Introduction

From Chicken Soup for the Soul: Raising Kids on the Spectrum

Introduction

My first experience with autism spectrum disorder (ASD) was with a five-year-old nonverbal little girl. Her mother sat face-to-face with me and explained that all her hopes for her child were in my hands — her expectation was that I would teach this precious little girl to talk.

As a speech-language pathologist just out of school, at a time when very little about autism was known, I felt the weight of the world on my shoulders. I accepted the challenge that this mother set before me. I began to go through an all-systems check. Did the little one have enough understanding of objects, events, and relationships to communicate about them? Did her speech musculature work properly? Was she socially motivated to communicate? How did she think about the world, how much information could she process at once, and how could I find the answers to all these questions?

Slowly but surely, the strategies that I used during our intervention sessions began to show results. We started with playful routines that she enjoyed, with built-in motivating temptations for her to communicate. At first, I taught her a means to communicate nonverbally through gestures, signs, and simple pictures. All the while I provided simple speech models for her to imitate. She made tremendous gains, and yes, she did learn to talk, though not all children with ASD do.

As my relationship with this child and her family deepened, I knew that devoting my career to autism was inevitable. Fortunately for me, I came upon fantastic mentors who were international experts in autism, and I immersed myself in research and clinical work with children and adults with autism and their families.

One in eighty-eight children is diagnosed with an autism spectrum disorder (ASD). Every family that has been touched by ASD understands the challenges — and the joys — of raising a child on the autism spectrum. If you have a family member with ASD or have had an ASD diagnosis, you are not alone. There is a growing community of support for you, as is shown in the story “A Friendly Reminder” by Tina Dula, about her encounter with a generous woman at a restaurant, who happened to be another mother of a child with autism. If you have not knowingly interacted with someone with ASD, this book may compel you to reconsider encounters with strangers, or even with someone familiar, whose behavior is awkward or perhaps even off-putting.

This book’s potential for impacting the world’s understanding of, and compassion for, individuals with ASD and their family members motivated me to participate in bringing it to fruition. In my role as a clinician, researcher, and friend of many individuals with ASD and their families, I have walked alongside families experiencing the types of challenges and triumphs shared in this book. My life has been deeply enriched as a result. I love watching how children with ASD cultivate beautiful and caring hearts in their neighbors and schoolmates who learn to support them and cheer them on at special moments — moments like when they are upset because their usual spot at the lunch table isn’t available, and moments when they learn to coordinate their eyes and hands to hit a ping pong ball with a paddle. I am inspired by people with ASD and their families, who steadfastly endeavor to achieve what many people think is impossible.

As a researcher, I tackle complex questions about ASD with the aim of getting answers that will improve lives. My research has shown that the earliest signs of ASD can be subtle, appearing in the first year or two of life, a finding that opens the door to the benefits of early intervention. We have developed early intervention models (such as “Early Achievements”) and shown that very early intervention and education enables children with ASD to make big developmental strides, increasing their ability to connect with others in meaningful and rewarding ways. Another priority of my work is to translate research into effective and practical strategies that can be used by parents and teachers in the community. Some of these strategies are applicable to children with other developmental challenges or even children with typical development, helping them to achieve their greatest potential.

Through research, scientists also are learning more about the causes of ASD. Most of the improvements in healthcare, accurate diagnosis, and treatment for ASD have occurred because of the dedication of researchers and individuals with ASD and their family members. By participating in the research effort, families can help increase the pace at which researchers make life-changing discoveries for individuals with ASD. Participating in research may come in the form of answering confidential online questionnaires, donating small amounts of blood, completing tests of language or motor skills, or some other activity. Usually the time commitment for research is minimal, and you can rest assured that you have “paid it forward” to help someone else in ways you can’t even imagine. Sometimes research about ASD seems irrelevant to everyday life. Yet nothing could be farther from the truth. Much of what is learned in research about ASD leads to new discoveries that help to promote healthy development and life experiences for children and adults in general. So whether you have a family member with ASD or not, I hope that you will seek out opportunities to participate in autism research as a member of a comparison (non-ASD) group or a group with ASD.

On a more personal note, many stories in this book explain how life changes when parents learn that their child has an ASD. And the changes that result often are not understood or envied by others. Many parents of children with ASD step off the beaten path of life as they strive to understand their child’s idiosyncrasies, then create a new and uncharted world of possibilities for their dearly loved child. Things that most people take for granted, such as getting a full night’s sleep or going out for an occasional meal, become rare and cherished events for parents of children with ASD. The complexities of ASD can challenge even the most competent and caring parent, as explained by Hope Maven in her story “The Cardinal Rule” — her son wandered away in the blink of an eye, only to be found in a store parking lot. As the symptoms of ASD emerge in a child, parents have to learn how to explain their own and their child’s behaviors to others.

