Research study that one of our peeps participated in:)

[u/crissycakes18]

This part of the study shows that out of a group of 259 people who were either reported to be diagnosed or think that they have autism without a diagnosis, only 88 people met the criteria for ASD, this is useful information that can be used to back up our beliefs that most people self diagnosed with autism likely aren’t autistic and shows just how much misinformation is likely spreading as a result of this.

[u/Roseelesbian]

It'd be interesting to know how many of the 88 people were ones who claimed to be diagnosed vs how many of them were self-diagnosed.

[u/crissycakes18 → u/Roseelesbian]

True i wish they specified that

[u/Adventurous_Roll7551 → u/Roseelesbian]

If I remember right from further down in the paper, they said that some of the people in that group came in already with a formal diagnosis, and the others were self suspecting and then were formally diagnosed by the research team as part of the research process. So everyone in that group ended the study with a clinically valid diagnosis

[u/ParParChonkyCat22 → u/Roseelesbian]

When someone linked the study it says the online group only less than 5% have confirmed autism diagnoses while others self reported high symptoms and traits without a diagnosis is more likely to have social anxiety or avoident personality disorder.

[u/crissycakes18 → u/ParParChonkyCat22]

Yea my friend who is in this sub was one of 5 people who reported actually being diagnosed

[u/proto-typicality → u/crissycakes18]

Ten people, not five. :>

[u/Curious_Dog2528]

This supports my suspicions that most self diagnosed people don’t meet criteria for asd

[u/axondendritesoma]

One finding I consider interesting is that those who self-reported high autistic traits performed similarly on the task to those assessed in-person (by a clinician) and deemed to have low autistic traits. This implies to me that self-reporting individuals not only fail to accurately report their autistic traits, but may also have the tendency to over-report or exaggerate their traits on self-reporting measures. I find this interesting because research shows that autistic people actually tend to under-report their traits due to self-insight difficulties. Therefore, this behaviour would be contrary to what is typical of ASD.

I think it is nonsensical to include undiagnosed people in ASD research because they may not even be autistic.

Anyway, this is some insightful research — thank you for sharing!

[u/proto-typicality]

Found it. The bit you’re looking for is in the supplementary section:

Roughly 18% of the participants screened for ASD (without a prior diagnosis) met criteria.

Which isn’t terribly bad. If you’re self-suspecting, you got about a 1 in 5 chance of being right.

[u/axondendritesoma → u/proto-typicality]

If you look at it from the other angle though, these statistics suggest that the odds of accurate self-ID are still quite low — about 4 in 5 (80%) self-suspecting individuals in the sample didn’t meet the ASD criteria, which is a significant number. I would describe these odds as terribly bad in this context, considering all participants entered themselves into this ASD research as ‘autistic’ participants.

This really emphasises to me the problem with allowing self-suspecting individuals to participate in ASD research as autistic participants, as there is a chance that at least some of them (if not more, based on this study’s statistical findings) do not meet the autism criteria and are therefore not even autistic

[u/proto-typicality → u/axondendritesoma]

I will say that’s an oversimplification in the paper. Not everyone who participated identified as autistic, but it was probably easier to just write that versus going into detail about the specifics.

Otherwise agreed. I think self-identification is unavoidable in most autistic research, though, which is unfortunate. Even if you allow diagnosed people only, the researchers can’t verify it. This study was unusually rigorous. They screened everyone who wanted to participate in-person. But that’s expensive. Autism diagnoses usually cost like thousands of dollars. Most autism researchers can’t afford that.

[u/axondendritesoma → u/proto-typicality]

I agree with you

[u/proto-typicality]

Cool! I was in this study, too. I was part of the group that did tasks in the MRI scanner. :>

Unrelated: As others noted, they screened everyone, not just those who were self-suspecting. So you can’t extrapolate from this to say that most people who self-suspect are wrong.

[u/Chamiey]

Link? Or is it not published yet?

[u/crissycakes18 → u/Chamiey]

https://www.nature.com/articles/s44220-025-00385-8

This is the link sorry

[u/Chamiey → u/crissycakes18]

Thx

[u/SomewhatOdd793]

We need more research like this tbh. The self diagnosed crew often get so attracted to autism that they get severe confirmation bias and forget other things like social anxiety, avoidant PD, OCPD etc

[u/Murky-South9706]

Sure, but what you've presented doesn't necessarily say that all of the people who were judged to not meet the criteria were self-dxers. The information presented does not differentiate. How many participants had an actual diagnosis prior to this? How many of those received a report that was consistent with their existing diagnosis? Doesn't tell us this.

Based on this, we can equally conclude that plenty of actually diagnosed people were deemed not autistic according to these assessors, which obviously calls into question the validity of assessments to begin with.

Was there more detailed information somewhere else, that you could share?

[u/crissycakes18 → u/Murky-South9706]

I havent found any specifics on it yet

[u/Murky-South9706 → u/crissycakes18]

If you find any, would you be willing to let me know? I'm interested in this topic.

[u/AutisticPeeps-ModTeam → u/[deleted]]

Removed for breaking Rule 1: No Self-diagnosed Autistic People Allowed.

We, as a modteam and subreddit, are against self-diagnosis.

[u/DoMyRuby → u/[deleted]]

What is an a-meter?