See #AutINSAR for our chat, in person and online, hosted by Thinking Person’s Guide to Autism. There is a transcript on their social media pages.
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#AutINSAR
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More #Autistic researchers than ever at #INSAR2025! #AutINSAR
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I forgot to use the hashtag #AutINSAR so they didn’t make it in.
@shannonrosa.bsky.socialall were covered except end-of-life. New article. #NeuroAffirming #LTC
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If you want to be a serious autism researcher, then you need to seriously pay attention to what autistic people want from research. #AutINSAR #INSAR2025
> @juliametraux.bsky.social @thetransmitter.bsky.social @autismsciencefd.bsky.social @statnews.com @ericmgarcia.bsky.social @autisticadvocacy.org
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I was unable to follow #AutINSAR live due to time differences, so I am extremely grateful to @shannonrosa.bsky.social and @thinkingautism.com for providing and boosting the live posts and reflections of direct and indirect participants.
It was enjoyable and thought provoking. Recap here:
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In case you missed it: #AutINSAR is a much-needed discussion between autistic people, autism researchers, family members, and professionals about priorities in autism research. This year it happened during #INSAR2025. Recap at TPGA:
thinkingautismguide.com/2025/05/what... #autism #neurodiversity
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Please know that I am still working on the #AutINSAR wrap-up (it was a HUGE chat) and hope to have it published this weekend. What a fantastic discussion we all had about autistic priorities for autism research! #INSAR2025
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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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I can still count the number of articles *about/addressing* AAC for substantially speaking autistic people that I'm not an author for on one hand.
(Quite a few more reference my work, but ... often to say AAC is good for nonspeaking kids??)
#AutINSAR #INSAR2025
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#INSAR2025 #AutINSAR the irony is we save up our limited funds to attend, then have to endure hearing from some ‘experts’ how we’ve been minimized, overlooked (as #AutisticElders) denigrated, and potentially prevented from existing.
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#AutINSAR
8 There are various barriers to being an autistic research student and academic. One is in dealing with internal politics/hierarchies and power imbalances when legal, moral, and ethical injustices happen. Some who publicly claim to support us do not practice what they preach.
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#AutINSAR
Q7 There needs to be more open scholarship (including open access publishing, and open data where ethical). Research should be written as understandably as possible, including at least plain language summaries.
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#AutINSAR
Q6 Racially and ethnically underprivileged autistic people often do not feel like the autistic community adequately addresses their concerns and is properly intersectional. We need further research on this & better ways to include people & advance social justice in neurodiversity movement
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#AutINSAR
Q5 Conditions like catatonia can stop autistic ppl from doing things and in one form can even be fatal. Perhaps understanding, supporting movement differences (dyspraxia) as inherent to autism might help here.
Apraxia of speech also might interfere w/ speech but not necessarily language.
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Q3 The term "profound autism" threatens to become increasingly entranched, while its supporters may support the work of RFK Jr. to institutionalize and stigmatize etc. autistic people.
Also, subtyping autism more broadly and AI-based diagnosis are not well-supported but may be abused.
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#AutINSAR
Q2 Research on
- how many "profound autism" supporters support segregation etc.
- how internalized stigma relates to reduced quality of life & especially its relation to support for "losing" an autism diagnosis
- non-autistic neurodivergent people's views on neurodiversity beyond autism
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#AutINSAR Q1
Autism researchers need to appreciate and unite around the relevance of the neurodiversity movement for autistic people with high support needs (HSN).
We need better understanding of AAC (and apraxia of speech) for HSN autistics.
Also, high-quality research on how services impact lives.
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#AutINSAR #INSAR2025
A5: As mentioned in my earlier response, AuDHD and its role in hiding or blurring what might otherwise be a clear autism (ahem) diagnosis. Do we need a specific AuDHD diagnostic tool?
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3) Others have already said it, but please please please: SLEEP.
Sleep deprivation is against the Geneva Convention because it's considered a form of torture, but when autistic people don't sleep, it's just "part of autism."
Why do we accept being fobbed off like that?
#AutINSAR #INSAR2025
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#AUTINSAR #INSAR2025
2)Can we get more on mental health understanding and support for autistic people? And, related, the relationship between self medication, addictions and neurodivergence. This is also related to ND people within the criminal justice system, but maybe that's a separate question.
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#AutINSAR #INSAR2025
A1:
1)Autism and ADHD, aka AuDHD, and other co-occurring conditions. Autism rarely if ever comes unaccompanied, so why do we still silo neurodivergence like this?
Is this not part of what allows #ProfoundAutism to get traction?
Can we examine neurodivergence holistically?
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#AutINSAR having to rely on illegal or borderline illegal ways to access non-open source papers/books.
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#AutINSAR A3: eugenics, prenatal testing/embryo selection, "curing" autism in utero or in children because parents hate them; calling eugenics a matter of women's rights like TERFs attack trans people.
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#AutINSAR They are a very dangerous medical event in the brain, direct relation to seizures.
3. Similar further studies on our nervous systems and the ways we need to be treated for certain health problems differently than allistic people do would be a good third option.
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#AutINSAR people with a disorder.
2. Please research what medications and other physical treatments there are for meltdowns. Also similar to number one, please put what meltdowns actually are into words allistic peers (yours and ours) can understand. Please focus on how they are not mental or /3
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#AutINSAR born with, then you haven't done any real research at all.
For a top three things,
1. Finding how best to describe the difference between what an allistic person is and what an autistic person is, biologically. Focus on the fact that autistic people are different people, not allistic /2
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#AutINSAR Above everything, autistic research needs to be done with the understanding that there isn't anything pathological about being autistic. If you're researching autistic people and traits, thinking you're researching allistic people symptoms of a disorder that allistic people can be 1/
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A7: Ableist, medical model language is a huge barrier to me. I am not going to wade through multiple paragraphs about how "disordered" my kid and I are or how awful our "deficits" are. Many of us do not have the spoons for dealing with these microaggressions.
#AutINSAR
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