li.rpert Guidance From the American Academy of Pediatrics UTISM SPECTRU M DISORDERS What Every Parent Needs to Know EtJIIORS ALAN I. R osENBLATT, MD, FAAP PA UL s. CARBONE, MD, FAAP WITH WINNIE Yu American Academy of Pediatrics DEDI CATED TO THE J-I EALTH OF ALL C HI LDREN" e Also Available From the American Academy of Pediatrics Common Conditions Guide to Toilet Training* ADHD: What Every Parent Needs to Know Heading Home With Your Newborn: From Allergies and Asthma: What Every Parent Birth to Reality Needs to Know Mommy Calls: Dr. Tanya Answers Parents’ Top My Child Is Sick! Expert Advice for Managing 101 Questions About Babies and Toddlers Common Illnesses and Injuries New Mother’s Guide to Breastfeeding* Waking Up Dry: A Guide to Help Children Newborn Intensive Care: What Every Parent Overcome Bedwetting Needs to Know Raising Twins: From Pregnancy to Preschool Developmental, Behavioral, and Your Baby’s First Year* Psychosocial Information CyberSafe: Protecting and Empowering Kids Nutrition and Fitness in the Digital World of Texting, Gaming, and Food Fights: Winning the Nutritional Social Media Challenges of Parenthood Armed With Insight, Mental Health, Naturally: The Family Guide to Humor, and a Bottle of Ketchup Holistic Care for a Healthy Mind and Body A Parent’s Guide to Childhood Obesity: The Wonder Years: Helping Your Baby and A Road Map to Health Young Child Successfully Negotiate the Major Nutrition: What Every Parent Needs to Know Developmental Milestones Sports Success Rx! Your Child’s Prescription for the Best Experience Immunization Information Immunizations & Infectious Diseases: School-aged Children and Adolescents An Informed Parent’s Guide Building Resilience in Children and Teens: Giving Kids Roots and Wings Newborns, Infants, and Toddlers Caring for Your School-Age Child: Ages 5 Baby & Child Health: The Essential Guide to 12 From Birth to 11 Years Caring for Your Teenager Caring for Your Baby and Young Child: Birth to Age 5* Less Stress, More Success: A New Approach to Guiding Your Teen Through College Dad to Dad: Parenting Like a Pro Admissions and Beyond For more information, please visit the official AAP Web site for parents, www.HealthyChildren.org/bookstore. *This book is also available in Spanish. AUTISM SPECTRUM D ISORDERS What Every Parent Needs to Know E DITORS A LAN I . R OSENBLATT, M D, FA A P PAUL S . C ARBONE , M D, FA A P WITH W INNIE Y U American Academy of Pediatrics Department of Marketing and Publications Staff Director, Department of Marketing and Publications Editorial Specialist Maureen DeRosa, MPA Jason Crase Director, Division of Product Development Print Production Specialist Mark Grimes Shannan Martin Manager, Consumer Publishing Manager, Graphic Design and Production Carolyn Kolbaba Peg Mulcahy Coordinator, Product Development Manager, Consumer Marketing and Sales Holly Kaminski Kathleen Juhl Director, Division of Publishing and Production Services Manager, Consumer Product Marketing Sandi King, MS Maryjo Reynolds Published by the American Academy of Pediatrics 141 Northwest Point Blvd, Elk Grove Village, IL 60007-1019 847/434-4000 Fax: 847/434-8000 www.aap.org Cover design by Daniel Rembert Book design by Linda Diamond Library of Congress Control Number: 2011912900 ISBN: 978-1-58110-651-0 The recommendations in this publication do not indicate an exclusive course of treatment or serve as a standard of medical care. Variations, taking into account individual circumstances, may be appropriate. The names and identifying details in each “A Parent’s Story” may have been changed to protect the privacy of individuals. The content in these sections is for information only. The experiences may or may not be suitable for each family and do not indicate an exclusive course of treatment. Before starting any medical treatment or program, you should consult with your child’s pediatrician, who can discuss your child’s individual needs and counsel you about symptoms and treatment. Products are mentioned for informational purposes only. Inclusion in this publication does not imply endorsement by the American Academy of Pediatrics. The American Academy of Pediatrics is not responsible for the content of the resources mentioned in this publication. Web site addresses are as current as possible, but may change at any time. Every effort is made to keep Autism Spectrum Disorders: What Every Parent Needs to Know consistent with the most recent advice and information available from the American Academy of Pediatrics. Copyright © 2013 American Academy of Pediatrics. 