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
ASD
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
8 Tips for Planning for a Successful Holiday for Your Autistic Child
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.
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.
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.
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:
· Autism Speaks: Traveling with Autism
· National Autism Society: Big Red Safety Toolkit – to prevent wandering
· Pathfinders for Autism: Parent Tips: Summer Camp
Voices for All: Sam Krus – An Interview Discussing Gender Diversity
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.
Voices for All: Ash Franks Talks about Supporting Autistic People While Being Autistic and Her Role on LEARN’s New Neurodiversity Advisory Committee
In September 2020, LEARN convened a group of neurodivergent staff to form our Neurodivergent Advisory Committee. The committee reviews and gives feedback on matters relating to neurodiversity and other person-centered ABA topics and was instrumental in the content, messaging, and visual design of LEARN’s Neurodiversity Values Statement. We asked Ash Franks, a member of the Neurodivergent Advisory Committee, to share her thoughts with us.
HI, ASH! FIRST, I’D LIKE TO ASK YOU WHAT IT MEANS TO YOU TO BE AN AUTISTIC PERSON SUPPORTING OTHER AUTISTIC PEOPLE?
Supporting other autistic people while being autistic means listening to what they have to say, however they communicate it, whether it be through an AAC device, sign language, PECS, or verbal language. It also means giving them breaks if they need it, and allowing them to use tools to cope (e.g. stuffed animals, headphones, weighted blankets, etc.). Looking back on my experiences as an autistic child has been very helpful in trying to help children who are at AST.
HOW DOES BEING AUTISTIC INSPIRE YOUR WORK IN ABA?
Being autistic allows me to see different perspectives and ideas compared to neurotypical people, as they tend to think differently than I do.
TELL US A LITTLE BIT ABOUT THE NEURODIVERGENT ADVISORY COMMITTEE AND HOW IT WORKS.
Basically, we are trying to re-vamp ABA materials through a more neurodivergent-friendly lens, so we can make our treatment as effective as possible. Having autistic people and other neurodivergent people look at ABA therapy through their eyes allows them to explain what works and what doesn’t work. This way, we can work to have treatment be as effective, safe, and as fun as possible for everyone involved. Having BCBAs see the autistic perspective is important because we have direct experience with what worked for us growing up versus what didn’t and might be able to help streamline the treatment to be as effective as possible.
CAN YOU GIVE ME AN EXAMPLE OF SOME FEEDBACK YOU HAVE GIVEN IN YOUR ROLE ON THE COMMITTEE?
I tend to give feedback on the more artistic and creative side of things, as I am very geared towards having an eye for creative things in the world.
FROM YOUR PERSPECTIVE, WHY IS IT SO IMPORTANT TO INCLUDE AUTISTIC PERSPECTIVES IN OUR FIELD?
Including autistic people in ABA is super important because we need to account for neurodivergent perspectives to make treatment as effective as possible. Since I am autistic, I can give a firsthand account of what has personally worked for me throughout my life, and what hasn’t. I myself was never in ABA therapy growing up, but I did other types of therapies that I also have found helpful from time to time.
WHAT ARE SOME OTHER PLACES IN OUR SOCIETY THAT YOU THINK IT WOULD BE HELPFUL TO LISTEN TO THE AUTISTIC PERSPECTIVE?
I think listening to autistic perspectives in the workplace would be very helpful. I think having a quiet room for staff that has sensory toys specific for staff would be very helpful, also maybe including a comfy place to sit with a weighted blanket would be good too. Another place it would be helpful to listen to autistic people is when it comes to shopping at malls, since malls can be overwhelming for most autistic people. I know some stores have “quiet” shopping hours where they reduce the lighting and turn off the music, and I really wish more places would do this.
ASH, THANK YOU FOR YOUR THOUGHTS AND FOR THE EXCELLENT WORK YOU’RE DOING ON THE NEURODIVERGENT ADVISORY COMMITTEE!
Ash Franks is a Behavior Technician for Learn Behavioral. Ash works in AST’s Hillsboro, Oregon location. Outside of work, she enjoys photography, cooking, video games, and spending time with family and friends.
