By Erin Delmore
Alycia Halladay Ross saw the warning signs in her daughter Sarah — staring off into space, lining toys up in rows, isolating herself at playtime — even from twin sister Jennifer.
Sarah was diagnosed with autism — a developmental disorder that’s on the rise, affecting more American children than AIDS, diabetes and cancer combined.
Researchers want to know why. To do that, they need to study the human brain after death. And that’s in limited supply.
That’s why the Ross family has committed to donating Sarah’s.
“Of course you never want to think about or even think about anything happening to your child that could lead to them suffering or hurting or dying. And to think that it’s an eventuality in your lifetime is heartbreaking. It’s thinking about what someone’s death can mean to the lives of other people,” Alycia said.
The Ross family is registered as brain tissue donors through Autism BrainNet. It’s a network of research institutions in the U.S. and Britain that collect, store and allocate donated brain tissue samples. Researchers say the need is critical.
Fewer than 200 brains have been studied for autism research over the past three decades. That number pales in comparison with tens of thousands studied for Alzheimer’s disease.
Dr. Patrick Hof heads one of the four U.S.-based “nodes” of Autism BrainNet. He began his career studying Alzheimer’s.
“It’s only at the end that they have had a horrible disease. Patients with autism never had that chance. And families never really had that chance, either,” he said.
Autism BrainNet aims to educate people about brain tissue donation. Even if your driver’s license says “organ donor,” you’re not included. It takes a separate registration — non-binding — and doesn’t affect burial plans. And non-autistic people can donate too, as part of a “control group” for medical comparison.
That’s why Sarah’s twin, Jennifer, is registered as well.