March 7, 2005

Dear Chairman Wright:

We are representatives of seven Autism organizations who have watched NBC's recent intensive coverage of Autism with interest and, especially, with appreciation of the improved public awareness resulting from your energy and dedication.  Your coverage of the costs, the confusing array of available therapies, and the nightmare of existing service issues provided a firm ground for your viewers' exploration of our world.  We hope that such efforts will benefit your grandchild and everyone on the Autism Spectrum, helping them receive the interventions, services, and public understanding they require and deserve.

We would like to see more attention given to issues affecting children and adults at all levels of the Autism Spectrum, as no one can currently predict any child's ultimate level of performance based on early childhood function.  On the higher-functioning end (including Asperger Syndrome) problems may be quite different, but just as frustrating.  The remarkable potential of some individuals with Aspergers was highlighted, but that potential represents possibility and not the overall reality of the many difficulties these adults face.  Your broadcasts featured individuals like Temple Grandin and Vernon Smith who have found a working environment amenable to their behavioral differences as well as to their special gifts, but such individuals are not typical of the population of adults with Aspergers.  Most endure inadequate environments, have difficulty maintaining employment, and are frustrated by their inability to make friends or establish intimate relationships.  Most are misunderstood, feel unwanted, victimized, and perceived as "losers."  It's important for people to see the positive role models, and to NBC's credit, you showed them, but we need this other side shown as well for context.

Some of us have expressed difficulty with the word "cure," which implies that there is something that can be cured.  This is hurtful to many on the Spectrum who, coming to terms with their situation, have struggled toward a functioning existence. The millions of Autism Spectrum individuals who are living now are looking for acceptance with medical, emotional, and social support, in return for which society can benefit from the fruits of their special abilities.  For Autism, a genetic condition in all its forms, there is no cure, but it is susceptible to significant improvement, especially with early diagnosis and intervention.  The hope for "cure," in the sense of the best possible improved level of function, is an important consideration, especially for those most severely affected and their concerned families.

We expect "Autism Speaks" to take a major role in promoting research and generating support, working with other national groups as the Autism Society of America, MAAP Services for Autism, GRASP, and Asperger Foundation International.  We offer our experience.  We can help direct you toward sound programs and away from dead-end research and dubious therapy promoted by the misinformed, not to mention the fraudulent, who are quick to take advantage of a desperate population.  We would like to meet with you to discuss these issues as soon as possible.  Please let us know.

We wish you the best of success and look forward to the happy results of our collective activity.


Electronically signed (alphabetically) by

Michael John Carley
Executive Director
GRASP, the Global and Regional Asperger Syndrome Partnership, Inc.
The largest organization in the world of adults diagnosed on the Autism Spectrum.

Lynda Geller, Ph.D.
Executive Director
Asperger Foundation International
A new foundation funding and disseminating evidence-based research that identifies causes, effective interventions, and supports for individuals with Asperger Syndrome.

Valerie Paradiz, Ph.D.
Program Director
The School for Autistic Strength Purpose and Independence in Education (ASPIE)
A revolutionary school for kids diagnosed on the Autism Spectrum.

Lois Rosenwald
The Connecticut Autism Spectrum Resource Center
Connecticut's largest parents and professionals organization.

Pat Schissel
AHA/AS/PDD (Advocates for Individuals with High Functioning Autism, Asperger's Syndrome and other Pervasive Developmental Disorders)
A large Long Island based parent and professional organization providing support and information for families, individuals and professionals affected by Autism Spectrum Disorders.

Lori Shery
President and Co-Founder
ASPEN (Asperger Syndrome Education Network)
A parent and professional organization based in NJ providing information, support and advocacy for individuals and families whose lives are affected by Autism Spectrum Disorders.

Liane Holliday Willey, Ed.D.
Founding Board Member
Asperger Society of Michigan
A parents and professionals organization committed to expanding opportunities and support for children and adults with Asperger Syndrome within and beyond the borders of Michigan.


"We each have our own way of living in the world, together we are like a symphony.
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It all blends together, we are like a symphony, and each part is crucial.
We all contribute to the song of life."
...Sondra Williams

We might not always agree; but TOGETHER we will make a difference.


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