The Autism Journey: Accepting vs. Resisting A Diagnosis
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Tag: autism
Myth: People with Autism Don’t Feel Love
Brain Plasticity & Early Intervention: “Neurons that fire together, wire together”
The following is based on a conversation Ronit Molko, Ph.D., BCBA-D and Dr. Evian Gordon, Chairman and CEO of Brain Resource.
The development of the brain is a fascinating and essential aspect of child development. The science behind the brain provides parents and practitioners valuable insight as to why early intervention is important for individuals with autism and other developmental disabilities.
At birth, a child’s brain is a work in progress. It develops as they experience the world through seeing, hearing, tasting, touching, and smelling the environment. The natural, simple, loving encounters with adults that occur throughout the day, such as a caregiver singing, smiling, talking, and rocking their baby, are essential to this process. All of these encounters with the outside world affect the child’s emotional development and shape how their brain becomes wired and how it will work.
The experiences of babies have long-lasting effects on their ability to learn and regulate their emotions. When there is an absence of appropriate teaching and learning opportunities in the baby’s environment, the brain’s development can be affected and there are more likely to be sustained negative effects. Conversely, if we can provide ample learning opportunities, we can facilitate brain development. Let’s understand how and why.
Learning is about connection. A baby is born with more than 85 billion neurons in its brain, the major nerve cell of the brain. Neurons transmit information between each other through chemical and electrical signals via synapses thereby forming neural networks, a series of interconnected neurons. This is what is meant by “the wiring of the brain” and “neurons that fire together, wire together”. Neurons and synapses grow exponentially in the first years of life, even before a baby can walk and talk. Between birth and about 3 years of age, the number of synapses in the brain increases from about 2,500 to 15,000 per neuron.
As an infant experiences something or learns something for the first time, a strong neural connection is made. If this experience is repeated, the connection is reactivated and becomes strengthened. If the experience is not repeated, connections are removed. In this way, the brain “prunes” what is not necessary and consolidates the connections that are necessary. During infancy and the first years of childhood, there is significant loss of neural pathways as the brain starts to prune away what it doesn’t believe it will need to function. By the time your child reaches adulthood, the number of synaptic connections is reduced by half. Therefore, the earlier in a child’s development that we create that first, correct learning experience, the stronger those behaviors and skills are secured in the brain.
Children with developmental delays often experience the wiring of neurons together in a manner that is “unhelpful”, causing them to struggle with communication, social skills and other activities. These “unhelpful” connections need to be changed, which adds to the challenge and takes time. Technically, learning cannot be undone in the brain, but amazingly, with stimulation, the brain has the ability to re-process new pathways and build circuits that are helpful and functional. The brain has a remarkable capacity for change and adaptation, but timing is crucial. The earlier we create the correct connections in a child’s brain, the stronger those behaviors and skills are secured in the brain.
Intervention is best during early childhood when there are 50 percent more connections between neurons than exist in the adult brain. When a child reaches adolescence, another period of pruning begins where the brain starts to cut back on these important brain connections, and neurons that have not been used much. For children with all types of learning difficulties and developmental disorders, this understanding of the brain’s plasticity is particularly relevant, because it emphasizes why the correct type and intensity of early intervention is so critical. If we correctly understand a child’s skill deficits and design a program that appropriately stimulates the neurons in the targeted weakened areas of the brain, we can exercise and strengthen those areas of the brain to develop language, social skills etc.
While there is much evidence to support that early intervention is the preferred course of action because it capitalizes on this rapid early brain development, this wisdom often leaves parents or caretakers of teenage children with ASD feeling discouraged and concerned. Many children don’t have the opportunity to start therapy when they’re younger, and many others aren’t diagnosed until they’re teenagers. It may be easier and faster for children to learn new skills when they are younger, however, neuroscience tells us that the brain is still capable of learning during adolescent years, and this time period should not be forsaken.
So how do you train your child’s brain? In order to change the brain’s wiring and make new neural connections, a new skill needs to be practiced many times. Dr. Gordon recommends starting with one, simple task and practicing it at least 10 times per day. Measure how long it takes for your child’s behavior to change. This will help you determine your child’s rate of learning.
