Tag: autism

Understanding the IEP Process and How to Best Advocate for Your Child

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Mo Buti, an advocate and instructional expert for people with autism joins us to take a deep dive into the IEP process. She shares details about all the people that make up the team and how parents can best prepare and advocate for their child. As Mo shared, “It’s so important that communicate well and build relationships with your team. Even if you disagree, it makes the process so much more successful.”

For More Information:
https://www.aiepautism.com/

 

MYTH: Nonverbal or Nonspeaking People with Autism are Intellectually Disabled

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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

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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.

Myth: People with Autism Don’t Feel Love

Published:
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”

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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/

Spotlight on Diversity in ABA: An Interview with Joshua Polanco

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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.”

The September 26th Project: Safety Preparedness for Families with Autism

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The September 26th was created to honor the lives of a family that was tragically lost in a home fire. By providing safety awareness and preparedness resources for families the mission of this initiative is to review their safety plans every year on September 26th and use their checklists to be prepared. Kelly also commented on the importance of caregivers to support safety preparedness and awareness. As she said, “If a child can’t get out of the house in the event of a fire, were the other goals addressed important?”  

For More Information: 

Visit their website: https://www.september26.org/ 

Download the Fire safety check-list 

Download the Natural disaster checklist 

Download the Wondering prevention checklist  

Download American Red Cross Emergency apps here  

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

Neurodiversity: What It Means, Why It Matters

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

If there is one enduring hallmark of the American experience, it’s the immense diversity found within our expansive borders. Most of the time, we perceive diversity via differences in skin color, language, clothing, places of worship, or even the foods people eat when gathered around the table with their families. There is, however, one major aspect of diversity that is often overlooked—one that comes as no surprise, considering it cannot be detected solely through visual means. I am, of course, referring to neurodiversity.

Coined in the late 1990s by sociologist Judy Singer—who is on the autism spectrum—neurodiversity is a viewpoint that characterizes brain differences among individuals as normal, rather than as a disability. This viewpoint reduces stigmas around learning and thinking differences, while calling attention to the ability of neurodivergent communities to benefit from multiple perspectives and make greater contributions to society. Central to the movement is a rejection of the idea that these unique individuals need to be cured or fixed. Instead, it’s held that people possessing different types of brains need to be embraced and provided support systems that allow them to participate and contribute as members of the community to the best of their ability.

Grounded in Science

Unsurprisingly, the foundations of this not so new movement are grounded firmly in science and empirical study. By leveraging MRI results from hundreds of individuals, researchers have been able to compare the brains of people diagnosed with learning differences to their counterparts. So far, studies have shown that the brains of neurodivergent individuals are, in fact, unique. For example, the part of the brain that maintains language processing works differently for people diagnosed with dyslexia. Additionally, the prefrontal cortex, which manages executive functioning and attention, develops much slower in children diagnosed with ADHD. In other words, these individuals are not necessarily operating with a learning deficit but rather possess brains that are literally wired differently.

A Neurodiverse Population

Whether a group of kids recently diagnosed with autism or adults still grappling with ADHD or dyslexia, the American neurodiverse population is quite substantial. According to a 2021 report from the Center for Disease Control and Prevention, one in every 44 children in the United States is diagnosed with some sort of autism spectrum disorder, and an estimated 5.4 million adults—or roughly 2.2 percent of the entire population—fall somewhere along the spectrum. Many people on the spectrum have contributed (or still do) to their communities every day, such as Albert Einstein, Anthony Hopkins, Henry Cavendish, Greta Thunberg, Jerry Seinfeld, and Elon Musk. They have been among the world’s highest achievers, impacting the arts, sciences, technological innovation, and activism.

In much the same way as the neurotypical population, the neurodivergent population is broad, diverse, and multidimensional. It’s crucial, then, for the public not only to embrace their different brethren but also to actively promote opportunities for them both in society and in the workplace at all abilities and levels.

