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Life Journey Through Autism: A Guide for Military Families by Organization for Autism Research 2111 Wilson Blvd, Suite 401 Arlington, VA 22201 (866) 366-9710 (Toll-free) www.researchautism.org This publication is designed to provide accurate and authoritative information concerning the subject matter covered. It is published with the understanding that the Organization for Autism Research, Inc. is not engaged in the rendering of legal, medical, or other professional services. If legal, medical, or other expert advice or assistance is required, the services of a competent professional should be sought. Copyright © 2019 Organization for Autism Research, Inc. All rights reserved. No part of this work may be reproduced or transmitted in any form or by any means, electronic or mechanical, including photocopying and recording, or by any information storage or retrieval system, without prior written consent of the Organization for Autism Research, Inc., unless such copying is expressly permitted by Federal copyright law. Address all inquiries to the Organization for Autism Research, Inc., 2111 Wilson Blvd, Suite 401, Arlington, VA 22201. ii Board of Directors’ Message November 19, 2019 Hello, my name is Greg Smith, and I am a member of the Organization for Autism Research (OAR) Board of Directors, a proud parent of a child with autism, and a retired Air Force member. I was on active duty when my daughter came into this world. She was born prematurely, and we were fortunate to have a lot of caring people provide immeasurable help as my wife and I grappled with the many questions we faced with regard to our daughter’s issues. As I look back on those times, I feel very blessed. So, when I was asked if I would be interested in joining the Board of OAR, I saw it as an opportunity to give back a little of what I had received in the way of support. OAR has afforded me the chance to fulfill my desire to give something back, and for that I am very thankful. My involvement with OAR has allowed me to stay engaged in the broader autism community and to be in tune with the greater struggle faced by families dealing with autism. When I consider this disorder in light of my background, there is an extra special place in my heart for those who support and defend our country and our way of life. We know our military families face additional hardships when it comes to dealing with this disorder. These hardships are manifested in many ways, to include military members deploying, which means that, in many cases, a spouse has to handle the many issues that arise on the “home front” on their own. There is also the issue of separation from extended family members, which further highlights the need for additional support. In spite of these and other hardships, our military families keep getting up each day and doing the best they can to take care of their families. They demonstrate a strong “sense of duty” and focus. I am honored to have been a member of this honorable profession, and have nothing but respect for the people who have served and those who are still serving. Because of the sacrifices that our military families make on a regular basis, the Board is honored to support them with this updated publication, Life Journey Through Autism: A Guide for Military Families and the associated website, Operation Autism. These resources are but small tokens of our support from the heart. The website and guidebook are there for you to use, and the Board looks forward to your feedback on ways to make them even better. We salute your tenacity in dealing not only with autism but also the attendant military issues. OAR will continue to do what we can to support you. In closing, I echo the sentiments expressed by our Executive Director, “thank you for your service to all the men and women serving in the Army, Air Force, Navy, Marines, and Coast Guard and all their reserve components today.” Sincerely, Gregory L. Smith Member, Board of Directors Organization for Autism Research iii ORGANIZATION FOR AUTISM RESEARCH Board of Directors James M. Sack Cathy Schwallie Farmer Chairman Berkeley, CA McLean, VA Anthony Ferrera Lori Lapin Jones President, OAR NJ Vice Chairperson Flemington, NJ Great Neck, NY Peter Gerhardt, Ed.D. Marie Kish Chair, Scientific Council Treasurer Paramus, NJ Tysons, VA Lisa Hussman Michael V. Maloney President, Hussman Foundation Executive Director and Secretary Ellicott City, MD