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The Autistic Community’s Concerns Regarding Spectrum 10K and Eugenics Are Valid

By athree23 from Pixabay [image: Photo of a yellow diamond “Dead End” road sign flooded to mid-post and reflected in the water underneath.] A new autism research project, Spectrum 10K, has just been launched accompanied by much media hype, celebrity endorsement, and rhetoric about neurodiversity. It is led by the University of Cambridge (principally Professor Simon Baron-Cohen), in collaboration with the University of California, Los Angeles, and the Wellcome Sanger Institute. Spectrum 10k aims to be the largest genetic study conducted on autism in the United Kingdom’s history, and is trying to collect the data of 10,000 autistic people and their families. We write in personal capacity as concerned autistic academics who research autism in the UK from a variety of fields. While the project’s aim is to help cultivate autistic wellbeing, the main outcome of the project is to generate an autism DNA database, which will likely be used by…

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What Happened to Ethics, in Research About Autistic People?

Photo © Thomas Haynie | Flickr / Creative Commons  [image: Scrabble tiles spelling out the word “Research.”] Ann Memmott annsautism.blogspot.com I wondered whether a recent major international autism conference had discussed ethics as a topic this year.  I found one discussion. Well, that’s better than none, for a three day conference about our lives.  Here’s part of that research team’s paper. It’s called “Pervasive Undisclosed Conflicts of Interest in Applied Behavior Analysis Autism Literature” and was written in 2021 by Bottema-Beutel, and Crowley for a journal called Frontiers in Psychology.   “Result:  Of the 180 studies that met inclusion criteria, we found that 84% had at least one author with …a conflict of interest, but that they were disclosed as conflicts of interest in only 2% of studies…Five of the eight journals we examined had policies requiring disclose of conflicts of interest related to employment; clear violations were evidence in four of…

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Ehlers-Danlos Syndrome: An Autistic Autism Researcher’s Insights

Dr. Emily Casanova  [image: Black-and-white headshot of a white woman with medium-dark, chin-length waved hair.] Ehlers-Dahlos syndromes are disorders that affect connective tissues. It is both under-researched, and a common co-occurring condition in autistic people. We wanted to know more about how Ehlers-Danlos gets diagnosed (and overlooked) and the state of the research, so we spoke with autistic autism researcher Dr. Emily Casanova, who presented on this topic at INSAR 2019, the annual meeting of the International Society For Autism Research. Thinking Person’s Guide to Autism: First you can tell us a little bit about you and your work? Dr. Casanova: My work has two major foci. The first centers around the relationship between Ehlers-Danlos Syndromes (EDS)/hypermobility spectrum disorders (HSD) and autism, trying to tease apart their shared biology so we can better define and understand precisely what these overlapping conditions are. The second branch of my work focuses on the…

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The State of Autism Research: TPGA Takeaways From IMFAR 2016

Shannon Des Roches Rosa with Carol Greenburg Your faithful TPGA editors spent most of last week in Baltimore, Maryland at IMFAR, the International Meeting for Autism Research. We gleaned as much as we could from the 2000 scientists, professionals, autistic people, and family members from all over the world who spent three full days talking about the most current findings and trends in autism research. But we didn’t cover everything or meet everyone we wanted to, because doing so is not physically possibly without a Time Turner. (If you ever want to experience abject FOMO — fear of missing out — by all means, go to IMFAR.) Overview Ninety-nine percent of the researchers at IMFAR are the nicest, most well-meaning scientists one could ever meet, which makes for a friendly atmosphere. We were happy to see significant progress on some research fronts: only a single presentation about vaccines, and it…