pond-3776437_640-8043189

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…

20201124_0348452b252822529-7796517

Towards Autism Acceptance: An Interview With Researcher Desi Jones

Non-autistic people harbor assumptions about autistic people, whether they’re aware of them or not. And those biases can get in the way of autistic people being included both socially and professionally. We talked with Desi Jones, a Doctoral Student at the University of Texas at Dallas, whose recent paper Effects of autism acceptance training on explicit and implicit biases toward autism examines how autistic acceptance efforts both succeed and fail in addressing stereotypes about autism, and what this means. We also discussed her work on structural racism in autism research, and how institutions can do better by their autism researchers of color—and why that doesn’t merely mean recruiting more POC. Photo courtesy Desi Jones [image: Desi Jones, a smiling Black woman with curly shoulder length purple-tinged hair.]  TPGA: Can you tell us about your background, and what drew you to autism research? Desi Jones: I double majored in Neuroscience and Psychology…

242306827_3151239302_z-2899077

Why Doesn’t Respect for Communication Diversity Include Non-Speaking Autistic People?

Photo © Pier Paolo Tosetto | Flickr / Creative Commons [image: Photo of a young child wearing a white baseball cat crouching down and talking at a brown bunny.] Emily Paige Ballou chavisory.wordpress.com One day, when I was 15 or 16, I was making my way through the crowded halls of my high school as I did most days, wondering for nowhere near the first time in my life how it could possibly be that I felt so isolated and cut off from most of my peers. Even ones I considered friends, or generally got along well with. There was some quality of their relationships with each other that just wasn’t there when it came to me. Everybody seemed to know things I didn’t, all the time. And finally, that day, I thought, “It’s almost as if I’m blind and deaf.” Not in the literal sense of not being able…

96520189_3024026770988161_3230118609808261120_n-5849272

Conflicts of Interest in Early Autism Intervention Research: A Conversation with Dr. Kristen Bottema-Beutel

Photo courtesy Dr. Bottema-Beutel [image: Formal photo of Dr. Bottema-Beutel, a smiling white woman with medium-length side parted brown hair.] Advocates of early autism interventions often claim such approaches are “evidence based,” whereas critics have long pointed out individual flaws in cited studies. We were glad to learn about Dr. Kristen Bottema-Beutel’s analysis of general conflicts of interest in early autism research, and talk with her about how her findings complicate assertions about being early autism interventions being evidence based, and what else she and her team discovered. —- Thinking Person’s Guide to Autism: Can you tell us why you decided to pursue this analysis of conflicts of interest (COIs) in early autism intervention research? Bottema-Beutel: The short answer is that I’ve been following Michelle Dawson on Twitter (her handle is @autismcrisis). Michelle is an autistic researcher who has been sounding the alarm on undisclosed COIs for more than a decade—before I…

ann2bmemmott2b2brude2bgraphic-4211147

Ridiculously Misguided Autism Research Strikes Again!

Ann Memmott annsautism.blogspot.com In the recent Lancet article The gut microbiome in neurological disorders by Cryan et al, confused researchers have mistaken reducing stomach pain for curing autism (yet again). Now, autism researchers, when was the last time you had a hurty tum? How was your behaviour? Having an ‘aha!’ moment now? Thank you. If you want a hint of the joys within the Lancet paper: it references Tomova et al’s 2015 paper Gastrointestinal microbiota in children with autism in Slovakia, which involves nine autistic children ages 2-9, in an unblinded study (meaning they knew which kids got the probiotic supplement) and parent reports of “behaviour.” Apparently after the treatment autistic children showed less “challenging behaviour” which led to the the supposition that “…appropriate… microbiota is required for normal social development.” The problem is that autism isn’t a behaviour, any more than being Deaf is a “behaviour.” The cited quest to…

11-17-16-8817062

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…

1643134715_a9d2c63188_k-6343831

It’s Time For Autism Research To Do Better By Autistic People

Photo: Charlene Croft | Creative Commons / Flickr [image: hand of a person with light skin arranging long red, green, and yellow construction blocks in a line.] Shannon Des Roches Rosa @shannonrosa Autism research is mostly failing my teenage son and his autistic community. Saying something so forthright may seem harsh, but this is the Greta Thunberg era—and we’re now telling people what they need to hear, not what they want to hear. I’ve been going to autism science conferences and scrutinizing autism research for nearly a decade, and during this time most autism studies have remained mired in areas like causation—a pursuit that does absolutely nothing to improve the lives of autistic people who are here already. Even more frustratingly, when research does address the needs of existing autistic people it does so with the goal of “intervention,” rather than focusing on quality of life, and largely neglects those…

ahi9ot7frdcspsfiw74jqq-2138481

Autism and Self-Injury: Talking With Dr. Rachel Moseley at INSAR 2019

Dr. Rachel Moseley and Carol Greenburg [image: Photos of two smiling white women wearing glasses posing together. Left, Rachel Moseley has shoulder-length light brown hair. Right, Carol Greenburg’s hair is in a platinum bob.] Content note: This interview discusses self-injury and suicidal behavior. Oftentimes the most rewarding findings at INSAR, the annual meeting for the International Society for Autism Research, emerge during the pre-conference sessions. We went to the 2019 pre-conference on autism and mental health and were impressed by Dr. Rachel Moseley’s presentation on self-injury in autistic people without intellectual disability—and are grateful that Dr. Moseley was able to make time to talk with TPGA editors Carol Greenburg and Shannon Rosa about her research. Shannon Rosa: Dr. Moseley, can you first tell us a little bit about yourself, and your background and affiliations? Dr. Moseley: I’m a researcher at Bournemouth University. I did all my studying and my PhD…