“Profound” Autism

On Tuesday, the journal Lancet published a 2+ year long endeavor around understanding the heterogeneity of autism not just in features but in access to services for individuals and families across the world. They called for a stepped care to help individualize and prioritize needs in different individuals based on their needs, not their diagnosis. They also called for the label of “profound autism” which describes individuals with very different outcomes compared to those who have a higher verbal and cognitive ability. Recognizing everyone needs supports and help, the “profound autism” label needs different supports, like different employment situations and different living accommodations. Thankfully, to authors, Dr. Catherine Lord from UCLA and Alison Singer from ASF explain the article and the impact they hope it makes on the field.

The article is open access but you have to register to download a copy, here: https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(21)01541-5/fulltext

The triple crown of autism research gatherings

Three important meetings of researchers took place this week.  First, the Interagency Autism Coordinating Committee, or IACC, met for the first time in over a year to discuss the coordination of private and federal efforts in autism research and advocacy.  Also, the Autism Sisters Project science committee met to figure out how they are going to find the female protective factor in autism, and what else the study can do when, and if, it is found.  Finally, a group of researchers who study autism in high risk families, before a formal diagnosis can be made, met to understand how the brains of people with autism are connected.  They also are working on new instruments to better diagnose both males and females with ASD.  Finally, in a press release from Tuesday, the NIH announced a partnership that will substantially improve autism research.  november17