Thread by @thinkingautism

Now at #INSAR2019 Press conference. @sbaroncohen is talking about what INSAR is: The International Society for Autism Research, the conference is in its 18th year, it’s the largest org to bring together and foster autism research. “We keep autism research healthy and growing."

@sbaroncohen SBC: 4 major challenges to autism research:

1) Going from basic to applied research
2) Hetereogeneity (also innate vs. co-occurring conditions)
3) Balancing biological vs. non-biological research
4) Making research relevant to & communicating w/autistic ppl/families.
#INSAR2019

@sbaroncohen Now: Joseph Buxbaum, INSAR scientic program co-chair, also from the Icahn School of Medicine.

Says #INSAR2019 will have more oral presentations than before, allowing more biogical, medical, and neurological sessions. Now with more biomarkers! & Stem cells!

@sbaroncohen Buxbaum: We will also have lots of tech presentations, e.g., with training, remote diagnoses, including VR. #INSAR2019

@sbaroncohen Next: Evdokia Anagnostou, who is the #INSAR2019 meeting chair. Her responsibilities include organizing the local community events, so that locals can be exposed to the international talent that shows up at this meeting, including keynote speakers.

@sbaroncohen #INSAR2019 will have some bilingual live streaming/live translation so that local French speakers as well as people from all over Canada can access the meeting too.

@sbaroncohen Later, a first nations autistic dancer will be performing, to demonstrates one of the ways in which she communicates in her culture. There will also be other autistic artists from Canada #INSAR2019.

@sbaroncohen Now: Dr. Sthehen Scherer from The Hospital for Sick Children, Toronto. Talking about whole genome sequencing for autism fast and (kind of) cheap— as relates to genetics and brain development. #INSAR2019,

@sbaroncohen What the human genome project used to do for $3B, he can now do in a week, in terms of analyzing a person’s entire genomic sequence. This gives us more data, which may help figuring out the bases of autistic heterogeneity. #INSAR2019

@sbaroncohen Most of the big genome projects are being done with the same technology, which mean more data, which means more collaboration, which means more results. #INSAR2019

@sbaroncohen Scherer: We do have some genes that are being used for clinical diagnostics. (Intersting: In Canada, you can get this paid for publicly; in the US it is mostly private-pay). #INSAR2019

@sbaroncohen So we can analyze genes, but it seems like we still don’t have a lot of useful answers for what that means for autism. #INSAR2019

@sbaroncohen Now: Olivia Veatch, on genetic mechanisms connecting autism with sleep and circadian rhythms. Physical mental, and behavioral changes follow a daily cycle. Genetics play a role in sleep and sleep disorders, which are common in autistic individuals. #INSAR2019

@sbaroncohen If we don’t get enough sleep, our cognitive and physical abilities are worsened. This can make things even harder for autistic people who already struggle with adaptive skills and social environments. #INSAR2019

@sbaroncohen Treatment of sleep problems like insomnia in autistic children (very common co-occurring condition) is crucial, because we see improvement in autistic kids’ QoL and learning abilities, attention, etc. based *solely* on sleep improvements. #INSAR2019

@sbaroncohen Is is possible to find genes that affect sleep, and then use those to help autistic children get better sleep and thus improve their QoL? This is promising. #INSAR2019

@sbaroncohen Now; Whitney Guthrie from CHOP, on leveraging developmental trajectories to detect autism risk in primary care. #INSAR2019

@sbaroncohen She is talking about “developmental deceleration” which is a more thoughtful term than regression I guess? This often precedes a formal autism diagnosis.

#INSAR2019

@sbaroncohen How does using a developmental deceleration screening compare to using the MCHAT at 18 & 24 months? The first was more effective, but a combined approach was even better. #INSAR2019

@sbaroncohen …and if we screen more frequently before 9 and 14 months with these methods, which are non-intrusive, we can ideally catch more autistic kids earlier, and get them the support they need earlier. #INSAR2019

@sbaroncohen Now: Dr. Ruth Ann Luna from Baylor on GI issues, comparing autistic and non-autistic kids, including food diaries and stool patterns (frequency/consistency), and how GI issues interacted with behaviors. #INSAR2019

@sbaroncohen Findings: Distinct differences in autistic kids’ gut microbiomes compared to non-autistic kids. And the kids had different aggression and GI issues. So sub-group designations might be helpful for non-speaking autistic ppl experiencing pain. Should be a useful data set. #INSAR2019

@sbaroncohen Finally: Dr. Julia Parish-Morris from CHOP on a public/private partnership using VR to support autistic kids/adults in sudden/unexpected interactions with police, and how to make those safe. #INSAR2019

@sbaroncohen While the study focused on practical matters like keeping hands hidden, it’s important to note that a lot of the burden for safe police interactions for #autistic people needs to be on rethinking the roles of 1st responders, per @kerima_cevik:
poormagazine.org/node/5510
#INSAR2019

@sbaroncohen @kerima_cevik Dr. Veatch: When we talk about collecting data re: autism & sleep, we need to be sure we collect quality data. So we need to rely on tracking devices (objective) as opposed to parent reports (subjective). #INSAR2019

@sbaroncohen @kerima_cevik And to get better answers about autism and sleep, we need to be sure we’re asking the right questions, and we need to consider that sleep changes with development/age. #INSAR2019

@sbaroncohen @kerima_cevik Dr. Veatch on sleep tracking devices and apps like Apple Watches: Their accuracy for clinical data purposes have not been validated, but some people are working hard on this. #INSAR2019

@sbaroncohen @kerima_cevik Dr. Luna on GI pain: Any autistic person who has significant GI issues needs a full evaluation by a GI specialist, and ideally they need one who can understand how those symptoms manifest differently for autistic patients. #INSAR2019

@sbaroncohen @kerima_cevik Dr. Guthrie: Is excited about developmental deceleration findings, but now we need more research and data. So we need caution in jumping from this first study, to application. If kids stop hitting milestones, evaluation indicated. Might not be autism. #INSAR2019

@sbaroncohen @kerima_cevik @slooterman to Dr. Luna: How did you define “processed” foods? Dr. Luna: we had four levels. Also: Most of us feed our kids terribly (this was said in a slightly wry and non-sharing manner). #INSAR2019

@sbaroncohen @kerima_cevik @slooterman @slooterman to Dr. Parish-Morris: Was the Floria VR program still race-blind?

Dr. P-M: after the Arnaldo Rios/Charles Kinsey shooting incident, extended timeline by 9 months based on autistic feedback, and customized experience based on those factors. #INSAR2019

@sbaroncohen @kerima_cevik @slooterman How will Dr. P-M disseminate project, if successful & useful, more broadly? And does working from a “gaming” perspective as well as autistic people/police officers, putting on App stores, etc. mean it’s functional? It will be available once proof of efficacy delivered. #INSAR2019

@sbaroncohen @kerima_cevik @slooterman And that is the end of the #INSAR2019 press conference. Stay tuned, we’ll be going back to the Mental Health preconference after lunch.