iiinova — where your digital self keeps evolving

Reposted by Ivanova Smith

Thinking Person's Guide to Autism @thinkingautism.com · 27/08/2026

#IACCAugust2026 #IACC Now discussing Parts II and IV of the Strategic Plan - "precision therapeutics" and "priority therapeutic domains" (guest posting by @samanticka.bsky.social about Interagency Autism Coordinating Committee - livestream here iacc.hhs.gov/meetings/iac... )

iacc.hhs.gov

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Thinking Person's Guide to Autism @thinkingautism.com · 27/08/2026

Responding to requests to study vaccine-autism causation: "We are quite open to investigating anything and everything that could be impacting the development of autism, and this plan closes no door" - Dr. Fogel, chair of #IACC #IACCAugust2026

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Thinking Person's Guide to Autism @thinkingautism.com · 27/08/2026

Fogel arguing that the plan discusses other research "all over the place" - she's right, it does. But it has NO funding targets for it! That's the problem, this whole plan is supposed to be a basis for budget estimate, if you don't put it in the budget it may as well not be there

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Thinking Person's Guide to Autism @thinkingautism.com · 27/08/2026

This is really a summation of issues with this Committee - failing to meaningfully engage with the comments people are making. There is unusual unity among autism advocacy orgs that this plan has structural problems, and IACC's answer is basically "no it doesn't"

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Thinking Person's Guide to Autism @thinkingautism.com · 27/08/2026

Another member (can't see name tag) discussing @autismsciencefd.bsky.social comments - arguing that "nothing in this plan suggests that genetic work should not continue" - except, I guess, for the fact that includes no funding targets for it?

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Thinking Person's Guide to Autism @thinkingautism.com · 27/08/2026

Floor is opening to committee discussion of public comments. NIH Matt Mennoli specifically saying that NIH is working towards more investigation of vaccines as cause of autism

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Thinking Person's Guide to Autism @thinkingautism.com · 27/08/2026

(again, the Strategic Plan doesn't include funding targets to study ANY modality for communication supports! Doesn't matter which one)

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Thinking Person's Guide to Autism @thinkingautism.com · 27/08/2026

Current commenter is fully supported by Strategic Plan, *except* that the Strategic Plan doesn't specifically identify vaccines as a possible cause of autism. Also notes that plan doesn't sufficiently support spelling to communicate and rapid prompting method as communication modalities

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Thinking Person's Guide to Autism @thinkingautism.com · 27/08/2026

Next public comment discussing how ABA was torture for his son.... because it doesn't address mitochondrial dysfunction, leaky gut, etc. and kids should instead receive stem cell treatment. Says son has gotten genetic testing so there is "no autism gene" and it is instead environmental.

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Thinking Person's Guide to Autism @thinkingautism.com · 27/08/2026

Next commenter is an #actuallyautistic person disputing IACC's characterization of "elopement" - noting it's often driven by sensory overwhelm or wanting to go somewhere interesting. Does not think amber alerts are useful - instead need to teach autistic people safety, thinking about why ppl elope

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Reposted by Ivanova Smith

Thinking Person's Guide to Autism @thinkingautism.com · 27/08/2026

First public comment is discussing the importance of effective communication to her son. Hopes that the IACC will prioritize AAC (would like to note that the Strategic Plan contains NO funding targets for directly researching AAC - as opposed to general research on motor issues)

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Thinking Person's Guide to Autism @thinkingautism.com · 27/08/2026

Now moving on to oral public comments - the only comments that anyone on the Committee is guaranteed to actually hear.

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Thinking Person's Guide to Autism @thinkingautism.com · 27/08/2026

More in further threads - will be using #IACC to keep them together!

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Steven Kapp @drstevenkapp.bsky.social · 27/08/2026

They received comments just yesterday despite the submission deadline of August 20 yet they do not claim to have read the comments, only to have analyzed them by AI. They claim fewer than 2% of comments are in opposition, which seems hard to believe.

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demosthenes1959.bsky.social @demosthenes1959.bsky.social · 27/08/2026

Liars lie. Obviously the 2% number is fraudulent.

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Liz Ditz Still masking @lizditz.bsky.social · 27/08/2026

Thank you @samanticka.bsky.social for this work & @thinkingautism.com for hosting

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Thinking Person's Guide to Autism @thinkingautism.com · 27/08/2026

Also, it was often a struggle to push for more research on services and supports, and the needs of adults.

