best achieved by talking about differences on a regular basis.

“It’s important to introduce your child to diversity, especially if you live in an area where there isn’t a lot of diversity,” she says. “Read books, watch videos, and have open conversations about differences. In addition to talking about skin color, you can talk about different ways that kids communicate with each other, including the idiosyncrasies of flapping, body rocking, and squealing because this is a way of expressing joy or frustration.”

Model inclusive friendships

“We always have lots of opportunities to interact with other humans in our communities, from the playgrounds to the grocery stores,” Dr. Rue says. “This is the time to model appropriate interactions and show empathy, and then discuss it with your child.”

For younger kids, Dr. Rue is a big fan of Sesame Street’s inclusion of a character named Julia. “Julia has autism and I love for parents of neurotypical kids to watch Sesame Street with younger children and talk about Julia and how she is different. It’s a great opportunity for a shared moment of watching and talking about differences and acceptance.”

Offer a sympathetic ear to the child’s parents

Parenting a child with autism is stressful. “Research suggests that they experience more stress on a daily basis than parents of a child with a terminal illness. That’s a lot. Any small gesture, like saying hi or offering coffee or even just sitting and listening. Being an ear is very helpful,” Dr. Rue says.

Finally, have patience. Playdates can be easy but allow time for your child and their new friend to experience similar interests over a few visits. Help the other parent know that you understand and won’t give up after one meltdown or challenge.

“It’s so important to recognize that individuals with autism are all around us, doing great things,” says Dr. Rue. “We need to embrace that and learn about how to be supportive.”

For more school-related content, check out our blogs, “Five Steps to Help Your Child with Autism Make Friends” and “Back to School: Homework Tips.”

Back to School: Homework Tips

Heading back to school can bring a number of challenges for our kids, especially those with autism. Navigating new environments, teachers, therapists, and peers can each be a bit scary but full of opportunity.

One very common request we get is about supporting autistic kids with their homework. How do you get your child to do his or her homework? There are many strategies to help keep your child on task; all of them tried and true. Here are some to consider:

Make It Easier by Sticking to a Schedule

Set a schedule and stick to it. Like any other priority, if homework always occurs at the same time, and the routine becomes ingrained, your child will eventually accept the routine. This is true for teeth brushing, baths, and all of the chores children prefer to avoid. Initially, it is hard to hold the line on the schedule, but it sure pays off later.

Reinforce the Message That Homework Is Important

Set the stage and set the tone. Show your child that homework time is important and respected. Give them a special place to sit. Ask siblings to be quiet or leave the area during homework time. Check in frequently to see how they are doing and intersperse praise throughout homework tasks. Show them that you care and are invested in their homework efforts, and help them feel successful and competent.

Motivate with Kindness

Be firm but encouraging. Everyone tends to push back when they are nagged. Try to avoid nagging when you are frustrated by your child’s efforts. By observing your own behavior, you can better support theirs. You can set expectations for what the homework routine looks like, but make sure to be encouraging and motivating, too. Remind your child what you believe their strengths are and why you are proud of what they are learning.

Positive Reinforcement is Powerful

Use rewards. It is OK to reward your child for completing their homework. They are doing something difficult every day. Consider giving a reward for being successful at participating in homework time (not getting everything correct). Eventually, as homework time becomes easier, you can shift rewards to more academic goals. It does not have to be an ice cream sundae. Find out what they might like to do with you after they are done. This can be an opportunity to consider setting aside quality time that you will enjoy.

Every Opportunity for Choice Increases Compliance

Giving choices has been proven to increase motivation. What choices can they have during homework time? It is important for you to keep the time and the expectations the same. But, can they choose where to sit? Can they choose what materials to write with or write on? Can they choose what task to begin with? Also, consider letting them choose their reward as well. Give them at least three options. Empowering them in this way can be very powerful. The more control they have over the task the more motivated they will be.

Interested in more back-to-school tips? Check out our blogs, “Five Steps to Help Your Child with Autism Make Friends,” “This School Year, Build a Trusting Relationship with Your Child’s Teacher,” and “Tips for Reducing Back to School Anxiety.”


 

Tips for Reducing Back to School Anxiety

Getting ready for the new school year can be a hectic and exciting time. Transitioning from the extra playtime and novelty of summer back to the routine of the school year can be challenging. For children with autism (and their parents), all this change can feel overwhelming.

Here are some suggestions for how to help ease your child’s back-to-school anxieties:

Get a Sneak Peak
Scope out the school and classroom in advance. If your child is going into a new classroom, ask to visit it at least once before the first day of school. If transition has been a struggle in the past, consider taking as much time as your child needs to explore the classroom. Make it as much fun as possible, playing in each of the new areas.

