In this informative video, two Board Certified Behavior Analyst (BCBA) moms, Heather and Trisha, share their personal experiences with Applied Behavior Analysis (ABA) therapy and how it has helped their children succeed. For more information about our ABA Therapy services visit: https://lrnbvr.com/yt-aba-moms
Autism spectrum disorder
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
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.
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.”
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 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.
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.”
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 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.
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.
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.
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.
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:
· Autism Speaks: Traveling with Autism
· National Autism Society: Big Red Safety Toolkit – to prevent wandering
· Pathfinders for Autism: Parent Tips: Summer Camp
First off, let’s talk about gender identity. How do you identify?
I identify as floating between more of a masculine view and a gender-neutral view. If I was going to put a label on that, the closest I’ve heard is demi.
Now of course, gender identity is different than gender expression. Can you tell me a little bit about your gender expression?
I’d say my gender expression comes more with whatever accessories I have with me or how I decorate my house. Clothing-wise, I dress for practicality and male clothing is more designed for practicality rather than decorative purpose so I generally dress more “male.” But I have some feminine-tinged decorations around the house. My big aesthetic is horror, folklore, and mystery (not violence). [Sam turns the camera to show me a well-organized closet and shelving system filled to the brim with a bright assortment of costumes.] I have a lot of things based around ghosts and creatures. I’m interested in strange anatomy, not the act of doing harm. How bodies move, the forms of a body, the wings, the features.
I also carry a lot of toys in my car for work, like child-appropriate things that I feel like anybody could play with; I like to have these items with me. It makes me feel like I’m passionate about my job and also, I can zone out and [play with] them. That’s how I establish my aesthetic more than what I wear.
One thing [about my gender expression] that’s my actual body is my long hair. It’s partially a feminine thing but also a gender-neutral thing. On me, it doesn’t look feminine, so it’s blending both. My gender expression is how I surround myself with objects, and I pick objects that are not specifically gender coded…but if they are gender coded, they’re more coded toward feminine. Like the fashion dolls, but those have a component of horror and mythology, which I don’t view as being a gender-coded subject.
How does being gender-expansive affect your life?
It affects my life mostly in my interests and how open I am. I feel like I have to pick and choose what parts of myself I’m going to share; whether that’s going to be welcomed or not. It only affects me fairly mildly, I know for other gender diverse people it affects them more. For me [the question is], “this is something I like, is this something I keep to myself or something I share with somebody else?”
I have interests that are not considered masculine. For instance, in the other room, I have a shelf full of dolls. That’s something that I used to feel was inappropriate.
These barriers are fading with these new generations, but there are autistic adults that have things that are not viewed as age-appropriate interests. There are these set boundaries of what is appropriate for you to be interested in that you transgress. Your interests and the boundaries that you transgress go hand-in-hand with being gender diverse and being autistic.
How did you first recognize that you were demi, or gender-diverse?
A big thing that made me realize that I was gender-diverse was that I watch a lot of cartoons, a lot of shows with younger people. I like shows where there’s an all-girl cast; I identify with them a lot more than shows where there’s an all-male cast. [How an all-girl cast relates to each other is] how I want to talk to people. Because that’s more of an intimate, caring viewpoint. I wonder if that’s going to come off as weird or especially because I’m a man, is that going to come off as sexual and therefore threatening. I wonder how to approach people, because I want to approach people in a very caring way; but do I need to stamp that down? Sometimes, I’m meaner than I feel like I should be in terms of jovial insults to balance it out. I think, “I’m being too considerate, too genuine, I have to call you an idiot now. Oh, wait, was that too harsh to call you an idiot?”
Can you tell me more about your fashion dolls?
As a kid I liked dolls. Getting a toy from McDonalds, if the choice was the car or the Barbie, I wanted the Barbie. I liked that they had arms and legs that I could manipulate, I was more of an action figure person. Besides McDonald’s, I was never interested in them on my own, but as an adult in 2014, I came across Monster High dolls. The idea is that they’re based on monsters from folklore as teenagers and they each have something with their body they have to deal with. The Frankenstein girl, her body occasionally falls apart. The doll from the black lagoon has a skin condition where she constantly has to moisturize or she dries out. They all have an inconvenience that they have to deal with, they’re just accepted for who they are. For me that’s a very autistic narrative, very living-with-a disability narrative.
Tell me about being a gender-diverse BCBA:
And then when it comes to gender diversity, that comes into effect more with interests…. If my kid likes vacuums, I will bring my vacuum…. If my kid likes fairy tales, mythology, or magic, I will go to the library and get 11 books on fairies, and we’ll just go through them together and pick out our favorite creatures. There have been a couple of times where parents have wanted their kids to stop being interested in what they’re interested in and be interested in something more “gender appropriate.” I had to think about how I would approach this to defend my client without revealing too much about myself. I’m a man working with children and there’s a stigma about men working with children, with queer people working with children, with homosexuals working with children. I feel if I’m revealing too much about myself or not enough, there could be a misinterpretation, they might view me as a danger to their child when I’m just trying to defend them. Fortunately, I haven’t had to deal with it too much.
Tell me about being an autistic BCBA:
Primarily, being autistic is what comes into play when I’m working with the kids, and more often, with the parents when I don’t necessarily come into conflict, but I come in to decisions that need to be made, and how I approach things. When that comes in as a general rule, I never let any parents know that I’m autistic because I don’t want to set myself up as an example of what their kid is going to be or create the illusion that I’m an expert in autism.
So…you are autistic and work to support people who are autistic…but you don’t consider yourself an expert in autism?
The thing is that when I was younger, I tried to be an expert in autism, and I realized how much pressure I was putting on myself, undue pressure, because autism is such a wide thing. I tried to make myself a representative and I realized that it was kind of out of guilt for being autistic, where I was like, “I’m sorry I’m this way, let me be as easy to understand, let me be a lesson.” Only in my adult life did I kind of realize that, so I’m trying to un-do that pattern of behavior.
Because it took a toll on your mental health?
Right. And because it’s stressful. And because it’s not true. No doctor, people assume that an expert knows absolutely everything. And nobody knows everything about autism. We barely understand it. There’s like 400 genes that affect it, and we don’t know how they affect it, they just do. And we know some techniques that we can use to help people learn what they normally would not be able to learn, we know some of the symptoms, but the definition is always changing. Autism is that something you can’t really be an expert in, you can just be knowledgeable.
Sam Krus is a BCBA in Waukegan, IL who practices in Kenosha and Madison, WI. Sam enjoys fashion dolls, podcasts, making costumes, role-playing games, board games, and reading when they have the time and energy.