What Is Autism Spectrum Disorder?

As a pediatrician whose son has autism spectrum disorder (ASD), I know all too well about the difficult emotions that often surround a diagnosis of ASD. My son was diagnosed as having ASD in 2004 at the age of 24 months. Before the diagnosis, we were concerned about his development, beginning in infancy. At times he seemed uncomfortable with symptoms of acid reflux, and at other times he was extremely quiet and hard to engage. While he has always made forward progress, he reached his developmental milestones later than other children. For example, as a young toddler, he had difficulty using gestures, such as pointing, to tell us what he wanted, and he didn't begin to talk until he was 24 months old.

While getting the diagnosis was painful, it ultimately helped me better understand him. It also began the process of knowing how to help him reach his potential.

Although his mother and I are pediatricians, it was difficult to adjust our expectations, just like any parents. At first, I thought about the things I did with my father that my son and I might not be able to do, such as playing sports. I later realized that although some things are challenging for him, there are many things we do together that bring us both much joy. I have learned during this journey that parenting a child on the autism spectrum is not "better" or "worse" than parenting any other child. It is simply different. My son has helped me appreciate and enjoy those differences.

We have always focused on what our son can do and not on what he can't. Along the way, we have tried to obtain the best therapies possible that allow him to reach even higher. As scientists, we had known that the best evidence-based therapy available for children with ASD is behavioral therapy, so we began his behavioral therapy program while he was very young. In addition to trying intensive behavioral therapy, we were open to trying complementary and alternative therapies as long as they were safe. After doing some research, we tried a few different nutritional supplements and the glutenfree/casein-free diet, understanding that there was limited evidence that these treatments would help reduce the symptoms of autism. After some time, we concluded that his progress with behavioral therapy was no better with these interventions than without them, so we discontinued them. We have continued to support him with ongoing behavioral therapy and have been delighted with his progress.

Now our son is an active participant in his community. With the support of family, friends, educators, therapists, and doctors, he enjoys many of the same activities as his peers: swimming, basketball, bowling, summer camp, reading, and discovering. All who take the time to get to know him are drawn in by his gentle demeanor, curious nature, and wonderful sense of humor.

— Paul Carbone, MD, FAAP

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Ellen had always taken pride in her son's intelligence, his expansive vocabulary, and his knowledge of dinosaurs. But at the age of 11, Brian was struggling socially. Classmates found his all-consuming obsession with dinosaurs annoying, and Brian grew impatient with them if they didn't know as much as he did about the prehistoric creatures. He had trouble understanding sarcasm from his peers. He couldn't tell when they were being mean but got overly sensitive when they weren't. He sometimes made rude, sarcastic comments during class while the teacher was talking.

Brian also behaved in unusual ways. He was always touching people when he was stuck waiting in lines, falling down at unexpected times, and making loud, inappropriate comments about people within earshot. What concerned Ellen the most was that Brian never seemed to look her in the eye while she was talking to him.

Over time, Ellen grew suspicious that something else was going on with her son, especially when she went back to college to get a degree in psychology and started doing more reading. Though he had already been diagnosed as having attention-deficit/hyperactivity disorder at age 7, she began to wonder if he also had ASD, a diagnosis that a teacher had once suggested but that Ellen had always dismissed. "He didn't fit the profile of what I thought was autism," she says. "I always thought children with autism were unattached, unresponsive, and in their own world."

Ellen had Brian evaluated by a psychologist. A screening test suggested that he had ASD. The more she learned about ASD, the more Ellen was convinced that Brian had it. Ellen considered whether to pursue a formal ASD diagnosis. On the one hand, she knew that with a diagnosis, Brian would be eligible for more therapy services. On the other hand, she was concerned the label would create stigma for her son. "And I'm afraid some people will look at me and think I'm a bad parent," she says.

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Chances are, you're familiar with some of the concerns that Ellen is facing or the difficult emotions that Dr Carbone has experienced while adjusting to his son's diagnosis. Like Ellen, you may be wondering whether you should have your child evaluated or what a diagnosis will mean for your child's life. Like Dr Carbone, you may be looking for information about where to find help for your child's social and communication challenges. Or maybe you suspect your child has ASD but haven't addressed your concern with your pediatrician yet.

We hope that reading this book will help provide you with the information you are seeking to make the best decisions for your child. In this book, you will learn how ASD is defined and diagnosed and the types of behavioral and developmental therapies available for treating it. You will learn when medications may be required and whether complementary and integrative medicine may be helpful. We also help you create a treatment team that includes your pediatrician, and we provide information to help you care for your child and get a handle on the types of services and assistance available to him. In addition, we help you understand the effect of ASD on you and the rest of your family. Stories from other parents help...