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attention attention…this is the INSAR 2023 summary

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Last week in Stockholm, Sweden, 2200 researchers and scientists working to understand and help those on the spectrum, met to share their most recent findings and exchange ideas. What were the main takeaways as ASF saw them? We cover why some autistic people don’t want genetics to be studied, how to better engage families with IDD and who are non-speaking, females, adults, international studies and yes, diversity. The program book was released a day before the meeting and can be found here: https://cdn.ymaws.com/www.autism-insar.org/resource/resmgr/docs/annualmeeting/insar2023_program_book.pdf

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Don’t say “….all autistic adults”

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While there are commonalities across autistic adults on many things, they differ. It might be time to stop saying “…..all autistic adults” when describing those on the spectrum. For example, for the most part, most autistic adults prefer email or text over other methods except when talking to friends and family. It was not universal, but the most preferred methods. This is important for scientists to want to gather the input from autistic adults – use email and online surveys NOT the telephone. But even these online surveys have problems. Large online research studies have the advantage of gathering large sets of data from geographically diverse people in a short period of time, but they may be biased if they don’t report who answered them. Recommendations for how to at least deal with diversity in scientific literature is included.

https://pubmed.ncbi.nlm.nih.gov/34169750/

https://pubmed.ncbi.nlm.nih.gov/34169230/

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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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Autism across the ages

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Two studies from Sweden came out this week with the same idea: study autism across time, and focus on other things besides just autism. This podcast reviews both. The first examined quality of life in adults over the course of 20 years and the other followed preschoolers into school age. The results are consistent. That is, people with autism have high levels of psychiatric comorbidities which depended on a number of factors. Of particular importance is the role of intellectual functioning on outcome. These recent data are further evidence that while people with autism share struggles, those with ID may need to be considered differently in clinical care, housing, employment, and obviously intervention.

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The world agrees on studies of early autism. Find out what they think.

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Studies of very early signs of autism, even before an official diagnosis can be made, has led to better recognition of early signs and driven earlier and earlier interventions.  These interventions have improved the lives of people with autism.  The biological signs like brain activity, structure and genetics could further improve early intervention paradigms that look at biomarkers rather than just behavioral features.   Studies of these early signs are best looked at through symptoms in younger siblings of those with a diagnosis, who have a 20x higher risk of ASD compared to those who do not.  To move to even more high impact discoveries, researchers need more families to participate.  But what do families really think of this type of research?  Adults and parents agree on the value of understanding the early signs of autism, but not always about what to call it.  This week’s podcast explains.