Improving patient reported outcome measures (proms) in autism research. Bridging the gap between advanced psychometric techniques and stakeholder priorities. Friday May 2 10:30 AM - 12:00 PM Room 4C-1,2 (4th floor). SIG Leaders Hillary K. Schiltz Zachary J. Williams. INSAR annual meeting.
Excited for another year of the Autism PROMnet Special Interest Group at #INSAR2025!
Come chat with us about using valid, accessible, and inclusive measures for and by autistic people in autism research 🙌
Friday, May 2 at 10:30AM (#706)
www.autismpromnet.org
@quantpsychiatry.bsky.social
25.04.2025 19:51 — 👍 20 🔁 3 💬 0 📌 1
There's a little bit on that in the discussion to talk about some sex asymmetries in certain outcomes (as sex asymmetries in BPD, fibro, and other conditions that would greatly increase suicide risk are totally a thing, and it's not like being autistic makes you immune to having those conditions)
20.03.2025 03:57 — 👍 2 🔁 0 💬 0 📌 0
Portion of table from paper showing descriptive statistics about suicidality characteristics.
And even though the autistic sample is clearly not representative of the whole autistic population (they are much more depressed and suicidal than average, being selected from three studies that oversampled people for those topics), the descriptive clinical phenotype of that group *is* the paper.
20.03.2025 03:31 — 👍 1 🔁 0 💬 2 📌 0
Four-panel graph with curvilinear trends in inverse U patterns in all four quadrants.
Similar age trends were observed for some but not all of the C-SSRS items representing suicidal ideation severity, as well as the ordinal "level of ideation," as seen below. No meaningful sex differences were observed across the sample in any of these outcomes.
20.03.2025 03:31 — 👍 0 🔁 0 💬 1 📌 0
Two-paned plot. Left-hand side shows inverted U trend that flattens at about 25 years of age and drops back down at about 50 years. Right side shows curvilinear trend with peak at 30 years and nadir at 50 years.
Below are the plots of (lifetime) suicidality and NSSI likelihood as a function of age in the sample. Both were quite common and had some complex/interesting age relationships that reflected both real clinical effects (like peaks in early adulthood) and recruitment biases (drop-offs later on)...
20.03.2025 03:31 — 👍 0 🔁 0 💬 1 📌 0
A very handsome and competent physician-scientist who is totally able to handle the finances of the major autism research professional society.
To all of the #INSAR members voting in the upcoming board election, (not that anyone cares but) I'm officially endorsing my good (bluesky-less) friend and colleague Mirko Uljarević for INSAR treasurer! With quant skills like his, the society's money is in good hands.
01.02.2025 06:40 — 👍 7 🔁 1 💬 1 📌 0
P. S. I'm proud of how good I could make him look with a little Facebook stalking and a B+W filter. Shows what you get for accepting my friend requests 😉
01.02.2025 06:41 — 👍 2 🔁 0 💬 0 📌 0
A very handsome and competent physician-scientist who is totally able to handle the finances of the major autism research professional society.
To all of the #INSAR members voting in the upcoming board election, (not that anyone cares but) I'm officially endorsing my good (bluesky-less) friend and colleague Mirko Uljarević for INSAR treasurer! With quant skills like his, the society's money is in good hands.
01.02.2025 06:40 — 👍 7 🔁 1 💬 1 📌 0
I think it's going to depend on just which services those are going to be. Home an community-based services through medicaid in the US, at least, definitely require a medical diagnosis, and I don't expect those to ever be granted on the basis of anything other than that.
19.01.2025 22:32 — 👍 1 🔁 0 💬 1 📌 0
Though this paper made some pretty strong mechanistic claims, it was peak replication crisis for experimental psychology, and I'm not sure that the findings re: the association of pitch discrimination and clinical features actually hold up in later studies (or support that mechanism).
19.01.2025 19:26 — 👍 0 🔁 0 💬 1 📌 0
The Unbearable Incoherence of Heritability: Interview with Eric Turkheimer
Eric Turkheimer is Hugh Scott Hamilton Professor of Psychology at University of Virginia.
The Unbearable Incoherence of Heritability: Interview with Eric Turkheimer ( @ent3c.bsky.social )
“The empirical end to the Galtonian project is more whimper than bang.”
www.psychiatrymargins.com/p/the-unbear...
19.01.2025 14:18 — 👍 32 🔁 15 💬 1 📌 11
I guess a question is whether ND activists will ever develop a clinically practicable alternative to medical autism diagnosis, because self-ID is clearly not sufficient for services/accommodations in many settings (hence the need to interface with the medical system).
