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Adults with autism or spectrum disorders
have been registering to donate brain tissue to the Autism Tissue
Program since 1998. Also, adults with no known disorders have offered
the gift of their brain tissue for future controlled research studies.
In this article, three adults share their (unedited) thoughts about
becoming a brain tissue donor with the Autism Tissue Program coordinator,
Jane Pickett. ASA Advocate, July-August 2000
Jean-Paul Bovee lives in Kansas City, MO, and has autism. An article
by Jean-Paul appeared in the last issue of the Advocate.
I was diagnosed in 1972 at age 3 and a half with Early Infantile
Autism and Childhood Schizophrenia and again at age 6 with Autism.
Mom was told on my second diagnosis that there was no hope for me
to do anything. Well, they were wrong. I was in the public schools
all the way through my schooling. I was pulled from class to go
to Speech Therapy an hour a day and to get help for learning disabilities
for another hour of the day. My first Masters was in Medieval History
at the University of Kansas and it was an M.A. I got that in 1992.
My second Masters was an M.A. in Library and Informational Science
from the University of Missouri-Columbia in 1994. Since then, I
have been the Manager of the Missouri Developmental Disabilities
Resource Center at the University of Missouri-Kansas City Institute
for Human Development, University Affiliated Program for Persons
with Developmental Disabilities.
I believe that more can be understood about autism
studying my brain after I die. The aim should be to understand autism
and to know how people with autism do things, not to cure or penalize
them. Having autism is not a bad thing - research is to understand
autism.
Some of us have severe and very difficult problems and it is important
to know the
cause. I like who I am but it is not easy to live with autism.
I am glad to be signed up for the brain research.
I will not need my brain after I am dead. It may as well be used
to help know more about autism.
Registrations from adults with autism
or related disorders are gratefully accepted. It is important that
their next-of-kin, most likely a parent or sibling, know of their
involvement in the program to ensure their intention to donate is
understood and fulfilled. Please call if you have questions concerning
who functions as next-of-kin or about brain tissue donation in general:
24-hour toll-free 1-877-333-0999 or email questions from this website.
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Michelle lives in Baltimore, MD. She is a behavior specialist in
the Howard County Public Schools in Maryland and volunteers her
time providing respite care.
As an undergrad my experience with people with autism was somewhat
limited. Then, I moved to Maryland to pursue my Master’s degree
in 1996. I needed a job that left my evenings free to attend classes
and to study so I found a position as a paid helper working with
an 8th grader with autism. This proved to be one of the most rewarding
experiences of my life. As I watched this child learn new skills
and make friends, I realized what I hoped to do with the rest of
my life.
Joining ASA has been beneficial to me both personally
and professionally. I enjoy reading the newsletter and have tried
to attend any conferences that fit into my budget. I have found
them to be extremely informative. In fact, my first exposure to
neurological research with respect to the etiology of autism was
at one of these conferences. Presenters stressed the importance
of identifying neurobiological markers of autism for use in finding
therapeutic pharmacological strategies to treat autism spectrum
disorders. This is a line of research which I find to be quite compelling.
I believe that any information learned from neurological
research projects can only provide choices to individuals with autism
spectrum disorders. I am very intrigued by research, but I have
not had the opportunity to become very involved in that end of things.
My gift to the Autism Tissue Program is my way of having some involvement
in research. Thank you so much for this wonderful opportunity.
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