An Early Start for Your Child with Autism: Using Everyday Activities to Help Kids Connect, Communicate, and Learn
Page 1
Also from Sally J. Rogers and Geraldine Dawson
For General Readers
A Parent’s Guide to Asperger Syndrome and High-Functioning Autism:
How to Meet the Challenges and Help Your Child Thrive
Sally Ozonoff, Geraldine Dawson, and James McPartland
For Professionals
Early Start Denver Model Curriculum Checklist
for Young Children with Autism
Sally J. Rogers and Geraldine Dawson
Early Start Denver Model for Young Children with Autism:
Promoting Language, Learning, and Engagement
Sally J. Rogers and Geraldine Dawson
Imitation and the Social Mind: Autism and Typical Development
Edited by Sally J. Rogers and Justin H. G. Williams
Using Everyday Activities
to Help Kids Connect,
Communicate,
and Learn
Sally J. Rogers, PhD
Geraldine Dawson, PhD
Laurie A. Vismara, PhD
THE GUILFORD PRESS
New York London
To all parents of children and adults with autism, for their courage,
their hope, their generosity, and their perseverance
—S. J. R.
To my loving husband, Joseph, and my wonderful children,
Chris and Maggie, who have supported my work with patience,
understanding, and a shared commitment to improving the lives
of people with autism
—G. D.
To my father, for his commitment to improving the lives
of individuals with autism, and to all the courageous individuals
and their families who are overcoming the challenges of autism
—L. A. V.
Epub Edition ISBN: 9781462505074; Kindle Edition ISBN: 9781462505081
© 2012 The Guilford Press
A Division of Guilford Publications, Inc.
72 Spring Street, New York, NY 10012
www.guilford.com
All rights reserved
The information in this volume is not intended as a substitute for consultation with healthcare professionals. Each individual’s health concerns should be evaluated by a qualified professional.
Except as indicated, no part of this book may be reproduced, translated, stored in a retrieval system, or transmitted, in any form or by any means, electronic, mechanical, photocopying, microfilming, recording, or otherwise, without written permission from the publisher.
Last digit is print number: 9 8 7 6 5 4 3 2 1
Library of Congress Cataloging-in-Publication Data is available from the publisher.
ISBN 978-1-60918-470-4 (pbk.)
ISBN 978-1-4625-0389-6 (hardcover)
Contents
Also from Sally J. Rogers and Geraldine Dawson
Title Page
Copyright Page
Authors’ Note
Acknowledgments
Introduction
Part I
Getting Started
1 Setting Up Your Child’s Early Intervention Program
2 Taking Care of Yourself and Your Family
3 How Your Early Efforts Can Help Your Child Engage with Others and Boost Your Child’s Learning
Part II
Everyday Strategies to Help Your Child Engage, Communicate, and Learn
4 Step into the Spotlight: Capturing Your Child’s Attention
5 Find the Smile!: Having Fun with Sensory Social Routines
6 It Takes Two to Tango: Building Back-and-Forth Interactions
7 Talking Bodies: The Importance of Nonverbal Communication
8 “Do What I Do!”: Helping Your Child Learn by Imitating
9 Let’s Get Technical: How Children Learn
10 The Joint Attention Triangle: Sharing Interests with Others
11 It’s Playtime!
12 Let’s Pretend!
13 Moving into Speech
14 Putting It All Together
Appendix: Toys, Materials, and Books for Your Young Child with Autism
Resources
Index
About the Authors
About Guilford Publications
Discover More Guilford Titles
Authors’ Note
To protect the identities of the families with whom we have worked, all the stories about families and the examples in this book are composites of real people created to reflect common challenges and successes that we have witnessed many times. The comments from parents scattered throughout the book have been reprinted in their own words with their permission, but their names have been omitted to protect their privacy. We are grateful for their candor and support.
A word about our use of pronouns in this book may also be helpful. In most of the text, we alternate between “he” and “she” to refer to your child with autism. However, in items for your personal use (such as forms, boxes, Activity Checklists, and tables), as well as in the Part II Chapter Summaries and in Chapter 14, we use “he or she.”
Acknowledgments
We want to begin by expressing our deep appreciation for the support we have received from Rochelle Serwator, Chris Benton, and Kitty Moore at The Guilford Press, for motivating and encouraging us, believing in the value of this book, and helping us produce a better one than we would have thought possible. We also want to share our individual acknowledgments.
From Sally:
My preparation for writing this book began with the very first parents and toddlers with whom I worked in Ann Arbor, Michigan. My experiences with children like Laura Ann and Peter, as well as their parents, taught me so much about the first few years of a family’s life when a child has developmental disabilities. I appreciate what I learned from them about supporting their relationships, their interactional styles, and their child-raising and family values as they provided interventions for their children. I am extremely grateful to the families in Denver with whom my colleagues and I worked. They are the families from whom I learned not only about early autism and its effects on families, but also about the resilience, hope, and determination of parents to seek out what is best for their children—who persist, across years and decades, to improve the quality of their children’s day-to-day lives and prepare themselves and their children for the future. I appreciate all that I learned from my Denver colleagues in the Developmental Psychobiology Research Group about parent–child relationships and measurement approaches, and I appreciate their challenges to me (especially those of Bob Emde and Gordon Farley) to move from clinical services to well-controlled studies of early intervention.
