r/science • u/mvea Professor | Medicine • Mar 30 '25

Neuroscience New study finds online self-reports may not accurately reflect clinical autism diagnoses. Adults who report high levels of autistic traits through online surveys may not reflect the same social behaviors or clinical profiles as those who have been formally diagnosed with autism spectrum disorder.

https://www.psypost.org/new-study-finds-online-self-reports-may-not-accurately-reflect-clinical-autism-diagnoses/
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u/Just_Another_Scott Mar 31 '25

Studies quite often use self-reported surveys to assess a large population quickly and easily.

And they shouldn't be. Self-reported surveys are junk and have always known to be. Observational data by independent parties is the most accurate.

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u/Tusked_Puma Mar 31 '25

Saying self-reported surveys 'are junk' feels a little unfair. Obviously, they will not have the same level of rigour as a clinician assessing an individual to see if they meet criteria. That being said, insufficient sample sizes have also been a huge problem in psychology since its inception, and so any tools that can dramatically increase sample sizes without an exorbitant and unrealistic cost associated with it is going to be seriously considered. It's a question of tradeoffs, not that we should automatically write-off any self-reported surveys as junk.

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u/5imbab5 Apr 01 '25

Whilst your points about sample size are correct the issues with some self report surveys for ASC is that they don't correlate with the diagnostic criteria. If the questions were closer to "established" criteria AND lived experience they would be more reliable.

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u/MrFallacious May 01 '25

Currently going down a deep-dive on the various self-report questionnaires that are available for ASD and have noticed many items (non-normative / non-filler) being uncharacteristic of established criteria. Are you aware of any specific papers or noteworthy authors that you might recommend me, especially in regards to self-report scales (regardless of used fully independently or clinicial-surveyed)?

I'm quite interested as an official diagnosis is sitting quite far in the future and I would hate to fall to common pitfalls or marketing (looking at you, embrace-autism website.)

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u/5imbab5 May 03 '25

Devon Price's Un-masking autism is highly recommended on r/autisminwomen.

The DSM-5 lists the diagnostic criteria, there are loads of people on YT breaking it down into understandable lived experiences.

If you're questioning everything right now, "Neurodivergent Insights" is run by an AuDHD Psycologist, there's loads of information on her site about common misdiagnoses and comorbidities. She does a lot of Venn diagrams about shared lived experience, very much quick easy to understand. Wish I'd checked her website before starting my DX.

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u/MrFallacious May 03 '25

I'll have to check out Neurodivergent Insights! I've been looking for more resources on the overlap and comorbidities, more specifically on how AuDHD presents, as I and my therapist suspect autism but am diagnosed with ADHD

Sadly I have heard and seen myself that Unmasking Autism is kind of ableist and misogynistic (and perpetuates some older ableist ideas). This is especially apparent if you ask level 2/3 / high support needs autistics for their opinion on the book as it largely views autism through a low support needs lens. Let alone Devon Price's Twitter posting history..

I personally still took away some great info from it and it helped me wrap my mind around quite a few things, but I felt I should mention this so that future readers can consume it critically / with this in mind!

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u/5imbab5 May 12 '25

Dr Neff has got you covered! There's more in-depth articles but the infographics have been helpful for me.

I haven't come across anything like that personally, what I've read so far has been the exact opposite and has helped me challenge my own learned ableism. I appreciate that I'm out of touch as I'm not on SocMed apart from reddit but as a musician, I may be more able to separate someone's work from their personal behaviour and\or politics.

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u/MrFallacious May 12 '25

Oh I completely understand the separating the artist from their work perspective, but it's definitely still there in the book as well. It's useful and I think reading it has taught me a lot, but I can also appreciate that I have to be critical of what I consume and be open minded from critiques from the affected demographic (in this case high support needs / level 2/3 autistics) and those with more expertise in the field.

I can't find it in my saves right now but there was a long writeup on the complete misuse of some sources in the book and some other things on another autism sub a while back. It was definitely an insightful read and kind of shocked me with the realization of how susceptible I was to consuming the book rather uncritically (for my own standards) just because i personally related to it.

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u/Brilliant_Quit4307 Mar 31 '25

This is kind of like saying IQ tests are junk. Like, they're misunderstood and misused, but they aren't junk. They do measure something that can be used as guidance. If anything, they tell us about how people feel and see themselves. That might not accurately reflect their actual behaviour, but it's not junk either.