Fortunately for society writ-large, corporate America is starting to take notice. A recent article published in the Harvard Business Review named neurodiversity as a bona fide “competitive advantage,” noting the unique and, often, incomparable output provided by atypical members of their workforce. Numerous companies, including Hewlett-Packard, Enterprise, Microsoft, SAP, and Ford, have recently begun to reform their HR practices in an effort to expand neurodiversity in their ranks by identifying, hiring, and empowering these unique individuals. The results, so far, have been outstanding, with managers noting legitimate “productivity gains, quality improvements, boosts in innovative capabilities, and broad increases in employee engagement.”

Diversity of all kinds, including neurodiversity, strengthens our daily institutions. Just as we are seeing a focus on diversity, equity, and inclusion (DEI) in employment and other areas of life and commerce, we must also remember that recognizing and celebrating differences, promoting justice and fairness, and ensuring true support and inclusion applies not only to people with observable differences but also to our neurodiverse populations. Not all cognitive differences are visible, and it’s crucial to keep in mind that there’s more than meets the eye when it comes to true diversity.

In another blog post, Dr. Molko explains the history and evolution of applied behavior analysis (ABA) therapy. Read the story.

TSC: A Rare Genetic Disease with a 50% Autism Diagnosis

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Kari Luther Rosbeck, President & CEO, TSC Alliance, and Steven L. Roberds, PhD, Chief Scientific Officer, TSC Alliance join us for a discussion about Tuberous Sclerosis Complex (TSCA) a rare genetic disorder. This is an incredibly educational conversation on how this disease is identified and treated.  About 50% of those diagnosed with TSC, will also have a diagnosis of autism. Even if your child is not at risk for TSC, the thoughtful approach to treatment and resources can be valuable for all parents. As Kari shared, “When people are ready, they need to know; what are the  right questions to ask, what about genetic testing, what about medication, and how does that whole system work?”

 

Learn more about TSC Alliance by visiting tscalliance.org

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How Parents and Caregivers of Kids with Autism Cope with Stress

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


Parenting can be stressful, and research shows that parents of autistic children consistently score higher on stress indicators than other groups of parents. While stress can be good for us—in manageable doses, it can energize and motivate—prolonged bouts of stress can lead to health problems. In fact, parents of autistic children report that they experience more depression, anxiety, and stress-related health problems than other parents. Parental stress has also been associated with marital distress, less effective parenting, and dropping out of treatment.

Why is this? Although no causal relationships have been definitively shown to exist between parental stress and kids with autism, several factors likely play a role. Some families cite pressure to get treatment early on, amplified by stories of “recovery.” A lack of sleep, financial burdens magnified by the need to pay for treatments, a greater necessity for parental vigilance and advocacy, and the presence of challenging behavior can also contribute to more parental stress.

If parents of kids with autism do, as research indicates, experience higher stress, what, then, does the research say can help parents and caregivers cope? Here are three research-backed suggestions:

      1. Effective treatment for children

It stands to reason that effective treatment can mitigate some of the parental stress experienced by families with autistic children, particularly those whose children struggle with communication and challenging behavior. As numerous studies suggest, the effects of challenging behavior (aggression, defiance) on the family system are a major factor in parenting stress.

What, then, triggers or leads to challenging behavior? Often, challenging behavior is precipitated by communication difficulties or unexpressed/untreated pain—and, as you likely know, autistic children have more health problems than typical children. Intervention that supports your child’s communication, assists them in accessing medical services, and arms you with behavior management tools can lower distress in both child and parents. Likewise, reducing challenging behavior can also help you avoid the social stigma and feelings of exclusion and isolation that many parents report.

      2. Coping strategies

Some research suggests that how parents direct their focus has an impact: those who concentrate on getting help, solving problems, and finding meaning in their experiences have better outcomes than those who avoid their emotions and stressors. It’s also clear that social supports can ease parent stress; this may be in the form of emotional support (family, friends, other ASD families), informational support (schools, professionals), or online communities. Other coping strategies found to be important in reducing stress include:

Optimism – Your family can cultivate optimism by shifting thoughts about why things are happening to what we can do to change them. For example, say a favorite service provider is leaving. A pessimistic parent might think they are partially to blame for the provider leaving (perhaps: she doesn’t care about us enough to stay), while a parent shifting to optimistic thinking may chalk up the loss of a provider to simply bad luck, and something that everyone experiences from time to time. The pessimistic parent may feel helpless in the face of changing providers, while a parent shifting to optimistic thinking will focus on what they can do to help the next provider be successful.

