This book is a compelling collection of sixty personal accounts
from people on the autism spectrum and those who care for them—parents,
family members, and professionals. The essay authors address how
autism has changed their lives in love and/or work, what they have
learned, and what they would want others to know that might help
them.
Voices from the Spectrum is a compelling collection
of personal accounts from people on the autism spectrum and those
who care for them—parents, family members, friends, and professionals.
The sixty essays in this collection address how autism has changes
their lives and/or work, what they have learned, and what they would
want others to know that might help them.
Voices from the Spectrum presents personal accounts of the autistic
child’s school and childhood experiences to parents’
and grandparents’ reactions to the diagnosis. The contributors
describe their experiences of autism from mildest to the most severe
case, and share their methods of adapting. They tell both the positive
and negative effects of autism on individuals and families, and
pose the question: is a diagnosis on the autism spectrum a puzzle
to be solved, or something to be embraced and accepted? Even the
editors contribute essays sharing their own unique wisdom and experience.
Anyone who knows a child with autism will appreciate their stories.
Introduction, Learning from Autism |
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12 |
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Part 1: Raising a Child on the Autism
Spectrum |
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15 |
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1 |
The Ride for Autism: A Community Gets in Gear to Help Solve
the Puzzle |
Andrew Abere |
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17 |
2 |
The Tree's On Fire: Voicing Experience |
Marc Biondo |
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21 |
3 |
Perspectives |
Maribel Danta |
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25 |
4 |
Facing the Pain of Autism--and Surviving |
Nicholas Dixon |
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29 |
5 |
Happy Days with my Daughter |
Sheryle Dixon |
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33 |
6 |
Through the Looking Glass |
Phil Dougherty |
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36 |
7 |
My Will |
Margaret Janger Flynn |
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40 |
8 |
Jenius |
Nayma Glenn |
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45 |
9 |
School Days |
Heidi J. Graff |
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49 |
10 |
You Never Know |
Nancy E. Ironside |
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53 |
11 |
Talk to Me, My Darling |
Rosemary Johann-Liang |
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56 |
12 |
Our Lives at the Edge of the Spectrum |
Elizabeth Lipp |
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60 |
13 |
Pulling String |
Irene Litherland |
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64 |
14 |
Still the Same Boy! |
Mary Marmion |
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68 |
15 |
Stump the Cook |
Lauren Goldman Marshall |
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73 |
16 |
Taking the Bag Off |
Shelley Milhous |
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78 |
17 |
Truth: The Parents' Spectrum |
John Nelson |
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82 |
18 |
Listening to Macord |
Eric Peter |
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87 |
19 |
Parallel Worlds |
Antonia Rowland |
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92 |
20 |
The Question |
Shelley Stolaroff Segal |
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96 |
21 |
Simply Perfect |
Tanya Stanley |
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99 |
22 |
On the Wings of Asperger's |
Carol Anne Swett |
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103 |
23 |
Learning to Embrace the `A' Word |
Elaine Tarutis |
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107 |
24 |
On Eating Biscuits: Life with Autism, |
Eileen Teyssou |
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112 |
25 |
Katie's Question |
Lauren Yaffe |
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116 |
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PART 2: The Grandparents' Connection |
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119 |
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26 |
Barefooted Band-Aid Boy |
Patricia E. Gardocki |
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121 |
27 |
Lap Time |
Dan Gottlieb |
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124 |
28 |
An Unexpected Gift of Love |
Oscar and Sally Olson |
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128 |
29 |
A Grandmother's Story |
Elizabeth Nedler |
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132 |
30 |
Come with Me, Grandma |
Frances S. Rosenfield |
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136 |
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The Sibling Experience |
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139 |
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31 |
An Unexpected Blessing, |
Kimberly M. Bittner |
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140 |
32 |
Growing Up with Bradley |
Stephanie Coyle |
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148 |
33 |
Living Life |
Katherine Flaschen |
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148 |
34 |
Their Sound has Gone Out |
Susan Ironside |
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152 |
35 |
Why Am I So Resentful? |
Lydia Liang |
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155 |
36 |
My Brother.Ahhhhhhhh! |
Zoë Naseef |
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157 |
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PART 4: Diagnosed on the Spectrum |
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161 |
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37 |
No! You Don't Understand |
Beth Adler |
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162 |
38 |
It Never Rains. |
Simon Brodie |
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166 |
39 |
.It Pours |
Sarah Brodie |
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170 |
40 |
Melt(d)ing Down |
Rauidhri Finn |
