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.”
Autism
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.
3 Tips for Making Valentine’s Day Special for Your Autistic Child
As store shelves turn to masses of pink and red, some people get excited and others groan. Valentine’s Day, with all of its joy and complexities, is around the corner. Although love and social connection are important to everyone, Valentine’s Day can be tricky to navigate for many people, including some of our autistic loved ones. Different ages bring different challenges: from the drama of classroom valentine exchanges to the heart-stopping anxiety of having a date. Wherever your child may fall on this continuum of V-Day Life Lessons, a few considerations can help them feel cherished on this day.
Prepare
Consider the potential challenges that your child might encounter that could be helped by some advance skill-building. Think carefully about what your child will encounter that day and what easily-acquired skills might help them enjoy the day more. A younger child whose class is exchanging valentines might benefit from practice; find out how the teacher will approach this (will the kids deposit them into a box or hand them out individually?) and rehearse in advance. A teen attending a dance might benefit from a social story about what to expect, previewing conversation starters, and maybe watching some realistic shows depicting teen dances to help set expectations. If anxiety is a factor (as it can be with anyone of any age!), make sure there is an easy way for them to contact you for an early pick-up. For safety, teens and young adults who are dating should have information about consent and sexual harassment at a level they can understand. Learning about good hygiene practices, manners, and general dating “dos and don’ts” can help to set them up for success.
Accommodate
There will also be challenges on Valentine’s Day that can’t be solved by skill-building. Consider your child’s experience and be creative about the types of accommodations that might help them enjoy the day the most. If your child is on a special diet, find out if there will be school treats so you can arrange for something yummy for your little one. Some children will not enjoy the “typical” Valentine’s Day activities. Remember, it’s once a year, don’t stress over making them go to a class party they won’t enjoy. There may be accommodations that can help make regular activities okay (headphones), or you can simply ditch the regular valentines’ stuff and think of some fun alternatives instead. Perhaps instead of going to the dance, they can rather invite a friend over to bake brownies or watch a movie with their sibling.
Love
Valentine’s Day is an opportunity to show others how much you care. As a parent or caregiver, showing affection for our children is one of the most fulfilling experiences. Think about your child’s preferences and give them a token of your love, whether that be treats, attention, a new Lego set, or a special rock. Giving them choices in preparing for the day (e.g., picking out valentines, choosing a special dessert, etc.), thinking about how to include their preferred interests in your plans, and making plans to accommodate sensory needs can communicate your love and respect.
Some profoundly affected autistic folks will not be affected by the fact the world has turned pink and red; they may not understand or care. But this doesn’t prevent them from receiving your love and affection in the ways they do the rest of the year, so take the opportunity to connect with them on their level. Many autistic folks tend to anthropomorphize; if there are things (e.g., trains, books, electronic devices, etc.) that are the object of your child’s affection, think about how to celebrate these objects that give your child joy.
For those autistic children who understand the social nuances of Valentine’s Day, it can create pressure around feelings of popularity and acceptance. If your child is experiencing these common hardships, do your best to shift the emphasis away from romantic love and toward other satisfying relationships in your child’s life. For some, that may be a friend, or for others, it may be family. Reassurance that they are accepted at home and loved unconditionally is paramount.
Have Happy Valentine’s Day!
Last but not least: show yourself some love as well. Parenting isn’t easy and requires many qualities, including patience, empathy, and, most importantly, love. The love we give our children isn’t always returned in the moment, making it hard sometimes to reflect on all the wonderful things you do for your child. Remember, you’re raising a human, which is stressful yet important and incredible work. As you nurture your relationship with your child, you build their capacity to love and show love to others. This Valentine’s Day, take some credit for all you do for your child in the name of love and find a way to treat yourself, whether that means setting aside time to read or exercise, getting an extra hour of sleep, or calling a friend. You deserve just as much love on this special day. For research-backed strategies on managing stress, check out “How Parents and Caregivers of Kids with Autism Cope with Stress.” To dive deeper into the topic of love and autism, learn more at “Myth: People with Autism Don’t Feel Love.”
