About That Study on “Preventing” Autism Diagnoses, and How Autism Researchers Can Do Better

Source: Wikimedia Commons [image: Photo of a smiling Black toddler with curly black hair up in puffs, sitting in a  Black adult’s lap, while a smiling medical professional interacts with them.] Patrick Dwyer, MA Lucas Harrington, PsyD Ava Gurba, BS  Last month, researchers in Australia led by Andrew Whitehouse published a new study: a trial of a “pre-emptive” intervention for infants assessed to have an elevated likelihood of later developing autism.  Internet furor immediately ensued, with some headlines proclaiming that the new intervention could prevent as many as two-thirds of autism diagnoses. Many neurodiversity advocates were naturally horrified by these ominous headlines, but was the media portrayal accurate? What were the researchers trying to do? The researchers who conducted the study claimed that it “chershes neurodiversity”: that instead of being about suppressing autism, the intervention aimed to help the caregivers of these possibly-neurodivergent babies better understand their children and adapt…

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Jordyn Zimmerman on This Is Not About Me, a Remarkable New Film

[image: a photo of Jordyn Zimmerman, a smiling white woman with long curly brown hair.] Jordyn Zimmerman is the subject of the phenomenal new documentary This Is Not About Me. Her story is one example of the difficulties non-speaking autistic people endure when they aren’t given appropriate communication options—and also how they can blossom when communication becomes possible. We interviewed Jordyn via email to talk about themes from the new film, as well as her own experiences and hopes. You can watch the This is Not About Me trailer, and rent the film, at thisisnotaboutme.film. Thinking Person’s Guide to Autism (TPGA): You are now pursuing a Master’s degree. Can you talk about why you chose this educational path, and your career goal? Jordyn Zimmerman (JZ): As you see in the film, I had many experiences which made me who I am today. I want to change the system so students do…

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Little Victories: Publishers Need to Stop Framing Resenting Autistic Children as “Love”

Shannon Des Roches Rosa twitter.com/shannonrosa “What does the story you tell matter, if the world is set upon hearing a different one?” –Ta-Nehisi Coates After my autistic son was diagnosed 18 years ago, I went looking for autism and parenting guidebooks. And while I found exactly zero mainstream resources for helping him be a happy and well-adjusted autistic person, I did find a sizable industry centered on “fixing” him, whether through ABA therapy, specialized diets, supplements, or worse.  It’s not surprising that humane strategies for parenting autistic children were not selling books in 2003, as the autism zeitgeist had only just moved on from blaming autism on “refrigerator mothers” and exploded into an autism-vaccine-epidemic panic. That era’s media outlets would typically only frame autistic children as damaged goods who needed to be reshaped into “normal” children. But we have long since debunked the autism epidemic and vaccine causation myths, plus…

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Grieving While Autistic

Jess Hudgins sawfishladyblog.wordpress.com Content note: This essay discusses death, disordered eating, and suicidality. The Beginning  On January 11th 2021, at 10:20pm, my father died. My heightened sensitivity to sensory input decided to record all of it, so very many things I don’t want to remember. The smell of sanitized plastic, the warmth of his skin against my cheek fading away, the way I held on to him until hospital security dragged me out screaming.  I would like to draw you a picture of that day. I would like to explain in the vivid details that for better or worse I can’t forget. I would like to tell you exactly what it feels like to have someone call a time of death for your father who can’t possibly be dead, except he is. Instead I’ll describe the bright white light of the moon that was streaming into my bed room the…

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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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Autism in Kenya: An Autistic Advocate’s Perspective

M. Kelter, Interviewer theinvisiblestrings.com Content note: mentions of restraint, ableism Netplus Kenya has been hosting an online series of moderated discussions in an effort to address high levels of stigma against people with disabilities there, stigma associated with long-standing cultural practices. This series is called the Watoto Wetu Initiative. It’s next installment is this Saturday, August 28th, and will feature autistic activist Karen Muriuki sharing perspective on the urgent need to minimize life-threatening stigmas so that families can begin improving outcomes and quality of life for autisic people and other vulnerable communities.  I communicated with Karen to ask about this speaking engagement and about the challenge of sharing information in areas where traditional beliefs define how many perceive and react to autistic differences. M: What is the main theme of this event and who is the audience these presentations are intended to reach? Karen: The event is about the need…

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Learning Life Skills or Just Playing a Game? Why Can’t It Be Both? An Autistic perspective on TTRPGs

Shawna Spain twitter.com/LikeSevenSpoon Photo courtesy the author. [image: Woman with braided hair and purple glasses is bent over a notebook with a  character sheet for “Veri Truestone.” There are various dice around her, a rainbow set, a ceramic set, some resin sets and two metal dice in a tiny glass jar. There is a dice vault with rainbow colors, another with wood burning of a map, and then a dice bag with purple fabric.] I didn’t know I was Autistic when I started playing Shadowrun, a table top role playing game. My boyfriend at the time was playing, and I overheard a couple of sessions where they seemed to be telling a collaborative story—and I never heard any arguments or weird pauses, which is how most of my social interactions went at the time. So I asked a lot of questions:  Like, you all agree to the same rules?  Yes, he…

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Wouldn’t You Want to Know If Your Autistic Child Was Being Harmed?

Created by Ezra Katz, Wikimedia Commons / Creative Commons [image: Simplified all-black figures of an adult holding the hand of a child while they stand side-by-side, on a yellow background.] Autistic Science Person twitter.com/AutSciPerson I am exhausted by non-autistic parents who: Ignore the experience of autistic people who went through ABA  Say ABA “was never like that” for their child  Assume their child cannot be traumatized long-term because they “seem happy”  Think we’re saying they’re trash parents You can’t speak for your kid. You can’t know what they think, what they feel, and what may have caused them long-term trauma that they’ll have to work through. You. Can’t. Know. That. Right. Now. That’s not how mental health effects from masking and from sensory invalidation work. And then I try to remember that when I’m talking to one parent who is speaking over their kid and their experience, five or ten…

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Two Autistics’ Experiences With Low-Gain Hearing Aids For Auditory Processing Problems

Photo courtesy Naomi M. [image: Photo of a pair of blue insertable low-gain hearing aids  lying on a dark brown wood-grain surface.] Naomi M. and endever* anotherqueerautistic.wordpress.com Summary/tl;dr Specially programmed low-gain hearing aids can help people with auditory processing problems, even when they don’t have other difficulty hearing. They work by enhancing the sounds that help people understand spoken words. They can also make sounds less painful. Auditory processing problems make it difficult to understand spoken words, especially when there’s background noise. It’s like your brain has difficulty hearing correctly. Many autistic people have auditory processing problems, as do some non-autistic people. The authors of this post both tried specially programmed hearing aids to help with auditory processing issues and with sound sensitivity. We have found them life-changing. In this post, we give background on auditory processing issues and hearing aids, and also share our personal experiences. Important Note This…