About 4,000 people have signed up to for the Autism Tissue Program since it began in 1998. Here's how it works:
When an autistic person dies, the family phones the program's toll free number and is connected to a network of brain banks. Bank staff arrange for local pathologists and funeral homes to recover the brain, and those costs are paid by the project. Open casket services are still possible.
Project staff later interview family members of the autistic person, preferably parents because of their memories of their child's early years. More than 100 questions are asked in a standard survey used to diagnose autism. That is one piece of what quickly turns into a "mountain of paper and reports," as project director Jane Pickett put it.
"Usually that kind of extensive documentation hasn't been done," she said. "We get all the records possible for the investigators, so they really have a good idea of the characteristics of the donor, medical history, seizure history, medication history, immunization history, all the school testing."
The brain is preserved and tissue samples are processed in different ways, depending in part on how much time has passed since death. Samples are doled out to scientists, who submit research proposals to the tissue project for careful review.
"We have supplied tissue now to 30 projects of researchers around the world," Pickett said. The samples are identified by bank numbers, not family names.
Although the tissues have come from toddlers to the middle-aged and from people with varying degrees of autism, scientists have already found structural and cerebellar and cortical and microscopic alterations in the brains that are fairly consistent. They also noted, as a recent study pointed out in the Journal of the American Medical Association, that in general the autistic brain is rather large.
Innovative techniques allow DNA to be extracted from individual brain cells and studied to see which genes were active, Pickett said.
"We're pretty much connected with all the high-tech sophisticated protocols out there, and try to be," she said. "We really mean to do the absolute best research possible, [because] people's families put a lot of trust in us."
For more information about the Autism Tissue Project, go to memoriesofhope.org or call, toll free, 1-877-333-0999.
Anita Srikameswaran can be reached at anitas@post-gazette.com or 412-263-3858.
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