Director’s message: Time is of the essence

A founding principle of Autism BrainNet is that research using postmortem brain tissue can help understand the biological causes of autism spectrum disorder (ASD) and related neurodevelopmental conditions and identify targets for developing new and effective treatments. We have seen this before with diseases such as Alzheimer’s disease and Parkinson’s disease. Virtually all of the current and experimental treatments for these conditions are based on research on human brain tissue.

The Autism BrainNet team is very aware that thinking about donation generally comes at the worst possible time — when a loved one passes away. This is why our clinical team makes every effort to ensure that the process does not add additional stress to the family. But what may not be well known is that the organization of the brain begins to change soon after death, and these changes accelerate with time. It is thus optimal to receive the donation for research within 24 hours after death. Of course, even with longer delays, the donation is valuable for certain types of research, and we, therefore, rarely turn away a donation. 

Here are three practices a family can follow to optimize the value of a donation for research:

• Discuss the possibility of brain donation with your family. If you are an autistic individual, make it known that you want to donate your brain to research. If you are the caretakers of an autistic individual, discuss whether they are comfortable making a donation. The information on our website explains the brain donation process.
• Include information regarding donation in your advance care planning materials. In your medical directives, let it be known that you wish to be a brain donor to Autism BrainNet. For this purpose, Autism BrainNet’s Intent to Donate Form and Autism BrainNet Brain Donor Cards are available on our website or upon request ([email protected]). Making a brain donation does not involve any cost to the family. Brain donation does not interfere with autopsy and funeral arrangements.
• Call our 24/7 hotline as soon as possible.  If a death has occurred or is near, please call our 24/7 hotline as soon as possible. That number is 1-877-333-0999.