Trellis ABA

Trellis provides ABA therapy to help children with autism.

Blog

What is Contemporary ABA?

by Leave a Comment

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.

Perspectives: Why Access to ABA Is a Matter of Social Justice

by Leave a Comment

BY NATHAN FRANKLIN
MANAGING BEHAVIORAL TREATMENT TECHNICIAN, WEAP, MILWAUKEE

As our country starts the process of distributing vaccines for COVID-19 and re-opening our cities, many people are hoping that 2021 delivers a return to normal. We are getting that first glimpse of a promising horizon. But instead of trying to return to the old normal, we have a chance to establish a new and better normal, informed by the experiences of the past year.

The coronavirus pandemic brought many new problems to our lives in 2020, but it also exposed problems that have long existed, particularly the racial inequities that are so deeply and structurally rooted in our country.

One of the more well-documented areas of racial disparities is in the area of health care, including behavioral treatment for autism spectrum disorder (ASD), with which I am personally involved. I’ve spent the last 10-plus years providing applied behavior analysis (ABA) therapy to children with autism in Milwaukee at Wisconsin Early Autism Project (WEAP). Studies show that Black and Hispanic children are diagnosed with autism at an older age than white children, are more likely to be misdiagnosed initially, and are less likely to receive an accurate diagnosis at all. Because the best outcomes for children with ASD depend heavily on early diagnosis and treatment, reading these studies was revealing—and brought the issues of racial justice to the forefront of my personal focus.

As a white man working with many children and families of color, I find the reality of a delayed or even absent diagnosis alarming and upsetting—and consider access to ABA a social justice issue that I can personally and directly help address. While I realize the causes of these disparities are complex and must be understood through a larger lens of historic and systemic racism in our societal institutions, I believe we can all make progress addressing these inequalities by starting in our own circles to seek understanding and solutions.

The good news is that by many measurements, the diagnosis gap is beginning to show signs that it is closing, though the problem is far from solved. Getting a diagnosis is only the first step, however, after which actually accessing the necessary services is key. And here again, race, ethnicity, and socioeconomic status can affect access to treatment and the quality of treatment.

For a long time, I took for granted that the vast majority of children I’ve worked with have been Medicaid-funded. Unfortunately, many providers simply do not accept Medicaid clients. While I’m grateful to work for a company that is the exception to that rule, I would call on the federal government, state government, and providers to do more to increase access to services. No one should be denied services because of their income, and since the economic disparities in this country are tied to historic and structural racism, it is not just a matter of social justice but also racial justice to ensure that quality treatment is available to everyone who needs it.

There are other obstacles that can contribute to the lack of access to ABA. For example, many ABA services take place in a client’s home, creating an unintentional barrier for working families, given that home-based services require the presence of a parent or guardian. For families who need multiple people working multiple jobs just to make ends meet, this requirement alone can prevent them from accessing services.

One possible solution is to provide opportunities for treatment that children can receive without their parent or caregiver. In the beginning of 2021, WEAP opened a learning center in the city of Milwaukee, giving communities of color the more convenient access they didn’t previously have but needed. Access is important, and the difference between traveling across a city and having resources in your own neighborhood can be the difference between receiving services—and not.

The services provided for children with ASD are no exception to the general rule of racial inequities, though the research and our understanding are only beginning to develop. For anyone inclined towards research, this is an open invitation to look into these issues more deeply. The experiences of the past year have given us new perspectives to understand that solving a widespread problem requires a combination of research, structural changes, and personal responsibility to do our part in our own worlds. For those of us heavily involved in the world of ASD, this historic opportunity to pursue a new and better normal calls on us to recognize, understand, and address the injustices in our field—and to act with a sense of urgency to ensure that our treatment options continue to improve not only in quality but also in equality.

Myth: People with Autism Don’t Feel Love

by Leave a Comment

 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. 

Lasting Happiness – How to be kinder to yourself and others

by Leave a Comment

Professor Emeritus at the University of Oregon and President of the Choose Kindness Foundation, Doug Carnine joins us to discuss his work with the Choose Kindness Foundation that works with schools, businesses, prisons, and social service agencies across the US to promote mindful kindness. 

