April is Autism Awareness Month. According to the Centers for Disease Control and Prevention (CDC), autism has ballooned from 1 in 150 births in 2000 to 1 in 54 in 2020. While there is a lot of debate to what is causing such a dramatic increase, there is no question the impact autism is having on our families, schools and community. Joel Desotelle, a licensed pediatric occupational therapist and program director of Keystone Pediatric Developmental Center in Chambersburg, sheds light on the often-misunderstood subject of autism in today’s article.
Despite its growing prevalence, autism is a complicated disorder to understand. Our brain has about 100 billion neurons, each with approximately 1,000 connections for a total of 100 trillion connections. Through our senses (sight, smell, taste, touch, hearing, etc.), our brain is responsible for managing all the information coming in from our body and environment around us so that we can learn, adapt and ultimately survive. All this “sensory” information must be registered, organized, redirected to the right part of the brain, interpreted and filtered so that we are able to respond to what is important and ignore less relevant information. In today’s world of mobile phones, online entertainment, the internet, email, television, social media, radio, books, video games, etc., the average person “uploads” approximately 34 gigabytes of information every day! And if you agree that most of us live in a state of constant sensory overload by this media blitz, imagine the same world if your brain was not able to process that information very well.
Autism is a developmental disorder that affects communication and behavior. While there are common symptoms in individuals with autism, the core problem is a brain that does not process sensory information very well. Because the brain is so complex, there is a lot of variability in the severity, range of problems and how each individual tries to cope. Imagine sitting in a meeting or classroom in another country that does not speak your language or trying to concentrate in a room that is filled with distractions you just cannot tune out. Many of these individuals cannot process the normal rate of speech or organize all of that information from the environment. This can make learning and understanding new situations, activities or information extremely difficult and is a contributing factor to why individuals living with autism have language delays, are less social, do not adapt well and rely on others to compensate.
Normal development in children occurs with a combination of love, opportunity and an innate desire to grow. Curiosity, boredom, motivation and our sense of self-worth fuels this process. Because individuals with autism struggle to process sensory information, they do not adapt well. New experiences, challenges and change in their routine makes them feel anxious and they try to adapt by keeping things the same (repetitive) to avoid overwhelming their brain’s ability to process information. These individuals often avoid, or are slow to accept, new experiences and tend overreact to common situations. The world is a stressful place without autism, and so it becomes clear why many of these individuals can really struggle, especially when that same world really does not understand how hard it can be for them to cope.
Living With Autism
So how does one cope and survive when the world is moving too fast? While each individual is different, relying on others to fill the gaps is a common compensatory strategy. During the early years of development, a child is dependent on his parent(s) to meet his needs. As children develop skills, they start to mature and begin to assume more responsibility as they move toward becoming an independent adult. At each milestone, the individual is eager to achieve the next one. A child living with autism is slowed by his tendency to rely on others while limiting and often avoiding experiences that help him to learn and grow. Because of communication delays, these individuals struggle to express oneself or adapt to challenges. They use the few skills they have to try and manage, most often this comes in the form of extreme behaviors such as tantrums, aggression, self-harm, emotional outbursts, etc. These tools are used to not only minimize anxiety but also to protect a brain that is easily overwhelmed. Without the right kind of help and understanding, progress can be very slow.
With the prevalence of autism on the rise, it is likely that someone in your family lives with autism or you have seen or know someone with autism. It is a very difficult disorder to understand and families, healthcare providers, teachers and caregivers struggle to help these special individuals cope with everyday experiences. As a result, these individuals and their families struggle daily and often live with isolation in order to avoid difficult moments in the community, such as when their child melts down in the grocery store because they ran out of the only brand of macaroni and cheese he will eat. Like all of us, these individuals have their quirks, flaws and certainly their special gifts. Understanding autism is not easy and certainly requires a lot of love, patience, and extra time (as most kids do). But in 26 years as an occupational therapist serving hundreds of individuals, and the past eight years as a stepfather to my amazing stepson with autism, these great kids have taught me far more than I could ever repay, and they certainly deserve our understanding, love and support as we celebrate each and every one of them.
This article contains general information only and should not be used as a substitute for professional diagnosis, treatment or care by a qualified health care provider.