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Reposted by Ivanova Smith

Thinking Person's Guide to Autism @thinkingautism.com · 27/08/2026

The #IACC has never been personal. For almost its entire history, autistic people were barely included on it. In 2019, we got Congress to require that three people on the committee be autistic - but that's still very much a minority.

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Thinking Person's Guide to Autism @thinkingautism.com · 27/08/2026

Good morning! This is @samanticka.bsky.social , guest-posting today to update everyone about today's meeting of the federal Interagency Autism Coordinating Committee (IACC)! The views I'm posting are my own - and in my capacity as a former member of the committee. #IACC

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Thinking Person's Guide to Autism @thinkingautism.com · 27/08/2026

#IACC - as an aside, I almost didn't come here in person bc the IACC website said that the space was too full, and no more in-person registrations would be processed. Registration was required. There's maybe 20 members of the public here and 12 empty chairs in main conf room + empty overflow room

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Partial Robot @partialrobot.bsky.social · 30/01/2026

I’m sorry you feel that way. Your contributions were important. You worked hard to keep the dangers of institutionalization in the conversation and that really matters. I appreciate your work, the #IACC is weaker without you.

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Reposted by Ivanova Smith

Thinking Person's Guide to Autism @thinkingautism.com · 30/01/2026

“The federal Medicaid cuts are an absolute disaster for HCBS” & will push many people off Medicaid, leaving them w/o access to the only program that funds round-the-clock in-home support. “People will be forced into nursing homes or left to rely on unpaid family care.” www.kqed.org/news/1207014...

kqed.org

‘I’d Be Left Alone’: Medicaid Cuts Put Disabled Patients’ In-Home Care at Risk | KQED

After Congress approved roughly $1 trillion in Medicaid cuts over the next decade, California advocates are worried about the future of home-based care covered by Medi-Cal.

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Reposted by Ivanova Smith

Thinking Person's Guide to Autism @thinkingautism.com · 30/01/2026

I am furious that New York Times didn’t bother to recognize your IACC role, your representation for people with developmental disabilities mattered a lot. This is just an absolute crap article.

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Reposted by Ivanova Smith

Thinking Person's Guide to Autism @thinkingautism.com · 29/01/2026

One of the dangers of normalization therapies like ABA (Applied Behavioral Analysis) is that they can interfere with parents knowing what their autistic kids’ legitimate likes and dislikes—and even personalities—are. #autism #neurodiversity #BetterWaysThanABA

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Eric Michael Garcia @ericmgarcia.bsky.social · 30/01/2026

Done. The original is deleted and a revised one is up

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Eric Michael Garcia @ericmgarcia.bsky.social · 30/01/2026

This is also ludicrous because IACC has had nonspeaking people like @neuroscientist.bsky.social and advocates for people with intellectual disabilities like @ivanova1994.bsky.social.

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Ivanova Smith @ivanova1994.bsky.social · 30/01/2026

Yes that more accurate because I can speak many thanks

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Reposted by Ivanova Smith

Thinking Person's Guide to Autism @thinkingautism.com · 29/01/2026

Hey smartwatch users, please take heed of this warning about your data: “...the current administration's spread of misinformation around autism erasure will harm people who are autistic instead of helping them.” @ejwillingham.bsky.social in the latest TPGA newsletter: buttondown.com/TPGA/archive...

buttondown.com

"Profound autism" label is profoundly useless

Clustering autistic people under an arbitrary, demeaning label erases their individual humanity and needs.

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Ivanova Smith @ivanova1994.bsky.social · 30/01/2026

I am actually speaking now I was non speaking first 5 to 7 years my life it take me several years learn English when I got here but it don’t matter I failed to get people understand we have rights. I just hope and Trust Elizabeth and Caden can get through to them.

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Ivanova Smith @ivanova1994.bsky.social · 30/01/2026

Honestly it makes me feel like it was pointless for me get on #IACC all work I did there getting dismissed because I can talk now even though I was non varble and institutionized non of that matter when I can speak on it. I feel like failure.

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Shinjiro Aragaki 🏳️‍⚧️🏳️‍🌈 @shinjiro-aragaki.bsky.social · 10/05/2025

Yeah. So many people like that think that if you can post on the internet, you must be Level 1 and not need any support.