For More Information:

Dr.Carnine’s website https://feedkindness.com/

Teen mindfulness program https://choosekindnessfoundation.info/the-mindful-kindness-program/

Choose kindness foundation https://choosekindnessfoundation.info/

Interested in ABA services for your child? Contact Us: https://lrnbvr.com/contact

Interested in a career in the ABA field? Apply Now: https://lrnbvr.com/apply-now

All Autism Talk (allautismtalk.com) is sponsored by LEARN Behavioral (learnbehavioral.com)

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

by Leave a Comment


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 Leave a Comment

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 Leave a Comment

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. 

Spotlight on Diversity in ABA: An Interview with Joshua Polanco

by Leave a Comment


A board certified behavior analyst (BCBA), managing technician, at LEARN’s Autism Spectrum Therapies (AST) in California’s Inland Empire region, Joshua Polanco provides supervision and behavioral intervention plans for clients in need of ABA services. He earned a master’s degree in psychology and ventured into ABA because he wanted to use that degree in a more direct and meaningful way. He’s also legally blind.

Here, he shares stories from his journey and experience working with children and young adults with autism—and his take on the importance of diversity, equity, and inclusion (DEI) in the field of applied behavior analysis (ABA).

Q: WHY DID YOU GET INTO ABA?

A: I was working as a behavioral technician and providing one-to-one services with multiple clients. I was about to quit after the first two weeks of working in the ABA setting because I did not have any experience with children with disabilities and felt like I was not helping my clients. Ironically, the clients and their families are what made me stay. To me, nothing can beat the sensation of knowing you have made a difference in someone’s life, and I have had so many fun experiences that helped me realize the importance of ABA, and how prevalent it is in our everyday lives. All of these experiences are what drove me to continue pursuing ABA to the position where I am now.

Q: WHAT DOES DIVERSITY, EQUITY, AND INCLUSION (DEI) MEAN TO YOU?

A: Everything. I feel these concepts as a whole are very overlooked at times. It’s not only important to have diversity, equity, and inclusion in the workplace but to also recognize the benefits provided when DEI is incorporated into a work environment. In my case, I may be legally blind, but that does not make me useless in a work environment that relies heavily on vision. I am able to continue to make an impact on peoples’ lives through my work and can actually provide a different perspective and understanding when helping clients or co-workers because of my loss of vision. 

Q: IN YOUR OPINION, WHAT IS THE MOST CHALLENGING ASPECT OF WORKING IN A DIVERSE ENVIRONMENT?

A: Trying to comprehend various interactions that take place. Balancing the state of empathy and understanding, while simultaneously needing to support and accomplish work objectives that need to be achieved.

Q: WHAT IS YOUR APPROACH TO UNDERSTANDING THE PERSPECTIVES OF COLLEAGUES OR CLIENTS FROM DIFFERENT BACKGROUNDS?

A: The short, easy answer is that I take a step back and just listen. Self-awareness and self-control over your own biases and habits go a long way. It’s important to me to recognize the limitations you have in the moment. For example, you may not always be able to truly understand the perspective of others. This is OK—we are only human. I feel like there are ways to still attempt to understand to some degree. Failure to truly understand someone should not give us permission to disregard their perspective.

I’ve relied, to some degree, on multiple psychology books, articles, and notes from when I obtained my master’s degree in psychology, with an emphasis in clinical counseling and marriage and family therapy. When communicating with colleagues and clients, I always try to review and remember the concepts I learned on the dynamics of communication, including those on cognitive distortions and positive feedback loops. Understanding these can play a huge role on how I understand and communicate during a conversation.

Q: WHY IS DEI IMPORTANT IN ABA?

A: Without DEI, we would be refusing to grow ABA as a whole. ABA is a science that expands to more than any one individual population. Part of everything we do is to help, expand, and make a difference in the world. What better way to accomplish this than to recognize the different things people have to contribute.


Q: TELL ME ABOUT A TIME WHEN YOU ADVOCATED FOR DIVERSITY AND INCLUSION IN THE WORKPLACE OR IN YOUR PERSONAL LIFE.

A: One poignant instance in which I had to advocate for myself is the moment I was officially diagnosed blind, and I had to reach out to the HR department to figure out some resolutions and next steps forward. Luckily, I was part of a supportive team and was able to continue doing the core work I was educated to do and hired for, with some slight accommodations and adjustments.


Q: WHAT’S SOMETHING MOST COLLEAGUES DON’T KNOW ABOUT YOU?

