Welcome
Hello, dear reader, and welcome to the inaugural issue of The Autistic Infodump. We are a weekly newsletter by, for, and about autistic people. We collect the autism news of the week for you, so you can keep up with things when you don’t have the attention to spare.
Our mission is twofold. First, we aim to provide a news source that represents the autistic community itself, rather than the people who usually speak for us and over us. And second, we want to be part of creating the organizational infrastructure that our community needs to be able to support and empower ourselves, and to determine our own destiny. There will be more on this later, so stay tuned.
👓 Reading Us
As you’re reading this, you almost certainly know TAI is published on Substack at The Autistic Infodump. You can also follow us on twitter at @autistic_info. We publish weekly on Friday. We are currently entirely free, but our plan is to add paid subscriptions to support this effort soon-ish. You can, of course, do the free subscription right now and we’ll email you a new issue every Friday.
✍️ Writing Us
If you have news to contribute or feedback to share with us, please do get in touch. You can email us at AutisticInfodump@gmail.com, or DM or tweet at @autistic_info. If you just want to send a link to a thing we might find of interest, that’s very cool, too.
🎭 Who are we?
Our use of we here is, for the moment, entirely editorial, as it’s just your humble editor-in-chief muddling along with a little help from a couple of friends. Hello, I’m Josh Susser (twitter: @joshsusser). You may know me from my days as a programming blogger or conference organizer, but unless you’re a Ruby programmer, probably not. I’m an actually autistic person, mostly verbal, a San Francisco resident, a cisgender man, white, queer, middle-aged, disabled, and painfully aware of how many identities I don’t intersect with. My top priority for TAI is to expand the editorial team to actually be a team and include all the perspectives. I ask for everyone’s patience as we bootstrap this thing up from nothing and do the work necessary to represent the diversity of the community.
🌎 Who are you?
The Autistic Infodump is written primarily for autistic people. If you’re autistic, come on in and make yourself at home! If you’re not autistic (we call that allistic here), you’re still very much welcome and we’re happy to have you. We expect parents, caregivers, and practitioners to find much of this news of interest as well. But if you’re allistic, please keep in mind that you are in an autistic space, and you may be surprised that things here aren’t what you’re used to. If you find something confusing or off-putting, remember that things here aren’t built for you, so you may have to do a little work to bridge that divide – just like autistic folk have to do every day of our lives in spaces that aren’t built for us.
🤩 What do you want?
We want this to be your community newsletter. What do you want to see in it? What topics do you care about? Which people and organizations do you listen to? What do you think people need to know about the autistic community?
And what did we miss that you need? Is the design accessible enough? Is there something we can do to make reading TAI easier for you? Can we include a perspective we left out? If we have let you down, we’ll do our best to make it right.
Please do let us know. We are literally here for you.
But enough about me. Let’s talk about some news…
This Week
As this is the first issue of TAI, there are a few things from previous weeks that deserve attention, so we’re being a little flexible with our use of “this week” this week. Next week, “this week” will mean this week, meaning next week. –js
⏭ TL;DR
too long; didn’t read
Today (Nov 5) is the virtual UC Davis Neurodiversity Summit. Shannon Des Roches Rosa posted a preview thread of her session’s material.
The Autism Science Foundation released a statement defending the use of ABA as a therapy for autistic people. We believe much of this statement is inaccurate and relies on bad science, as is typical of defenses of ABA. There are, of course, opposing arguments that debunk this kind of gaslighting.
The New Jersey Autism Center of Excellence released a report on the effectiveness and safety of early interventions supporting autistic children: What we’ve learned from research on intervention designed to support children on the autism spectrum.
An excellent twitter thread from Ann Memmott on the intersection of autism and trauma, because some folks were just gaslighting about how having trauma means you can’t be autistic.
The good folks at NeuroClastic posted a poem by eight year old non-speaker Rumi Ottus: Lost, I am home
And finally, some moving tweeting by @AutSciPerson that explores the communication divide between autistic and allistic people.
🧬 Status update: Ongoing genetic studies
There are several ongoing efforts to conduct genetic studies of autism. These include Google/AutismSpeaks’s MSSNG (It’s “missing” but it’s missing the vowels. Get it? It’s funny if you think about it but not really), the Spectrum 10K study out of Cambridge (which has been paused due to community opposition), and Canada’s Autism Sharing Initiative (also supported by AutismSpeaks). These studies claim to be in service of improving the quality of autistic lives, but all seem to have problems with ethical design and potential harm. You’ll likely hear the word eugenics in criticism of these studies, because there’s a lot of that to them. We will follow these stories as they develop.
⚡️ The continuing saga of JRC and banning inhumane use of electric shock devices
#behavior-modification #disabled-rights #USA-🇺🇸
Actually Autistic reporter Sara Looterman wrote about the Judge Rotenberg Center in Massachusetts and how they still use shock devices on their autistic and disabled students. The FDA had banned the devices as inhumane, but the ban was overturned in a court decision earlier this year.
