Total Spectrum

Total Spectrum provides ABA therapy to help children with autism.

Ronit Molko

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.

What is Contemporary ABA?

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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.

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/

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

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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.

Neurodiversity: What It Means, Why It Matters

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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.