Arlington, VA Gregory L. Smith Roberto Datorre Tysons, VA Elizabethtown, PA Stephen Shore William Donlon Garden City, NY Hicksville, NY Staff Michael V. Maloney Rachel Luizza Executive Director Senior Coordinator, RUN FOR AUTISM Kristen Essex Sarah Rodis Deputy Executive Director Senior Coordinator, RUN FOR AUTISM Kimberly Ha Amanda Rioux Director, Research and Programs Manager, Hire Autism Margaret Gorman Naina Narayana Chernoff Associate, Programs Associate, Hire Autism Sean Flynn Director, RUN FOR AUTISM v ORGANIZATION FOR AUTISM RESEARCH Scientific Council OAR’s Scientific Council is comprised of 17 leading autism and medical professionals, and serves as an expert information resource for all OAR matters concerning issues of research. As such, the Council assists OAR’s Board of Directors in developing its research strategy, near-term priorities, and long-range research objectives. The Council also provides program guidance and oversight for OAR’s research competi- tion and plays a central role in ensuring the highest quality reviews for prospective OAR research proposals. Peter F. Gerhardt, Ed.D. Kara Hume, Ph.D. Chair Advanced Research Scientist Executive Director, EPIC School FPG Child Development Institute Paramus, NJ University of North Carolina at Chapel Hill Joanne Gerenser, Ph.D., CC-SLP Chapel Hill, NC Vice Chair Executive Director, Eden II Programs SungWoo Kahng, Ph.D., BCBA-D Staten Island, NY Clinical Associate Professor Department of Applied Psychology Shahla Ala’i-Rosales, Ph.D., BCBA-D Rutgers University Associate Professor, Department of Piscataway, NJ Behavior Analysis University of North Texas Gerald P. Koocher, Ph.D. Denton, TX Provost and Senior Vice President for Academic Affairs Kevin M. Ayres, Ph.D., BCBA-D Quincy College Professor, Co-director, Center for Quincy, MA Autism and Behavioral Education University of Georgia Suzanne Letso, M.A., BCBA Athens, GA Co-founder and Chief Executive Officer Milestones Behavioral Services Jonathan Campbell, Ph.D. Milford, CT Professor and Director, PsyD Program, Department of Psychology Michael Londner, M.D., MPH, MBA Western Carolina University Inova Health Systems Cullowhee, NC Falls Church, VA continued vii James A. Mulick, Ph.D. Mary Jane Weiss, Ph.D., BCBA Professor, Department of Psychology Professor of Education and Director of College of Social and Behavioral Sciences Programs in ABA and Autism The Ohio State University Endicott College Columbus, OH Beverly, MA Daniel Openden, Ph.D., BCBA-D Patricia Wright, Ph.D., MPH President & CEO Vice President of Program Development Southwest Autism Research & NEXT for AUTISM Resource Center New York, NY Phoenix, AZ Thomas Zane, Ph.D. Dora M. Raymaker, Ph.D Director Research Assistant Professor Online Applied Behavior Analysis Portland State University Programs Portland, OR University of Kansas Lawrence, KS Paul Shattuck, Ph.D Associate Professor A.J. Drexel Autism Institute Philadelphia, PA viii Acknowledgments The original 2010 version of this publication was a product of a collaborative effort between the Organization for Autism Research (OAR) and the Southwest Autism Research & Resource Center (SARCC). OAR and SARCC are dedicated to providing practical information to those living with the challenges of autism, including individ- uals, families, and educators and other professionals. Nearly ten years after its initial launch, this 2019 update of Life Journey Through Autism: A Guide for Military Families was made possible by the generosity of The Schiff Foundation. OAR Project Team (2010) Peter F. Gerhardt, Ed.D., President & Chair, Scientific Council Michael V. Maloney, Executive Director Sarah Schuyler, Lead Project Intern Danielle Kruglak, Project Intern Kate Rice, Project Intern SARRC Project Team (2010) Denise D. Resnik, Co-Founder Daniel Openden, Ph.D., BCBA-D OAR Revision Team (2019) Michael V. Maloney, Executive Director Kimberly Ha, Research and Programs Director Saman Kamgar-Parsi, Senior Programs Associate Keygan Miller, Programs & Outreach Intern Margaret Gorman, Programs Associate Writers (2019) Katie C. Alexander, MS, OTR Erin M. Clemens, OTR/L, CIMI Marilyn Gilbert Capt. Joseph McBreen, USN/MC Holly Whittenburg, M.Ed., M.A.Ed. Mandy Farmer Humana Military (TRICARE East) In addition to the members of the Board of Directors, Scientific Council, staff, and writers, special thanks go to the following people for their contributions to the content and editing of A Guide for Military Families: ix