In September, the FDA quietly filed an appeal. Now, Sen. Chris Murphy of Connecticut and a handful of other Democratic senators are publicly expressing their support. In a letter shared first with The 19th, Murphy praised the FDA and Department of Justice for choosing to file another appeal.
🔗 One school still uses electric shock devices on its students. Seven senators are leaning on the FDA to get them banned.
🧑🔬 How and Why Neurotypicals Misunderstand and Mistreat Autistic People
#ethics #psychology #research
Autistic advocate and human genomics expert Heini Natri published an excellent essay that explains and addresses the communication gap between autistic and allistic people, and the impact that can have on mental health care.
A number of recent empirical studies have examined how neurotypicals perceive and judge autistics, shedding light on the social barriers faced by autistics in a world built for neurotypicals: Allistic peers are less likely to interact with autistic people because of immediate and unconscious negative judgments that are based purely on social communication style, and not substance. Autistic people are also often perceived by neurotypicals as deceptive or lacking credibility.
The article explores the issues and context that creates and supports this communication gap from many aspects. This is one that jumped out at me.
The world punishes autistic people for displaying their autistic traits, leading to masking even without interventions. Being rejected, marginalized, and receiving the constant message that everything that is intrinsic to them is wrong or unacceptable is a continuous source of trauma: society rarely produces non-traumatized autistics.
I do like the conclusion. Check out the whole thing to understand why this makes so much sense.
Allowing autistic people to openly share their experiences is crucial for reaching unidentified autistics: many late-identified autistics have decided to seek an assessment after discovering and relating to other autistic people’s stories. Autistic people must take control of the narrative in autism research, assessment, advocacy, and in the treatment of autistic people—only then can efforts be fully directed towards goals that improve the lives of autistic people and help more autistics thrive and reach self-actualization. In particular, more research and effort should be directed towards, e.g., understanding and preventing autistic burnout, accommodating for sensory differences, and tackling social stigma and exclusion.
🔗 How and Why Neurotypicals Misunderstand and Mistreat Autistic People
🧬 Update from the Spectrum 10K Team
#research #BoycottSpectrum10K #UK-🇬🇧
The Spectrum 10K Team released a statement regarding their “Co-designed Consultation” for the controversial Spectrum10K autism genetics study. This consultation is meant to be their response to community opposition to the study. The update is brief and contains few details, and initial community response has not been positive.
We are moving forward with plans for our co-designed consultation and can now provide an update.
The statement was released the day before a previously planned community protest against the study.
🔗 Update from the Spectrum 10K Team (28th October 2021)
🐦 AutisticJoy
#AskingAutistics #AutisticJoy #SpecialInterests
A fun twitter thread on how autistic people find their joy. It seems like many autistics are taking to the term autistic joy instead of special interest, as it is more about our internal experience than how others see us act. Click on through for folks raving about trains, planes, music, fractals, and enjoying some basic peace and quiet.
🎦 Autistamatic: The BEST tip for Parents of Autistic Kids
#advice #parenting #self-dx #YouTube
When parents get the news their child is autistic, their attention is almost always on their child, and usually they are thinking about how to bridge the divide the world says will separate them from their child’s life experience. This video turns that conversation on its head by asking: If autism is inherited, where did your child get it from? Quinn Dexter presents a list of useful questions for parents to ask themselves to see if they have more in common with their autistic child than they may have guessed. Even if you’re not a parent of someone autistic, these are great questions for exploring if you might be autistic yourself.
🔗 Autistamatic: The BEST tip for Parents of Autistic Kids
Related Reading
📚 We’re Not Broken
Garcia began writing about autism because he was frustrated by the media’s coverage of it; the myths that the disorder is caused by vaccines, the narrow portrayals of autistic people as white men working in Silicon Valley. His own life as an autistic person didn’t look anything like that. He is Latino, a graduate of the University of North Carolina, and works as a journalist covering politics in Washington D.C. Garcia realized he needed to put into writing what so many autistic people have been saying for years; autism is a part of their identity, they don’t need to be fixed.
I’m a few chapters into We’re Not Broken by Eric Garcia, and I love it. I’d be done with it already, but it is so densely packed with stories of the autistic experience that I have to spend time thinking through it as I go. Even only partway through, I am impressed by how Garcia combines the political and the personal into a narrative that feels like it’s about my own autistic life.
Garcia has been doing the online version of the traditional author’s book tour lately, which has generated some interviews about the book you may find of interest, too. I found the Politics and Prose interview on YouTube a good summary of the book and a fun chat as well.
🔗 Eric Garcia – We’re Not Broken
Shiny Things
Check out this gem of an Etsy shop: PawsitivePins. It’s all original artwork on wearable badges by an autistic cat person, for those times when you just don’t have the words. I’m enchanted 💜
That’s all for this week. Hope to see you again soon. – josh
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