Myth: Autistic People Lack Empathy
Katherine Johnson. M.S., BCBA
Senior Director of Partnerships, LEARN Behavioral
Note: This article is about a form of ableism that affects one part of the autistic community: autistic people who are proficient verbal communicators. Those who communicate with AAC devices, typing, sign, or who don’t yet have the communication skills to engage with the wider world face other forms of ableism and discrimination not described in this article.
The Double Empathy Problem
Remember the game “telephone”? One person whispers a message to another, that person whispers to the next, and on down the line until the last person announces the message so everyone can laugh at how many times the original sentence has been distorted.
Using a variation of this exercise, a study looked at how a message fared if the string of people in the telephone line were all autistic, all neurotypical, or a mix of both. It turns out that the rate at which the message degraded among the verbal autistic people was no greater than that of the neurotypical people. It was only when the message was sent through a mix of autistic and neurotypical people that the meaning deteriorated significantly faster.
What does this tell us?
If effective social communication was objectively deficient (not just different) in verbal autistic people, we would expect that the all-autistic string of people would produce the worst decline in messages in the study; that wasn’t the finding. Instead, the autistic people received and passed along messages amongst themselves just as well as the neurotypical people. The faulty communication resulted not from the autistic participants but from the mismatch between autistic and neurotypical communication.
This small study illustrates a theory by Dr. Damian Milton that he calls the “double empathy problem.” Challenging the assumption that neurotypical people have social skills that autistic people simply lack, he posits that the disconnects between autistic and non-autistic people are not the result of a one-sided skill deficit; they are instead a mismatch of neurotypes.
Reframing
This is a dramatic reframing of the common belief about these communication breakdowns, which placed the fault squarely on the social skill profile of the autistic folks. The “empathy” part of the theory’s name refers to the widely-held idea that autistic people lack empathy, when the theory would suggest that autistic empathy is simply expressed differently. Slowly but surely, researchers are beginning to look at that other side of the coin: how the social skill profiles of neurotypical people might also undermine relationships.
For years, research has demonstrated that autistic people have difficulty interpreting facial expressions; a 2016 study finally looked at the reverse. They asked neurotypical people to interpret facial expressions of autistic folks – and they were unable to do it. The results of a series of studies in 2017 suggest that one reason people of different neurotypes have difficulty connecting is because neurotypical people form negative first impressions of autistic people (based upon appearance, not conversational skills), and subsequently avoid them. This indicates that some of the social isolation that autistic people face is due to ableism and discrimination.
Missing Out
The difficulties autistic and non-autistic people have connecting negatively impact both sides. Since autistic people are in the minority, disconnection from the neurotypical portion of their community can increase their feelings of loneliness and isolation. For its part, the neurotypical world is missing out on the unique, often innovative, autistic perspective.
Autistic people who have had huge cultural impacts on our society (environmental activist Greta Thunberg, actor Dan Akroyd, and Pokemon creator Santoshi Tajiri, to name a few) have had success in spite of a society that is largely unsupportive of and, at times, openly hostile to, the social profile of autistic folks. Imagine what brilliance we miss out on when autistic people are looked over, avoided, not hired, etc.
Even those who are not destined to become one of the famous few mentioned above have a perspective that can deeply impact those around them. Autistic people see the world from different angles, which can be an advantage in everyday problem-solving. They generally have a strong sense of justice, an unwillingness to be cowed by hierarchy, and a drive for honesty, sincerity, and specificity, all beneficial qualities in social relationships and the workplace.
Expanding Neurotypical Empathy
The solution to the separation between people of different neurotypes has largely been to teach autistic people how to understand the rest of the world better. But by considering the double-empathy problem, we can see that this is only part of the issue. The other part is that non-autistic people also have skill deficits: interpreting and interacting with autistic people.