Check Out Seat Assignments
For older children, ask the teacher if a seat assignment has been made. Do some enjoyable activities in that seat. If familiar classmates will be in the room, show where they will be sitting, too.

Rehearse New Activities
Find out from the teacher what new activities are planned. Then, prepare your child by performing, practicing, and talking about them. This rehearsal will reduce anxiety when the new activities come up in the first week of school.

Anticipate Sensory Overload
The noise and chaos of a typical classroom can sometimes be a bit much to handle. Establish a plan for what to do in this situation – perhaps there is a quiet room where your child can “take a break” for a short time.

Volunteer in the Classroom
Many teachers welcome assistance from parents. If your child’s teacher welcomes volunteers (and your schedule permits), your presence may be a source of comfort to your child during those challenging first weeks.

Going to school can pose many challenges for children with autism, as well as offer countless opportunities for building crucial social, language, and academic skills. Be positive and encouraging, and your child will be off to a great year!

Looking for more school-related tips for your child with autism? Check out our blogs, “Five Steps to Help Your Child with Autism Make Friends” and “This School Year, Build a Trusting Relationship with Your Child’s Teacher.”

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.”

Addressing Health Equity in ABA Treatment Part I: A Black Mother’s Experience

LEARN is committed to fostering a culture that embraces what makes us each unique—be it race, ethnicity, gender/gender identity, sexual orientation, religion, national origin, disabilities/abilities, or socioeconomic background. LEARN aims to acknowledge the lived experiences and diversity of perspectives of our staff and welcomes our teammates to share their story to help foster conversations about diversity, equity and inclusion in our communities.

By: Asia Johnson, BCaBA, Autism Spectrum Therapies

Asia Johnson (she, her, hers) is an Assistant Behavior Analyst in AST’s greater New Orleans, Louisiana region and the co-chair of LEARN Behavioral’s DEI Employee Resource Group.

Walking on her tiptoes was interesting but cute. Rocking back and forwards raised my eyebrows. But the repetitive “I’m going to stop, I’m going to stop,” felt like weights pulling on my heart.

I had never heard the word autistic before. Little did I know that in a matter of months, the diagnosis of autism spectrum disorder (ASD) would be commonplace. I would sit in my living room with tears in my eyes and my phone in hand watching my daughter attempt to self-regulate. I felt helpless. For days this cycle would continue, leaving me uncertain if I was a good mother. I revisited each trimester of my pregnancy, actively attempting to re-evaluate anything I may have done wrong.

A mom of two with limited resources but a Medicaid card ready to go, I assumed it would be a walk in the park to get my daughter evaluated. I naively thought they would immediately tell me what was causing the concerns and provide tools to assist her. I imagined myself falling backwards into a hammock free from the weight of the world only to fall through the very net I assumed would hold me up. I was told there would be a nine-month wait before I’d receive a call about the evaluation. I was devasted. Even more, devasted to learn that if I had private insurance, I could have achieved a diagnosis in a few weeks.

As a Black woman who experienced medical malpractice during my pregnancies, I was on edge. I wasn’t sure I could trust clinicians to have my best interest at heart, let alone my child’s. With the pending evaluation, I wanted help but preferred help from someone who looked more like me. I kept wondering how a white female could relate to my child or me. Culturally we are different, from the way we comb our hair to how we greet another person.

When diagnosis day finally arrived, I was elated to put a name to all the restless nights. My daughter was diagnosed with autism spectrum disorder. I left that day with reassurance that I was indeed on the right track. But as I toured different facilities, I did not see anyone that looked like us. This feeling left me disappointed. No one in my family had walked this path, so I had no help with guidance or insight, but I was determined to obtain some help. As a parent, we are tasked with some minor and some major decisions to make on our children’s behalf; making the natural choice to seek applied behavior analysis (ABA) services was a significant decision in my eyes.

While I was grateful and relieved to finally have a diagnosis, I soon had a new concern. I quickly learned that the field of ABA lacked diversity within leadership roles. The most recent demographic data report by the Behavior Analyst Certification Board (BACB), reports 70.05% of certificants are white, with the remaining identifying as Latinx (10.56%), Asian (6.85%), Black (3.93%), Pacific Islander (0.38%), and American Indiana (0.28%).

My daughter’s primary struggle was with receptive communication. She could speak but would often talk at people. Her conversations would lead to questions she overheard on television: “Did you know your heart is located in your diaphragm?” However, my child was rarely truly interested in the actual response; if she was, she didn’t wait long to receive the answer before jumping in with another medically driven question. It seemed as if her focus was on the oohs and ahhs or the “wow, how smart” conversations that would follow.

