Thread by @thinkingautism

Now: We are at the live #INSAR2021 press conference. And since it’s online, maybe you can be there, too:

facebook.com/autismINSAR/vi…

8 different studies are being presented at the #INSAR2021 press conference, draw from the 1000s of presentations being featured at the conference.

Unless I’m mistaken, there isn’t supplementary text or captioning so I’m having a hard time parsing what’s going on.

#INSAR2021 press conference topics include Diagnostic challenges in underserved populations. Also studies of pains and eating issues. Also a cross-cultural exploration of stigma between Korea and the US, and also the impact of COVID on autistic adults as well as their caregivers.

First up at #INSAR2021 press conference. Dr Sundari Chetty, from Stanford University, US. She’ll be talking about autism subtypes, including macrocephaly (larger brain/head), which includes ~15% of autistic people, especially in certain genetic conditions.

Dr. Chetty & team are trying to figure out why this “brain overgrowth” occurs. This may be the very first time in which an autism-cancer comparison is actually appropriate, because in this case cancer cells also experience overgrowth. BUT THIS IS THE ONLY EXCEPTION. #INSAR2021

Brain overgrowth in some autistic people and other neurologic conditions may be an immune response. So of course this means they may be able to develop an intervention because autism is always about suffering and eugencs is a slippery slope etc. #INSAR2021

Now: Jacob Van…(FB screen cuts off name). At Sick Children in Toronto. Used to be 3-4% of autistic kids had genetic condition: Tuberous sclerosis, Fragile X, Angleman’s. In 2021 we can find a genetic cause in about 20%. #INSAR2021

So genetic testing is increasing becoming part of the diagnostic process. But order the test and interpreting the result requires expertise—about which there is no consensus. There is no broadly accepted, systematic approach. #INSAR2021

Also neurodevelopment disorders include ID/motor disorders, not always (or overlapping with) autism.

He’s proposing a method called EAGLE “Evaluation of autism gene link evidence” that systematically evaluated level of confidence in the autism phenotype. #INSAR2021

Now: So Yoon Kim from Korea: Talking about autism stigma in the US vs Korea. Since Korea is highly socially homogeneous and “tight," those who differ from societal norms, like autistic people, are stigmatized. #INSAR2021

Is autism stigma higher in Korea than in the US? And if so, why? And what would be effective anti-stigma interventions?

Koreans tend to have less autism information than USians. They also tend to have less contact with autistic people.

#INSAR2021

Because cultural “tightness” in Korea leads to more stigma about autism, and less understanding about diverse ways of being, introducing a #neurodiversity framework may be helpful in reducing stigma.

Note: The pandemic increases “tightness,” & may increase stigma.

#INSAR2021

Now: Carly Hyde from UCLA, on the impact of the COVID pandemic on people with genetic NDDs, and their caregivers. The international online survey was distributed in April 2020 and again in Feb 2021. 46 states, and 39 countries. Some were able to transition to online.

#INSAR2021

Negative changes were associated with discontinued therapeutic services, access to medical care, and quality of virtual services. Overall, COVID restriction created more problems than benefits for neurodivergent people & their families, though some thrived/adapted. #INSAR2021

So this next presentation is about autistic traits and eating problems in a twin/gender differentiation study. But it doesn’t even mention that selective eaters often have sensory or trauma-based reasons for being selective, so I’m not going to cite the researcher. #INSAR2021

Now: Nicole Rosen from UCLA, on longitude research on sibling constellation factors. Sibling relationships may be one of the most meaningful in an autistic person’s life. They can also help autistic siblings build adaptive supports, rooted in that relationship. #INSAR2021

Both white & Black sibs showed benefits from a sibling relationship, even more pronounced in the Black families, but there may be multiple reasons and THANK YOU Nicole for noting that this is an exploratory study so hold off on those screaming inflammatory HLs pls. #INSAR2021

Now: Michelle Failla from Ohio State, on sensory differences in autism, specifically pain. Autistic people experience pain (hyper/hypo responsiveness) differently and both autistic people and caregivers think this leads to inadequate pain treatment.

#INSAR2021

Just because someone can’t tell us they are in pain doesn’t mean they are in NOT pain. Failla's research suggests autistic people are actually in pain more often than non-autistic people. Also females tend to experience more pain. This is ALLLLLL under-researched.

#INSAR2021

One real-world example of autistic females experiencing more pain than males: Most lost work, more lost physical experiences. This can have quite an impact on their lives. We need tailored pain assessments/scales to use in medical settings, and better pain management.

#INSAR2021

If you can remove pain from the autistic experience equation, then hopefully you can actually focus [implied] on autistic accommodations in workplaces and schools, and better QoL. #INSAR2021

Dear #INSAR2021 attendees: If you’re going to study autism, maybe consider that most autistic people prefer “autistic,” and not “with autism.” Not everyone, but most. And as science-minded people you should understand the importance of not letting outliers guide practices.

And that’s it for our coverage of the #INSAR2021 press conference!