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A Practical Guide to Autism E-Book

Fred R. Volkmar

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Herausgeber: John Wiley & Sons
Kategorie: Geisteswissenschaft
Sprache: Englisch

Beschreibung

Autism is in the public spotlight now more than ever as new research and information appears almost daily. Although in many ways this is a positive development it also presents challenges to families and practitioners who want to keep up with the latest developments and are left to sift through new information by themselves to see what is credible and relevant for them.Each of us needs a personal research assistant who can determine which information we need to pay attention to and let us know how it might affect our daily work and the children we are living with or serve. Since we each don't have our own research assistants on staff, I am delighted to recommend this wonderful book by Fred Volkmar and Lisa Wiesner. Both of these talented professional leaders have combined their scientific skills and understanding of the field with great practical experience and ideas about how research can be translated into clinical practice. The result is a book that provides the best and most comprehensive information about recent scientific developments and a splendid practical guide for how they are being implemented and what we are learning in the process. The issues are presented in all of their complexity but translated into language that is clear, direct, and easy to follow. The format also lends itself to understanding the complex issues and their implications through excellent charts, question and answer sections, and chapters that vary from describing diagnostic issues to stating very specifically how to expand and evaluate the services one is receiving. The comprehensive references and lists of additional resources also add greatly to the overall package. As a professional dedicated to understanding scientific advances and helping families and teachers to utilize them most effectively, I am very pleased to have an ally like this book available. I am very grateful to the authors for providing a very credible, practical, and relevant addition to our field to help the many advocates and family practitioners to better understand the exciting new developments and how they can be implemented in our day to day work. Those taking the time to read through this superb volume will find it time well spent that pays back dividends in many different ways. --FOREWORD by Gary B. Mesibov, Ph.D., Professor and Director of TEACCH, Treatment and Education of Autistic and Related Communication Handicapped Children University of North Carolina at Chapel Hill

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Leseprobe

Cover

Title

Dedication

Foreword

Preface

CHAPTER 1: What Is Autism?

AUTISM

ASPERGER’S DISORDER

CHILDHOOD DISINTEGRATIVE DISORDER

RETT’S DISORDER

PERVASIVE DEVELOPMENTAL DISORDER NOT OTHERWISE SPECIFIED

HOW COMMON ARE AUTISM AND RELATED CONDITIONS?

SUMMARY

CHAPTER 2: What Causes Autism?

GENETIC CAUSES OF AUTISM

SEIZURE DISORDERS AND ELECTROENCEPHALOGRAPHIC ABNORMALITIES

List of Tables

CHAPTER 1: What Is Autism?

TABLE 1.1 DIFFERENTIAL DIAGNOSTIC FEATURES OF AUTISM AND NONAUTISTIC PERVASIVE DEVELOPMENTAL DISORDERS

CHAPTER 3: Getting a Diagnosis

TABLE 3.1 WARNING SIGNS OF AUTISM IN THE FIRST AND SECOND YEARS OF LIFE

TABLE 3.2 FREQUENTLY USED SCREENING INSTRUMENTS FOR AUTISM

TABLE 3.3 SELECTED TESTS OF INTELLIGENCE/DEVELOPMENT

TABLE 3.4 COMMONLY USED TESTS OF SPEECH–LANGUAGE–COMMUNICATION

TABLE 3.5 DIAGNOSTIC TESTS/INSTRUMENTS FOR AUTISM

TABLE 3.6 DIAGNOSTIC TESTS/INSTRUMENTS FOR ASPERGER’S

TABLE 3.7 MOTOR AND SENSORY MOTOR TESTS

CHAPTER 5: An Overview of Educational Programs

TABLE 5.1 FEATURES OF COMPREHENSIVE PROGRAMS

TABLE 5.2 INTERACTION OF INSTRUCTIONAL STRATEGIES AND CURRICULUM AREAS

CHAPTER 6: Educational Interventions

TABLE 6.1 SOURCES OF INFORMATION AND CURRICULA FOR STUDENTS WITH AUTISM

TABLE 6.2 USES OF PIVOTAL RESPONSE TRAINING

TABLE 6.3 CHALLENGES FOR ENHANCING SOCIAL COMMUNICATION ABILITIES AT VARIOUS DEVELOPMENTAL LEVELS

TABLE 6.4 EXAMPLES OF MILIEU TEACHING METHODS

TABLE 6.5 AUGMENTATIVE ALTERNATIVE COMMUNICATION STRATEGIES: AN OVERVIEW

CHAPTER 7: Working With Young Children

TABLE 7.1 SYMPTOMS OF AUTISM IN THE FIRST YEAR OF LIFE

TABLE 7.2 SYMPTOMS OF AUTISM: AGES 1 TO 3 YEARS

CHAPTER 9: Adolescence, Adulthood, and the Future

TABLE 9.1 STAGES OF PUBERTY (TANNER)

