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. 

Selecting an ABA Graduate Program

Graduate school is not something to be entered into lightly. A graduate degree is a big financial investment and requires a great deal of your time for about a 2-year period. It also prepares you for the next stage in your career. Choose your program wisely to set yourself up for success! Here are some important things to consider before you make the big leap:

1)     ONLINE OR IN-PERSON?

Do you want to take your classes online or in-person? If you prefer to take classes in-person, think about commuting time, parking logistics, and be sure to get find out their Covid-cancellation policies. If you want an online experience, inquire about whether the program is synchronous (students attend online class with the professor at a set time), asynchronous (classes can be done on your own time), or a combination of the two. Graduate school will be one or your highest priorities for a couple of years, so find a program with a format that works for your learning style.

2)     PASS RATE

Graduate programs sometimes post their “pass rates,” or the percentage of their graduates who pass the BACB exam. The pass rate is not the be-all end-all, but it’s one indication as to how effectively the program prepares graduates to take the certification exam.

3)     CLASS TIMES

When classes are in-person or synchronous, the course schedule will directly affect the times you are available to work. If you have a set schedule at work, be sure the class times won’t affect your availability. If you’re looking for a job that will help you meet the BACB experience requirements, knowing class times allows you to give potential employers accurate availability.

4)     FIELDWORK: PART OF THE PROGRAM?

In order to sit for the BACB exam, you will need a degree and a certain amount of supervised fieldwork (check the BACB website for the specifics). Some graduate programs include fieldwork supervision as part of their course of study and others don’t. Programs that don’t support fieldwork are considerably cheaper, but students should understand that they will be responsible for finding their own supervisor. This may mean paying a BCBA to provide supervision, which makes the tuition savings less significant. Before choosing a program, take time to become familiar with the BACB fieldwork requirements and understand what the graduate program does and does not provide.

5)     FIELDWORK: WHAT TYPE?

If the program you’re considering includes supervision, find out which type. The BACB allows applicants to do Concentrated Supervised Fieldwork (1,500 hours) or Supervised Fieldwork (2,000 hours), but most universities only support one of these options. Please note that these hours are subject to change per the BACB.

6)     FIELDWORK: SITE

Will the organization you work for be able to fulfill the requirements that the graduate program requires of their field sites? You don’t want to get into a graduate program only to realize it’s not compatible with where you work. Find out if any of your colleagues have gone through the program you’re considering so you can get the scoop on how well the program fits into your job site.

7)     FINANCIAL

Beyond looking at cost-per-credit and total tuition, you should also ask for cost estimates of books, materials, and fees. Keep all relevant costs of the various programs you are considering in a spreadsheet for easy comparison. Also, be sure to ask what scholarships, grants and discounts are available. At LEARN, we value our employees’ desire to pursue higher education. That’s why we’ve partnered with universities across the country to help make education for our employees more affordable and accessible.

Choosing to go to graduate school is a monumental decision that will open a lot of doors for you. Select your program carefully to ensure that it’s a fit for you and a great investment in your career!

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.

What is Contemporary ABA?

RONIT MOLKO, PH.D., BCBA-D
STRATEGIC ADVISOR, LEARN BEHAVIORAL

It has been said that history is written by the victors. The colonists won the American Revolution, and so the war has been cast as a noble struggle to escape the yolk of tyranny. Had the British won, history books today would memorialize the conflict as the empire’s rescue from the clutches of ungrateful rebels.

Likewise, able-bodied people comprise the dominant culture in America; thus, we define “normal” along the contours of able-bodied activities. We consider, for example, an autistic mind or a visual impairment that enhances other senses to be of diminished value. In fact, they may simply be different ways of understanding and interacting with the world.

For many of the 60+ million Americans who have some kind of disability, this is a challenge. They are forced to fit their round life into the square hole of able-bodied culture despite the ease with which culture could accommodate everyone, including those with disabilities.

Ableism and Ableist Misconceptions

The inability of the able-bodied to recognize that not everyone is like them has given rise to a new label – ableism. This is the equivalent of the racism White Americans exhibit by failing to recognize the advantages they have versus people of color. We must be attentive to eliminating assumptions that reflect an able-bodied view of the world that does not pertain to everyone.