Just as history is written by the winners, social norms are written by the majority. If we want to work toward a future where people of all neurotypes better understand one another, we must listen to the experiences of the minority. It’s important to recognize that neurotypical “social norms” exist because they’re most common, not because they are inherently superior. These dominant “social norms” directly result from how neurotypical people think, behave, and process the world.
“Empathy” is about understanding another person’s experience. Ironically, to succeed in our society, autistic people must display empathy nearly constantly: decoding others’ unwritten rules and learning to approach the world in a way that works for others. To bridge the divide, nurture the gifts of the autistic people in our society, and for everyone to benefit from the valuable perspectives of the neurodivergent, those with neurotypical brains must follow this example. By challenging themselves to work toward understanding and adapting to the way autistic people see and experience the world, neurotypical folks can open themselves up to new friends with an intense devotion to honesty. Employers will find innovative autistic employees with rare specializations and a knack for accuracy. And society will benefit from recognizing and celebrating the valuable and previously underappreciated gifts of the autistic mind.
Damian E.M. Milton (2012) On the ontological status of autism: the ‘double empathy problem’, Disability & Society, 27:6, 883-887, DOI: 10.1080/09687599.2012.710008
Sheppard, E., Pillai, D., Wong, G.TL. et al. How Easy is it to Read the Minds of People with Autism Spectrum Disorder?. J Autism Dev Disord 46, 1247–1254 (2016). https://doi.org/10.1007/s10803-015-2662-8
Sasson, N., Faso, D., Nugent, J. et al. Neurotypical Peers are Less Willing to Interact with Those with Autism based on Thin Slice Judgments. Sci Rep 7, 40700 (2017). https://doi.org/10.1038/srep40700
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.
8 Tips for Planning for a Successful Holiday for Your Child with Autism
The holidays are an exciting time as we share traditions, spend time with family, and navigate the different gatherings and celebrations. Holiday spirit can also bring holiday stress. We want to help you and your family have the most successful (and least stressful) season by offering our best practices and tips.
BEFORE THE HOLIDAYS
Start with Expectations
Having a positive and realistic mindset about what you want to create can make a big difference. What could go right this season? Keep an optimistic view of the possibilities for special moments you want to share. A winning holiday doesn’t have to mean extravagant plans. Consider what would be ideal, be prepared to accept when flexibility is needed, and look for the wins along the way.
Consider Comfort and Safety Needs
When visiting events or other homes, bring items you know will bring comfort for your child—things like earplugs (or headphones), fidgets, and soft clothes. When traveling, ask for needed accommodations from your airline and hotel. Make sure you are aware of possible water nearby and review crisis plans with loved ones.
Practice Before Events
Now is a great time to discuss upcoming changes to schedules and routines. Involve your child in the process whenever possible. Playing memory games with photos of those you will see this holiday season allows your child to identify matching names and faces. Establish a phrase or code word with your child to practice using when they need to take a break from events to calm down and relax.
DURING THE HOLIDAYS
Maintain Routines
During the holidays, change is inevitable but find ways to create or maintain routines for your child. What are things you can build into every day? Perhaps it’s something you do together each morning, afternoon, and evening (regardless of location). Utilizing visual supports like calendars and independent activity schedules can be helpful too.
Build in Fun!
Whether days are filled with errands or time at home, consider letting your child choose a couple of activities each morning for the day ahead. Here are some suggestions that might work for your family:
- Bake something together
- Do holiday arts and crafts
- Take a drive to see holiday lights in your neighborhood, zoo, or garden
- Help with decorations or gift wrapping
- Sing along with holiday music
Consider Sensory Needs
Holiday meals can be tricky for some. Plan ahead for alternative foods that you know your child will eat. As we mentioned earlier, being mindful of dressing in (or packing extra) comfortable clothing can be helpful. Preferred items, such as toys or other objects that help promote calm for your child, are a good idea too. Consider making a sensory box that includes things to stimulate your child’s touch/sight/sound/taste/smell. Finally, establish a quiet “break space” that your child can utilize when needed.
WRAPPING UP THE HOLIDAYS
Plan for Rest and Recovery
After each scheduled big event or outing, try to allow time for a quiet evening that follows. Start a list or document on your computer of things that went well that you want to repeat and ideas about what would make it easier next time.