A: I do not know how many people know that I am legally blind. My condition is called Retinitis Pigmentosa (RP). There is no treatment. With this condition, my vision will gradually worsen. There is no telling how much vision I will lose tomorrow…or over the next 30 years. I don’t only have to think about how this affects the work I do with clients but how I adjust my everyday life to prepare for this. Through my work with rehabilitation specialists, I am learning to use technology, to read braille, and even to cook without looking.

Q: ANYTHING ELSE YOU’D LIKE TO ADD?

A: I was diagnosed legally blind less than a year ago. In that time, I’ve taken and passed the BCBA exam, which was the first test I’ve ever had to study for and take without my vision, while finding ways to balance my work, as I learn a new lifestyle. I hope the message from all of this is one of inspiration—that no matter how bad things may seem, it’s important not to let the events around you, define you. Take control of the things you can, adapt, and persevere through the adversity. Because this is what we ask of our clients each day.

For more from our Spotlight on Diversity in ABA series, read “An Interview with Angela Parker.”

Why Adherence to Your Behavior Analyst’s Clinical Recommendation is Critical to Success

by Leave a Comment

Parents and caregivers will do just about anything to provide for their children’s needs and requirements.  Unfortunately, for those whose children require additional supports and services, this can feel nearly impossible. For parents and caregivers of children on the autism spectrum, who are already struggling to meet the demands of their schedules and responsibilities, the added time and energy required to support intensive weekly ABA therapy hours can be difficult and overwhelming. The result is quite often a compromise on therapy hours which can seriously impact the child’s progress.

What commonly occurs in autism services is parents will seek ABA therapy for their child, knowing that it is considered the gold standard for autism intervention with decades of research and evidence to support its efficacy. As part of this process, the ABA provider will observe and assess the child, as well as interview the family to determine their recommendation for weekly hours of ABA services based on the child’s needs, age, and other determining factors. What we commonly see, however, is families not making their children available for the recommended hours. While not being able to reach the clinically recommended hours is affected by multiple factors such as family schedules, staffing issues, sickness, weather and other extenuating factors, lack of access to the child often accounts for anywhere from 5-40% of weekly clinically recommended hours not occurring.

Families who do this are typically trying to compromise between their child’s needs and the demands of their other responsibilities—and managing and navigating the needs of a child with special needs alongside all the competing needs and requirements of daily life is challenging. However, if one looks at this objectively, it is akin to getting a prescription from a doctor and telling the pharmacist to only give you part of it. Most families assume that with fewer hours per week, their child will still progress and learn new skills but at a slower pace. Unfortunately, this is not necessarily the case.

It is true that ABA therapy is unique in its intensity, but this is a core component of why ABA is so effective. ABA is effective at helping a child catch up to and develop alongside their chronological age when the recommendation for frequency and intensity of services is adhered to. There are decades of research to support the efficacy of ABA at teaching the skills necessary for communication, social interactions and self-management. In a recent research study which included 1,468 children with autism ranging in age from 18 months to 12 years old, treatment intensity and duration were both significant predictors of mastering learning objectives and goals across eight domains of functioning (academic, adaptive, cognitive, executive function, language, motor, play and social). Similar findings have been reported from other researchers over the decades. Overall, studies have strongly indicated that treatment intensity has significant positive effects on individual progress and the acquisition of skills.

Intensity or “dosage” of treatment will vary by client and should always be individualized to the child’s needs and goals. Generally, for children under the age of 5, more intensive hours are recommended to capitalize on the intensive brain growth during the first 5 years of age and to stimulate a child’s brain before children enter Kindergarten. Once a child is engaged in learning at school at least 3 hours per day, treatment recommendations generally include 15-20 hours per week. Again, recommendations for intensity and duration of intervention should always be based on a detailed assessment of your child’s needs, level of functioning compared to other children of their current age, and your child’s individual goals.

It’s very important that parents and caregivers of young children with autism spectrum disorder understand that ABA is the gold standard of treatment but is only most effective when the program recommendations are adhered to entirely. The structure and design of an ABA program is essential to its outcomes. While it is understandable that parents are trying to do their best to meet the demands of their family’s schedule, it is vital to consider the research when making decisions regarding how to prioritize interventions. Finding that extra time every week to ensure that your child is receiving their recommended amount of ABA can make a huge difference in their life and yours.