People with disabilities tell me that ableist thinking includes a variety of knee-jerk assumptions and misconceptions, including this one: that people with disabilities have no autonomy and constantly need help, even if they don’t ask for it.

Another version of this is the idea that people with disabilities must constantly explain themselves, for example by detailing how they became disabled, or that they have average or superior intelligence even though they do not communicate verbally. It is also an ableist misconception that all disabilities are visible. This perpetuates stigmatization and mistreatment of people with mental illness, which is, after all, no different from physical impairment except that it affects the brain. Taken together, these false ableist impressions accrue as barriers to inclusion and equity for disabled people.

ABA Intervention

Applied Behavior Analysis (ABA), considered by many to be the gold standard of treatment for autism, has as its ultimate goal providing autistic individuals with the skills to function at their highest potential and live as independently as possible. The field of ABA has decades of empirical evidence to support its efficacy in teaching new and necessary skills and reducing challenging behaviors that interfere with learning.

Recently, ABA has increasingly become the target of much controversy as self-advocates are speaking up about their personal experiences with ABA and the rejection of the notion that teaching autistic individuals the skills we deem necessary without their input and self-determination is erroneous. Some advocates for this community argue that independence without happiness is a hollow goal, and that autistic individuals should decide what outcome they want to achieve. Becoming as much like everyone else as possible may not be it.

ABA, which is essentially the science of good teaching, has a long history and was originally developed in the 1960s by a group of researchers at the University of Washington. ABA was used to treat individuals with developmental disabilities and initially was a rigid, highly-structured and teacher-directed program which led to some of the negative experiences and associations with ABA. Historically, for example, ABA was used to reduce or eliminate “stimming” – repetitive physical movements and sounds that may soothe and reduce anxiety. We now better understand that stimming helps autistic individuals manage their sensory processing and their environments.

 Just like in other areas of medicine and science, the field of ABA has advanced in a significant and meaningful way to become a play-based, naturalistic, family-focused and individualized, contemporary treatment that is tailored to the unique needs and goals of each individual. Another hallmark of a good ABA program is the collection and reporting of data to demonstrate efficacy. Most payors today require providers to demonstrate success, validated by parents, of the participant measured by obtaining and maintaining goals that are developed by the provider and family together. If your service provider is not providing a program that fits this description, you are likely not in the hands of a provider who is adhering to best and current practices.

As the ABA provider community has the opportunity to learn from more adults, something that was not available when this science was first being applied to autism, there are more and more opportunities to adjust and modify services to meet the needs to each individual. The idea that we discard a technology that has successfully treated thousands of individuals because of negative experiences is akin to suggesting that we eliminate an entire specialty of medicine because of some failures of treatment.  Having said that, service should always be informed by the individual receiving them, and their advocates who have their best interests at heart.

Every negative experience is unacceptable and should be heard so that changes can be made to ensure an optimal experience for future clients. Good ABA programs are client-centered and solicit the consent and input of all involved. As you consider treatment for your family member or yourself, do your research and ask your provider the important questions:

o   Will I participate in determining the goals of treatment for myself/ my child?

o   How are your staff trained?

o   How is my child’s program developed? Do all clients receive the same program or are they individualized?

o   Will there be parent goals as part of my child’s program?

o   How often is my child’s program modified or revised?

o   How is data collected and reported? How often will I see data on my child’s progress?

 Your child’s program should be client-centered and future looking which means that your family and relevant caregivers are providing input into your child’s strengths and challenges, and that you and your child are helping to guide the goals of his/her program based on your preferences and needs.

 The science of ABA has a long history with decades of research to support its development and evolution. While ABA is most widely known in its application to autism, ABA was developed, and has been applied, to address many circumstances regarding behavior that matter to society. ABA is applied in many different areas including mental health, animal training, organizational behavior management, marketing, forensics, sports, and physical health, to name a few. Just as other areas of science and medicine advance and application of treatments change, so has the field of ABA. Many lives have been impacted by ABA for the better. It is incumbent upon the professional community to listen, learn, and evolve its practice so that their services are as relevant and effective as possible. After all, the purpose of ABA is to help consumers of these services achieve goals they define as meaningful and helpful.

