- WHY is postmortem brain tissue donation important for autism research?
Although there is substantial evidence from neuroimaging studies that the brain of a child with autism spectrum disorder is undergoing abnormal development, little is known about the biology that leads to the onset of autistic symptoms. Autism Spectrum Disorder is undoubtedly a neurological disorder. But, the alterations in brain structure and function that account for this abnormal lifelong developmental trajectory are currently unknown. Understanding this will have important implications for developing strategies for prevention and effective treatment.
Similarly, recent genetic studies in postmortem brain tissue shows significant alterations in gene expression in the autistic brain. A critical aspect of this research is that many of the genes that appear to be dysregulated are not expressed in the blood or other body organs – they must be studied in the brain! The only way to answer questions related to the fundamental genetic and neuropathological aspects of autism spectrum disorder is to study brain tissue from individuals with autism at the cellular and molecular level.
The lack of appropriate postmortem brain tissue for pursuing autism research has become a crisis. Research fundamental to understanding the causes of autism spectrum disorder and designing effective treatments is stymied due to the limited availability and quality of such tissue.
- WHO can become a brain tissue donor for the benefit of autism research?
At this time, Autism BrainNet encourages tissue donation from anyone with a diagnosis of autism spectrum disorder. This would include individuals who are affected by other genetic disorders, such as Fragile X syndrome or tuberous sclerosis, or other medical disorders, such as epilepsy. While the focus of brain research is the child or adult with an autism spectrum disorder, a little known fact is that it is essential for researchers to have a ‘control match’ for each of our donors with autism. Thus, we require donations from people who are unaffected by autism (“typical” donors) as well. Donations from unaffected donors from 2-50 years of age are currently being accepted by Autism BrainNet.
- WHAT should I do when a death has occurred?
Call us. Brain tissue recovery is coordinated nationally by Autism BrainNet. In the event of a death, contact us as soon as possible at our 24-hour hotline number: 1-877-333-0999 for immediate assistance.
Get help. Let your health care provider, medical examiner or nurse know that you wish to take part in the Autism BrainNet brain donation program.
We’ll help. When you call, the Autism BrainNet staff will walk you through the donation process. We will also follow up after the donation occurs to schedule a visit with the donor’s family. The purpose of this visit is to collect essential documentation about the donor and to learn more about the donor’s background.
Even if you haven’t pre-registered, donation can still be arranged with this phone call. The Autism BrainNet will assume all costs related to tissue recovery.
- HOW can I support the Autism BrainNet and this important research?
You can contribute to ongoing and future research by signing up. The main goal of registration is to allow ongoing communication about Autism BrainNet. Unlike organ donor programs, registration is not a consent to donate. There is absolutely no obligation to make a donation.
All registrants will receive a free information packet from Autism BrainNet, which details the importance of postmortem brain tissue research, along with materials that can be shared with family and friends.
We know that the decision even to consider becoming a donor can raise profound questions. We urge you to talk with your family, clergy and physician or contact us at any time.
"Autism is happening at a rate that is disproportionate to other disorders. Making a donation for research purposes just seemed like the right thing to do."
-, mother of a brain tissue donor