Director’s message: December 2021

There are a number of exciting research and policy initiatives happening in the world of autism.

One initiative that was several years in the making was the publication of “The Lancet Commission on the future of care and clinical research in autism¹.”

This 64-page document has far too much content to try and summarize here. But there are many suggestions about how research can be focused more quickly on improving the lives of individuals and families affected by autism.

A long overdue suggestion is the endorsement of the term “profound autism” for “children and adults with autism who have, or are likely to have as adults, the following functional needs: requiring 24 h access to an adult who can care for them if concerns arise, being unable to be left completely alone in a residence, and not being able to take care of basic daily adaptive needs. In most cases, these needs will be associated with a substantial intellectual disability (e.g., an intelligence quotient below 50), very limited language (e.g., limited ability to communicate to a stranger using comprehensible sentences), or both.” Individuals with profound autism have largely been shut out of research and this document calls for a change.

Another exciting initiative central to Autism BrainNet is the request for applications (RFA) from the Simons Foundation Autism Research Initiative (SFARI) which will fund studies that use postmortem brain tissue from the Autism BrainNet collection. While additional postmortem brain donations are critically needed, the funding of new research based on tissue in the Autism BrainNet repository will add impetus to an essential area of research that has been underfunded by other agencies. The RFA has generated enormous enthusiasm and we will be presenting a summary of the funded projects and then ultimately the new findings in future newsletters.

As we approach the end of 2021, I would like to first thank the donor families who have made the selfless decision to foster autism research through the donation of the brain of a family member. The impact of these acts is incalculable and hopefully leads to strategies that will improve the lives of the millions of autistic individuals worldwide.

I am also thankful for the dedicated Autism BrainNet team who makes brain donations as effortless as possible for donor families and then carefully preserves the tissue for future research. We also appreciate the network of medical examiners, coroners, tissue banks and others who have contributed to the Autism BrainNet mission.

To all, I wish a very joyous holiday season and New Year with those dearest to you.

David G. Amaral, Ph.D.
Scientific Director, Autism BrainNet