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

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.

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.

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.

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.

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.

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!

• • •

Missing some Tweet in this thread? You can try to force a refresh

Keep Current with Thinking Person's Guide To Autism

Thinking Person's Guide To Autism Profile picture

Stay in touch and get notified when new unrolls are available from this author!

Read all threads

This Thread may be Removed Anytime!


Twitter may remove this content at anytime! Save it as PDF for later use!

Try unrolling a thread yourself!

how to unroll video
  1. Follow @ThreadReaderApp to mention us!

  2. From a Twitter thread mention us with a keyword "unroll"
@threadreaderapp unroll

Practice here first or read more on our help page!

More from @thinkingautism

4 May
@swirlee @randallb Here’s a thread on resources for parents whose kids have been recently diagnosed as autistic! Hope it helps.

First, here are some parent-penned guidelines for first steps after that diagnosis (tl;dr: Learn from my mistakes so you can avoid them):… 1/
@swirlee @randallb Here also are Eleven Ways You Can Make Your Autistic Child's Life Easier:…:

and How listening to autistic adults helped me understand and support my son:…

#Neurodiversity 2/
@swirlee @randallb If you prefer books, @awnnetwork_ *just* released “Sincerely, Your Autistic Child: What People on the Autism Spectrum Wish Their Parents Knew about Growing Up, Acceptance, and Identity:…

Read 4 tweets
19 Apr
Why do good people fall for bad autism charities & related efforts like #ColorTheSpectrum? A thread.

Mostly? "Our media conditions its audiences to fear & pity people with disabilities.”…


And it’s not just sensationalistic, clickbait media outlets that impugn the rights and basic humanity of autistic people. Respected, progressive publications and writers can be just as reactionary. 2/
But because we tend to trust “thought leaders” as both intellectually rigorous and socially fair, their ableism often goes unchecked and is far more dangerous than that of their unapologetically prejudiced counterparts.

Read 7 tweets
8 Apr
Hey Parents of Autistic Kids: Here Are Five Big, Avoidable Mistakes! A thread based on a TPGA post by @shannonrosa, parent of an autistic now-adult:…


As I have become increasingly devoted to 'learn from my mistakes, so you don't repeat my mistakes,' here are five bonks I made during the early years of parenting my autistic son, and how you can avoid repeating my fails.

If you're the parent of an autistic kid, you probably get advice thrown at your head from every angle, all day long. You may even be all done with advice. And I hear you, because I am you. 3/
Read 37 tweets
20 Jan
On this joyous inauguration day, we're republishing our Letter to President Biden @POTUS on Disability Policy, with renewed enthusiasm and hope for how the Biden Administration can best serve its autistic and disabled constituents.…

#neurodiversity 1/
Your disability policy makes us hopeful about the future for our autistic children with high-support needs. Thank you for taking the ADA, disability rights, inclusion, and QoL issues seriously, and also for addressing how the COVID-19 pandemic impacts the disability community. 2/
Many of our children are already adults, and many require full-time supports, which means we share your concerns. We also want to emphasize areas in which the Biden Administration can deepen and reaffirm its commitment to disabled people of all ages, and do the most good. 3/
Read 17 tweets
29 Dec 20
We talked with epidemiologist and all-around great guy Dr. Rene Najera @EpiRen about #COVID19 vaccine myths and facts—to both counter misinformation, & also answer community members’ questions. Some of the things we covered (a thread!):…

#VaccinesWork 1/
@EpiRen Dr. Najera’s particulars include (but are not limited to): a doctor of public health degree from Johns Hopkins and a master's in public health, in epidemiology & also in biostatistics. He also works for a large DC-area county health department. So, yes, he knows his stuff. 2/
As COVID vaccine prioritization is on everyone’s mind: They want to vaccinate everyone who can be vaccinated, so "Prioritization was done with the recommendation of the Advisory Committee on Immunization Practices (ACIP), which is a CDC committee of scientists and citizens.” 3/
Read 31 tweets
12 Nov 20
So what is it that parents of autistic people, especially those of children/adults with higher support needs, want from the @JoeBiden & @KamalaHarris administration, in terms of disability policy? Well, we’ve got high hopes! And also concrete goals. A thread.


@JoeBiden’s campaign’s disability policy makes us hopeful for our high-support autistic children. It also takes the ADA, disability rights, inclusion, & quality of life issues seriously, & also addresses how the COVID-19 pandemic impacts the disability community. All good! 2/
Many of our children are already adults, & many require full-time supports, which means we share your stated concerns. We also want to emphasize areas in which your administration can deepen and reaffirm its commitment to disabled people of all ages, and do the most good. 3/
Read 20 tweets

Did Thread Reader help you today?

Support us! We are indie developers!

This site is made by just two indie developers on a laptop doing marketing, support and development! Read more about the story.

Become a Premium Member ($3/month or $30/year) and get exclusive features!

Become Premium

Too expensive? Make a small donation by buying us coffee ($5) or help with server cost ($10)

Donate via Paypal Become our Patreon

Thank you for your support!

Follow Us on Twitter!