Stress and depression are common in parents of children with ASD, as many parents in this book openly share. Seeking support and tips from other parents of children with autism and from professionals trained to treat these problems can be a lifesaver and prevent lots of heartache. As Shari Cohen Forsythe advises in her story “The Boy Who Drew a Face,” seeking out “autism angels” for support and taking a little time for pampering can help parents find hope when the going gets tough.

If you do not have a child with ASD and are not well acquainted with this neurodevelopmental disorder, here is a brief explanation about it. Historically, ASD was a broad label for individuals diagnosed with autism, pervasive developmental disorder not otherwise specified (PDD-NOS), or Asperger syndrome. Autism and PDD-NOS differed primarily in the number of symptoms present. To be diagnosed with Asperger syndrome, an individual had to meet additional criteria: demonstrate no delay in language development and have intellectual abilities of at least average levels. With recent changes in professional diagnostic guidelines, these labels will no longer be used. Rather, the diagnosis that will be given to all who qualify will be “autism spectrum disorder.” To receive a diagnosis of ASD, an individual must show impairment in social and communication learning and behavior. Most individuals with ASD refer to themselves as “being on the spectrum.”

ASD is a medical diagnosis, but there is not yet a medical test or cure. The diagnosis is based on developmental history, current behavioral features, and responses to specialized tests of thinking and behavior. In individuals with ASD, brain development is altered. This is not because of an injury to the head or a disease or “bad parenting,” but because of genetic differences, and possible environmental exposures early in life to substances or viruses that alter brain development. Differences in brain development begin in prenatal life or shortly thereafter even though the signs of delayed or atypical development may not be noticed until the preschool years.

As you will see when you read the stories in this book, the diagnosis of ASD may be given to individuals representing a wide spectrum, or range, of characteristics. Individuals with ASD may have severe intellectual disability, or may fall within the gifted range. Some never learn to speak, while others are loquacious. Some have extreme sensitivity to sounds, sights, smells, tastes, or touch, while others have no unusual experiences of this type. The one thing that all people with ASD share is difficulty navigating interactions with others. That is, they have difficulty understanding others’ intentions, facial expressions, body language, and perspectives. In addition, they have difficulty learning social conventions, or the unwritten social rules that most people learn simply by being exposed to everyday events within their culture. For this reason, they often say or do unusual things and become the target of others’ teasing, ridicule, or bullying. Yet they often lack insight into the source of others’ rejection and are at a loss as to how to remedy the situation. Their social missteps are innocent, not calculated. They are well-intentioned and loving individuals.

One characteristic that may cause a person with ASD to stand out like a sore thumb is the presence of strong preferences and restricted interests in topics or objects that seem inconsequential to others. Sometimes their need for sameness and predictability is overwhelming, and they need special help preparing for new experiences. Without such preparation, they may become quite upset. Many parents in this book tell about the meltdowns, or tantrums, that their child with ASD had during the early years of life, and for some, these continue into adulthood. These meltdowns are not happening because a child is misbehaving or is a discipline challenge. Rather, they happen because children with ASD have tunnel vision and inflexible ways of thinking, and they have difficulty with the neurobiological regulation of their emotions. Individuals with ASD are most comfortable when they know what will happen next, so when their routines are changed, the world becomes unpredictable and scary for them. Caregivers and teachers can learn effective strategies for helping individuals with ASD learn to cope with unexpected events, and how to prepare for changes in routine.

Individuals with ASD often have better visuo-spatial than verbal reasoning abilities, and often develop a memory for information that is impressive given their other abilities. For example, a child with ASD may learn to recite the alphabet before being able to call “mommy” or “daddy” when in need. Another example involves hyperlexia, the ability to read the text in a book but not understand what is read. It is not uncommon to hear about children with ASD who teach themselves to read before they start school, but who have great difficulty getting the gist of stories when they get to school. You will see many other examples of special skills and insights that some individuals with ASD demonstrate as you read this book.

My hope is that this book provides you a deeper understanding of ASD while it dispels some myths. I hope that the stories give people on the spectrum an increased sense of value and of belonging. If you are a family member, may you find comfort in knowing that you are not alone in the unique blessings and experiences that result from adjusting your life to the parameters of ASD. If you are not directly affected by ASD, I hope that you have the opportunity to extend your hand to someone who is. And for all of us, I hope that the stories in Chicken Soup for the Soul: Raising Kids on the Spectrum lead us to help more and judge less, and to have a greater measure of patience next time we encounter someone who challenges our expectations. May this collection of stories inspire all of us to look upon others in a new light, appreciating that a soul is more than what meets the eye. After reading this book, perhaps we will be more inclined to align ourselves, rather than distance ourselves, from those whom we do not readily understand. Doing so might just be the “chicken soup for the soul” that sparks a new sense of confidence, hope, or courage for someone to keep trying against big odds.

~Rebecca Landa, PhD
Director of Kennedy Krieger Institute’s Center for Autism

For more information and resources about ASD,
visit www.autism.kennedykrieger.org.

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