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What do Profound Autism Caregivers Need?

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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

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How to get and keep a job – from those that know

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There are many different factors that go into successful employment for people with and without autism.  As part of the ASF policy brief on employment, the US, Australia and Sweden held meetings with autistic adults, family members and employers and asked “what are the issues in your words”?  Then they were mapped onto areas of functioning, not ability or disability.  One thing that stands out is “matching interests and skills to job requirements”.  This is important, but a complicated issue.  This week’s podcast reviews what autistic people say, how it maps onto functioning and why we need to be careful about taking a one – sided approach to autism.

https://www.ncbi.nlm.nih.gov/pubmed/31276308

https://www.ncbi.nlm.nih.gov/pubmed/31177369

 

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An update on females with autism, on the double

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Females with autism are different than males with autism in a lot of ways.  This week, researchers used twins to examine the differences between males and females with autism in their brain structure and how it’s associated with autism traits, not a diagnosis.  To do this, researchers in Sweden turned to twins.  As it turns out, females have more of a diversity of differences in brain changes compared to boys, supporting the female protective effect.  But how to females with autism feel?  As them!  A group in the UK interviewed over 20 women on the spectrum or their parents to find out what concerns them most and what they find most challenging.

Both articles cited this week are open access:

https://link.springer.com/article/10.1007%2Fs10803-019-03906-4     https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6373677/