I particularly appreciate what I have learned in the collaborations with my two coauthors, who are also friends and colleagues. Geri’s work allowed for tremendous growth in the definition and rigor of the intervention approach, and she has been a tireless, enthusiastic, and optimistic partner in our shared work with the Early Start Denver Model (ESDM). Laurie and I together worked out much of the methodology for the ESDM parent training package, which she first studied and published in her postdoctoral research program. The three of us share both belief and experience in the power of parent-delivered interventions embedded in daily routines to teach young children with autism language, play, and social engagement, and these beliefs and experiences were linchpins for developing our research programs in parent interventions and for w
riting this book.
I also want to thank my two daughters, Sara and Amy, for giving me my only direct experience in parenting toddlers, and for embracing my autism work throughout their lives. My assistant, Diane Larzelere, provided talented and speedy help for manuscript development, and constant cheerful encouragement.
From Geri:
I want to begin by thanking the many parents and children with whom I have had the privilege of working over the past 25 years. They are my true heroes and best teachers. Nothing is as rewarding as sharing the excitement of a new ability being achieved. It has been my delight to watch parents interacting with their young children with autism, drawing them into closer interactions, and helping them learn to communicate and play. It was my privilege to provide suggestions and advice from the perspective of a seasoned clinician and developmental psychologist and then to witness the unfolding of each child’s skills over time. Throughout the process of therapy, the persistence, humor, insight, and unconditional love that family members show have been my inspiration.
Early on, my perspectives on autism were shaped by Eric Schopler, Michael Rutter, and Marian Sigman. At a time when other professionals were blaming parents for autism, Eric, a pioneer, showed us that parents are our most important partners, ideally positioned to help their child with autism. Michael’s insights about the interface between the social and thinking brain ring truer today than ever and are consistent with the ESDM. Marian’s landmark studies described the development of autism in exquisite detail, providing a roadmap for creating developmentally informed treatments.
I gratefully acknowledge my graduate students and colleagues at the University of Washington for their openness to new ideas and willingness to pursue them, and for their humor and passion for improving the lives of children with autism and their families. I especially want to acknowledge the hard work of the UW team in completing the randomized clinical trial of the ESDM, which helped lay the foundation for the work discussed in this book.
Finally, I wish to thank my husband, Joe, and my children, Chris and Maggie, whose constant love and support made this book and my life’s work possible.
From Laurie:
I did not intentionally set out to become an autism researcher or clinician. Rather, autism chose me—my half-brother was diagnosed at a very young age. At the time, I did not fully comprehend what it meant for him to have autism or the minute-by-minute challenges that he and so many other individuals with autism would come to face. What I did come to grasp was the amount of pain my father and stepmother experienced in coping with his diagnosis, coupled with the unconditional love and desire to protect and help him in whatever way humanly possible. Their commitment and dedication to creating an enriched and dignified life for my brother has been my daily inspiration for helping other parents do the same for their children with autism. This book represents the unselfish willingness of parents to share the trials and triumphs through which they have helped their children with autism learn, as well as to help others understand what living with autism is like.
I would also like to acknowledge the incredible mentoring of Drs. Robert and Lynn Koegel and Sally Rogers. The Koegels taught me the value of embracing parents as equal, collaborative partners in helping their children overcome daily challenges. It was because of the Koegels’ teaching that my own brother found his voice, and for this accomplishment I will always be indebted to them. When I came to work with Sally, she expanded my thinking and approach to interacting with families. She helped me listen better to families’ needs, understanding their emotions and struggles with the everyday demands that their children face. I admire her and Geri Dawson’s lifelong dedication to finding answers, through science, to improve the quality of life for individuals with disabilities and their families. I am honored to be a part of this book with them and hope to follow their example of using science to better individuals’ lives. Lastly, thank you to my parents and friends for their unending love and tolerance for my work schedule. They have always understood my passion and at times compulsion to pursue a career in research and academics, and I am grateful for their encouragement and patience.
Introduction
If you are a parent of a child recently diagnosed with autism, you are not alone. A 2009 study by the U.S. Centers for Disease Control and Prevention in Atlanta, Georgia, found that autism spectrum disorders (ASD) affect 1 in 110 children in the United States, meaning that hundreds of thousands of parents have learned that their child has an ASD. This year, more children will be diagnosed with ASD than with cystic fibrosis, AIDS, and cancer combined. Children from all economic and racial backgrounds are affected equally. You are not alone in the chaos of feelings, questions, and concerns that you have now. Please be assured, however, that, equipped with solid knowledge and skills, parents of a child newly diagnosed with ASD can put the pieces in place to have satisfying and happy lives. Children with ASD can lead meaningful, productive, and fulfilling lives. This book will help you take action right now that will put you and your child on the road to that kind of life.
