Lisa M. Meeks - Parties, Dorms and Social Norms: A Crash Course in Safe Living for Young Adults on the Autism Spectrum

PARTIES, DORMS
AND
SOCIAL NORMS

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PARTIES, DORMS
AND
SOCIAL NORMS

A CRASH COURSE IN SAFE LIVING
FOR YOUNG ADULTS ON THE AUTISM
SPECTRUM

Lisa M. Meeks and Tracy Loye Masterson
with Michelle Rigler and Emily Quinn

Forewords by Jane Thierfeld-Brown and Aaron Schatzman

Illustrated by Amy Rutherford

Jessica Kingsley Publishers
London and Philadelphia

First published in 2016

by Jessica Kingsley Publishers

73 Collier Street

London N1 9BE, UK

and

400 Market Street, Suite 400

Philadelphia, PA 19106, USA

www.jkp.com

Copyright Lisa M. Meeks and Tracy Loye Masterson 2016

First foreword copyright Jane Thierfeld-Brown 2016

Second foreword copyright Aaron Schatzman 2016

Illustration copyright Amy Rutherford 2016

All rights reserved. No part of this publication may be reproduced in any material form (including photocopying or storing it in any medium by electronic means and whether or not transiently or incidentally to some other use of this publication) without the written permission of the copyright owner except in accordance with the provisions of the Copyright, Designs and Patents Act 1988 or under the terms of a licence issued by the Copyright Licensing Agency Ltd, Saffron House, 610 Kirby Street, London EC1N 8TS. Applications for the copyright owners written permission to reproduce any part of this publication should be addressed to the publisher.

Warning: The doing of an unauthorised act in relation to a copyright work may result in both a civil claim for damages and criminal prosecution.

Library of Congress Cataloging in Publication Data

A CIP catalog record for this book is available from the Library of Congress

British Library Cataloguing in Publication Data

A CIP catalogue record for this book is available from the British Library

ISBN 978 1 84905 746 2

eISBN 978 1 78450 192 1

To my loves
Christopher, Layne Susan Sandra and Graham Kenneth Michael.
Also
In memory of my mother, Susan Loye.
Tracy

****

To my children
Kaitlyn and Christopher
You are my greatest joy.
To my amazing sister, Jeanine,
for helping improve the lives of children with autism.
And in celebration and memory of Ms. Etta James Jones,
my co-pilot on this project.
Lisa

This text is dedicated to the young adults and parents of young
adults who shared their stories, their triumphs and their struggles
to inform this book; thank you. Your guidance and experiences
will help others safely navigate the transition into adulthood.

*****

From the authors

To all the teachers, therapists, behavior analyst and
organizations who dedicate their resources to working with
individuals on the spectrumyou are angels.

Contents

Acknowledgments

The authors wish to acknowledge the contributions of the following individuals:

Lisa Clark, Editor, Jessica Kingsley Publishers

Suzanne Connelly, Editorial Assistant, Jessica Kingsley Publishers

Emma Katharine Dargen, Research Assistant for Dr. Meeks, UC Berkeley

Taylor M. Hanes, Research Assistant for Dr. Masterson, John Carroll University

Patricia Zentner, Research Assistant for Dr. Masterson, John Carroll University

Nathaniel L. Jones, Editor, Cleveland, OH

Milestones Autism Resources, Cleveland, OH

Emily McClave, Original and Former Commissioning Editor, Jessica Kingsley Publishers

Dr. Jane Thierfeld-Brown, College Autism Spectrum

Beth Thompson, Teen/Adult Services Manager, Milestones Autism Resources

All of the families and young adults who graciously shared their stories about safety.

Foreword

A Parents Perspective

The title of Eli Gottliebs recent The New York Times article, Adult, autistic and ignored (September 5, 2015) encapsulates the desperation of most parents and family members who live with or love an adult on the spectrum. For too long, authors, service providers, researchers and programs have focused on children with autism and left the adults with no services and little hope for supports outside their families. As a service provider, researcher and parent, I was often alone in banging the drum for adults on the spectrum. In the 1990s and early 2000s I was one of a handful of speakers talking about adults at national autism conferences, one of a small group of speakers defending monies for adult programs compared with hundreds of people championing children with autism. If I was frustrated, how did the young adults on the spectrum feel?

In the 15 to 20 years since that time some services and programs have begun to address adult issues but much more needs to be done. In the year 2000, the US higher education system had only one or two college programs for students with autism. This academic year (20152016), there will be closer to 30 programs and enhanced services for students on the spectrum pursuing college degrees. Additionally, vocational training programs are being developed and the healthcare system is looking to improve the delivery of medical care to adults on the spectrum. However, these areas need to be vastly increased in order to address what the Centers for Disease Control and Prevention state is the 500,000 people on the spectrum that will be adults by 2020.

Besides education and healthcare concerns, people on the spectrum have serious challenges with employment and housing. However, it is not possible to address any of these issues without recognizing the need for independence and safety. Adults on the spectrum cannot work and live independently without learning skills for safely navigating the adult world.

The authors understand the broader issues of young adults on the spectrum and have written a volume that focuses on the need for independence and safety. Through the use of charts, guidelines and summaries, the authors convey critical information in a clear, concise manner. This book provides organized, specific advice that young adults can use as a resource. For example, many young adults with autism are hesitant to discuss highly personal topics (dating, drinking, sex and socializing). The authors provide this information in a reader-friendly, accessible format where young adults can gain knowledge in great detail while maintaining privacy and self-respect.