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Reposted by Ivanova Smith

Kibby Skibs @kibbyskibs.bsky.social · 10/05/2025

I remember many times in autistic subreddits there would be an Autism Mom/Dad yelling at people any how they don’t understand what it’s like, because apparently they assumed everyone there was Level 1 (they weren’t), or telling them they don’t need any accommodations like their child does.

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Ivanova Smith @ivanova1994.bsky.social · 11/05/2025

I love getting to work with her on AASPIRE

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Ivanova Smith @ivanova1994.bsky.social · 11/05/2025

That good thing we can’t let them take away our rights

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Reposted by Ivanova Smith

Thinking Person's Guide to Autism @thinkingautism.com · 10/05/2025

Looking to connect on AAC Research Opportunities? @communicationfirst.bsky.social has agreed to help facilitate more participatory research in the field by helping to connect researchers (whether or not they use AAC) and people who need and use AAC: communicationfirst.org/connecting-o...

communicationfirst.org

Connecting on AAC Research Opportunities

If you are a researcher or an AAC user interested in research opportunities!

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Reposted by Ivanova Smith

Thinking Person's Guide to Autism @thinkingautism.com · 10/05/2025

On autism disinfo: "A lot of people want not only an explanation but something to blame […] The resulting vacuum has created space for simplistic ideas to spread—even those that lack evidence & have been repeatedly debunked." @autisticadvocacy.org's Zoe Gross, at BBC: www.bbc.co.uk/future/artic...

bbc.co.uk

Autism diagnoses are on the rise – but autism itself may not be

Autism is better known and diagnosed than ever before, leading to misconceptions that cases are skyrocketing.

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Thinking Person's Guide to Autism @thinkingautism.com · 11/05/2025

It took a week to (mostly) recover from attending #INSAR2025, the International Meeting for Autism Research (we loved being there; it was also exhausting). We'll start posting our official conference coverage soon, at www.ThinkingAutismGuide.com. Stay tuned!

thinkingautismguide.com

THINKING PERSON'S GUIDE TO AUTISM

Autism news and resources: from autistic people, professionals, and parents.

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Dr. Alyssa (they/them) @yesthattoo.bsky.social · 11/05/2025

Research aimed at finding out what a few different stakeholder groups think often don't handle folks who belong to multiple stakeholder groups/have multiple roles very well. Makes it hard for autistic researchers, for example, or autistic parents of autistic kids. #AutINSAR #INSAR2025

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Ivanova Smith @ivanova1994.bsky.social · 11/05/2025

Nope forcing people into any medical treatment is not ethical and people think that ok are promoting medical model abliesm not all body react same to treatments force never ok!

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Thinking Person's Guide to Autism @thinkingautism.com · 03/05/2025

Grant: Not including underrepresented autistics (with ID/HSNs) is AGAINST the #neurodiversity paradigm, which for autism is about the heterogeneity of the autistic community. We need to share power. #INSAR2025

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Carol Greenburg @autisticenough.bsky.social · 05/05/2025

And w/o denigrating the urgency of HSN people’s needs, mostly speaking autistics like me lose speech more frequently than non-autistics may think. However short my periods of speech loss may be, at those times my self-advocacy skills dip too.

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Thinking Person's Guide to Autism @thinkingautism.com · 04/05/2025

The terms 'non-speaking' and 'minimally speaking' are more useful than 'nonverbal' and 'minimally verbal,' as the latter "may hamper research, practice, & policy efforts aimed at improving the lives of the autistic people who purportedly belong to these groups." journals.sagepub.com/doi/10.1177/...

Square Canva graphic with a dark gray background.

In the center is a white blob. At the top, red all-caps slanted text reads, "Today in Hell Yes, Research!"

Next, black text reads, "“We should use the terms ‘non-speaking’ or ‘minimally speaking,’ because they are preferred over ‘nonverbal’ and ‘minimally verbal’ by autistic people these terms attempt to describe.”

Next, dark gray all-caps slanted text reads, "Bottema-Beutel, Zisk, Zimmerman, & Yu."

At the bottom, small black text reads, "tinyurl.com/NonSpeakingNotNonVerbal" and "@ThinkingAutism".

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Ivanova Smith @ivanova1994.bsky.social · 04/05/2025

What happened to your socialized medicine seem UK has same problems as US we more alike then not…….

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