MYTH: Nonverbal or Nonspeaking People with Autism are Intellectually Disabled
RONIT MOLKO, PH.D., BCBA-D
STRATEGIC ADVISOR, LEARN BEHAVIORAL
Just because someone is nonspeaking, does not mean they’re non-thinking. Around 25 to 30 percent of children with autism spectrum disorder are minimally verbal or do not speak at all. These individuals are referred to as nonverbal or nonspeaking, but even the term nonverbal is a bit of a misnomer. While nonspeaking individuals with autism may not speak words to communicate, many still understand words and even use written words to communicate.
Nonspeaking individuals with autism utilize a variety of augmentative and alternative communication (AAC) methods. These range from no-tech and low-tech options such as gestures, writing, drawing, spelling words, and pointing to photos or written words, to high-tech options like iPads or speech-generating devices.
There are several reasons that an individual with autism may have difficulty talking or holding conversation that are not related to intellectual disability. The disorder may have prevented the normal development of verbal communication skills. They may also have conditions such as apraxia of speech, which affects specific brain pathways, making it difficult for a person to actually formulate and speak the words they’re intending to say. Some may also have echolalia, which causes a person to repeat words over and over again.
While these conditions prevent many individuals from speaking, it does not mean they cannot learn, understand, or even communicate. There is a pervasive misunderstanding about this among the general population due to a lack of education. It is often wrongly assumed that anyone who has difficulty speaking is intellectually disabled.
This misconception can be particularly harmful when held by medical professionals. In the 1980s, as many as 69 percent of people with an autism diagnosis had a dual diagnosis of mental retardation, which would now be labeled intellectual disability. By 2014, that number had declined to just 30 percent, as researchers improved the diagnostic criteria for autism and a fuller picture of the disorder emerged.
Researchers are still working to try and improve diagnostics and better distinguish nonspeaking autism from intellectual disabilities. As Audrey Thurm, a child clinical psychologist at the National Institute of Mental Health in Bethesda, Maryland says: “We have to figure out who has only autism, who has only intellectual disability and, importantly, who has both intellectual disability and autism. That’s millions of people who could be better served by having an accurate distinction that would put them in the right group and get them the right services.”
It’s important to challenge the perception that those who do not speak cannot think. Not only do we risk failing to give them the proper supports and services, but we also undermine their individuality, ingenuity, creativity, and humanity by failing to see them as they truly are. Just because they are not talking does not mean they do not have much to tell us.
The Autism Journey: Accepting vs. Resisting A Diagnosis
BY: NICOLE ZAHIRY, M.A., BCBA
BEHAVIOR ANALYST SPECIALIST, AUTISM SPECTRUM THERAPIES
According to Autism Speaks, in 2021, 1 in 44 children in the United States were diagnosed with autism spectrum disorder (ASD), with boys being four times more likely to receive a diagnosis than girls. A diagnosis, of any kind, means something different from family to family and is often colored by their culture, belief system, generational influences, and socio-economic factors.
For some, a diagnosis provides validation—there is a name for the group of symptoms parents, friends or family members may have observe (or comment on)—things like: a language delay, “quirks” in social skills, atypical behaviors, or excessive tantrums. The diagnosis can be affirming; for moms, in particular, there may be a sense that their “gut” was right. It may be a sigh of relief that their intuition has been validated in the form of a recognizable diagnosis — something more than just an instinct felt deeply in some intangible way. For others, a diagnosis can be a devastating surprise — one that catches unsuspecting parents off-guard and leaves them feeling overwhelmed and underprepared.
Whether a parent has suspected something all along or is taken aback by a diagnosis, all families grapple with making sense of what it all means. The hard part, for many families, is being patient, hopeful, and resolute when the questions far outnumber the answers.
After a Diagnosis
Arguably, one of the hardest parts of the journey for parents of children with ASD, is the beginning. The unknowns are pervasive. The information “out there” is wild. Google is daunting (and often alarmist), and questions lead to more questions even before the diagnosis has been fully digested. Parents may begin asking themselves and others: What is ASD? What does it mean? Will my child learn to communicate? Will his/her behavior ever improve? What now? What do I do? What treatments are available? Why is this happening?
One truth about ASD is that autism is different for each autistic individual. As autistic professor and advocate Dr. Stephen Shore says, “If you’ve seen one person with autism, you’ve seen one person with autism.” And, it’s true. Autism looks, sounds, feels, and behaves differently for each autistic child.