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174 |
41 |
Relativity |
Auriela van Hulsteyn (Finn's spouse) |
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177 |
42 |
Essay on Autism |
Heidi Kunisch |
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179 |
43 |
The Way We Think |
Roger N. Meyer |
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184 |
44 |
The Chains of Friendship: An Autistic Person's Perspective
on |
Alex Mont |
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188 |
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Interpersonal Relationships |
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45 |
Jordan's Gift |
Todd Schmidt |
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193 |
46 |
The Importance of Parents in the Success of People with |
Stephen Shore |
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198 |
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Autism |
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47 |
Culture, Conditions and Personhood: A Response to the |
Donna Williams |
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203 |
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Cure Debate on Autism |
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Part 5: Working on the Spectrum |
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207 |
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48 |
A Sound from Kuwait |
Samira Al-Saad |
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209 |
49 |
Learning from Oliver |
Margaret Anderson |
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213 |
50 |
Closet Case: Finding the Way Out |
Cindy N. Ariel |
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217 |
51 |
The Wizard of Echolalia |
Gerard Costa |
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221 |
52 |
Two Autistic Children - A World of Difference |
Pim Donkersloot (translated by Jill Adler-Donkersloot) |
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225 |
53 |
Life as a Cooking Pot |
Anne Marie Gallagher |
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230 |
54 |
Moving to the Heart of the Matter |
Gayle Gates |
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235 |
55 |
Circle of Devotion |
Trish Miron |
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239 |
56 |
Playing with Hudson |
Eric R. Mitchell |
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243 |
57 |
The Path of Acceptance for Families |
Robert Naseef |
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247 |
58 |
The Challenges of Autism: An Introspection |
Bertram Ruttenberg |
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251 |
59 |
No Looking Back |
Fiona Scott |
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254 |
60 |
Spiderman at Mini-Camp |
Lillilan N. Stiegler |
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258 |
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Appendix: Further Reading and Internet Resources |
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262 |
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About the editors |
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266 |
From the Introduction: Learning from Autism by
the Editors
Is a diagnosis on the autism spectrum a puzzle
to be solved, or is the child with the diagnosis someone to
be embraced and accepted just as she is? As the editors of this
collection, drawing upon our professional and personal experiences,
we firmly believe that both are essential—with many lessons
to be learned…
…The essays in this collection tell of the
trials, the heartaches, and the emotionally charged path that
individuals and families must travel in order to find peace
of mind and joy in life as they grow and develop. The experiences
and insights that you will read will make you laugh, make you
cry, and help you to reflect upon your own experiences. Whether
you are a family member, a person with autism, or someone who
works along the spectrum of autism, we hope and trust that these
voices will provide beacons of hope and positive models of acceptance
and understanding.
From “Jenius” by Nayma Glenn
In third grade, my son James’s teacher gave
him a hat with a “J” for James, but also for Jenius
because of his many interests, questions, theories, and problem
solving skills. The word struck me, genius with a “J”—that
is Asperger’s syndrome…
In researching Asperger’s and autism the odd behaviors
of my children began to sift somewhere in my subconscious. Slowly
the knowledge percolated to the surface that I was affected
as well. When that piece fell into place, I could look back
over my life experiences with an understanding I’d never
had before. It was incredible, and for many months incredibly
depressing. It’s one thing to be eccentric and quirky.
It is a world away to have a permanent neurological disorder.
It’s better now. I’ve always loved
being different even though I never really understood why I
was so different. Why people often gave me funny looks after
I spoke as if I had said something so bizarre or so profound
it defied comment. Why as a child I would be so lonely most
of the time I could only lay in my room and cry. Why I understood
so much but often could not make myself understood. Why and
why and why fell into place. I have no idea what “normal”
looks or feels like. I will never know; it’s not built
into my wiring…
From “Truth: The Parents’ Spectrum”
by John Nelson
The truth is, hope is the greatest victim of autism;
the truth is, hope is the most critical element in fighting
autism…
The truth is, autism is a curse that forges a
tempest of challenges for your child, steals a mountain of resources
from your family, and drains a torrent of emotional blood from
your soul; the truth is, autism is a blessing that prevent you
from even taking your child’s laugh, embrace, or verbalization
for granted…
The truth is, there are thousands of experts in
the world that know more about autism than you do; the truth
is, there is no expert in the world that knows more about your
child’s autism than you do…
From “The Challenges of Autism: An Introspection”
by Robert A. Naseef
“Accepting that my son’s condition
would be enduring was imponderable. Nonetheless I learned the
developmental approach of celebrating what he could do. This
made a huge difference in our relationship. He became a happy
child, and I learned to enjoy him and accept him as he was.