CHAPTER 12: Dealing With Seizures

TABLE 12.1 COMMON TYPES OF SEIZURES

CHAPTER 13: Dealing With Regression

TABLE 13.1 REGRESSION IN AUTISM SPECTRUM DISORDER–SUBTYPES

TABLE 13.2 MEDICAL CONDITIONS CAUSING DETERIORATION

TABLE 13.3 CLINICAL FEATURES OF CHILDHOOD DISINTEGRATIVE DISORDER

TABLE 13.4 STAGES OF RETT’S DISORDER

CHAPTER 15: Considering Medications for Behavior Problems

TABLE 15.1 SELECTED SECOND-GENERATION (ATYPICAL ANTIPSYCHOTICS)

TABLE 15.2 SELECTED FIRST-GENERATION ANTIPSYCHOTIC MEDICATIONS

TABLE 15.3 SELECTED MEDICATIONS FOR TREATMENT OF ADHD

TABLE 15.4 SELECTED ANTIDEPRESSANTS AND SEROTONIN REUPTAKE INHIBITOR MEDICATIONS

TABLE 15.5 SELECTED MOOD STABILIZERS

TABLE 15.6 SELECTED ANTIANXIETY MEDICATIONS

CHAPTER 18: Considering Complementary and Alternative Treatments

TABLE 18.1 THE SCIENTIFIC METHOD

TABLE 18.2 COMPLEMENTARY AND ALTERNATIVE DIETARY/NUTRITIONAL TREATMENTS IN AUTISM-AN OVERVIEW

Guide

Cover

Table of Contents

Begin Reading

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A Practical Guide to Autism

What Every Parent, Family Member, and Teacher Needs to Know

Fred R. Volkmar

Lisa A. Wiesner

Published simultaneously in Canada.

No part of this publication may be reproduced, stored in a retrieval system, or transmitted in any form or by any means, electronic, mechanical, photocopying, recording, scanning, or otherwise, except as permitted under Section 107 or 108 of the 1976 United States Copyright Act, without either the prior written permission of the Publisher, or authorization through payment of the appropriate per-copy fee to the Copyright Clearance Center, Inc., 222 Rosewood Drive, Danvers, MA 01923, (978) 750-8400, fax (978) 646-8600, or on the web at www.copyright.com. Requests to the Publisher for permission should be addressed to the Permissions Department, John Wiley & Sons, Inc., 111 River Street, Hoboken, NJ 07030, (201) 748-6011, fax (201) 748-6008.

Limit of Liability/Disclaimer of Warranty: While the publisher and author have used their best efforts in preparing this book, they make no representations or warranties with respect to the accuracy or completeness of the contents of this book and specifically disclaim any implied warranties of merchantability or fitness for a particular purpose. No warranty may be created or extended by sales representatives or written sales materials. The advice and strategies contained herein may not be suitable for your situation. You should consult with a professional where appropriate. Neither the publisher nor author shall be liable for any loss of profit or any other commercial damages, including but not limited to special, incidental, consequential, or other damages.

This publication is designed to provide accurate and authoritative information in regard to the subject matter covered. It is sold with the understanding that the publisher is not engaged in rendering professional services. If legal, accounting, medical, psychological or any other expert assistance is required, the services of a competent professional person should be sought.

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Library of Congress Cataloging-in-Publication Data

Volkmar, Fred R.A practical guide to autism : what every parent, family member, and teacher needs to know / By Fred R. Volkmar, Lisa A. Wiesner. p. cm. Includes bibliographical references and index. ISBN 978-0-470-39473-1 (pbk.) 1. Autism. I. Wiesner, Lisa A. II. Title. RC553.A88V65 2009616.85’ 88200835—dc222009021153

To Lucy and Emily,who have taught us about being parents and to the many children and their parents who have taught us about being doctors

Foreword

Since we each don’t have our own research assistants on staff, I am delighted to recommend this wonderful book by Fred Volkmar and Lisa Wiesner. Both of these talented professional leaders have combined their scientific skills and understanding of the field with great practical experience and ideas about how research can be translated into clinical practice. The result is a book that provides the best and most comprehensive information about recent scientific developments and a splendid practical guide for how they are being implemented and what we are learning in the process. The issues are presented in all of their complexity but translated into language that is clear, direct, and easy to follow. The format also lends itself to understanding the complex issues and their implications through excellent charts, question and answer sections, and chapters that vary from describing diagnostic issues to stating very specifically how to expand and evaluate the services one is receiving. The comprehensive references and lists of additional resources also add greatly to the overall package.

As a professional dedicated to understanding scientific advances and helping families and teachers to utilize them most effectively, I am very pleased to have an ally like this book available. I am very grateful to the authors for providing a very credible, practical, and relevant addition to our field to help the many advocates and family practitioners to better understand the exciting new developments and how they can be implemented in our day to day work. Those taking the time to read through this superb volume will find it time well spent that pays back dividends in many different ways.