Emotional acceptance – Some parents report acceptance as a coping strategy that tempers stress. Continuously comparing an autistic child and their development to that of a non-autistic child can perpetuate anxiety. Accepting that an autistic child has unique needs, such as additional educational services and a parenting approach that is quite different from the approach used with siblings, can help ease some parental distress.

Cognitive reframing – Cognitive reframing is a coping strategy that can help families who have a child with differences adjust. For instance, parents might reframe their situation to see difficult events, rather than a difficult child, and view those difficulties as manageable—i.e., as problems that have a solution.

     3. Mindfulness

A growing number of studies reveal that mindfulness programs can help reduce the additional stress experienced by parents of autistic children. Generally, programs consist of meditation, focusing on physical sensations, and letting go of thoughts. Some also include a discussion of stressors or light stretching. Parents participating in mindfulness programs report decreases in stress and depression, improvements in sleep and health, and increased self-compassion and feelings of well-being. In a study that paired mindfulness practice with training in positive behavior supports, the mothers experienced stress relief, while simultaneously learning strategies that significantly reduced their children’s aggressive and disruptive behaviors.

Raising a child with communication and behavior challenges is incredibly stressful, but it doesn’t have to sentence you to a life defined by stress. Do your best to recognize when the pressures of your life are creating a chronic stress situation, and take steps toward relieving the strain. This will not only improve your own health and happiness but also benefit your autistic child and the entire family system.

To read one mom’s account of the stress of parenting, see “To All the Other Parents of Children with Special Needs: I Feel You.” To dive into the research on coping strategies for parents and caregivers of kids with autism, see these studies:

Bazzano, A., Wolfe, C., Zylowska, L., Wang, S., Schuster, E., Barrett, C., & Lehrer, D. (2015). Mindfulness based stress reduction (MBSR) for parents and caregivers of individuals with developmental disabilities: A community-based approach. Journal of Child and Family Studies, 24(2), 298–308. https://doi.org/10.1007/s10826-013-9836-9

Da Paz, N. S., Siegel, B., Coccia, M. A., & Epel, E. S. (2018). Acceptance or Despair? Maternal Adjustment to Having a Child Diagnosed with Autism. Journal of autism and developmental disorders, 48(6), 1971–1981. https://doi.org/10.1007/s10803-017-3450-4

Ekas, N.V., Lickenbrock, D.M. & Whitman, T.L. Optimism, Social Support, and Well-Being in Mothers of Children with Autism Spectrum Disorder. J Autism Dev Disord 40, 1274–1284 (2010). https://doi.org/10.1007/s10803-010-0986-y

Fox, L., Dunlap, G., & Powell, D. (2002). Young children with challenging behavior: Issues and consideration for behavior support. Journal of Positive Behavior Interventions, 4, 208–217.

Lucyshyn, J. M., Dunlap, G., & Albin, R. W. (Eds.). (2002). Families and positive behavior support. Baltimore, MD: Brookes.

Siah, P. C., and Tan, S. H. (2016). Relationships between sense of coherence, coping strategies and quality of life of parents of children with autism in Malaysia: a case study among chinese parents. Disabil. CBR Inclus. Dev. 27, 78–91.

Singh, N. N., Lancioni, G. E., Karazsia, B. T., Myers, R. E., Hwang, Y. S., & Anālayo, B. (2019). Effects of Mindfulness-Based Positive Behavior Support (MBPBS) Training Are Equally Beneficial for Mothers and Their Children With Autism Spectrum Disorder or With Intellectual Disabilities. Frontiers in psychology, 10, 385. https://doi.org/10.3389/fpsyg.2019.00385

Walsh, C. E., Mulder, E., Tudor, M. E. (2013). Predictors of parent stress in a sample of children with ASD: Pain, problem behavior, and parental coping. Research in Autism Spectrum Disorders, 7, 256-264.