Director’s message: September 2023

We hope you have had an enjoyable summer and are comfortably transitioning to school and Fall activities. Autism BrainNet staff have continued to be busy forming collaborations and acquiring new donations for the collection. Currently, there are 337 donations in the Autism BrainNet collection: 145 of these are from individuals who were autistic during life, 35 are from donors with a genetic condition related to autism and 127 are from non-autistic individuals. Because of the enormous heterogeneity in the causes and features of autism, brain donations continue to be needed to advance this research.

How can we further communicate and inspire families and autistic individuals to consider and plan for postmortem brain donation? We have decided to pose this question to the community through a series of new focus groups planned for the next six months. We also plan to reach out to autistic adults to hear their advice, questions, and concerns about brain donation. This may help us evolve our outreach efforts. For example, pre-registration is currently not required for brain donation with Autism BrainNet. But, in other neurological conditions such as Alzheimer’s disease, pre-registration has proven to be a very effective way not only to encourage postmortem donations but also to enrich the information on each donor. Perhaps it is time to consider and offer a similar type of pre-registration process to the community.

As always, we are available to answer any questions that you may have about postmortem brain donations. Much information is available on our website but if you need help finding the answer to your question, feel free to contact us at info@autismbrainent. The generosity of donors and their families is what makes it possible to generate important scientific breakthroughs about autism.