AN OPEN
LETTER TO NBC CHAIRMAN BOB WRIGHT . .
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.
Sincerely,
Electronically signed (alphabetically) by
Michael John Carley
Executive Director
GRASP, the Global and Regional
Asperger Syndrome Partnership, Inc.
http://www.grasp.org
The largest organization in the
world of adults diagnosed on the Autism Spectrum.
Lynda Geller, Ph.D.
Executive Director
Asperger Foundation International
http://www.aspfi.org
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)
http://www.aspieschool.org
A revolutionary school for kids
diagnosed on the Autism Spectrum.
Lois Rosenwald
Co-Director
The Connecticut Autism Spectrum
Resource Center
http://www.ct-asrc.org/
Connecticut's largest parents and
professionals organization.
Pat Schissel
President
AHA/AS/PDD (Advocates for
Individuals with High Functioning Autism, Asperger's Syndrome and other
Pervasive Developmental Disorders)
http://www.aha-as-pdd.org
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)
http://www.aspennj.org
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
http://www.Aspergermichigan.com/about.php
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.
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Some
are the melody, some are the rhythm, some are the harmony