Myth: People with Autism Don’t Feel Love

by Katherine Johnson. M.S., BCBA
Senior Director of Partnerships, LEARN Behavioral

 “One of the most Googled questions neurotypicals ask about dating on the autism spectrum is, ‘Can autistic people fall in love?’” says Tasha Oswald, Ph.D., a licensed psychologist, on her blog series Dating on the Autism Spectrum. “To be honest, this question always catches me off guard,” she says. “Of course, they can.”

For those of us who know and love people on the spectrum, the question may be: how is this myth still around? For one thing, widespread abelism in our culture means that media often depicts love as happening only between people who match some arbitrary standard of ability, beauty, intelligence, or “cool” that the majority of us don’t meet. This perception is compounded by the communication differences that are a defining feature of autism: autistic people either have difficulty communicating or communicate differently than neurotypicals, including expressions of love and attraction. Additionally, sensory differences can make physical expressions of love a little more complicated, requiring explicit communication that, again, may be a challenge. And of course, it shouldn’t be missed that in general, love can be an overwhelming and confusing part of the human condition, including, but not limited to, autistic humans.

Expressions of love

The fact that autistic people experience the full range of human emotions, including love, is indisputable.

A recent article in the journal Autism examined the lived experience of autistic mothers with children ages 5-15. Answering open-ended questions in a semi-structured interview, mothers spoke of their connections with their children using the words “love,” “bond,” and “complete adoration.” Reading their accounts highlights that in spite of the barriers many of them face, their emotional experiences are quite familiar. For instance, one expressed that she felt worried that her love for her second child wouldn’t be as strong as it was for her first – a nearly universal experience of parents of multiple children (Of course, in the end she was “pleasantly surprised” that this wasn’t the case.).

Austin John Smith is an autistic blogger who has shared his experience moving in with a girlfriend and getting used to living together before getting married. As he writes lovingly about their day-to-day lives, he describes the things they have in common, their differences, how they share their emotions, and how they support each other. Smith says, “I love her more than anything in this whole world, and I am 1000% willing to go through anything with her…”

But these are stories of autistic folks who can speak and express their feelings. What about those who are unable to communicate verbally?  Laura Cunningham has first-hand experience. The Pueblo, Colorado, woman adopted her son, Spencer, when he was 11. He’s 19 now. He’s on the spectrum and is non-verbal. But “he feels love,” his mom says. Not only does he hug her and hold her hand, but he also has his own way of expressing emotion, one example of which chokes her up. It was the beginning of the school year, and she was talking to him about school. Spencer was excited and did something he had never done before: he picked up his phone and found certain sections of songs that he wanted to play for her over and over. The meaningful lyrics were his way of expressing what he was feeling.

Barriers

Although difficulty in love has been the subject of countless songs, stories, and myths since the beginning of time, autistic folks may have additional strains on their emotional connections. Sensory differences mean that the types of physical expressions of love that our society views as “typical” may not serve the same function for autistic people. For instance, the sensation of kissing may not spark the same warm feelings in an autistic partner that a neurotypical person would expect. Reading social cues, being flexible to accommodate a partner’s needs, and expressing their own emotional needs can all be challenging for autistics. For non-verbal autistic people, expressions of affection can be tragically misunderstood; one mother of a non-verbal autistic teenager named Sam related that “if a 17-year-old boy in his high school puts his arm around somebody, that’s considered fine. My son puts his arm around somebody, he gets an incident report.”

Support: Translating to the other side.

Autism expert Peter Gerhardt repeated a question posed to him by a friend on the spectrum: “if you neurotypicals have all the skills, why don’t you adapt for a while, damn it?”

So, what is society doing to support autistic people in their human quest for love? There are certainly more resources today than there were a decade ago, with support groups devoted to neurodiverse couples, books and resources for autistic people, online communities where neurodivergent people can support each other in their relationship challenges, and even a television show devoted to the topic, Love on the Spectrum.