19.01.2025 14:41 — 👍 1 🔁 0 💬 1 📌 0
But once again, in a pluralistic field, it behooves us to respect the values of the other side and not force our approach on them, particularly if we acknowledge that both approaches are needed for some autistic people at least sometimes.
19.01.2025 14:41 — 👍 1 🔁 0 💬 1 📌 0
I would argue that those using medical-model approaches should control the ways in which ASD is defined medically, and people who wish to have different (non-medical) definitions of autism "caseness" that reject the autism diagnosis (as many already do by including self-identification) can do so.
19.01.2025 14:41 — 👍 0 🔁 0 💬 1 📌 0
of interest and make people eligible for medical services under that medical model. This is largely the function of a medical diagnosis in the first place.
ND activists also view diagnosis as a much more collaborative process than it has been historically, where a clinician just assigns labels.
19.01.2025 14:41 — 👍 0 🔁 0 💬 1 📌 0
Though this is a reasonable perspective to have, I do wonder to what extent it actually makes sense to try and shift official DSM criteria to include non-pathological traits.
After all, the DSM and associated ASD diagnosis are clearly situated in a medical model *meant* to pathologize the traits
19.01.2025 14:41 — 👍 0 🔁 0 💬 1 📌 0
The Explanatory Value of Descriptive Diagnosis
There is a legitimate sense in which depression can be said to affect how people think, feel and act
intellectual disability and medical problems that are "co-occurring" with the characteristic physical features and hypotonia that signal the condition early in life. Again, @awaisaftab.bsky.social discusses how psychiatric labels go beyond simply being reflections if the same criteria on his blog.
19.01.2025 00:35 — 👍 2 🔁 1 💬 0 📌 0
Imagine, for a second, if we diagnosed rare genetic NDD syndromes clinically and only used the features that didn't overlap with other conditions to make the diagnosis. Those diagnoses would have high specificity, but we would come to absurd conclusions like Down syndrome is highly associated with >
19.01.2025 00:35 — 👍 0 🔁 0 💬 1 📌 0
Nevertheless, "autism" as a syndrome can go beyond DSM/ICD because the features exist in the world/phenotyping literature. This is why sensory features didn't magically appear in 2013--they were present all along and just elevated to be part of the diagnostic criteria at that point.
19.01.2025 00:35 — 👍 0 🔁 0 💬 1 📌 0
is one example of a "non-DSM" feature of autism that's pretty uncontroversial, and gets used as a soft sign sometimes when making diagnoses. It's also not present in many autistic people, especially those with more significant forms of ID and rare genetic syndromes, so far from universal.
19.01.2025 00:35 — 👍 0 🔁 0 💬 1 📌 0
See that seems paradoxical to me, especially when before you were calling (non-DSM) strengths part of autism. Autism itself is clearly more than just the behaviors used to diagnose it in DSM. Detail-oriented thinking (an autistic trait, undeniably-can be positive/negative/neutral based on context)
19.01.2025 00:35 — 👍 0 🔁 0 💬 2 📌 0
I'll fully buy that.
18.01.2025 21:21 — 👍 2 🔁 0 💬 0 📌 0
I do actually need to stop skeeting and get back to work, but I'll leave with this. It's really thought-provoking to have these discussions, and I enjoy doing so respectfully on this platform. What a totally different vibe than Twitter, lol.
18.01.2025 21:18 — 👍 2 🔁 0 💬 1 📌 0
What pluralism means, however, is that some people will use one approach (medical, non-medical, etc.), and some people will use another, and some both/a mix. Both are valid, and both can be useful (for some people in some contexts). And being intolerant of any of those viewpoints seems unhelpful.
18.01.2025 21:18 — 👍 2 🔁 0 💬 1 📌 0
Navigating Diagnostic Pluralism
Aftab et al. (2024) in J. Nerv. Ment.
I do hold in high esteem, for doing something as neutral (to me) as promoting better epidemiology/prevalence estimation. I just think the answer here to get most people's needs met is pluralism (as @awaisaftab.bsky.social has beautifully articulated in a more general psychiatric context).
18.01.2025 21:18 — 👍 4 🔁 2 💬 2 📌 0
Scientist and science writer. Author of The Psychobiotic Revolution with the brilliant scientists John Cryan and Ted Dinan. I write for Psychology Today and New Scientist. Find me at scottcanderson.substack.com
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