An example of a simple task is teaching your child to follow a simple instruction using a preferred item such as asking him to eat his favorite food. You can then move onto a more complex activity such as requesting eye contact by saying “Look at me” and then something more complex such as “touch the car” when playing with a toy car, for example. There are many opportunities throughout the day during normal daily parenting activities (bathing, feeding, diapering, reading, etc.) during which you can support your child’s development and train their brain to respond to people and their environment.
One common question is, “What is possible with the brain after childhood?” For many years, science has told us that brain plasticity is at its peak during childhood. However, experts now believe that under the correct circumstances, practicing a new skill can change hundreds of millions, if not billions, of connections between nerve cells in the brain even into adulthood. It is never too late to start. The most important thing to remember is that learning is what changes the brain and learning takes practice. Every opportunity to teach your child is an opportunity to shape their brain and change their future.
For more information, visit Developmental Milestones from the Child Mind Institute http://www.childmind.org/en/developmental-milestones/
Learn more about the work and resources of Dr. Evian Gordon at
https://www.mybrainsolutions.com/index.html
Harvard’s “Serve & Return” concept of parent engagement
http://developingchild.harvard.edu/key_concepts/serve_and_return/
Spotlight on Diversity in ABA: An Interview with Joshua Polanco
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
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
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
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
Interested in ABA therapy for your child? Contact us https://lrnbvr.com/contact
All Autism Talk (allautismtalk.com) is sponsored by LEARN Behavioral (learnbehavioral.com)
How Parents and Caregivers of Kids with Autism Cope with Stress
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.
Managing Your Child’s Screen Time During COVID-19 with Katherine Johnson, BCBA
The sudden disruption in routine due to COVID-19 is challenging for all individuals to manage as we adjust to a new, and hopefully short-lived, normal of staying at home and ceasing most of our regular activities. For families of individuals with autism and other disabilities, the disruption can be especially challenging.
Resources Discussed:
Cosmic Kids Yoga: https://www.youtube.com/CosmicKidsYoga
Raz Kids: https://www.raz-kids.com/
Epic: https://www.getepic.com/
Prodigy: https://www.prodigygame.com/
DreamBox: https://www.dreambox.com/
Out School: https://outschool.com/
Story Time from Space: https://storytimefromspace.com/library/
Bark: https://www.bark.us/
For more helpful tips and resources, sign up for our Parent Newsletter at learnbehavioral.com/parentresources.
All Autism Talk (allautismtalk.com) is sponsored by LEARN Behavioral (learnbehavioral.com).
Tips and Resources for Families during COVID-19 with Katherine Johnson, BCBA
The sudden disruption in routine due to COVID-19 is challenging for all individuals to manage as we adjust to a new, and hopefully short-lived, normal of staying at home and ceasing most of our regular activities. For families of individuals with autism and other disabilities, the disruption can be especially challenging.
Richie has a conversation with Katherine Johnson, BCBA and founder of Advances Learning Center to share helpful tips and resources for you and family during this time.
Katherine has a Master of Arts degree in Behavior Disorders and Applied Behavior Analysis from Columbia University Teachers College and is a Board Certified Behavior Analyst (Charter Certificant). Katherine has taught in both private and public schools at pre-school and elementary levels and has provided educational consultation services to public schools and home programs. She has taught undergraduate behavior analysis courses at Northeastern University and graduate level courses at Simmons College, has provided parent training through the May Institute, and is on the Advisory Board for the undergraduate psychology program in Applied Behavior Analysis at Regis College. Katherine also currently serves as Vice President of MassCAP.
Resources Discussed:
Go Noodle: https://www.gonoodle.com/
Privilege Points: http://www.privilegepoints.com/
For more helpful tips and resources, sign up for our Parent Newsletter at LearnBehavioral.com/parentresources.
All Autism Talk (allautismtalk.com) is sponsored by LEARN Behavioral (learnbehavioral.com).