Last late fall, I attended the Oakland County chapter meeting at the Bloomfield Library where Carolyn Gammicca and Dr. Pickett spoke regarding the Autism Tissue Project. I listened to the ATP presentation, in which they mentioned that the program sought not only brain tissue from persons with autism, but also neurotypical family members. I picked up a registration form and stuck it in my briefcase, where it sat untouched until the bomb hit me.
The bomb fell on December 12, 2002. My younger brother died suddenly in Reno, Nevada. Scott had no wife or children, so my parents were his legal next of kin. As such, they not only had to deal with the grief of the sudden loss of their youngest child, they had the added burden of making many important decisions with little time for consideration and reflection.
While I was making arrangements to fly to Reno to bring Scott back, I recalled the ATP presentation, and that if a tissue donation is to be made, the brain tissue has to be taken very soon after death. I decided that an ATP donation could bring some good out of my family’s tragedy. I called Dr. Pickett to learn the mechanics of a donation. Although my parents were enduring their grief and the burden of funeral arrangements, I imposed upon them with the idea of an ATP donation from Scott. I made a conference call from my office in Flint to them in Traverse City and Dr. Pickett in Princeton. She explained to them the process, and despite being overwhelmed with everything else, they agreed to let the medical examiner in Reno proceed with a tissue harvest. Although we buried Scott in our hometown of Flushing, part of him is at Harvard, and hopefully will add to our knowledge of autism.
Having been through the experience, I have a few thoughts that may benefit other families that follow. First, give some thought now regarding whether, when the time comes (and it will come sooner or later for all of us), you wish to donate your own brain or that of a family member to this project. The thought of brain donation can be an uncomfortable one, and a decision should be made in a calm, rational atmosphere. When a death occurs, you or your next of kin will already necessarily have a huge number of important decisions to make in a very short time when the decision-making process is overwhelmed. If you wish to participate, fill out the registration form now and send it in; don’t do what I did and have to make this decision when your hands are already full. Second, keep in mind that an adult’s body only belongs to that person as long as that person is alive. Under current Michigan law, once that person dies, that person has no control over what happens to their body, including their brain. As odd as it may sound, you can write a binding will disposing of everything you own, but you can’t leave directions regarding the disposition of your body that everyone must follow. Once one dies, one no longer belongs to oneself, one belongs to one’s next of kin. The moral of the story is, discuss now with your next of kin what arrangements you wish for funeral arrangements in general and organ and ATP donations in particular. In the presence of others you trust, get the commitment of your next of kin to follow your wishes, and put them in writing so no one can question them after you’re gone.
Death is a tragedy, but organ donation and ATP participation allow us the comfort of knowing that the loss of a loved one is tempered by a gift to others.
President, Autism Society of Michigan