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Library of Congress Cataloging-in-Publication Data:
Names: Volkmar, Fred R., author. | Wiesner, Lisa A., author.
Title: Essential clinical guide to understanding and treating autism / by Fred R. Volkmar, Lisa A. Wiesner.
Description: First edition. | Hoboken, New Jersey : Wiley, [2018] | Includes bibliographical references and index. |
Identifiers: LCCN 2017015023 (print) | LCCN 2017015963 (ebook) | ISBN 9781119427049 (pdf ) | ISBN 9781119427124 (epub) | ISBN 9781118586624 (pbk.)
Subjects: | MESH: Autistic Disorder—therapy | Autistic Disorder—psychology | Autism Spectrum Disorder—therapy | Autism Spectrum Disorder—psychology | Infant | Child | Adolescent | Adult
Classification: LCC RC553.A88 (ebook) | LCC RC553.A88 (print) | NLM WS 350.8.P4 | DDC 616.85/882—dc23
LC record available at https://lccn.loc.gov/2017015023
Cover image: © Ilya Terentyev/iStockphoto; © OkinawaPottery/Getty Images
Cover design: Wiley
First Edition
The last several years have seen major changes in the health care delivery system. Increasingly, primary care providers are being asked to assume a greater role in the management of medical care for individuals with developmental and behavioral problems. These responsibilities can range from early screening and case management to the care of adults with continuing difficulties. To further complicate things, the system for mental health coverage varies quite widely (and wildly) with many specialist providers taking no insurance. Somewhat paradoxically, at least in the United States (and to some extent in other countries), there is a three‐tiered approach with basic care covered under insurance programs such as Medicaid for individuals who quality for it, privately reimbursed coverage for those who can afford it (often, but not always, the highest level of service), and, for much of the middle class, insurance coverage that is remarkably spotty—with some providers who often are under tremendous pressure and scrutiny. Yet another set of issues arises for individuals who receive services from various providers and agencies, for example, child psychiatrists, social workers, educators, psychologists, speech pathologists, behavior specialists, and so on. The primary care provider has an increasingly important role in care coordination and provision of a “medical home” (Hyman & Johnson, 2012; Knapp et al., 2013). This book is written to address the needs of primary care providers for what we hope is an accessible and straightforward guide to medical care for individuals with autism, Asperger's, and the broader autism spectrum group of conditions.
We are, respectively, an academic child psychiatrist (clinician researcher) and a pediatric primary care provider. We hope that our different backgrounds have helped us focus on what is most important for primary care providers to know about autism and related conditions. We have tried to be concise but reasonably comprehensive. You will see that chapters have references and often lists of additional reading resources. One of the challenges in doing a book of this kind is the tremendous growth in the scientific and lay literature on the topic. There are now nearly 30,000 scientific papers on the topic, not to mention the many books and chapters; a quick Google search will yield an initial set of over 25,000 hits. Accordingly, we have tried to identify the most relevant and accessible resources for those who desire additional information or to read primary sources.
There are many excellent resources not included here, although we've tried to give a reasonable sample of the best ones available. We have tried to combine a life‐span approach with a focus, in some chapters, on specific age groups. As we note somewhat sadly, the literature is most limited when it comes to adults with autism spectrum disorder (ASD) (a growing and important population and a population not always well served by the health care system). You will see that we also have included a chapter on alternative treatments—obviously here we're not recommending treatments but are giving primary care providers relevant information. In our experience a majority of parents of children with autism will engage in at least one such treatment, and it is important that they be able to have a discussion with their child's primary care providers about these treatments. We also include a chapter on behavior management issues as well as another on medications—we emphasize that primary care physicians (PCPs) who are less familiar with these medications should use local resources and consultations and always be aware that research is ongoing and there may be changes in indications, doses, and so forth.
Increasingly with earlier diagnosis and intervention more children with autism and related conditions are becoming self‐sufficient adults—often with some continued vulnerability—but they are able to live independently and have productive and fulfilling lives. For others, unfortunately, longer‐term involvement of parents and family is needed, and these individuals also need PCPs who are knowledgeable about autism.
As you will see from this book many professionals are involved throughout the individual's life. PCPs have an important role in helping these specialists talk with each other, the individual, and his or her family. As one of our teacher's often said, “if you meet one person with autism you've met one person with autism.” As you work more with this group of patients you'll likely agree with this point of view.
We are grateful to a number of our colleagues who have reviewed parts of this book in our efforts to make it helpful to primary care providers who deal with individuals with autism and their families. We have profited from their wisdom and comments. They include Karen Bailey, MSW; Leah Booth, CC‐SPL; Kasia Chawarska, PhD; Michelle Goyette‐Ewing, PhD; Roger Jou, MD, PhD; Kathy Koening, MSN, APRN; James McPartland, PhD; and Nancy Moss, PhD. We also particularly thank Ellen Keene, JD, for her extremely helpful review of the chapter on legal issues. We also are grateful to our editor, Patricia Rossi, and the staff at Wiley for their unflagging support and help in making this book as readable as possible. We also thank Lori Klein and Evelyn Pomichetr for their secretarial assistance and Logan Hart for helping us identify resources. Finally, we thank our own children, who have taught us much about child development, and, of course, our patients and their families, who have taught us much about autism.