But the autism which I hated with a vengeance refused to go
away…It doesn’t help to pretend to be positive when
underneath you may be lonely, afraid, or sad. I learned we don’t
have to lie to ourselves. You can grieve. You can complain.
You can mourn. This helps you go on, make the best of the situation,
and enjoy life…”
"Voices from the Spectrum is a symphony of rich density…
At times easy to read and at times the kind of reading that leaves
lumps in the throat and thuds in the heart, [it] is always honest
and genuine. I whole-heartedly recommend it."
Liane Holliday Willey, Ed.D., author of Pretending
to be Normal
and Asperger Syndrome in the Family
"…a masterful collection of essays…it is uniformly
poignant, often brutally honest and always uplifting…the first
comprehensive collection of personal experiences that encompasses
the tragedy, the mystery and the gifts of autism."
Lawrence W. Brown, MD, Associate Professor of Neurology
and Pediatrics,
The Children’s Hospital of Philadelphia
"…a gem of a book… These carefully edited essays
present a rich portrait of families as they come to grips with the
vicissitudes of autism. They reflect a kaleidoscope of perspectives,
emotions and coping mechanisms that will help readers sort out their
path as they come to grips with the challenges of this disorder."
Milton Seligman, Ph.D., Professor Emeritus, University
of Pittsburgh,
Co-author of the forthcoming third edition of Ordinary Families,
Special Children
"Cindy Ariel and Robert Naseef have put together a unique
collection of first-hand accounts of the autistic spectrum, providing
a voice for parents, grandparents, and siblings, as well as people
with Asperger’s Syndrome. These voices complement the professional
perspective and teach us how autism feels to each of these observers.
A rare anthology."
Simon Baron-Cohen, Professor, Autism Research Centre,
Cambridge, UK
"This book gave me the unique experience of seeing ‘behind
the scenes’ with a view of the impact on families of the diagnosis,
treatment and interactions with treating professionals. I recommend
that you put this book on your list of required reading for family,
friends, colleagues and trainees to improve care of children and
families with autistic spectrum disorder."
Susan E. Levy, M.D., Director, Regional Autism Center,
The Children’s Seashore House of The Children’s Hospital
of Philadelphia
"Voices from the Spectrum is a beautiful collection
of personal essays. A must read for any parent struggling to accept
and embrace the diagnosis. This book gives you a rare and heartfelt
glimpse of personal journeys of parents, grandparents, siblings,
professionals, and adults affected by autism who have found peace
of mind, joy in their life, and tremendous personal growth in the
process."
Nancy D. Wiseman, Founder and President, First Signs,
Inc. and author
of Could It Be Autism? A Parent’s Guide to the First Signs
and Next Steps
Email your review to reviews@disabilitiesbooks.com
Cindy A. Ariel, Ph.D., a licensed psychologist, has
worked with individuals with disabilities in various settings for
over 25 years. Dr. Ariel is a co-founder and director of Alternative
Choices, an independent psychotherapy practice in Philadelphia,
Pennsylvania, which includes a Special Families Resource Center.
Her current psychotherapy practice includes individuals, couples,
and other family members who are living with a loved one who has
special needs. As a child, she had various sensitivities and differences
which led her to develop a deep empathy with others. In her essay
“Closet Case: Finding the Way Out,” she tells about
her struggles and how it helps her empathize with the children and
families she serves.
Robert A. Naseef, Ph.D., has practiced for over 15 years as a licensed
psychologist and as a consultant to numerous schools and human service
organizations. A co-founder of Alternative Choices, he specializes
in families of children with disabilities. He has lectured internationally
and made numerous appearances on radio and television. Dr. Naseef
is the author of Special Children, Challenged Parents: The Struggles
and Rewards of Parenting a Child with a Disability (Brookes Publishing,
2001). His essay “The Path of Acceptance for Families”
tells how he learned to accept his son’s autism and how he
helps other families do the same.
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