Even so, more mechanisms for support are needed. Gerhardt says, “When I talk to professionals about the issue of sexuality and relationships on the autism spectrum, they often say, well, parents don’t want to deal with this, parents are afraid to deal with this. And then when I talk to parents about the issue, they say, well, professionals don’t want to deal with it. So, what ends up happening, is nobody deals with it, and it becomes, sort of this, you know, elephant in the living room that nobody is really dealing with.”

Debunking the myth

Society often sends the message that there is a “right way” to express love. People who love someone with autism and are loved by them know that affection can be expressed in a wide variety of ways. Still, that societal standard of what is “right” can lead autistic people to try to be someone they are not.  Anyone who has tried to be a “better version” of themselves for a partner knows how much energy it takes and that the relationships often fail. Masking is stressful and harmful. We can all help to destigmatize love among people with neurological differences and work to find more ways to support our autistic brothers and sisters in this integral part of the human experience.

Thankfully, there are a lot of beautiful success stories out there. Austin John Smith writes of his wife, “Despite all the good times we have had, there have been times where being on the spectrum has made things difficult for Annie and me. What can I say? I’m not perfect. I never will be. I just am who I am. But what I do each and every day with her is what I consider trying to do my best.” We should all be so lucky to have a partner with his perspective.

Brain Plasticity & Early Intervention: “Neurons that fire together, wire together”

The following is based on a conversation Ronit Molko, Ph.D., BCBA-D and Dr. Evian Gordon, Chairman and CEO of Brain Resource.

The development of the brain is a fascinating and essential aspect of child development. The science behind the brain provides parents and practitioners valuable insight as to why early intervention is important for individuals with autism and other developmental disabilities.

At birth, a child’s brain is a work in progress. It develops as they experience the world through seeing, hearing, tasting, touching, and smelling the environment. The natural, simple, loving encounters with adults that occur throughout the day, such as a caregiver singing, smiling, talking, and rocking their baby, are essential to this process. All of these encounters with the outside world affect the child’s emotional development and shape how their brain becomes wired and how it will work.

The experiences of babies have long-lasting effects on their ability to learn and regulate their emotions. When there is an absence of appropriate teaching and learning opportunities in the baby’s environment, the brain’s development can be affected and there are more likely to be sustained negative effects. Conversely, if we can provide ample learning opportunities, we can facilitate brain development. Let’s understand how and why.

Learning is about connection. A baby is born with more than 85 billion neurons in its brain, the major nerve cell of the brain. Neurons transmit information between each other through chemical and electrical signals via synapses thereby forming neural networks, a series of interconnected neurons. This is what is meant by “the wiring of the brain” and “neurons that fire together, wire together”. Neurons and synapses grow exponentially in the first years of life, even before a baby can walk and talk. Between birth and about 3 years of age, the number of synapses in the brain increases from about 2,500 to 15,000 per neuron.

As an infant experiences something or learns something for the first time, a strong neural connection is made. If this experience is repeated, the connection is reactivated and becomes strengthened. If the experience is not repeated, connections are removed. In this way, the brain “prunes” what is not necessary and consolidates the connections that are necessary. During infancy and the first years of childhood, there is significant loss of neural pathways as the brain starts to prune away what it doesn’t believe it will need to function. By the time your child reaches adulthood, the number of synaptic connections is reduced by half. Therefore, the earlier in a child’s development that we create that first, correct learning experience, the stronger those behaviors and skills are secured in the brain.

Children with developmental delays often experience the wiring of neurons together in a manner that is “unhelpful”, causing them to struggle with communication, social skills and other activities. These “unhelpful” connections need to be changed, which adds to the challenge and takes time. Technically, learning cannot be undone in the brain, but amazingly, with stimulation, the brain has the ability to re-process new pathways and build circuits that are helpful and functional. The brain has a remarkable capacity for change and adaptation, but timing is crucial. The earlier we create the correct connections in a child’s brain, the stronger those behaviors and skills are secured in the brain.

Intervention is best during early childhood when there are 50 percent more connections between neurons than exist in the adult brain. When a child reaches adolescence, another period of pruning begins where the brain starts to cut back on these important brain connections, and neurons that have not been used much. For children with all types of learning difficulties and developmental disorders, this understanding of the brain’s plasticity is particularly relevant, because it emphasizes why the correct type and intensity of early intervention is so critical. If we correctly understand a child’s skill deficits and design a program that appropriately stimulates the neurons in the targeted weakened areas of the brain, we can exercise and strengthen those areas of the brain to develop language, social skills etc.