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, or otherwise with- out prior permission from the publisher. Printed in the United States of America. CB0070 9-321 1 2 3 4 5 6 7 8 9 10 What People Are Saying Parents are craving knowledge and understanding of autism spectrum disorders and this guide is a wonderful resource to build that knowledge and encourage parents to advocate so that their child lives in a world where the dignity of every person is cherished, respected, and empowered. Timothy P. Shriver, PhD Chairman and CEO, Special Olympics Covers a wide range of topics in a straightforward, commonsense manner, such as diagno- sis, different behavioral therapies, family stress issues, and lots of other vital information. Essential reading for parents of young children with autism. Temple Grandin Author, Thinking in Pictures: My Life With Autism Outstanding book and a tremendous resource for parents of children with autism spectrum disorders. It is also a must-read for anyone else working to help children with autism reach their full potential. The AAP and the book’s editors, pediatricians Drs Alan Rosenblatt and Paul Carbone (who also happens to be the parent of a child with autism), know what they’re talking about! Richard E. Besser, MD, FAAP Chief Health and Medical Editor, ABC News Parents looking for a resource after an autism diagnosis will pull Autism Spectrum Disorders: What Every Parent Needs to Know off the shelf with great frequency. The AAP and Drs Carbone and Rosenblatt cover complex issues in an accessible manner. I will recom- mend this resource to families in need of quality information regarding services and sup- ports for their children with autism. Patricia Wright, PhD, MPH National Director, Autism Services, Easter Seals vi What People Are Saying Autism Spectrum Disorders: What Every Parent Needs to Know is a must-read for every parent with a child on the autism spectrum. How you as a parent can help your child through play, language encouragement, structure, planning and partnering with professionals is outlined at each developmental stage from infancy through adulthood. Chapters on family relationships, your relationship with your pediatrician, and ways that you can become involved as an advo- cate for both your own child and for systems change, guide and encourage. Stories from mul- tiple families, told in their own words, describe personal experiences and coping strategies that provide hope and comfort throughout the book. Get this book—it’s a complete gem! Nora Wells, MEd Director of Programs, Family Voices Instead of reading like a book, going through the pages of Autism Spectrum Disorders: What Every Parent Needs to Know is like having a casual conversation in your living room with a guru on ASD. The chapters on family, advocacy, and resources are particularly unique and helpful. The information is accurate, comprehensive, well organized, written in a compas- sionate, reader-friendly style, and interlaced with inspiring stories and endearing humor. Most parents will resonate with some of the stories; many will resonate with all of them. Some stories will bring tears and smiles at the same time. It is a must-have book for parents, service providers, and advocates alike. Chris Plauché Johnson, MEd, MA, MD, FAAP Medical Director, Autism Community Network; clinical professor (retired), University of Texas Health Science Center at San Antonio; cochair, American Academy of Pediatrics Autism Subcommittee (2003–2007) Acknowledgments Editors Susan L. Hyman, MD, FAAP Alan I. Rosenblatt, MD, FAAP Susan E. Levy, MD, FAAP Paul S. Carbone, MD, FAAP Patricia Manning-Courtney, MD, FAAP Georgina Peacock, MD, MPH, FAAP American Academy of Pediatrics Marshalyn Yeargin-Allsopp, MD, FAAP Board of Directors Reviewer Sara H. Goza, MD, FAAP Parent Reviewers/Contributors Beth Bullen, RN American Academy of Pediatrics Kate Clemont Lead Staff Debra L. Dunn, Esq Carolyn Kolbaba Amy Kelly Manager, Consumer Publishing Amy Kratchman Division of Product Development Bernadette Lionetta Stephanie Mucha Skipper, MPH Sharon A. Nagel, MSW, RSW Manager, Children With Special Needs Chinyere Obimba Initiatives Melissa Parrish Division of Children With Special Needs Lee Stickle Holly Kaminski Sandy Tiahrt, MS Coordinator, Product Development Michelle Zier, JD Division of Product Development Additional Assistance Medical Reviewers/Contributors James G. Pawelski Carolyn Bridgemohan, MD, FAAP Dan Walter Charles Cowan, MD, FAAP Writer Larry Desch, MD, FAAP Winnie Yu Ellen Roy Elias, MD, FAAP Kathryn Ellerbeck, MD, MPH, FAAP From the Editors We dedicate this book to the children and families who inspire, teach, and challenge us daily to seek better answers and solutions. Dr Rosenblatt thanks his wife, Lisa, and his children, Galit and Shachar, for the blessings and miracles that have led to this moment. Dr Carbone thanks his wife,