From the Editor
Hi and welcome. It’s our third week of The Autistic Infodump! It’s still early days and we will be evolving and fine-tuning things for a while, but it’s starting to feel routine. We still want to hear your feedback and input - either email (AutisticInfodump@gmail.com) or twitter (@autistic_info).
This week I want to say something about a specific use of language and how we talk about the experience of learning that we are autistic. The most common way I see that put is “I was diagnosed as autistic,” or “I am self-diagnosed autistic.” The use of diagnose in this context feels off to me, as it assumes a medical perspective. It feels like saying I’ve been diagnosed with right-handedness.
I want a better way to talk about the experience of learning we’re autistic, one that isn’t based on the medical model of disability. I no longer like saying I am self-diagnosed. I have tried to use revelation instead of diagnosis, but that word doesn’t verb the right way to be a simple replacement. I think identify also has issues with how that word often gets misused to mean things that aren’t really about identity (ex: “I identify as a coffee drinker.”)
According to the social model of disability, being autistic by itself is not disabling; it’s having to live in a world built for neurotypical folk that makes us disabled, and so most if not all of us are effectively disabled in our society.
How can we talk about being autistic in a way that respects that we are disabled, but doesn’t accept the medical model framing? I haven’t yet found an answer for this that feels right. Has anyone?
This Week
⏭ TL;DR
We’re keeping an eye on @mykola’s nascent ND Support Center. They’re asking for help building out the lists of online resources (at bottom of the main page).
Congratulations to ASAN on their 2021 Gala. Some video content is available now on YouTube, and there are links to movies and other content on the event page.
🧠 Melanie Sykes is happy she now knows she is autistic, calls for education reform
#celebrity #education #UK-🇬🇧
British TV presenter Melanie Sykes announced this week that she has received an autism diagnosis, and she wants everyone to know how happy she is to get the news.
“This week has been truly life-changing, or rather, life-affirming,” she wrote in the email, originally obtained by the Sun. “As many of you may or may not know, I was diagnosed with autism late Thursday afternoon. And then, finally, so many things made sense.”
She said her diagnosis had come as a huge relief and was one she would be celebrating. “I now have a deeper understanding of myself, my life, and the things I have endured.”
It seems like the way people announce being autistic is changing. Celebrities usually opt for saying they have Aspergers, Sensory Processing Disorder, or some other don’t-call-it-autism label. But that seems to be changing. Wentworth Miller came out as autistic in August, and much like Melanie Sykes, he didn’t shy away from the autistic label, and was happy to learn this truth about himself.
It’s also gratifying to see Sykes already using her celebrity to promote autistic inclusion and educational reform. “My activism has massively kicked in.” Nice to see it, Melanie.
“I always put it down to being the youngest in my year. I left school at 15, and I just thought I was less mature than the others, but I now know the education system wasn’t set up in a way that I was able to function there. It crowbars you into a certain way of thinking and being, and if you don’t fit the bill you get left behind. That’s why we need to tear down the education system and rebuild it, so it suits everyone.”
🔗 video: Melanie Sykes announces she is autistic on Instagram
🔗 TV presenter Melanie Sykes announces ‘life-affirming’ autism diagnosis
🔗 Melanie Sykes calls for education system to be ‘torn down and rebuilt’ to help autistic people
🔬 You are not what you eat
#diet #digestion #research #samefoods
It is something like common wisdom that autistic people have a lot of digestive issues. This idea has lead many to try using dietary interventions to treat or even cure autism. Improving your diet and eating habits can have generic benefits even if it can’t change your neurotype, so it’s hard to know if a dietary approach specifically affects autism, or if improved overall health is being misinterpreted. A bit of science should help sort that out.
A study out of The University of Queensland that was published in Cell magazine looks at gut health in autistic people, and concludes the cause-effect relationship is reversed from the usual assumption.
We found negligible direct associations between ASD diagnosis and the gut microbiome. Instead, our data support a model whereby ASD-related restricted interests are associated with less-diverse diet, and in turn reduced microbial taxonomic diversity and looser stool consistency.
In other words, autistic eating habits lead to digestive issues, not the other way around.
Brisbane autistic woman Trudy Bartlett said the research findings provided an important step forward for the autism community. “Having evidence-based research like this study will help members of the autism community to navigate this space and not spend copious amounts of money and time on fads that claim to improve the quality of life for an autistic person,” she said.
🔗 Autism-related dietary preferences mediate autism-gut microbiome associations
🔗 Flipping the gut microbiome–autism link on its head
🐦 Autistic Twitter to the rescue
#community #education #AskingAutistics
YouTuber @BeauTFC has discovered whom to ask for useful information about autistic people: actually autistic people. His journey of discovery was short but illuminating. He started with this:
The good people of #ActuallyAutistic Twitter showed up, and revealed the secret that autistic folk can understand ourselves just fine, thank you very much. Just minutes later…
I found the whole thread fascinating, and really appreciate the patience and kindness of the autistic community in helping Beau get useful answers. And of course, he posted a video report of the experience.
🧬 Tracking Genetics Studies of Autism
#eugenics #genetics #research
We’re tracking a number of autism genetics studies. No new updates this week. If you are aware of any studies we have missed, please let us know.
MSSNG – Google, AutismSpeaks
Spectrum 10K – Cambridge University
Autism Sharing Initiative – Global Alliance for Genomics and Health, AutismSpeaks
SPARKforAutism – Simons Foundation
Related Reading
📚 Wild Child
I haven’t had a chance to pick up Dara McAnulty’s new book, Wild Child, but I’m going to as soon as my ADHD gives its permission. No, I’m not waiting on the hopes someone will give it to me for holidays, but it does look like a wonderful holiday gift for someone. This book is written for children and is full of lovely illustrations by Barry Falls. Dara McAnulty is an autistic, teenage naturalist from Northern Ireland, and is collecting awards for his writing at a furious rate. He tweets at @NaturalistDara.
Shiny Things
I’m always a fan of good infographics, and I like these visuals by @AutisticCallum_ on his @adulting_with_autism_ insta. There is some good discussion in the posts, so give them a read, too.
That’s all for this week. Hope to see you again soon. – josh