Below are statements from donors, donor registrants, donor families and researchers concerning their view and personal experience with the importance of brain donation and their involvement with the ATP.

Public:

Jean-Paul Bovee lives in Kansas City, MO, and has autism

“I was diagnosed in 1972 at age 3 1/2 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.

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 that 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.

Researcher:

David Amaral, Ph.D., Professor of Psychiatry and Research, Director of the MIND Institute at the University of California at Davis

“As essential step in understanding the causes of and best treatments for autism is to determine which parts of the brain are most impacted by the disorder.  Neuroscience has extraordinarily powerful tools for determining the neuropathology of autism.  Yet, without an adequate number of brains for analysis, this type of research will be stymied.  The Autism Tissue Program made our recent quantitative analysis of the amygdale possible.  For the first time, we had an adequate number of brains from individuals with autism without co-morbid epilepsy.  Our laboratory is enormously thankful to the families who made these donations and to the Autism Tissue Program for making this resource available for our research.”

Thomas Insel, M.D., Director of the National Institute of Mental Health

We know that autism is a brain disorder, but it has been difficult to pinpoint which brain connections are abnormal or how they become that way.  In other brain disorders, studying brain tissue permits scientists to identify what is abnormal.  To accelerate progress in autism research, we need brain tissue from adults and children diagnosed with this disorder.”

 
Nancy Minshew, M.D., Professor of Psychiatry and Neurology, University of Pittsburgh School of Medicine

Making it possible for scientists to study the brain and other organs of people with autism and their relatives is the best chance we have to find what causes autism.  There are so many studies that need to be done and so few donations.  The cure and prevention of autism will come from these discoveries.  There may be a cure and more definitive treatment in the lifetime of children alive now, but how soon it is found depends on how many people donate their brains for study after death.  My son died at 20 years of age in a car accident and he was an organ donor.  I know donation may be a difficult decision to make, but it was not difficult for us.  We always knew we wanted to help others if something happened to us.  I knew as he was dying that I wanted as many children to benefit from his death as possible and I knew he would want that too.  Please make the gift of life.  No one should suffer.”