POSITION STATEMENT ON GENETIC DISCOVERIES IN AUTISM
The autistic community and society in general have become
increasingly aware of eugenics movements (efforts to improve human
qualities by selection of certain traits) in medical history in the U.S.
and abroad and the traditional desire of parents to create perfect,
healthy children. Along with other persons affected by genetic
disabilities, we are not only concerned as to how our health needs will be
met under dramatically changing health care systems, but how the use of
genetic technologies will affect our quality of life, medically, as well
as socially. What will be the impact of the identification of the genes
causing autism, not only on our personal lives and our needs, but on how
society views us as individuals?
Thus far, several genome scans for autism have been performed and
there is increasing evidence for a gene contributing to the development of
autism on the long arm of chromosome 7. Evidence for the localization of
other genes contributing to the development of autism also exists. At
this time, it is not known what these genes are or what function they have
but given the pace of genetic research, these things may be known within a
few years. It is unlikely that a gene will be found that can predict
whether or not someone will be autistic in the same way an extra
chromosome 21 predicts someone will have Down Syndrome. However, it may
be possible to determine of someone has an increased likelihood of being
autistic based on their genetic profile.
The history of genetic technologies and Down Syndrome is
instructive. Despite the improving quality of life of people with Down
Syndrome due to improvements in education, deinstitutionalization,
improved treatment of the medical complications of Down Syndrome, there is
an increasing push to diagnose and terminate pregnancies with Down
Syndrome fetuses. This push appears to be related more to improvements in
technologies to prenatally detect Down Syndrome (amniocentesis, chorionic
villus biopsy, the "triple-screen") rather than the changes in the quality
of life of people with Down Syndrome. When success is measured by the
reduction in the number of people with Down Syndrome that are born, then
it is clear that it is not the interests of the disabled individuals that
are being considered. This should not be occurring for Down Syndrome and
it should not occur for autism.
The common thread throughout the discussions of genetic
disabilities is that we as disabled individuals are important members of
society who must inform the world that, though we face challenges, most of
them are related to the physical environment and societal attitudes about
our disability and not due to the inherent qualities of our disabilities.
We value the opportunity to contribute a unique perspective to the
diversity of our society.
We have been educating society and the medical community about the
truths of life with autism and working to dispel commonly held myths. With
the impending discovery of various genes contributing to the development
of autism, our educational and advocacy efforts have become ever more
important, in the face of a rapidly changing genetic frontier.
This statement was adapted from the Little
People of America position paper on genetics and dwarfism. Many
thanks to the authors of this position paper.
Judy Badner
Clay Adams
Sallie Anderson
David N. Andrews BA(Invis), AEPiT; Applied Educational Psychologist
Larry Arnold
Constance Baker
Manolo Batres
Lisa A.R. Browski
Erron Z. L. Callahan
James Childress
Camille Clark
Patty Clark
T.A. Coons
Mark A. Craig
Bobby L. Dowling
Carol Nettleship Dyas
Anne Easton
Sharon Fennell
Sue Golubock
William G. Hartwell
Aaron Hosford
connie hudson
Shannon Hunt, mom of Noah, AS age 7 and Joshua, ASD age 2
Ian Johnson, J.D., M.S., M.A.
Merrill K - Asperger's Family Forum
Frank Klein
James Kulmacz
M. A. LaBombard
Tony Langdon
Judith (Tink) and Ben Lecuyer
David K. March
Tara J. Marshall
Keith and Melinda Napoletano
John Gary Nettles, IV
John Gary Nettles, V
Mairead Johanna Nettles
Shari Marie Nettles
Jerry Newport
janet norman-bain
Sharne O'Flaherty
Elizabeth Ramos
Geraldine Robertson
Marie Rusk
Katherine Ann Roe Sainz
Phil Schwarz
Hajo Seng
Suzanne Shaw
Heather Spears, BS, SLP/SLD, mother of David, who has Asperger's
Syndrome
Jessica Thomsen
Kimberly Tucker
Kathleen Vanderhoofven
Lindsay Weekes
Gail Gillingham Wylie
LDYoung
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Other statements on genetics and disability:
National Down Syndrome Congress
Canadian Down Syndrome Society