While there is much evidence to support that early intervention is the preferred course of action because it capitalizes on this rapid early brain development, this wisdom often leaves parents or caretakers of teenage children with ASD feeling discouraged and concerned. Many children don’t have the opportunity to start therapy when they’re younger, and many others aren’t diagnosed until they’re teenagers. It may be easier and faster for children to learn new skills when they are younger, however, neuroscience tells us that the brain is still capable of learning during adolescent years, and this time period should not be forsaken.

So how do you train your child’s brain? In order to change the brain’s wiring and make new neural connections, a new skill needs to be practiced many times. Dr. Gordon recommends starting with one, simple task and practicing it at least 10 times per day. Measure how long it takes for your child’s behavior to change. This will help you determine your child’s rate of learning.

An example of a simple task is teaching your child to follow a simple instruction using a preferred item such as asking him to eat his favorite food. You can then move onto a more complex activity such as requesting eye contact by saying “Look at me” and then something more complex such as “touch the car” when playing with a toy car, for example. There are many opportunities throughout the day during normal daily parenting activities (bathing, feeding, diapering, reading, etc.) during which you can support your child’s development and train their brain to respond to people and their environment.

One common question is, “What is possible with the brain after childhood?” For many years, science has told us that brain plasticity is at its peak during childhood. However, experts now believe that under the correct circumstances, practicing a new skill can change hundreds of millions, if not billions, of connections between nerve cells in the brain even into adulthood. It is never too late to start. The most important thing to remember is that learning is what changes the brain and learning takes practice. Every opportunity to teach your child is an opportunity to shape their brain and change their future.

For more information, visit Developmental Milestones from the Child Mind Institute http://www.childmind.org/en/developmental-milestones/ 

Learn more about the work and resources of Dr. Evian Gordon at
https://www.mybrainsolutions.com/index.html 

Harvard’s “Serve & Return” concept of parent engagement
http://developingchild.harvard.edu/key_concepts/serve_and_return/

Top 5 Autism Studies from the Last Year

BY KATHERINE JOHNSON, M.S., BCBA
SENIOR DIRECTOR OF PARTNERSHIPS

Looking back at 2021, there were significant developments, both in research and thought leadership, in the field of autism and applied behavior analysis (ABA).  Here are some studies and papers you don’t want to have missed!

 

Girls’ Genetics and Autism

2021 gave us another important building block in the ongoing investigation in to how and why autism manifests differently in girls than in boys.  A study by Jack et. al. found that there was a much greater difference in brain activity in autistic and non-autistic girls, than was previously found between autistic and non-autistic boys when viewing biological motion.  In the second half of the investigation, they looked at the girls’ DNA.  What they found (greater differences in brain activity and more gene mutations among the girls) bolsters the “Female Protective Effect” theory, which holds that girls require more genetic predisposition to autism in order to show autistic traits.  Inquiries into how autism manifests differently depending on sex is integral to being able to more accurately identify and support girls on the spectrum.

Allison Jack, Catherine A W Sullivan, Elizabeth Aylward, Susan Y Bookheimer, Mirella Dapretto, Nadine Gaab, John D Van Horn, Jeffrey Eilbott, Zachary Jacokes, Carinna M Torgerson, Raphael A Bernier, Daniel H Geschwind, James C McPartland, Charles A Nelson, Sara J Webb, Kevin A Pelphrey, Abha R Gupta, the GENDAAR Consortium, A neurogenetic analysis of female autism, Brain, Volume 144, Issue 6, June 2021, Pages 1911–1926, https://doi.org/10.1093/brain/awab064

How Can Behavior Analysis Help Prison Reform?

Many behavior analysts have heeded the call to focus on their own cultural competence and anti-racism work; this paper outlines ways they can put those skills to good use.  Crowe and Drew review the history and current state of a social injustice faced by many people with disabilities: segregation via incarceration.  The authors posit that behavior analysts can help to interrupt the “school-to-prison pipeline” and outline their theory.  Although the authors call for a grand restructuring of the prison system (including abolition of the current system), they also offer thoughts on how behavior analysis could improve current institutions.