Transition Back to School
Packing holiday decorations and unpacking clothes can be helpful signals to your child that things are moving back to the normal routine. Other visual cues like a countdown calendar for back to school can help prepare them. Show them when school starts and have them mark off the days. Leave extra time the first morning back to school so you can have a nice breakfast and move with ease into the day. If possible, organize a nice, calm activity after school and focus on what went well at the end of the day.
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.
5 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.
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.
Allyship Tips for Neurotypical Friends of the Autistic Community
By Katherine Johnson. M.S., BCBA
Senior Director of Partnerships, LEARN Behavioral
Are you working to become a better ally to the autistic and neurodivergent folks in your community? The surest way to be an effective ally is to reach out to autistic/neurodivergent people to ask how they would like your allyship. If you’re preparing for this type of conversation, here are some points to consider.
1. Listen to the voices of autistic and neurodivergent people and their caregivers.
These last few years of lockdowns have given rise to a surge in humans connecting over the internet and taking time out to hear one another’s stories. Through social media, many verbal autistic people are sharing their experiences and more and more people are listening. This is the first place to begin when learning to be an ally.
Also critical in understanding the autistic experience is listening to the stories of caregivers of those who aren’t able to communicate as they offer a unique perspective and are often deeply in need of compassionate and understanding allies.
2. Throw out your stereotypes
There are autistic people who love to chat, and there are autistic people who struggle to communicate their most pressing needs. Some prefer to be left alone, while others want to spend all of their free time being social. There are people on the spectrum who have intellectual disabilities and those on the spectrum who have a genius IQ. Don’t assume that one autistic person is like another; just like all of the other humans on this planet, autistic folks are individuals.
3. Sympathy is not empathy
On the topic of respect, remember this: you can feel for someone without feeling sorry for them. Don’t fall into the trap of thinking that because someone is different from you, they are inferior or their life must be less fulfilling. Pity assumes inferiority, which is insulting and demeaning. True allies assume competence, recognize their common humanity, and seek to build trust and understanding with their neurodivergent friends and neighbors.
4. If you want to know how they feel – ask
The communication differences between autistic and non-autistic folks remind us of a universal human truth: you don’t really know how anybody feels unless they tell you. Sure, we all try to read each other’s facial expressions and tones of voices, but in a world where our brains work differently, this is an imperfect system! A neurotypical friend of mine recently made this mistake. An autistic teen had been pacing, breathing heavily, and talking under his breath. My friend assumed that the teen was in crisis, but when I simply asked how he was doing, it turned out that he wasn’t even mildly upset – just lost in thought.
On the other side of the coin, if you want someone who is neurodiverse to know how you feel, don’t rely on heavy sighs or raised eyebrows to communicate – speak your truth. Keep in mind that some autistic people use pictures to convey their emotions, while others have alexithymia (an inability to describe their own emotions). Communicating feelings should always be within the bounds of each person’s comfort level. While being upfront about our emotions can remove the guesswork from a vulnerable connection, nobody “owes” it to you to explain their experience.
5. Notice distress? Ask if you can help
In the days before everyone had a GPS in their pocket, I was offered directions many times, simply because I looked lost. Once, as a teenager with a broken heart, I burst into tears in public, and a grandmotherly stranger immediately threw her arms around me to comfort me. Strangers are often happy to help others…. that is, when it is obvious what kind of help they need. The communication differences between neurodivergent and neurotypical folks may mean it’s not obvious, so it’s best to ask.
Like most of these tips, this applies to folks at all points on the spectrum – from those who are non-verbal or need substantial support to those who have the life skills to be one of your colleagues or even your boss. Autistic people of all skill levels are living in a world not designed for them, and they can become overwhelmed or distressed by things that may not be apparent to others. If you see someone “melting down,” they may appreciate the offer of help – perhaps you can get others around them to give them some space, or you can assist them in getting out of a distressing situation. I recently interviewed an autistic man who related the story of his meltdown in an airport, where he cried openly for 20 minutes before anyone offered to help. The message he wanted to convey was this: when someone is overwhelmed, just having someone offer help can be comforting.
