What we learn from linking data

The NIH has launched the new Autism Data Science Initiative: https://dpcpsi.nih.gov/autism-data-science-initiative/funding-opportunities#section1, which brings questions about why linking different data sets is important. It can be done without including personal identifying information, and it should be done following ethical guidelines. If done correctly, using large datasets can answer questions relating to treatment, cause, better identification and personalized medicine for those on the spectrum. So what has linking data done for families? This week’s podcast summarizes longitudinal research that follows individuals across time, linking their information across different ages to look at factors that predict outcomes, environmental factors, and how to best support those on the spectrum.

https://pubmed.ncbi.nlm.nih.gov/40420626

https://bmcpsychology.biomedcentral.com/articles/10.1186/s40359-025-02739-4

https://pubmed.ncbi.nlm.nih.gov/40391067

https://pubmed.ncbi.nlm.nih.gov/40309015

https://pubmed.ncbi.nlm.nih.gov/40401338

Resources and Services for Adolescents and Young Adults

Thank you to Sonia Agarwal, smart, efficient and eloquent ASF summer intern for putting together a summary of resources and services and rights for adolescents and young adults with autism, focusing on those who are not intellectually disabled.  They include resources for transitioning into college and support programs at college, with tips and hints along the way.  Sonia has a younger brother with autism and is committed to helping families access the help they need.

Help for college students with autism

As college and university semesters come to a close, new research is determining the factors that lead to success in college for the individuals with autism but without intellectual disability. They include: help with time management, relationships (both peer and romantic), self-advocacy and organizational skills. Students, parents and educators agree on what is needed, but institutions are struggling to make sure they are available.