ABA was described to me as a treatment option using empirical studies to promote behavior changes among people living with autism spectrum disorder (ASD). ABA included various treatment settings, and my daughter was provided two options. Option one was to have a behavior technician come into our home. The clinician explained how they would use ABA practices to decrease her comorbid diagnosis of sibling rivalry. Option two was an after-school social skills group to target her ability to reciprocate verbal responses when communicating with others. However, both did not resonate with my lifestyle nor my views as a Black parent, especially with the syntactic structures and linguistics I noted in our brief conversation. I often wondered if my family’s values would be accepted or would I have to have a practitioner come into my home and encourage their societal norms, and that was not something I was willing to accept. As a single mom, I also pondered how I would be able to bring my daughter to a social skills group while working a full-time entry-level job.

I wasn’t wrong to worry. Research shows that Black Indigenous Persons of Color (BIPOC) families and those of low socioeconomic status may encounter issues with inappropriate treatment delivery because of different cultural perspectives. I knew BIPOC families receiving treatment from white practitioners could often face implicit biases because of the country’s systematic racism, which frightened me. Unfortunately, the data says  white clinicians are likely to make assumptions regarding treatment based on stereotypes and their own lived experiences, leading to inaccurate recommendations. So, I did not move forward with ABA services. I did not feel any facility I visited had clinicians who knew how to properly teach my brown-skinned child how to speak the English language, consistent with my families’ syntactic structures.

This pivotal moment in my life shifted my perspectives and my professional journey. I decided that I could (and would) become the Black clinician I once sought. My journey has been harrowing, and often times I still feel like I remain the elephant in the room. But today, there is a peek of light at the end of the tunnel.

When parents embark on a journey designed to make socially significant changes in their child’s life, resistance is likely to happen when approached by a white clinician – especially in southern regions. The south has been known for racial divides and limited resources for Black communities. Southern states have long represented large Black populations and are often referred to as the Black Belt.  Nonetheless, Black patients continue to fight a battle for health equity and justice. ABA services are no different; the Journal of Autism & Developmental Disorders found that African-American children with autism were diagnosed an average of 1.4 years later than white children and spent eight more months in mental health treatment before being diagnosed.

BIPOC patients deserve support in their fight for equal services. BIPOC patients deserve consideration when formingeffective treatment plans. After a long road to a proper diagnosis, families should not face additional challenges in teaching their children the tools necessary for productive and responsible citizenship consistent with their cultures.

My goal as a clinician has always been to inform the world of societal differences that may impact treatment modalities. One example is the lack of acknowledgment often witnessed when practitioners teach verbal and behavioral skills. Often, Black individuals are forced to code-switch. When practitioners not familiar with the cultural nuances in language, work in some homes, they may dictate using what they are familiar with. Code-switching is exhausting, yet many Black individuals are forced to use the “standard language” society deems acceptable in a field focused on effective treatment. As a Black woman, I’m aware of this struggle (and have had to do it in my own life and work). I’m even more aware and conscious that it may be more challenging for those who are autistic to change their behavior readily, let alone the spoken language they are accustomed to hearing.

My experience as a Black Medicaid recipient who crossed various obstacles with my daughter’s diagnosis and treatment process encouraged me to seek out a company devoted to expanding diversity when I finally received my certifications. I am now a Black clinician striving for continued growth with ABA services in the south. I am hopeful for change as I continue to acknowledge cultural differences within my treatment plans.

LEARN pledges to create a community centered around trust, respect, tolerance, and empathy. Read more about LEARN’s DEI journey in our 2021-22 DEI Annual Report and find out how we are investing in our clinicians cultural competence and increasing the diversity of our clinical team. Together, we’re better.

Building Social Skills During Summer

School is out! Let summer break be a great opportunity to continue your child’s learning and growth.

While summer can bring parents a welcome relief from making lunches and school drop-off and pick-up, it also offers time for kids to build valuable skills. Social skills programs are offered in several cities by different service providers and can offer a structured, play-based environment for children to build essential social, communication, cognitive, and sensory skills. Kids have fun and make friends as they learn while maintaining a helpful routine for themselves and their parents.

Many skill-boosting summer programs take place in group settings that are similar to the school environment, while still providing one-to-one support. These specialized programs promote collaboration and inclusion of peers and some welcome siblings, too.

Make Friends

Social skills programs provide activities that encourage and reward the building of social relationships rather than individual play. Children are grouped with other kids of the same age group and skill level, enabling them to share in age-appropriate games, activities, and communication. Groups are led by highly-trained staff, known as behavior technicians (BTs), who are overseen by behavior analysts. BTs encourage kids to get out of their comfort zone and try new things.

