RTing Stanford Neurodiversity Summit Day 3 for those who missed it yesterday. #SNS25 #neurodiversity
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Here are the videos for #SNS25 Day 1 in Berg 1/2 (the keynote room): vimeo.com/1118553648?s...
And Day 2 same place, including Ari Ne'eman's talk: vimeo.com/1118828076?s...
They include transcripts, does that help?
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And how that bias could justify what was often being pushed anyway - a focus on 'looking better' rather than 'feeling' better, especially wrt ND kids.
Excellent coverage of the Stanford Neurodiversity Summit brought to you by @thinkingautism.com
#neurodiversity #SNS25
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Recognizing that some OCD behaviours can be a stim in ND individuals was an early aha moment for me that made me realise - as an educator and clinician - how limiting and open to bias so many diagnostic tools were.
#neurodiversity #SNS25
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Hannah Gadsby: "Autism informs everything that I do—it's my processing unit so it's how the information goes in and out.
"Since being diagnosed, it's helped me understand that I'm not a rubbish person—I just think about things differently."
youtu.be/0KoFuTGD8Kk?...
#SNS25 #neurodiversity
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Now watching Fern Brady, an autistic Scottish comedian on how “There's Not Enough Talk On How Weird Neurotypicals Are”:
youtu.be/HaqsScc32nQ?...
#SNS25 #neurodiversity
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The social model is about not internalizing the social compact of how things &
people "should" be. And even as Oliver Sacks wrote wonderfully about ND people, he was still distancing himself from them. We need more stories from inside ND experiences, those are more authentic.
#SNS25 #neurodiversity
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Before Cohen knew about her own disability, she was introduced to the concept of neurodiversity through the writings of Oliver Sacks. She was glad she was not like "those people"—except turns out she was.
#SNS25 #neurodiversity
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With regards to the Social Model of Disability, that means that being disabled can stem from how you are treated by other people, not by how you are. Basically who's looking and who is being looked at.
#SNS25 #neurodiversity
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So for Cole, without a functional parietal lobe, every trip to the grocery store is a treasure hunt. And as soon as she discloses her disability, people usually treat her differently. As most non-disabled people are wont to do.
#SNS25 #neurodiversity
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First-person narratives use "I" perspectives.
Now we're talking about the brain's parietal lobe, which stores navigation/mapping memories. You can use it to autopilot in familiar places like grocery stores.
When she was 26, she discovered she had a huge hole in that lobe.
#SNS25 #neurodiversity
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Reposting yesterday's Stanford Neurodiversity Summit #SNS25 commentary for those who missed it!
#neurodiversity
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There were concerns with every single AASPIRE instrument during the evaluation process, so they had to be adapted or created. This was done with multiple small workgroups.
#SNS25 #neurodiversity
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Was REALLY hard to get from 60 outcomes to 15, but by doing so we really got to the core of needs, with High Priority Outcomes for AASPIRE.
#SNS25 #neurodiversity
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We need to be able to measure outcomes, for services to be able to work.
Used Delphi process, which means reaching agreement among experts, usually academic experts.
AASPIRE created a CBPR-nested Delphi project. Started with 60 outcomes that we wanted to measure.
#SNS25 #neurodiversity
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We need effective services for autistic adults. But what do we actually mean by "services" or "interventions." (With the understanding that in the autism realm many people see "interventions" as normalizing, but Nicolaidis refuses to cede that ground.)
#SNS25 #neurodiversity
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Let's talk about inaccessible and therefore invalid surveys:
Over 20~ years, the community partners have reviewed lots of survey instruments, and found most to be accessible. So AASPIRE is working hard to make better tools.
#SNS25 #neurodiversity
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Now Nicolaidis is talking about AASPIRE Outcomes Project (disclosure: SR, your faithful correspondent here, is on the community board).
Measurements matter! What are we measuring, how are we measuring it, and who are we including?
#SNS25 #neurodiversity
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The AASPIRE healthcare toolkit is now back online, thank to Organization for Autism Research. researchautism.org/healthcareto...
#SNS25 #neurodiversity
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AASPIRE is all about community based participatory research (CBPR). What this means is: The community keeps research respectful, accessible, and socially relevant. The academics keep research scientifically sound and academically relevant.
#SNS25 #neurodiversity
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AASPIRE really tries to have a diverse grouping of participants. Not because of DEI, but because that's what makes good research. We need lived experience as well as expertise. AASPIRE time includes speakers and non-speakers, executives and people who find employment hard. #SNS25 #neurodiversity
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Nicolaidis has a background in exploring marginalized community members' frustrations about misalignment of research priorities and lack of inclusion in the research process. Turns out, the same frustration was happening in autism communities and research. #SNS25 #neurodiversity
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As a very privileged health care provider with a newly diagnosed autistic son, Nicolaidis started getting helpful insights from autistic adults, insights that were unavailable in the mainstream medical & autism treatment communities. This is how she met Dora Raymaker.
#SNS25 #neurodiversity
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Stanford Neurodiversity Summit #SNS25 Day 3 starts now, with Dr. @cnicolaidis.bsky.social's keynote. Dr. Nicolaidis is the founding editor of @autisminadulthood.bsky.social (highest rated for impace of all autism journals) and also runs the AASPIRE project with Dora Raymaker.
#neurodiversity
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Mental health is health. Advocating for your whole self, including your bodily autonomy and sensory system, protects your health. #Neurodiversity #SNS25
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Damn right! Often I hear someone make a good point at a presentation and I want to quote-re-skeet it by simply appending “FFS” 🤦♀️. #Neurodiversity #HonorYourOwnSensorySystem #SNS25
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Guessing my sensory system is less malleable than than my ability to mask my sensory overload. At 62, I’m less willing and able to mask. Sometimes practice doesn’t make perfect. Sometimes practice makes unmasking impossible. #AutisticAging #SensorySystems #MaskingIsPrivlegeAndDanger #SNS25
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Social media can be a platform for belonging, self-expression and justice. But there is a limited amount of AAC access on social media, and that means that representation doesn't happen. It's hard to do a 10-second vid if every word takes you ten seconds.
#SNS25 #neurodiversity
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Be careful about the assumptions you make about people who are nonspeaking. Talk to them directly, they are present. And remember that it takes time to talk with an AAC device. Long questions can be exhausting to remember before answering.
#SNS25 #neurodiversity
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For Janani's family, acquiring AAC eye gaze access was about small victories; it is very exhausting and can initially be hard to be precise. Now she has more than 140 "locations" that she can use to communicate with eye gaze.
#SNS25 #neurodiversity
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