A neighbor, friend, or family member’s autistic child, his/her skills and strengths, areas of need, where and how much he/she is impacted by the diagnosis, will all vary. Every child is unique. Every autistic child is too. Comparing one autistic child against the skills of another can be, at best, misguided and, at worst, detrimental. The best (albeit, the only) way to answer some of those nagging questions is to submit to the journey of autism and start down its road one step at a time, minute to minute, hour by hour, day by day.
The Journey of Autism: Resistance and Grief
There’s no doubt that undertaking something new can feel overwhelming. After all, autism is a journey most parents are ill-prepared to begin and may resist undertaking altogether. Beginning a journey with few answers, little information, and no preparation makes even the boldest and bravest among us uncertain. But, as the old adage goes, “A journey well begun, is half done.” For parents, beginning the autism journey on the right foot often means acknowledging resistance, grief, and other feelings about the diagnosis before heading down the road.
Resistance, in the beginning, often shows-up in unhelpful ways and can breed doubt or distrust and delay access to important early interventions. It often comes from a place of grief, guilt, or anger: Could the doctor be wrong? Did I cause this? Maybe my child will “outgrow” it? Maybe my child is just “slow”? It can be difficult to side-step resistance and forge ahead when many questions remain unanswered. But, the autism journey is not linear—emotions, feelings, and reactions will not be either.
Later on, resistance can become an important component of advocacy. Resistance may prompt parents to speak-up/stand-up, and communicate to care providers if/when assessment, placement, or goals do not align with their (or their child’s) objectives for treatment. Resistance gives parents a new voice; it can lead to useful insights, self-reflection, and those wonderful “lightbulb” moments that have the power to remove roadblocks and push treatment forward.
Processing grief is sometimes an uncomfortable but important additional step for parents new to the journey. All the unknowns can be heavy; grieving the weight of those worries is important. It is OK to be sad. It is OK to feel loss. It is OK to shoulder that grief with a partner, a trusted friend, a therapist, or a family member. It is also OK if parents don’t feel these things, either.
But for those that do, it is critical to recognize that grief or sadness will eventually make way for other emotions and lend themselves to a steadfast resiliency that treatment, therapy, and advocacy often require.
It’s important to acknowledge that grief can (and often does) exist alongside hope, love, and other complicated feelings—sometimes competing for attention. Accepting a diagnosis is not the absence of grief, but rather, an acceptance of it. It is an acknowledgement that things will look different because of autism but also an understanding that different is not less. Different is important and valuable. Differences are necessary. Differences are an inherent component to being alive, to living, to being human.
The Road to Acceptance and Action
Accepting autism means taking those reluctant first steps.
Those steps can be taken with uncertainty, with fear, with resistance or grief, with hope, with love, with the whole gamut of emotions along for the ride. Acceptance involves understanding autism as more than a label but a gateway to support and community; an opportunity to educate siblings, family, and community members about autism, inclusion, and neurodiversity.
It can be a call to action — personally, within the walls of a home, and beyond. Several important organizations at the forefront of autism and autism research were started by parents. Parents looking for support, digging for answers, researching effective treatment for their children. Parents who didn’t expect autism. Parents who may have grieved the diagnosis. Parents who fought hard for their child, for change, for growth, for acceptance and advancement.
A diagnosis also allows parents to access effective therapies via private insurance and academic supports from their local school district. Therapy that opens doors, strengthens skills, and decreases the impact maladaptive behaviors like aggression or tantrums may have on an autistic child’s quality of life.
Acceptance fuels action. Action brings answers.
Autistic children will have different needs than neurotypical children. There will be different obstacles to overcome and different battles to be fought. But, in many ways, the journey will be the same. Life will ebb and flow and push and pull parents in a thousand different ways—some of which will not be easy to understand. Questions will always come before there are answers. And, there will always be questions that don’t have answers. There will be ups and downs. There will be periods of high highs and low lows.
But, there will be joy. There will be laughter. There will be love.
Nicole Zahiry, M.A., BCBA, is a behavior analyst specialist in Orange County, California. She has been active in the field of ABA for nearly 20 years. She is also a mother to three children, one of whom was dual diagnosed with ASD and Attention Deficit Hyperactivity Disorder (ADHD) at 5 years old. Nicole is a fierce advocate for neurodivergent inclusion and considers herself an ally of the disabled community.
