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.

[u/koshim_]

https://www.psypost.org/new-study-finds-online-self-reports-may-not-accurately-reflect-clinical-autism-diagnoses/

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[u/Pure_Option_1733]

As someone with a clinical diagnosis I find that it can be hard for me to actually know what things about me are caused by Autism, and what are just typical human qualities. Autistic qualities feel like normal qualities until I see that others don’t have some of the qualities I have or claim to not have certain qualities that I have.

[u/zazenkai → u/Pure_Option_1733]

Yes, that's why many people go undiagnosed.

[u/Blossom_AU]

Had a Quick Look:
That ‘study’ seems to have a litany of validity issues! 😖

Eg, there is no reference to cultural backgrounds:
With anonymous online self-reporting, how did they exclude confounding factors arising from cultural diversity…..?

Seems crazy they collected data regarding ethnicity, but not for culture…..?
My African ethnicity doesn’t change that I’m culturally German / Australian.

Such crucial factors like culture not being excluded as confounds, and by the looks of it naively assuming everybody in the world were inject to American culture …… YIKES!!! 🤦🏽‍♀️🤦🏽‍♀️🤦🏽‍♀️

I so wish US American shrinks would turn on the television and maybe register that there are a shïtload of people who seem to have different cultural norms!
Close to 8.2 billion, really!

The APAs imperialism really beggars belief. It is unedifying, to say the least. 😒
Wish students in America were at some point taught there is, indeed, arrest of the world. Pinkie swear! 😉

That along with a small sample size kinda puts huge question marks behind validity: Less than a handful of participants of differing cultural backgrounds in the anonymous online cohort can have a huge impact on findings in a study with a comparatively small sample size.

---

Wow, just had a closer look at the data. Oh dear Lord …..

«We hypothesised …..»

And then wo engineer dynamic social situations to look for evidence of our unproven hypothesis:
The definition of confirmation bias! 😖

No offence, but I really wished the APA could maybe stop sucking BEFORE the shive their hugely U.S.-centric, culturally imperialist research down the world’s throat! 😒

Ideally, they’d also talk to some anthropologists and sociologists: Cause there’s a raft of confounding factors arising from evolution and the stages sociocultural development!
Those they conveniently perpetually fail to address and manage as well!

Unaddressed confounds + approach tainted by insufficiently addressed confirmation bias
= …. ‘research’ I wouldn’t be comfortable referencing in an UG assignment.

Sorry if I rained on anyone’s parade! I just really get irked by ‘research’ which fails basic scientific principles. 😢

[u/zazenkai]

This title is misleading.

The research shows the difference in what individuals self-report and clinicians notice, not that self-reporting is inaccurate.

I'd expect self-reporting for ASD to be in the 90% or higher range.

[u/Naevx → u/zazenkai]

That’s not really what it says. Self-diagnosis can actually be other things that a formal assessment can help differentiate. Widely accepting self-diagnosis can end up hurting autists and intervention policies. 

[u/Hungry_Huia → u/Naevx]

I feel as though this is the "people pretending to be allergic to gluten to get gluten-free only hurts people actually allergic to gluten" when all it's done is create a larger market for people who want gluten-free products (including folks allergic to gluten).

I have a formal diagnosis after 10 years of being self-diagnosed in part because people would tell me I must be trying to collect disabilities like Pokemon cards or that I'm an attention seeker. It cost me $1600 and because I have little to no support needs I'll never receive any tangible benefits thanks to the diagnosis, it really is just validation.

If mental healthcare was adequately funded and diagnostic assessments accessible for people without money to burn then sure, until then self-diagnosed autistic people are autistic people in my books.

[u/zazenkai → u/Naevx]

So you think there is a substantial number of people out there incorrectly diagnosing them as autistic? I would expect that number to be rare and insignificant. How would such people 'hurt' people who have ASD?

[u/Sorry_Championship67]

I haven’t read the article but I wonder what the story is with gender here? I never got a full formal diagnosis, but I’d say it’s because I’m female and didn’t fit the traditional male presentation of autism. My brother got a full diagnosis. Are there more women who self identify vs men?

[u/zazenkai → u/Sorry_Championship67]

The title is not an accurate representation of the research findings and is misleading.

[u/Sorry_Championship67 → u/zazenkai]

I have now read the article but I still have the same question. Nothing is stated about the genders of the participants in the study. I’d be interested to know how the women in both groups performed in comparison to the men.

[u/autism-throwaway85]

I am not surprised that self reporting isn't accurate. That's why doctors hate it when patients try to diagnose themselves off of internet questionnaires

[u/zazenkai → u/autism-throwaway85]

Not what the research shows.

Define 'accurate'. I think adults who have ASD are going to have a higher rate of accuracy than some so-called professionals who do not have ASD.

[u/Naevx → u/zazenkai]

Someone can “think” they have hypertension from a few episodes of high blood pressure, but not realize the context of their episodes were completely normal or related to something besides essential hypertension. Same with “self-diagnosed” autism. 

[u/zazenkai → u/Naevx]

Hmm, not an apples-to-apples comparison—ASD is a spectrum of a wide variety of symptoms.

[u/autism-throwaway85 → u/zazenkai]

If they have ASD, then they have already self-selected as accurate.

[u/zazenkai → u/autism-throwaway85]

You lost me. It's not true to say that 'self-reporting is not accurate' - that's not what the research found. It found there were differences in what was seen by self-reporters and clinicians, which is hardly surprising.

[u/autism-throwaway85 → u/zazenkai]

Yes, hardly surprising. Also I don't see these things as different. If there are differences between what self-reporters and clinicians find, then one of those groups is going to be inaccurate.

[u/zazenkai → u/autism-throwaway85]

No, I think the word 'accurate' is not helping. It's more than they emphasise and notice different symptoms - internal vs external, which is what we'd expect.

Ex. My psychologist noticed my lack of eye contact more than I did.

[u/autism-throwaway85 → u/zazenkai]

Is your psychologists name Edgar by chance?

[u/zazenkai → u/autism-throwaway85]

It's a woman. Why do you ask?

[u/autism-throwaway85 → u/zazenkai]

Because your autocorrect made an error and I thought it was pretty funny. You wrote Edgar in your previous reply!

[u/zazenkai → u/autism-throwaway85]

ヽ（´∀｀）ノ

[u/MurphysRazor]

I did real testing decades apart before doing some online testing.

The mapping from my tests online and at doctors were very very similar in shape.

But the maps aren't really the diagnosis so much as a tool that I don't have the expertise with to use to make a diagnosis. Even if I did it's incredibly more credible if confirmed by a pro..

[u/Naevx]

Blanket acceptance of “self-diagnosis” of a neurodevelopment disorder  and legal disability is clearly not the best way to go for people who truly have ASD. 

[u/Hungry_Huia → u/Naevx]

clearly not the best way to go

But for the vast majority of people who truly have ASD, it is the only way to go

[u/Zestyclose_Pin8514 → u/Hungry_Huia]

The difference between a self diagnosis and no diagnosis is words.