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First 100 Days Kit A tool kit to assist families in getting the critical information they need in the first 100 days after an autism diagnosis. Autism Speaks Autism Speaks does not provide medical or legal advice or services. Rather, Autism Speaks provides general information about autism as a service to the community. The information provided in this kit is not a recommendation, referral or endorsement of any resource, therapeutic method, or service provider and does not replace the advice of medical, legal or educational professionals. This kit is not intended as a tool for verifying the credentials, qualifications, or abilities of any organization, product or professional. Autism Speaks has not validated and is not responsible for any information or services provided by third parties. You are urged to use independent judgment and request references when considering any resource associated with the provision of services related to autism. © 2008 Autism Speaks Inc. Autism Speaks and Autism Speaks It's Time To Listen & Design are trademarks owned by Autism Speaks Inc. All rights reserved. Raun Melmed, M.D. Director, Melmed Center About this Kit... Medical Director, SARRC Autism Speaks would like to extend special thanks to the Parent Advisory Committee for the time and effort Ricki Robinson, M.D., MPH that they put into reviewing the 100 Day Kit. USC Keck School of Medicine Sarah J. Spence M.D., Ph.D. 100 Day Kit Staff Clinician Pediatrics and Developmental Neuropsychiatry Branch Parent Advisory Committee National Institute of Mental Health Stacy Crowe Rodney Goodman Carole Samango-Sprouse, Ed.D. Beth Hawes Director, Neurodevelopmental Diagnostic Center for Deborah Hilibrand Young Children, Associate Clinical Professor in the Department of Pediatrics at George Washington University, Stacy Karger Marjorie Madfis Wendy Stone, Ph.D. Judith Ursitti Vanderbilt Kennedy Center Marcy Wenning Treatment and Research Institute for Autism Spectrum Disorders With gratitude, we thank the 100 Day Kit Professional Advisory Committee for generously donating their time and experience to this project. Family Services 100 Day Kit Committee Members Professional Advisory Committee Liz Bell Parent Geraldine Dawson, Ph.D. Chief Science Officer, Autism Speaks Sallie Bernard Parent, Executive Director, SafeMinds Robin L. Hansen, M.D. Director, University Center for Excellence in Developmental Michele Pierce Burns Disabilities Parent, Director of Development, Celebrate The Children Director of Clinical Programs School M.I.N.D. Institute/U.C.Davis Farah Chapes Susan Hyman, M.D. University of Rochester School of Medicine and Dentistry Chief Administrative Officer, The Marcus Institute Strong Center for Developmental Disabilities Andrew Conrad, Ph.D.* Connie Kasari, Ph.D. Chief Scientific Officer, Co-founder, LabCorp's National Professor of Psychological Studies in Education Genetics Institute UCLA Graduate School of Education and Information Sciences Peter F. Gerhardt, Ed.D Ami Klin, Ph.D. President, Organization for Autism Research (OAR) Yale University, School of Medicine Child Study Center Susan Hyman, M.D. Strong Center for Developmental Disabilities Lynn Kern Koegel, Ph.D. Clinical Director, Koegel Autism Center Brian Kelly * ** University of California, Santa Barbara Parent Principal, Eastern Development Robert L. Koegel, Ph.D. Professor of Clinical Psychology and Special Education Gary S. Mayerson* Director, Koegel Autism Center Founding Attorney, Mayerson & Associates University of California, Santa Barbara Kevin Murray* primary research interests are in early identification and Parent early intervention for children with Autism Spectrum Chief Operating Officer, Rock Ridge Associates Disorders. Linda Meyer, Ed.D Theresa Foy DiGeronimo, MEd is the coauthor Executive Director, The New Jersey Center for Outreach and of How to Talk to Your Kids About Really Important Things, Services for the Autism Community (COSAC) Launching Our Black Children for Success, College of the Overwhelmed, and other books for Jossey-Bass. Denise D. Resnik Parent, Co-Founder and Board Chairman, Southwest Au- tism Research and Resource Center (SARRC) Kathryn Smerling, PhD is an educator and psychologist with advanced degrees in both disciplines. Michelle Smigel She maintains a private practice in Manhattan, specializing Parent in family dynamics and child development process. She holds a Ph.D. , an M.S.W., and an M.A. and graduated from Lilly Tartikoff* both the Extern Program at Ackerman Institute for the Philanthropist Family, and the National Institute for Psychotherapies (NIP). Random House has published forty texts by Dr. Kim Wolf Smerling in both Spanish and English for use in the early childhood classroom by supervisors, teachers, parents and Parent