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.

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.

People may assume that anyone who claims to advocate for autistic people is a good person. This is often not true; many parent-run autism organizations actively oppose autistics on autism issues, specifically orgs like NCSA and @autismsciencefd.bsky.social: thinkingautismguide.com/2019/01/im-p...

Also note that anti- #neurodiversity parent-led orgs National Council on Severe Autism (NCSA) and @autismsciencefd.bsky.social are NOT among the Autism and Disability Organizations at next week’s @aapd-disability.bsky.social National Roundtable Discussion: www.aapd.com/autism-round...

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...

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...

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!

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

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

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.

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/...

I don’t understand where opponents of the Neurodiversity framework even get the idea that we are denying disability. I see myself as sometimes benefiting from the differences my autistic brain generates, and sometimes disabled by those differences. Many things can be true at once. #INSAR2025

More on the (common, despite professionals denying it exists) autistic profile of folks who can do academics, go to college, but are pretty severely disabled in terms of functional pragmatics, novel problem-solving, independent-living skills in general, etc.

I’m encouraged that she admitted that her view is in the minority.

Disappointed that Singer and Siegel doubled down on the importance of dividing the autistic community when asked what commonalities we can all come together and agree upon. @johnmarble.bsky.social your question was so poignant and appreciated! #INSAR2025 #autres

This is why a virtual option would be so valuable. We need to see more humans like Grant! #ListenToNonSpeakers. Damon Kirsebom was the ONLY Non-Speaker on a panel at the #CALS last week and he could not join in person so we saw a brief video from him but he also attended virtually.

No virtual option just shows how far behind the research is.

A 6 #AutINSAR I like see more Research on adoption trauma in autistic adoptees

On burnout and also how we metabolize medication differently, or our sensitivities to medication. Seconding the sleep issues as well.

A7: @drmbothapsych.bsky.social says that being wrong, especially having a paper retracted, can end your career. @autisticenough.bsky.social says that this is less likely for white men. Much more risky for other researchers. #AutINSAR @INSAR2025

A7: Dena Gassner says that there are a lot of people who have good hearts and then realize that they've done harm. And there's no support for them to be supported through growth. We need to be more welcoming and forgiving, and provide a safe landing space. #AutINSAR #INSAR2025

A7: Dr. Botha IRL says too many researchers are writing for their peers. Because terrified for their jobs. It causes a toxic culture of writing for the wrong people. #AutINSAR #INSAR2025

A7: @zahrablue.bsky.social says that there's also a fear of being wrong, so if you say something boldly, you have to be brave, and that's hard. #AutINSAR #INSAR2025

I’m all for the co-occurring condition stamper card for free ☕️. Wouldn’t that be a great perk? (Runs away before anyone can swat me on the nose with a newspaper for that horrible pun)

Another excellent and very thorough live-skeet of our panel today, for those who couldn't be there in person!

@drstevenkapp.bsky.social's panel at International Society for Autism Research on Neurodivergence-affirming research practices for autistic people w/ high support needs illustrates relevance of neurodiversity framework for people w/ significant disabilities - an important principle of our MSc course

Hi I’m Carol Greenburg, an editor at @thinkingautism.com, Thinking Person’s Guide to Autism. #AutINSAR #INSAR2025

Q6: What are some concerns of minority autistic community members that don’t get enough research attention? #AutINSAR #INSAR2025

Q5: Which co-occurring conditions need more research attention, and why? #AutINSAR #INSAR2025

Q4: Researchers: How do you think your research (or another researcher’s work) will improve the lives of #ActuallyAutistic people who are already here—as opposed to autistic people in future generations? #AutINSAR #INSAR2024

Q3: What concerns do you have about the directions in which autism research is headed, based on work presented at #INSAR2025, or in general? #AutINSAR

Welcome to #AutINSAR, an IRL & BlueSky chat between #ActuallyAutistic people & autism researchers. If you can’t join live, you can continue to answer Qs. #INSAR2025 #INSAR Questions will be in the format Q1, Q2, etc. Please answer with A1, A2 if you can (we will be compiling an article for TPGA).

Important thread to follow at #INSAR2025

A2: Autistic parenting experiences, chronic health issues, trauma, masking, autistic burnout #AutINSAR

A: 7. Agree about pay walls, lack of accessible language and open access communication. There are hierarchies that exist within academia, and it is exasperated in academic publishing #AutINSAR

A7: Involving autistic people directly in the sharing of research results

Q5: Autism hormonal imbalances ik there's research on autism and pcos but possibly broader hormonal imbalances like pmdd which can actually create intense suicidality, people with personality disorders like, eupd etc and also being autistic less likely to get diagnosed with autism due to convergenc

A7: #AutINSAR if you’re not on faculty, the paywalls that exist in order to even read existing research, get ‘covering’ by an institution to submit a proposal, obtain funds or use a license to publish (APC). Simplified language, Alt text and enabling other accessibility aids like screen readers.

#AutINSAR A2: - Autistic joy, and firsthand experiences more broadly - Examination of non-autistic behavior and society from an autistic point of view - Experiences of autistic people who are marginalized in other ways (thankfully occasionally mentioned, but we need to hear from more of us)

A3: - lots of meta, not enough constructive research into measures to reduce symptoms like sensory sensitivity, meltdowns and so on - the few studies that try to do this don't seem to allow for the "many autisms" - a given diet / supp / drug might only help a % of patients, but that's still useful

Motor difficulties experienced by autistic people from a neuroaffirming perspectives

A6: #AutINSAR minorities missing from the research priorities? The Global South (arguably the global majority) the lost generation 50+, and non-PhD scholarly researchers.

#AutINSAR A1: There are other topics which are worth studying as well, but off the top of my head at the moment, in no particular order: - Burnout (esp. prevention and recovery) - Co-occuring conditions (personally, PMDD) - Autistic culture (inherently valuable + acknowledging it humanizes us)

I think there is a lack of training in story telling or communication within the broader research community people are focused on methods rather than connection to not be viewed as emotional ad hominem logical fallacy and they don't know how to link to audiences emotionally without compromising data

A2: i would like to see more employment research based on the employment outcomes that matters to autistic people.

#AutINSAR A5: PMDD, anxiety (especially differences from non-autistic experiences), EDS, GI issues, trauma... Is "why" not self-explanatory? To understand autistic people's experiences (and non-autistic people's too, when it comes to co-occurring conditions) and help us be healthier and happier.

There are still 48 hours (until 12:30 Pacific time Monday?) to complete to @thinkingautism.com’s #AutINSAR chat.