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Stigma experienced around the world

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Despite many years fighting it, families with autism still experience societal stigma. The experiences depend on many factors, summarized in the October 21st podcast. This week, Mia Kotikovski explores cultural factors involved in stigma. As examples, she explores the literature from Asia, the Middle East and the United Kingdom, how they are different, and how families cope with that stigma in different areas of the world.

https://link.springer.com/article/10.1007/s40489-023-00373-7

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9330163

https://link.springer.com/article/10.1007/s10803-019-04218-3

https://www.nature.com/articles/s41598-022-23978-0

https://molecularautism.biomedcentral.com/articles/10.1186/s13229-023-00579-w

https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0261774

https://onlinelibrary.wiley.com/doi/full/10.1002/aur.2652

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How in research helping indigenous families with ASD?

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On this day, October 12th, we celebrate Indigenous People’s Day by talking about how many indigenous people have ASD, what services to they receive and what are scientists around the world doing to help them. It’s not enough, but it’s a start.

https://pubmed.ncbi.nlm.nih.gov/32762685/

https://pubmed.ncbi.nlm.nih.gov/31999495/

https://pubmed.ncbi.nlm.nih.gov/31928063/

https://pubmed.ncbi.nlm.nih.gov/19962033/

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Resources and Services for Adolescents and Young Adults

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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.

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Betsy DeVos, autism screening and testosterone – in that order

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This week two studies which examined infants and younger children that will significantly advance understanding of causes and services for people with autism were published.  After a commentary about the confirmation of Betsy DeVos, the study that used a practical methodology to improve autism screening in pediatrics clinic from researchers at Duke University was presented.  After that, some early results from the EARLI study  which examined pregnancies in families where an older sibling was diagnosed was presented.  In this study, Bo Park and her colleagues at Drexel University, Johns Hopkins University, University of California at Davis and Kaiser Permanente show that testosterone levels in pregnancy aren’t related to later autism symptoms unless the older sibling affected is a girl.  These findings can illustrate why girls are less likely to be diagnosed with autism compared to boys.  The study is open access and can be downloaded here, thanks to the journal Molecular Autism:  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5282802/pdf/13229_2017_Article_118.pdf

 

13229_2017_118_Fig3_HTML

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Autism Insurance Mandates: Necessary But Not Sufficient For Services

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Autism insurance mandates are wonderful.  They require insurance companies to pay for screening, diagnosis and treatment and services for people with autism.  But just because insurance will pay for it does not mean that it’s out there.  The idea of “build it and they will come” for insurance mandates is on it’s way, but not quite there.  Dr. David Mandell from University of Pennsylvania explains why in a new study.  Also, single genes that are associated with autism are a great start to look for causes and subtypes of people with autism, but they aren’t the final word to resolve the heterogeneity of ASD.  If you didn’t read the new story about new findings in brains of people with autism, read more on the ASF website.