The goal of this book is to provide parents1 like you, and the other people who love and care for your child, with tools and strategies to help your child move onto a positive developmental path as soon as possible. No matter how difficult life may seem right now, there are things you can do starting tomorrow that will, over time, make a tremendous difference in your child’s future. You can teach your child to interact with you and others, communicate, enjoy social exchanges, and play. You can be hopeful that your child can learn, engage, and relate to others.
We know that many parents are left to fend for themselves for quite a while after their child has received a diagnosis of ASD. Either trained therapists are not available in their area, or there are long waiting lists to get into intervention programs. We know you are eager to begin helping your child. So to ease your frustration and worry while you wait for intervention to start, or to enhance the intervention your child may be receiving now, in this book we offer information, tools, and strategies that you can use immediately, on your own. The strategies described here are designed to be used during your everyday interactions with your child—playing, changing, dressing, bathing, meals, outings, book time, and even household chores. They can transform your day-to-day experiences with your child into enriched learning opportunities, and they can also give your child’s treatment a boost as you continue to use them once intervention begins.
With these strategies in hand, we are confident that you will help your child learn, communicate, and play. You will likely see changes in your child day by day, week by week. As you begin to use these strategies, you will see how effectively you can help your child with ASD and how responsive your child can be to new learning opportunities. We hope that some of your feelings of fear and frustration will be replaced with a sense of hope, determination, and confidence in yourself as a parent, in your family, and in your child.
This book is based on our extensive and ongoing work with families like yours, using the Early Start Denver Model to help children become active, curious, and engaged learners in the world. The strategies you’ll learn come from formal scientific studies that show children’s accelerated development when the Early Start Denver Model is delivered combined with parents’ use of these skills. Although children with ASD benefit from and need intensive early intervention services from trained professionals, we believe that parents and other family caregivers can make an enormous difference in their child’s learning.
We three authors of this book have all worked for many years directly as clinicians teaching families how to promote engagement, learning, and communication during the daily routines that naturally occur with children. We have found that parents are as effective as therapists in teaching core skills affected by autism. They can use these strategies to make every interaction with their child count toward learning. Parents also have the opportunity to teach skills or behaviors at home that children may not learn elsewhere or
may not have much opportunity to practice in other settings.
The Early Start Denver Model supports parents’ relationships with their children. It helps parents develop learning opportunities via simple games, communicative interactions during caregiving, and fun exchanges during other daily routines. No special background or prior knowledge is required. The strategies described here are designed to help parent–child interactions become more fun, more emotionally rich, and more meaningful, while at the same time providing children with more learning opportunities. We hope that parents from many different walks of life and many different backgrounds will find the strategies helpful for developing richer learning experiences for their children from the everyday activities involving playing with toys, bathing, eating meals, grocery shopping, or other activities in their daily lives.
We also understand that each child with ASD is unique, with a personal set of special gifts and challenges. As someone once said, “If you have met one child with autism, you have met one child with autism.” Like each typically developing child, each child with ASD has a unique personality, set of likes and dislikes, talents, and challenges. But all young children with ASD, by definition, have trouble relating and communicating with others and playing with toys in a typical way.
Areas in Which Most Children
with ASD Have Difficulties
• Paying attention to other people
• Using social smiles
• Taking turns and engaging in social play
• Using gestures and language
• Imitating others
• Coordinating attention (eye gaze) with others
• Playing in typical ways with toys
From decades of research on early development and intervention in children with ASD, we have learned a great deal about the kinds of difficulties that young children with ASD have. It can be hard for them to pay attention to the people around them—including others’ language and activities. It is often hard for them to share their feelings—happiness, anger, sadness, frustration—with other people by sending emotional messages to others through their facial expressions, gestures, and sounds or words. They experience a full range of emotions but may not share them in a way that is easy to understand. They may not be very interested in playing with other children and may not respond very well to other children’s efforts to play with them. They often do not use many gestures to communicate and don’t seem to understand the gestures of others. They are less likely to imitate others readily, so it can be hard to teach them by showing them how to do something and expecting them to copy it. Many children with ASD enjoy toys, but they often play with them in unusual ways, and their play can be very repetitive. Developing speech, and responding to others’ speech, can be very difficult for many children with ASD, even for those who learn how to repeat other people’s words. It is also not unusual for children with ASD to have some “challenging behaviors.” These challenging behaviors are often seen in other young children as well, but young children with ASD do not respond to the typical ways parents try to teach children how to behave. They may throw tantrums, hit or bite others, destroy objects, and sometimes hurt themselves (this is called self-injurious behavior).