ERIC ED617877: Life Journey through Autism: A Guide for Transition to Adulthood. 2nd Edition

2021·3.7 MB·English

by  ERIC

Life Journey Through Autism:
A Guide for Transition to Adulthood
ORGANIZATION FOR AUTISM RESEARCH

Life Journey Through Autism:
A Guide for Transition to Adulthood
by
Organization for Autism Research
2111 Wilson Boulevard, Suite 401
Arlington, VA 22201
[phone] (toll-free)
www.researchautism.org
This revised publication is designed to provide accurate and authoritative information concerning the subject matter cov-
ered. It is published with the understanding that the Organization for Autism Research, Inc. is not engaged in the render-
ing 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.
Originally published October 2006.
Copyright © 2021 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, includ-
ing 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.
www.researchautism.org
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ORGANIZATION FOR AUTISM RESEARCH
Research and resources that help families today!
Dear Readers, September 2021
Twenty-four years ago, I began my journey in the autism world
when my son received his autism diagnosis. I became educated and
trained. I learned to navigate and advocate. During my son’s early
intervention, elementary education, and secondary education years,
I saw an exponential increase in autism awareness and services. I
experienced tremendous successes and milestones with my son in
school and at home. And just when I thought I could breathe, along
came adulthood on the horizon. Once again, a path for my son had
to be forged and, like fifteen years before, navigating the path was
daunting. If you are experiencing just that, thinking no one understands what you are facing,
and not sure where to begin – you can breathe, because OAR gets it.
Life Journey Through Autism: A Guide for Transition to Adulthood is a resource that takes you
through the adult transition journey. The guide provides information on laws and policies,
transition planning, postsecondary education, vocation and employment, and life skills, in-
cluding living arrangements, and health and safety goals. It does so methodically and com-
prehensively. To enhance the transition to adulthood, education and planning are key compo-
nents, and in developing this guide, OAR recognizes the importance of these factors.
OAR remains committed to enhancing the quality of life for individuals with autism by pro-
viding competent information and useful resources. OAR also remains committed to being
one step ahead in the autism education world – in fact, OAR’s foray into the adult transition
journey is not of recent vintage for this guide is an update of its original publication in 2006.
Transitioning into adulthood is one of the most significant steps in the life of an individual
with autism. This guide will help you to navigate and embrace that journey. In my view, this
adult transition guide is one of OAR’s most useful and impactful resources.
Sincerely,
Lori Lapin Jones
Lori Lapin Jones PLLC
Vice Chairwoman, Board of Directors
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Dear Readers, September 2021
In an ideal world, a student’s first day after graduating from high
school would not look much different from their last day of school.
That is, the transition planning and other preparation would have
been so well developed that the student’s progress did not come to
a sudden stop when school ended but simply continued uninter-
rupted.
Transitioning from one phase of life to the next should be seamless.
But accomplishing that requires a comprehensive approach to edu-
cation that gradually helps children move from the sandbox on the
playground in kindergarten to changing classes through middle school, and then on to work
and higher education after high school. For educators and parents, seeing and understanding
what goes into this kind of long-range planning and preparation within the larger system of
education and community supports can difficult.
Typically, parents and educators cannot rely on their own experience maturing into adulthood
when planning for the needs of their child or student with autism. That is where this guide
comes in for additional input and support. This guide helps draw attention to key areas of
consideration with regard to the transition to life after high school, not only for teaching and
instruction but also in terms of legal protections and the overall planning process. Much of
the dignity and success of adulthood comes from being able to do things for oneself, and every
child is entitled to grow into that place.
Contemplating transition planning from an ecological perspective, different readers will ben-
efit from different sections of this guide and at different points in the process. However, a fun-
damental focus throughout all the planning is the overwhelming importance of keeping the
goals and objectives of the person with autism at the center of the process. Ideally, the young
adult transitioning into adulthood drives the process themselves. Encourage them to engage
with this guide alongside with you and know which areas will be of greatest importance and
relevance to them. However, if they need support in interpreting and understanding the areas
where they need help, those providing such support – whether parents, family members, or
educators – must be mindful of the young adult’s goals and dreams.
