Posted on

What do Profound Autism Caregivers Need?

Podcast: Play in new window | Download

Subscribe: RSS

In part 1 of a 3 part series on Profound Autism, ASF interviews Emily Ferguson, PhD from @Stanford shares what she learned by asking parents and caregivers of Profound Autism “what do you need?” The short answer was: “There is No Help“. The responses were overwhelmingly focused on inclusion in any program or service, since they are normally excluded from traditional programs. They also call for better multidisciplinary medical management. Needs were associated with a number of factors. Why talk to caregivers? Their perspectives help identify both research and service priorities in the future.

https://pubmed.ncbi.nlm.nih.gov/38963473

Posted on

Advice for better understanding underrepresented groups in autism research

Podcast: Play in new window | Download

Subscribe: RSS

This week, we talk to Karla Rivera-Figueroa and Inge-Marie Eigsti, who together with Nana Yaa A. Marfo published a systematic review asking about parental perceptions of autism in both LatinX and Black Sociocultural contexts. Six themes popped out, and the question for Karla and Dr Eigsti were “how can research help”? What funding opportunities, culturally relevant materials, and future research directions need to be focused on? The conversation included ways to battle stigma, improve provider relationships, recruit a more diverse sample in research and fund those underrepresented scientists who want to study autism. As a note, ASF will be releasing their undergraduate fellowship mechanism on Tuesday which will focus on underrepresented groups.

https://pubmed.ncbi.nlm.nih.gov/34979034/