An autistic person by themselves in public may be able to articulate what they need with spoken language; a non-verbal autistic person may communicate by signing, using pictures, or gesturing. When the person melting down is accompanied by a caregiver, the caregiver may have more familiarity with the autistic person’s unique ways of communicating and may let you know if there’s something you can do to assist. If you have a friend on the spectrum, it’s helpful to be prepared in advance: ask your friend when the best time would be to talk about their triggers and how you can help during a meltdown.
6. Say what you mean….and mean what you say
Our society accepts, sometimes even encourages, “white lies” to spare people’s feelings, but this can backfire with people on the spectrum.
Consider this scenario: a new acquaintance asks if you’d like to get together, and the truth is that you don’t have space in your life for an additional friend. You might agree to exchange information and rely on the person to “get the hint” from your lackluster tone or the fact that you are always “busy.” But reliance on non-verbal messages like this puts people on the spectrum at an unfair disadvantage. Characteristically honest and literal, an autistic person may think they have actually made a friend and be far more hurt by the subsequent ghosting than they would have been had you simply been honest from the beginning. Perhaps, “You seem like a wonderful person, but I have to be honest that I am really busy, and I don’t have time to devote to a new friendship.”
Develop the ability to deliver messages like this truthfully and with compassion. Remember that most people on the spectrum will take you at your word – and dishonesty is supremely unkind.
Along these same lines, a note about humor: sarcasm and teasing are forms of humor that are often simply not funny to autistic people. This doesn’t mean they don’t have a sense of humor. There are many other types of humor, so if sarcasm and teasing are your main forms of joking, think about expanding your comedic range.
7. Be sensitive to the sensory
The neurological profile of autistic people includes a sensory input system that may be quite different than your own. Most people have always taken for granted that everyone else experiences smell, sound, noise, light, and other visual input in much the same way they do. This assumption can be a huge barrier to understanding and connecting with autistic people. Not only can certain sensory stimuli be uncomfortable, it can also affect their ability to focus, communicate, or regulate their emotions. When my son walked into his kindergarten classroom and saw the walls covered from floor to ceiling with pictures and letters and words, he turned to me and said, “This room makes me dizzy!” Remember that not every neurodivergent person can put into words how these disorienting environments affect them.
8. Get comfortable with noises and movements you don’t make
Everyone stims. When you bounce your knee because it feels good, hum tunelessly enjoying the buzz in your ears, or twirl your hair around your finger: you are stimming. Autistic people might stim in ways that might be less familiar to you – they may repeat words over and over or move their eyes in different ways or flap their arms. Stimming can block out unwanted sensory input – much as children stick their fingers in their ears and hum to block things out. Stimming can absorb energy, as it does when you’re waiting for something and you unconsciously squirm or pace. Stimming can also be calming, as it might be for you when using a stress ball or a fidget spinner. When you see someone in public moving or making noises in a way that you don’t recognize, resist any urge you may have to give a sideways glance. Perhaps, it is simply someone on the spectrum, another human who stims (as we humans do) and deserves respect (as we humans do).
Becoming an ally to any group you’re not a member of means being willing to really listen to another perspective, to honor their experience, and integrate that into your own understanding. Clinical Director Ashley Williams reflects on her own journey:
“I think part of being an ally is being vulnerable enough to recognize that you’ve made mistakes previously. I feel like I used to dig my heels in as a clinician because it was some perspective I clung to, and I didn’t give myself permission to rethink and admit I was wrong. I didn’t see value in changing my mind and admitting my own faults. When it comes to autism, I don’t think I became a better ally until I was comfortable saying I was wrong, and I’m open to feedback/rethinking on an ongoing, daily, basis. I always want to convey my openness to changing how I speak/act/behave to make the world a more welcoming place for those whose experiences differ from my own.”
