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Where is autism stigma the worst in the world?

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This week, part 1 in cultural stigma around autism with Mia Kotikovski provides an overview of stigma, where it can come from across cultures and provides some examples of stigma in different countries. Different areas of the world are in different places in terms of their perceptions of autism, their needs for autism families, and what they perceive as their greatest difficulties. The topic is so important we broke it down into two sections. Please listen to both, it will explain a lot about autism services and supports around the world.

https://journals.sagepub.com/doi/10.1177/1362361318823550

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8992913

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11303671

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11303671

https://pubmed.ncbi.nlm.nih.gov/30248583

https://pubmed.ncbi.nlm.nih.gov/38507392

https://www.researchgate.net/publication/277816405_A_Cross-Cultural_Comparison_of_Knowledge_and_Stigma_Associated_with_Autism_Spectrum_Disorder_Among_College_Students_in_Lebanon_and_the_United_States?enrichId=rgreq-97b7d5f50aac4d5b124ea8295b42fdb0-XXX&enrichSource=Y292ZXJQYWdlOzI3NzgxNjQwNTtBUzoyNDI4NTI2Mzk4NDIzMDRAMTQzNDkxMTk4OTI3MA%3D%3D&el=1_x_3&_esc=publicationCoverPdf

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The importance of a childhood diagnosis

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Two recent papers suggest that a childhood diagnosis of ASD is important for adulthood quality of life and well being. But another one points out that it isn’t the only thing, or even the primary factor, involved in improved quality of life and well-being as autistic adults age. There are others, like comorbid mental health problems, demographic factors like gender and current age. These studies were conducted by autistic researchers and did an amazing thing – one tried to replicate the other. The media got the point of these findings wrong (shocker) so today’s #ASFpodcast explains what they mean.

https://journals.sagepub.com/doi/pdf/10.1177/13623613231173056

https://journals.sagepub.com/doi/pdf/10.1177/13623613221086700?casa_token=Pt_EcbUzuDQAAAAA:_qVIXsQGRxWgoSOp4-kpLdohAr6CiB5lFYbhx8kK5omusM4rfHTjeyuzSLbxPh1OFftAc4j8BkuzCA

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9296439/

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Following our trajectory

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Compared to other types of research, there are so few studies that look at three time points in the same person with autism over their live to better understand groups and predict outcomes. What is missing? What do families need? What’s there and what could be done differently to get at the answers that will help families? This week we talk to @StevenGentles from McMaster University who led a review of this research and what it will add to the science. You can read the article open access here: https://journals.sagepub.com/doi/full/10.1177/13623613231170280?rfr_dat=cr_pub++0pubmed&url_ver=Z39.88-2003&rfr_id=ori%3Arid%3Acrossref.org

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“Profound” Autism

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On Tuesday, the journal Lancet published a 2+ year long endeavor around understanding the heterogeneity of autism not just in features but in access to services for individuals and families across the world. They called for a stepped care to help individualize and prioritize needs in different individuals based on their needs, not their diagnosis. They also called for the label of “profound autism” which describes individuals with very different outcomes compared to those who have a higher verbal and cognitive ability. Recognizing everyone needs supports and help, the “profound autism” label needs different supports, like different employment situations and different living accommodations. Thankfully, to authors, Dr. Catherine Lord from UCLA and Alison Singer from ASF explain the article and the impact they hope it makes on the field.

The article is open access but you have to register to download a copy, here: https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(21)01541-5/fulltext

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The 2021 INSAR quickie

This year’s annual meeting of autism researchers, INSAR, was virtual. But it didn’t stop hundreds of scientists from gathering online to discuss their viewpoints, findings, and the meaning for autism research to families. This week’s podcast captures some of the highlights, at least some of them, in a 30 minute talk. Some of the findings haven’t been peer reviewed, so they should be considered interesting-on-the-horizon discoveries that you should be excited about, but not to be taken as the gospel truth.

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Autism research around the world during this pandemic

It’s been over 6 months since this pandemic started. This isn’t just a U.S. problem, this is a worldwide shutdown of all biomedical research designed to help families with everything from autism to diabetes to cancer to multiple sclerosis. So how are autism researchers adapting? What are their concerns for the future that they want families to know about? A recent issue of Autism Research asked scientists from around the globe what their most pressing problems were and how they were addressing them to help families. This week’s podcast summarizes them and focuses on similarities across different geographical regions.

You can read all the articles FREE here: https://doi.org/10.1002/aur.2329