Crowe, B., & Drew, C. (2021). Orange in the new asylum: Incarceration of individuals with disabilities. Behavior Analysis in Practice, 14(2), 387-395. https://doi.org/10.1007/s40617-020-00533-9

Bridge Over Troubled Water…

If you have been following the conversation about ABA and neurodiversity, you’ll want to read this paper.  A group of Autistic and Non-Autistic authors challenge the belief that ABA is inherently harmful for Autistic people and proposes the perspective that behavioral interventions can be “compatible with the neurodiversity paradigm.”  After a history of autism and behavioral interventions, the authors delve into a thorough discussion of how Naturalistic Developmental Behavior Interventions may bridge the gap between opposing viewpoints about the use of behavioral interventions with people on the spectrum.

Schuck RK, Tagavi DM, Baiden KMP, Dwyer P, Williams ZJ, Osuna A, Ferguson EF, Jimenez Muñoz M, Poyser SK, Johnson JF, Vernon TW. Neurodiversity and Autism Intervention: Reconciling Perspectives Through a Naturalistic Developmental Behavioral Intervention Framework. J Autism Dev Disord. 2021 Oct 13. doi: 10.1007/s10803-021-05316-x. Epub ahead of print. PMID: 34643863.

The Function of…. Happiness?

And the Functional Analysis (FA) gets another twist!  Thomas et. al. assessed whether or not paying attention to indices of happiness would assist in finding effective interventions to decrease challenging behavior.  They found that when interventions were derived from what they learned about the children’s happiness, they were as effective as interventions based solely on the function of the challenging behavior, and they were associated with more behavior associated with happiness.  In the search for effective treatments that are maximally acceptable to consumers, this is a useful addition to the FA!

Thomas BR, Charlop MH, Lim N, Gumaer C. Measuring Happiness Behavior in Functional Analyses of Challenging Behavior for Children with Autism Spectrum Disorder. Behav Modif. 2021 May;45(3):502-530. doi: 10.1177/0145445519878673. Epub 2019 Sep 30. PMID: 31565953.

Assent in Research

With the addition of “assent” to the BACB Code of Ethics, behavior analysts have begun the search for research, resources, and materials on the topic.  After a discussion of the federal statute and how it may or may not apply to autistic subjects, the authors discuss assent in the context of the behavior analytic values of self-determination and choice.  They then examine how frequently assent has been obtained in the behavior analytic research (spoiler alert: not frequently), note the methods that have been used, and propose a procedure for obtaining assent from nonverbal potential research participants.  This may be the only JABA article on assent in 2021, but it’s a fair bet that it will inspire many more in 2022.

Morris C, Detrick JJ, Peterson SM. Participant assent in behavior analytic research: Considerations for participants with autism and developmental disabilities. J Appl Behav Anal. 2021 Sep;54(4):1300-1316. doi: 10.1002/jaba.859. Epub 2021 Jun 18. PMID: 34144631.

Myth: Kids with Autism Don’t Have Emotions

BY KATHERINE JOHNSON, M.S., BCBA
SENIOR DIRECTOR OF PARTNERSHIPS

My cousin, a teenager with a broken heart, lay on my couch, crying. Her little brother, a mostly-non-verbal autistic four-year-old, wiped the tears off of her face and then tickled her to get her to laugh. 

A boy I worked with many years ago wanted desperately to get his baby brother to stop crying. He ran to get some scissors and told his mom, “Tag, Tag!” He, himself, was often irritated by tags in clothing, and, seeing his brother inconsolable, believed that maybe the tag in his onesie was the cause of his distress.    

A young autistic girl in a social skills group I ran years ago woke up earlier than her parents one day. She got out every glass, bottle, cup, and bowl in the house and arranged them in intricate patterns around the kitchen floor. When her mother got up, she looked up with pride and said, “Mommy, I made breakfast for you!” 

Autistic people have emotions. They love, they hurt, they empathize, and they care. So, where in the world did the myth about being “unemotional” come from?

