Pediatricians bring hope and help to our patients.
We have the expertise gained through education
and training to lend help to those in need. We
provide assistance and information, formulate
plans and support parents and children to give
them hope. For children with Autism Spectrum
Disorders (ASD) and their families, however,
help and hope are not always easy to find.
Although I considered myself a well-trained and experienced pediatrician, when I encountered my first child with an autism diagnosis twenty years ago, I had little knowledge of it. When I first met Ryan and his family, whom you will meet through these pages, autism was about to emerge in epidemic proportions far exceeding professional understanding and services. Those services that were available tended to be education based but not medically based. Most doctors, including myself, were woefully underprepared to help these families. However, the networks I had built over the years afforded me access to a wide range of contacts. Casting a wide net across the country, I eventually obtained information to help support not only Ryan but also, ultimately, many children with ASD. My search led to Drs. Stanley I. Greenspan and Serena Wieder, who proved to be superb mentors. They introduced me to the DIR model, a unique developmental approach to assessing and interacting with children, especially those who have delays. As I observed this treatment approach for the first time in my journey, I saw children with autism who were joyful, relating and communicating with their families—each in their own ways. This inspired me to adopt this model into my existing medical practice.
By 1998, it seemed that the number of children diagnosed with ASD was increasing daily. This convinced me to devote my practice solely to this group of children. At that time, my pediatric colleagues questioned whether there would be enough work in this field to sustain a viable practice. Within months my new practice “wait list” had grown shockingly to over one thousand children and families in need!
In Autism Solutions, I share my medical and developmental evaluation and treatment paradigm. As I saw more and more children with autism, medical patterns became evident. These children had numerous symptoms, in addition to their significant developmental delays. It was not unusual to find a child with a history of chronic diarrhea or constipation, allergies, potential seizures, severe sleep problems and recurrent infections. Behavior symptoms such as tics, aggression, hyperactivity and impulsivity, as well as debilitating anxiety, were common. Most of these concerns were not addressed by the prevailing explanations for ASD, were largely unrecognized and were poorly treated. Somehow the diagnosis of autism had clouded the fact that these were children who could experience the same childhood illnesses as any other child. It was also possible that certain chronic symptoms might even be related to their autism. In my entire career I had never met a more medically underserved group of children. This was unacceptable to me.
It was time to look at these children through a new lens. Yes, they might have developmental delays but they also showed intelligence (some superior) and untapped capabilities. Often their medical issues derailed their progress. By looking at each child individually, each with his own strengths and challenges, a unique profile could be developed. From this profile, a targeted treatment plan emerged that was tailored to his needs. Working together with families to discover ways they could relate and communicate with their children gave them renewed energy and hope. With increased hope came increased expectations for each child. Treating a child’s medical problems allowed him to feel better. When he felt better, he was more available to interact, develop relationships, get the most from his therapies and, eventually, make great developmental gains. When addressing all of a child’s challenges appropriately, I witnessed changes that were unheard of at that time. Once the parents understood how their child interpreted the world, the door was opened to deepening their relationship. To see the happiness they had when their child related and communicated was extremely moving to me. I was convinced then—and more so today—that this powerful approach can significantly impact children’s lives.
Research over the past decade continues to confirm the presence of medical issues in children with ASD. Yet in the early 1990s, very little research had been funded in the field of autism. At that time, I was fortunate to meet Jon Shestack and Portia Iverson, parents searching for answers for their son Dov, who had been diagnosed with ASD. They invited me to join the initial group of five, who met around their kitchen table, thinking about ways to stimulate research into the cause of and treatments for ASD. From these meetings (and due in large part to the courage and persistence of Jon and Portia), Cure Autism Now (CAN) was born—now called Autism Speaks. I was fortunate as a CAN board member to be able to immerse myself in the science, meeting many dedicated researchers trying to discover answers to the mysteries of ASD. Also about that time, I joined the founding board of the Interdisciplinary Council on Developmental and Learning Disorders (ICDL), an organization dedicated to educating professionals who work with children with ASD in relationship based approaches. Through the ICDL November Research Conference and the Summer Institute, I have met and learned from hundreds of devoted professionals. Being privy to the newest in research and learning how to better support these children gave me a unique opportunity to provide the most up-to-date help to the children and their families in my practice.
Doctors learn the art of medicine from their patients, and mine have taught me volumes. I have been so privileged to be a participant in the journey of children with ASD and their families—in some cases for nearly twenty years. Each and every child has taught me over and over again to look beyond their behaviors to their uniqueness. In these pages you will meet many of these children. By addressing their abilities and adjusting their treatment plan to fit their needs over time, I have watched them make astounding progress. I have seen them grow to become related, creative, interesting, empathetic young adults, each blazing his own unique trail—often one never imagined for individuals with ASD. I expect this for your child, too.
Autism Solutions includes information covering both the developmental and medical concerns that parents, families and friends so often seek. ■ Part I introduces autism and its potential causes. ■ Part II reviews the nature of our sensory-motor systems and how an infant’s development unfolds, as well as the unique developmental model that allows you to better understand your child’s strengths and challenges. ■ Part III presents my approach to the evaluation and development of treatment plans. I hope you will feel as if you are sitting in the office with me as we explore all the potential concerns for your child and help you formulate the necessary elements for his treatment plan, tailored to his needs and the needs of your family. ■ Part IV reviews communication issues—both learning how to interpret your child’s behavior as a means to letting you know what he is thinking and feeling, as well as ways to support the most challenged children who have severe motor-planning delays. ■ Part V addresses the medical issues that may affect your child. I have tried to demystify “doctorspeak” so that you will be armed with useful information to help you get appropriate medical care for your child. In addition, you should be able to ask your doctor the questions most important to solving issues as they come up. ■ Part VI puts all of this into the big picture of why you are working to get your child all the support he needs—so he will be prepared to live a happy and meaningful life.
Most of the concepts are illustrated by stories of children I’ve seen in my practice. In general, names have been changed to protect their privacy. In most cases, unless a girl is featured in a story, you will notice I have used “he” in describing a child with ASD. This has been done for consistency and simplicity. As you seek solutions for your child with autism, you should always be in the driver’s seat—no one knows your child better than you; no one cares for your child more than you; no one can advocate better for your child than you. This book will give you information that empowers you to remain central to the process. Your journey may be an extended one, with peaks and valleys, but it is one worth taking. May Autism Solutions bring you help and hope as you continue your journey and find the path with the best outcome for your child.