paraprofessionals. *Autism Speaks board member **Chairperson – Family Services Committee Ellen Notbohm is author of Ten Things Every Child Parent – indicates a parent of a child with autism with Autism Wishes You Knew and Ten Things Your Student with Autism Wishes You Knew, both ForeWord Book of the Year finalists and iParenting Media Award recipients and, most recently, The Autism Trail Guide: Postcards from the Road Less Traveled. She is also coauthor of the award- winning 1001 Great Ideas for Teaching and Raising Children with Autism Spectrum Disorders, a columnist for Autism About the Asperger’s Digest and Children’s Voice, and a contributor to numerous publications and web sites around the world. Contributors... The Autism Speaks First 100 Days Kit was edited by: Lynn Kern Koegel, PhD is one of the world’s foremost Mather Media experts on the treatment of autism. She and her husband founded the renowned Autism Research Center at the Graduate School of Education at the University of California, Santa Barbara, where she is currently the clinical director. She holds a Ph.D. in educational psychology and an M.A. in speech and hearing sciences. She lectures frequently at universities, conferences, schools, and parent organizations. Claire LaZebnik is the author of the novel Same As It Never Was and has written for GQ, Cosmopolitan, and Vogue. Ms. LaZebnik is coauthor of the book Overcoming Autism. A graduate of Harvard University, she lives with her TV writer husband and four children, one of whom has autism, in Pacific Palisades, California. Wendy L. Stone, PhD is a professor of pediatrics and psychology and human development at Vanderbilt University and an investigator at the Vanderbilt Kennedy Center for Research on Human Development. She founded and directs the Vanderbilt Treatment and Research Institute for Autism Spectrum Disorders, where she has continuing frontline clinical experience with a broad variety of children with Autism Spectrum Disorders and their families. Her Contact Us... Autism Speaks ™ Ask for Help Contact the FAMILY SERVICES Autism Response Response Team (ART) Team members are specially trained to help families with the day-to-day challenges of living with autism. Contact ART with your questions about resources, support and information. Call us at 888-AUTISM 2 (288-4762) or email: West Region [email protected] Midwest Region [email protected] Northeast Region [email protected] Southeast Region [email protected] MoreThere is a wealthinformation... of information on the Autism Speaks web site. Visit www.AutismSpeaks.org ShareTo share your your comments comments on the kit - What was helpful? What additional information could be inluded?, etc. - please email them to 100daykit@ AutismSpeaks.org, with the word “feedback” in the subject line. Autism Speaks.™ 100 Day Kit. Section WhyAbout was my childAutism diagnosed ..................................................... with Autism? And what does it mean?................................................1 1 Why does my child need a diagnosis of Autism?.....................................................................................1 How is Autism Diagnosed?...................................................................................................................................2 What is Autism?........................................................................................................................................................3 More information on the Symptoms of Autism...............................................................................5,6,7 Unique Abilities that may Accompany Autism........................................................................................8 Physical & Medical Issues that may Accompany Autism................................................................9,10 HowYou, will YourI deal with Family the diagnosis?................................................................................................11,12,13 & Autism................................ 2 Tips from Experienced Parents......................................................................................................................13,14 What should we know about our younger and future children?...........................................14 How will this effect our Family?.......................................................................................................................15 Sharing Your Struggle............................................................................................................................................16 Fifteen Tips for your Family..........................................................................................................................17,18
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