We only have a limited time frame in which to leverage public school services. Schools can be
a rich resource, but they often vary in quality based on a myriad factors, including state and
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local policy as well as funding. Regardless of such differences, a fairly universal constant is the
reality that once access to schooling ends, support opportunities dwindle, making it essential
to get as much out of the school years as possible. This guide provides a roadmap for individu-
als with autism, their parents, and their teachers as they together advocate for the supports and
instruction that will help maximize post-school outcomes.
As a society, we lose a tremendous amount of human capital when we fail to help all students
reach their full potential – a loss that, in turn, diminishes what our communities can become.
When we optimize opportunities for everyone and provide the support, structure, and instruc-
tion to everyone as they need it, the entire community benefits. Hopefully, this transition
guide will serve as a resource in pursuit of these ends.
Sincerely,
Kevin M. Ayres, Ph.D., BCBA-D
The University of Georgia
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Dear Readers, September 2021
The Embassy of the State of Qatar in the United States is a proud spon-
sor of the Organization for Autism Research. OAR provides a vital ser-
vice that helps students build friendships with their autistic peers to
help create inclusive and supportive educational environments. Their
work does not just foster the developmental needs of people on the Au-
tism Spectrum, it also ensures they find acceptance and understanding
in their communities.
I have personally experienced the work OAR is doing, having had the
honor of meeting with OAR’s Executive Director, Michael Maloney,
during a visit by autism leadership to Doha in 2020. OAR’s passion and dedication to the work
they do is life changing for so many young people, and we look forward to partnering together
to further enhance the programs they offer to students and educators across the United States.
The State of Qatar has a long history of supporting Autism initiatives at home and around the
world. In 2007, Her Highness Sheikha Moza bint Nasser first proposed World Autism Aware-
ness Day to the United Nations General Assembly. The Embassy of the State of Qatar in the
United States has followed her example and is dedicated to supporting the US autism com-
munity nationwide. We are committed to facilitating organizations that teach essential skills,
provide career opportunities, and build independence for individuals on the spectrum. We
subscribe to a holistic viewpoint that true progress comes from providing resources to people
with autism, their caregivers, and the community at large, and OAR is a prime example of an
organization that is doing just that.
Thank you OAR for your commitment to the autism community, and thank you reader for
enriching your knowledge on inclusivity and engagement. Together we can build a society ac-
cepting of all abilities.
With renewed appreciation,
Fatema Al-Baker
Director of Public Diplomacy Outreach
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ORGANIZATION FOR AUTISM RESEARCH
Research and resources that help families today!
Board of Directors
James M. Sack Cathy Schwallie Farmer
Chairman Berkeley, CA
McLean, VA
Anthony Ferrera
Lori Lapin Jones Flemington, NJ
Vice Chairwoman
Great Neck, NY Peter Gerhardt, Ed.D.
Chair, Scientific Council
Marie Johnson New Milford, NJ
Treasurer
Herndon, VA Lisa Hussman
Ellicott City, MD
Michael V. Maloney
Executive Director and Secretary Stephen Shore, Ed.D.
Arlington, VA Newton, MA
Elizabeth Cavaliere Gregory L. Smith
Tampa, FL Lorton, VA
Roberto Datorre Joseph Mangalasseril Thomas
Elizabethtown, PA Naperville, IL
William Donlon
Hicksville, NY
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ORGANIZATION FOR AUTISM RESEARCH
Research and resources that help families today!
Scientific Council
OAR’s Scientific Council is comprised of 20 leading autism and medical professionals and
serves as an expert information resource for all OAR matters concerning issues of research. 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 competition and plays a central role in ensuring the highest quality reviews
for OAR research proposals.
Peter F. Gerhardt, Ed.D. Jonathan Campbell, Ph.D.
Chairman Professor and Director,
Executive Director, EPIC School PsyD Program, Department of Psychology
Paramus, NJ Western Carolina University
Cullowhee, NC
Joanne Gerenser, Ph.D.
Vice Chairwoman Kara Hume, Ph.D.
Executive Director, Eden II Programs Associate Professor, School of Education
Staten Island, NY University of North Carolina at Chapel Hill
Chapel Hill, NC
Shahla Ala’i, Ph.D., BCBA-D
Associate Professor,
SungWoo Kahng, Ph.D., BCBA-D
Department of Behavior Analysis
Chair, Department of Applied Psychology
University of North Texas
Rutgers University
Denton, TX
Piscataway, NJ
Kevin M. Ayres, Ph.D., BCBA-D
Gerald P. Koocher, Ph.D.
Professor, Co-Director,
Faculty,
Center for Autism and Behavioral Education
Boston Children’s Hospital and
University of Georgia
Harvard Medical School
Athens, GA
Boston, MA
Teal Benevides, Ph.D., MS, OTR/L
Suzanne Letso, M.A., BCBA
Associate Professor,
Co-Founder and Chief Executive Officer,
Department of Occupational Therapy
Milestones Behavioral Services
Augusta University
Milford, CT