Gary B. Mesibov, Ph.D.Professor and Director of TEACCHTreatment and Education of Autistic and Related CommunicationHandicapped ChildrenUniversity of North Carolina at Chapel Hill

Preface

We have written this book to provide parents and teachers with information that we hope will help them get the best possible care for their child or the children under their care. The two of us approach this from slightly different perspectives. One of us, Fred Volkmar, is a child psychiatrist whose main area of clinical work and research is in autism. The other, Lisa Wiesner, is a pediatrician who has seen children with autism and other disabilities in her pediatric practice. In addition to bringing our professional perspectives to the book, the two of us are married and parents of two children. We hope that this book will provide parents and teachers of individuals with autism and related disorders some practical and useful information.

Our aim is to provide an understandable guide to what we feel are the most important things for parents and teachers to know. We try, as much as possible, to refer readers to relevant materials—both books, chapters, and research papers. We have tried, as much as we can, to stick with resources that are readily available and written in ways that parents as well as professionals can understand. It is, in some ways, gratifying to be able to say that we are by no means exhaustive in this regard. There are many excellent resources not included here, although we’ve tried to give a reasonable sample of the best things available.

We have tried to think very broadly about the kinds of information that parents and teachers need to know. Accordingly, we have chapters focused on a wide range of topics. Given our interest in the medical as well as behavioral and educational aspects of autism, we’ve included chapters on medical issues, safety, and medications, as well as what would be the more usual chapters in a book of this kind.

We are very much aware that, for parents, the rewards of raising a child with an autism spectrum disorder are just as great as for any other parents. However, the challenges can be more daunting because parents have to take the child’s difficulties into account in almost all decisions made about his or her education and health care. This book reviews basic information about autism and related conditions and how these disorders are diagnosed and treated. Keep in mind that in this book we are trying to provide important general information that will help parents and teachers provide good care. This book can’t (and won’t) Substitute for having a good working relationship with the various professionals who can advise you about what is best for your child in particular. The information provided in this book should supplement but does not replace the need for the child and family to have an ongoing relationship with educators, health and mental health care providers, and legal professionals who know the child and specifics of the situation very well. Laws, for example, can vary significantly from state to state, and this knowledge may be important as parents and others think about long-term planning. Similarly, keep in mind that while we’ve made every effort to be accurate and up to date, knowledge changes over time, and with the increasing amount of research on autism, the pace of change has quickened considerably.

Over the past decade there have been important advances in understanding the syndrome and in treating its symptoms. We know now that we can recognize and reduce the negative effects of these conditions on the child’s development and behavior. In considering any intervention, it is always important to weigh the risk against the possible benefit of the intervention. As the saying goes, “The perfect is sometimes the enemy of the good.” That is, sometimes it is better not to strive for perfection but for reasonable care and quality of life. As discussed in this book, many new treatments for autism also periodically become available. Sometimes these are well evaluated scientifically. Unfortunately, much of the time they are not. In a later chapter in this book, we will review some of these treatments and discuss how parents and teachers can make informed decisions about using them.

In each chapter we include questions from parents and our answers. We hope that these are a helpful way for you to learn from the experience of others. Throughout the book, we also include some tables and boxed material with additional information. The final sections of the book include a glossary as well as a list of additional resources. A reading list is included at the end of every chapter. Again, remember that in reading this or any book, it is important to interpret the information with the specific child in mind. In this effort, various professionals can be important allies.

We are grateful to a number of our colleagues who have reviewed parts of this book in our efforts to make it helpful to parents. We have profited from their wisdom and comments. They include, in alphabetical order: Karyn Bailey, Leah Booth, Rebecca Carman, Kasia Chawarska, Mark Durand, Tina Goldsmith, Debbie Hilibrand, Ami Klin, Kathy Koenig, Andrés Martin, Prisca Marvin, Nancy Moss, Rhea Paul, Michael Powers, Brian Reichow, Terrell Reichow, Penn Rhodeen, Celine Saulnier, Larry Scahill, Alison Singer, Tristam Smith, Kathy Tsatsanis, and Sally Zanger. We also thank our various colleagues who kindly allowed us to reprint, sometimes with modifications, materials from other sources, particularly the Handbook of Autism. Gary Mesibov merits special thanks for his willingness to contribute a foreword. 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 parent friendly as possible. We also thank a dedicated staff of professionals who helped us assemble the final copy—Lori Klein and Rosemary Serra, and, in particular, Emily Deegan, who went above and beyond the call of duty in coping with the many demands of producing this book. Finally, we thank our children, who have taught us much about child development, and, of course, our patients and their families, who have taught us much about autism.

Fred Volkmar, MDLisa Wiesner, MD

CHAPTER 1What Is Autism?

This chapter gives some background on autism and related autism spectrum disorders (ASDs). The recognition of autism as a disorder is a relatively recent one, first described in 1943 but not “officially” used as a diagnosis until 1980. Other conditions such as Asperger’s disorder were “officially” recognized even more recently. In this chapter we discuss these disorders and how our understanding of them has changed over the years. This is important for several reasons. One is that you may hear many different terms used to describe a child’s difficulties. Second, because knowledge has changed over the years, there are some misconceptions about autism that you may encounter (particularly among people who haven’t kept up with the field!). Finally, if you are looking at this book, you are probably wondering if a child you know has autism. We think it would be helpful for you to know something about autism!

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