Stay Mentally and Physically Active

School breaks can impact children academically. The “summer slide” as it is called, refers to a loss of learning that students experience during the summer months. Social skills programs can help children stay mentally and physically active. While promoting positive behaviors and peer interaction, physical activity is suggested to improve self-esteem and general levels of happiness.

Improve Motor Skills

Engaging in physical play and teamwork exercises can also support overall motor skills, which support many everyday activities. This can help children feel more confident and capable.

Behavior Management

By consistently promoting positive behaviors and language, a child can learn what they can do rather than what they cannot do. Social skills programs offer valuable learning opportunities for kids to communicate their needs and engage in behaviors that help them in daily activities and in different environments.

Click here for other summer-themed blogs to support your family this season.


7 Tips for Creating Summer Fun For Autistic Kids

Summer is a few short weeks away! The joy of completing the school year also brings the challenges associated with unscheduled days, unpredictable new environments, and the unexpected elements of the season.

Here are seven helpful tips for planning your family’s summer that we hope will help create more fun and reduce stress:

1. Maintain Some Structure

Try to maintain your child’s typical eating and sleeping schedule as much as possible. It’s not easy to stick to a schedule during summer, especially as this is a time when you want to let go a bit and relax. If you can maintain the basic structure of your child’s routine with eating, sleeping, and some routine in the day, you are less likely to have an overwhelmed or anxious child.

2. Be Clear on Your Goals

You may want to create opportunities for your child to build social skills. Summer is a great time to enroll your child in social skills programs where they can participate in small-group activities and learn how to navigate relationships while receiving one-to-one support.

3. Prepare in Advance

Whenever possible, it can be helpful to familiarize your child ahead of time with the destination by using photographs, videos, etc. If your child has never flown or stayed in a hotel before, practicing these on a small scale can be helpful. Some airlines offer practice travel for families with autism. You may also want to visit a hotel room before an overnight stay.

4. Travel Safety

It‘s important to acquaint your family with your vacation details, such as where you‘ll be staying during your trip. If you are staying with family or renting an apartment or home, be sure to check that each door has a lock and that the perimeter of the house is secure. It’s also a good idea to familiarize yourself with other parts of the property, such as areas that have access to water and other roads. Knowing these will help keep your child’s safety top of mind should they explore the area.

5. It Takes a Village

While vacationing or sunbathing with friends or family, welcome them to become part of your team. By sharing your concerns and requests for support, your community can be mindful and diligent with any possible safety or wandering risks. Helping others understand how they can best support you and your family, can make your experience more relaxed and enjoyable.

6. Get Support from Your Team

Remember to use what works for your child while planning your family’s activities.  If you‘re working with an ABA provider, ask for assistance with goals that support a specific outing or trip.

7. Don’t Forget to Have Fun!

Summer is the perfect time to maximize learning opportunities, access resources that may have been limited due to school schedules, and work on intensive programs that require a larger time commitment.

While that is all true, it’s still important to find time to have fun, enjoy the activities summer has to offer, and watch your child thrive!

Here are some additional resources to help make the summer season a success for the whole family:

Our Heart Goes Out to Texas

Resources for families in the wake of Tuesday’s tragedy in Uvalde, Texas

We all have been impacted by yesterday’s devastating tragedy in Uvalde, Texas. In times like these, we are often feeling many things like anger, anxiety, fear, grief, and sadness. It can be incredibly difficult as a parent or caregiver to know how to support your young loved ones and how to explain such a terrifying situation to them. We wanted to provide you with some resources to help your family navigate this difficult time.

Websites 

Visit the links below to learn how you can support your child when tragedy happens:

How to talk to children about shootings: An age-by-age guide

How to talk to your kids about the Uvalde school shooting

Texas school shooting: How to help kids get through unspeakable horror

15 Tips for Talking with Children About Violence

Helping children cope: Tips for talking about tragedy

How To Talk To Kids About Tragedies in the Media

5 tips for talking about violence and tragedy with your young child

How to Comfort Your Child After a School Shooting

COPING IN THE AFTERMATH OF A SHOOTING

Talking With Children

Helping Children and Adolescents Cope With Traumatic Events

Books (available on Amazon)

The following stories aren’t related specifically to mass or school shootings but can help children see that they can take proactive steps to confront something terrifying.

The Rabbit Listened by Cori Doerrfeld

Come With Me by Holly McGhee

After the Fall by Dan Santat

Social Stories

Social Story About Safety Drills in School

Social Story About Death and Dying by Autism Little Learners