Survey shows gap in awareness of brain donation for autism research

A new survey by Autism BrainNet reveals strong public support for studying the autistic brain but low awareness of brain donation's role. While 92 percent of Americans view such research as very important, 70 percent have never heard of brain donation. The findings highlight confusion between brain and organ donation processes.

Autism BrainNet released survey results on April 10 showing a disconnect in American views on autism research. Conducted from February 26 to March 2 with 1,007 respondents, the poll found that 92 percent consider analyzing the autistic brain extremely or very important. However, only 30 percent were aware of brain donation, which requires a separate process from organ donation. More than 80 percent know about organ donation, with over half registered as donors, but just 15 percent realize brain donation is excluded from those registries. Fewer than half understood that donations must occur within hours after death, and nearly one-third wrongly believed conditions like autism or epilepsy disqualify donors. These brains are particularly valuable for research, David G. Amaral, Ph.D., Autism BrainNet's scientific director and UC Davis distinguished professor, told the organization. He emphasized that postmortem brain tissue is irreplaceable for studying autism and related conditions, unlike AI, imaging, or animal models. Autism BrainNet accepts donations from autistic individuals, those with related genetic diagnoses, and nonautistic people, ideally within 48 hours of death, at no cost to families and without affecting funerals. Kathy Stein, who donated her autistic brother Ed's brain, said, 'When he passed, I donated his brain because it is a positive way to acknowledge what a wonderful person he was and to extend his legacy.' To boost awareness, Autism BrainNet plans a Reddit 'Ask Me Anything' on April 29 from 12-2 p.m. ET, featuring Amaral and Alycia Halladay of the Autism Science Foundation.

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