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.

Summary

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.

 

Table of Content

Introduction, Learning from Autism     12
         
Part 1: Raising a Child on the Autism Spectrum   15  
1 The Ride for Autism: A Community Gets in Gear to Help Solve the Puzzle Andrew Abere   17
2 The Tree's On Fire: Voicing Experience Marc Biondo   21
3 Perspectives Maribel Danta   25
4 Facing the Pain of Autism--and Surviving Nicholas Dixon   29
5 Happy Days with my Daughter Sheryle Dixon   33
6 Through the Looking Glass Phil Dougherty   36
7 My Will Margaret Janger Flynn   40
8 Jenius Nayma Glenn   45
9 School Days Heidi J. Graff   49
10 You Never Know Nancy E. Ironside   53
11 Talk to Me, My Darling Rosemary Johann-Liang   56
12 Our Lives at the Edge of the Spectrum Elizabeth Lipp   60
13 Pulling String Irene Litherland   64
14 Still the Same Boy! Mary Marmion   68
15 Stump the Cook Lauren Goldman Marshall   73
16 Taking the Bag Off Shelley Milhous   78
17 Truth: The Parents' Spectrum John Nelson   82
18 Listening to Macord Eric Peter   87
19 Parallel Worlds Antonia Rowland   92
20 The Question Shelley Stolaroff Segal   96
21 Simply Perfect Tanya Stanley   99
22 On the Wings of Asperger's Carol Anne Swett   103
23 Learning to Embrace the `A' Word Elaine Tarutis   107
24 On Eating Biscuits: Life with Autism, Eileen Teyssou   112
25 Katie's Question Lauren Yaffe   116
         
PART 2: The Grandparents' Connection   119  
26 Barefooted Band-Aid Boy Patricia E. Gardocki   121
27 Lap Time Dan Gottlieb   124
28 An Unexpected Gift of Love Oscar and Sally Olson   128
29 A Grandmother's Story Elizabeth Nedler   132
30 Come with Me, Grandma Frances S. Rosenfield   136
         
The Sibling Experience   139  
31 An Unexpected Blessing, Kimberly M. Bittner   140
32 Growing Up with Bradley Stephanie Coyle   148
33 Living Life Katherine Flaschen   148
34 Their Sound has Gone Out Susan Ironside   152
35 Why Am I So Resentful? Lydia Liang   155
36 My Brother.Ahhhhhhhh! Zoë Naseef   157
         
PART 4: Diagnosed on the Spectrum   161  
37 No! You Don't Understand Beth Adler   162
38 It Never Rains. Simon Brodie   166
39 .It Pours Sarah Brodie   170
40 Melt(d)ing Down Rauidhri Finn   174
41 Relativity Auriela van Hulsteyn (Finn's spouse)   177
42 Essay on Autism Heidi Kunisch   179
43 The Way We Think Roger N. Meyer   184
44 The Chains of Friendship: An Autistic Person's Perspective on Alex Mont   188
  Interpersonal Relationships      
45 Jordan's Gift Todd Schmidt   193
46 The Importance of Parents in the Success of People with Stephen Shore   198
  Autism      
47 Culture, Conditions and Personhood: A Response to the Donna Williams   203
  Cure Debate on Autism      
         
Part 5: Working on the Spectrum   207  
48 A Sound from Kuwait Samira Al-Saad   209
49 Learning from Oliver Margaret Anderson   213
50 Closet Case: Finding the Way Out Cindy N. Ariel   217
51 The Wizard of Echolalia Gerard Costa   221
52 Two Autistic Children - A World of Difference Pim Donkersloot (translated by Jill Adler-Donkersloot)   225
53 Life as a Cooking Pot Anne Marie Gallagher   230
54 Moving to the Heart of the Matter Gayle Gates   235
55 Circle of Devotion Trish Miron   239
56 Playing with Hudson Eric R. Mitchell   243
57 The Path of Acceptance for Families Robert Naseef   247
58 The Challenges of Autism: An Introspection Bertram Ruttenberg   251
59 No Looking Back Fiona Scott   254
60 Spiderman at Mini-Camp Lillilan N. Stiegler   258
  Appendix: Further Reading and Internet Resources     262
  About the editors     266

 

 

Excerpts

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…”


Published Reviews

"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

 

Reader Reviews

Email your review to reviews@disabilitiesbooks.com

Meet The Author

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.