ARI eNewsletter June, 2007

Mary and David (names have been changed) awoke as they did every morning: to the sound of young children stirring earlier than they really would have liked. But today was different. Call it intuition, gut feeling, no matter, they just sensed that something was horribly amiss. They rushed to the bed of their 18-month-old-daughter, where the nightmare that would never end, suddenly began. She was blue and not breathing. They fought back instant grief as they held onto a tiny thread of hope. David grabbed their precious baby and placed her on the floor, attempting CPR while Mary screamed in panic at a 911 operator on the other end of the phone line. Within minutes an ambulance arrived and whisked their lifeless daughter off to the nearest hospital. By the time they arrived, it was all over; their tiny and precious child was gone. The grief was inconsolable. They were unable to function, to think, to act, to do anything at all besides collapse into utter despair.

Most of us can only imagine this unthinkable scenario, but this is a true story. Those who've experienced the loss of a child, or helped a family member or friend to deal with it, understand this is the worst possible moment to make moral, ethical, or altruistic decisions. It's troubling enough to contemplate the passing of our grandparents and parents, let alone one of our children. Many have suffered the loss of a brother or sister in young adulthood, or watched a loved one slowly die of a devastating disease, such as cancer. But nothing prepares us for the death of our own offspring. It is with solemn understanding of the gravity and discomfort of even thinking about or discussing this issue that ARI asks all families with loved ones with autism, to think about the unthinkable today.

We would love nothing more than to live in a world where children didn't die. But, most of us would also love to live in a world where children didn't have to suffer from autism. We all know too well that our reality is much different. It is even because of autism that many of our children are at a higher risk of serious illness, injury, and even death. So, it is with compassion and understanding that we ask you to sit down with your spouse, with your families and loved ones and have a serious discussion about what you might want to do if the unthinkable were to happen. What would you do in that situation if your mind was clear and free from grief? Would you want to take that horrendous moment and make something positive come from it? Many of us choose the "organ donor" option on our driver's license not realizing that if we don't share that with loved ones, they can override our choice upon our passing. It is critical that your wishes are known and understood by those around you, so they can help you when you need it most.

Partnering to Advance Autism Research
ARI recently began collaborating with the NICHD Brain and Tissue Bank for Developmental Disorders at the University of Maryland to focus attention on the collection of autism brain and systemic tissues. The NICHD Bank was established in 1991, by the National Institutes of Health to advance medical research by systematically collecting, storing and distributing brain and other tissues to medical researchers throughout the world. The NICHD Bank is the primary source of autism tissue for researchers. However, the interest in autism research is so great that they have not been able to fulfill all requests for tissue. It has become quite clear over the past five years that autism impacts the whole body, not just the brain. It is clear that the collection of tissue from many organ systems is crucial to the advancement of research into the causes of autism and will eventually help us develop more effective treatments. Our collaboration emphasizes that many of the unknowns of autism can only be discovered by studying the actual tissue from autistic individuals donated after their deaths. This is why it is so important that at a time of a family's loss they contact the NICHD Brain and Tissue Bank to consent to tissue donation that will leave a legacy of their loved one. Prompt action is vital since even a day's delay can make the tissue of limited value for research.

ARI is honored by the opportunity to work closely with the NICHD Bank and wants parents and families to know that we understand the gravity of this request. We know that you are asked daily to make decisions outside the realm of typical parenting. Most of you have had to search for a caring health care provider, make decisions about therapies and treatments, open your home to therapists or providers, deal with schools and special education programs, learn to deal with your child and their devastating condition, and through it all deal with everyday life. The importance of informing your family cannot be stressed enough: If you believe this is important, and feel it is critical to the mission of finding even more affective treatments for those living with autism, please schedule a time with your loved ones and sit down and discuss it. Share the contact information so that others can help you handle the details if needed.

To Learn More:
Call Melissa Larkins, project coordinator of the NICHD Bank at 1-800-847-1539 or 410-706-1755 or e-mail btbumab@umaryland.edu or visit their Web site at www.btbankfamily.org.

ARI thanks you for considering this project and we share with you the dream that someday none of us have to make decisions such as this.We share this heavy burden with our entire autism family, for all of our children and loved ones affected by autism.