The answer may be in the concept of alexithymia.

Alexithymia refers to the inability to recognize and express emotions. It’s not considered a clinical diagnosis or disorder but rather a condition or a personality trait, and has been studied since the 1970s. It occurs in about 10 to 13 percent of the general population but is more common among people on the spectrum, occurring in close to 50 percent of autistic folks—a high prevalence that may lead to people confusing the trait with autism itself.

If you or your child experiences alexithymia, then you know firsthand that those with this trait still have deep feeling—they just have difficulty naming their emotions and explaining their feelings. Some may not be able to distinguish between their emotions and the bodily sensations connected to them, and may have less imagination or ability to fantasize than those without alexithymia. As one non-autistic man with alexithymia explained it: “Obviously, I’ve got a vocabulary. I’ve got words for emotions. But whether they’re the right words for the right emotion is a different point altogether.…”

Although experts have been unable to pinpoint a cause, research suggests a genetic component, and that environmental factors such as trauma, health conditions, and socioeconomic factors may play a part.  A brain injury to the anterior insula can also cause alexithymia.

As parents and caregivers, we are always eager for more information on what we can do to help our children. Since autistic people are more likely to have alexithymia, it is important that family members, service providers, and the community at large understand the condition and the unfortunate risks that come with it. For instance, research suggests that people with alexithymia experience depression and anxiety significantly more often than those without the condition—problems that should be taken seriously and treated.

Anxiety and depression may be due to people not understanding their own feelings, and to the effects alexithymia can have on their personal relationships. For example, some people with the condition report that they know when other people are experiencing negative emotions, which can feel distressing. Not understanding what those emotions are or how to react to them can make the situation even worse. For these reasons, it’s important for others to recognize that what may just seem like a simple skill deficit can affect an individual’s quality of life and well-being far more than they are able to communicate. And of course, if the person also has autism, communication may be even more difficult.

When one team of researchers conducted a meta-analysis of studies on alexithymia and autism, they concluded that although the two things can co-occur, alexithymia is NOT a core feature of autism— although there isn’t yet a consensus. Regardless, since alexithymia appears to increase the risks for mental health challenges like anxiety and depression, and for unhealthy behaviors like greater alcohol consumption and lower levels of physical activity, healthcare providers consider it a trait that is important to identify. This way, alexithymic individuals—autistic and non-autistic alike—can be proactively supported in all of these areas.

The last few years have seen more and more autistic people raising their voices, sharing their experiences, and inviting others to hear their stories. As we listen, it’s important that we all work to dispel myths around autism, so that we can see people for who they truly are. Alexithymic autistic people have emotions, like everyone else. They just need support from loved ones in expressing and processing their feelings, and they need professionals to understand their unique needs so they can provide the best assistance. Likewise, non-alexithymic autistics deserve to be seen as themselves—and not bogged down in harmful myths about their lack of an emotional inner life. Once again, science arrives at a truth that harmonizes with what philosophers have long told us: regardless of what we look like—or behave like—on the outside, we are all humans, craving to connect emotionally with other humans.

For more on mental health and autism, listen to our recent podcast, “Nobody’s Normal: How Culture Created the Stigma of Mental Illness.” Here, Roy Richard Grinker, a professor of anthropology and international affairs at George Washington University, explores stigmas around various diagnoses, including autism.

Gaigg SB, Cornell AS, Bird G. The psychophysiological mechanisms of alexithymia in autism spectrum disorder. Autism. 2018 Feb;22(2):227-231. doi: 10.1177/1362361316667062. Epub 2016 Nov 2. PMID: 27811193.

Martino, G., Caputo, A., Vicario, C. M., Catalano, A., Schwarz, P., Quattropani, M. C. (2020).  The Relationship Between Alexithymia and Type 2 Diabetes: A Systematic Review.  Frontiers in Psychology, 11, 20-26.  DOI: 10.3389/fpsyg.2020.02026.

Kinnaird, E., Steward, C., & Tchanturia, K. (2019).  Investigating alexithymia in autism: A systematic review and meta-analysis.  European Psychiatry, 55, 80-89.  doi: 10.1016/j.eurpsy.2018.09.004.