New study finds online self-reports may not accurately reflect clinical autism diagnoses (well no shit, Sherlock)

[u/fan_go_round]

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

Bias is one of the first and most important concepts taught in introductory high school psychology classes. Attribution bias, self-fulfilling prophecy, the Barnum effect, and confirmation bias are just a few examples. The use of placebo pills in medication trials highlights the power of the brain in responding to suggestive cues and self-reporting symptoms. It's not surprising that science continues to demonstrate how self-testing (and by extension, self-diagnosis) is an ineffective tool for diagnosing disorders as complex as autism.

[u/shadowthehedgehoe]

I'm so glad they've actually done the research here though, now we have something to link to when they claim self diagnosis is valid lmao

[u/janitordreams → u/shadowthehedgehoe]

Excellent point. Bookmarked to whip out when necessary lol.

[u/Cavia1998]

The article seemed like a lot of self-diagnosed are more socially anxious than socially disabled. That makes a lot of sense because anxiety and autism have a lot of overlap that no one seems to want to talk about. The self-diagnosed people that I know have very high anxiety and don't show key traits of autism. They know what to do in social situations, but some don't like to socialise.

[u/proto-typicality → u/Cavia1998]

I dunno if saying that non-autistic socially anxious people aren’t socially disabled makes sense. They don’t have the same deficits as autistic people, but anxiety can be pretty disabling.

[u/Cavia1998 → u/proto-typicality]

They're socially disabled but in a different way

[u/proto-typicality → u/Cavia1998]

Yeah, I think that’s a good way of putting it. :>

[u/capaldis]

Oh wait I was in this study lmao. They told us they were testing video games as a way to teach social skills in autism.

[u/proto-typicality → u/capaldis]

Me, too! Were you one of the in-person participants? :>

[u/capaldis → u/proto-typicality]

No I was one of the 10 actually diagnosed people online lmao! I got recruited through SPARK but don’t live in NYC.

[u/proto-typicality → u/capaldis]

Oh awesome! I was in-person for this study. Really surprised me, too, since I was also told this was a study about social skills.

[u/spekkje]

This matters not just for research, but also for clinical care. If online studies are used to shape understanding of autism or to develop interventions, it is important that the participants truly reflect the population the research aims to help. Otherwise, there is a risk of creating treatments or policies that are not effective—or even relevant—for those who are clinically diagnosed with autism.

This is soooo true.

[u/janitordreams]

Good. I'm glad some of the medical and scientific community has started pushing back against the trend of self-diagnosis. I've been shocked by how many have just accepted it and gone along with it, including a world-renowned research university system near me I never expected to.

[u/NoBackupCodes → u/janitordreams]

I work in the welfare department for my country and there are so many cases of "Autism (suspected)" or "ADHD (suspected)", and many times when people will tell us that they have a condition but it has never been diagnosed. There is a backlog in this country with waiting times for the state healthcare so it can take several years but it does piss me off. This is just what they report when attending the office for unemployment which they can write anything without evidence, if they want to claim disability related benefits they do check medical evidence just to be clear!

The problem is that staff seem to just accept what is written because there is a culture of trust or something. A lot of the time people will just tell us they have "mental health" which isn't a diagnosis at all, what does that even mean!

[u/Baboon_ontheMoon]

The online group with high autistic traits reported more symptoms of social anxiety and avoidant personality disorder than the clinically diagnosed group. In fact, their psychiatric profiles resembled those of people who are socially anxious but not necessarily autistic. This suggests that some people who score high on autism trait questionnaires in the general population may actually be describing a different type of social struggle—one rooted more in anxiety than in autism.

This is something this group has suspected about self-diagnosers for a long time.

[u/NoBackupCodes → u/Baboon_ontheMoon]

I wish I had autism without social anxiety.

I think this also comes back to my thoughts that there is more than one type of autism, that there should be better tests using brain scanning and genetics, because the whole 'every autistic person is different' thing. Then what does it really mean if I can go to work and act mask like a functioning person while someone else may be in assisted living because they can't communicate, it's not exactly the same condition is it.

[u/Baboon_ontheMoon → u/NoBackupCodes]

Well, autism is a spectrum (well documented) but take into account how comorbidities can drastically change the way an autistic person presents as a whole.

You would likely present differently if you just had autism without social anxiety

I would present differently if I had just autism without ADHD and OCD.

We’re still autistic - which has variance - but a significant amount of our difficulties with functioning in various areas are exacerbated by our other conditions.

[u/NoBackupCodes → u/Baboon_ontheMoon]

True, but even with pure autism some are non verbal so I dunno. The whole autism label doesn't fit well in my mind as a diagnosis. Being "weird" is probably a better description :😅

[u/Murky-South9706]

It goes both ways, too, though. For example, when I was assessed there were some questions that I didn't understand and were marked down as "doesn't have any issues with this thing" but I just didn't understand what they meant. After learning what they meant, I was like wow I actually struggle with that quite a bit. So my report says I don't have any problems with self care, for example, even though I do. When they asked if I struggle with self care, I thought they meant like going to a day spa and getting a manicure, neither of which things I have ever done, so I thought the question didn't apply to me. (That's what people online usually mean when they say self care, they mean pampering yourself hence my confusion at the time of assessment, and the doctor didn't clarify it for me)

[u/ScaffOrig → u/Murky-South9706]

OK, but they should be doing more than just reading the questions off a sheet. For self care the discussions would be more about your typical day, do you find time to wash, oral hygiene, healthy habits, etc.

[u/Murky-South9706 → u/ScaffOrig]

Yes they should be, but they're assholes obviously so they didn't haha

And yeah, I know what self care is, now. It was actually Chatgpt that explained it to me and helped me see what I struggled with. It's hard to determine what I struggle with because they're all normalized for me, but I had Chatgpt ask me specific questions. It helped me a lot with my social security application, too, because they also ask in very specific ways.

It's weird to learn much later that stuff you thought was normal isn't normal

[u/ScaffOrig → u/Murky-South9706]

They sure are. The whole point of the process of having other people do the assessment is because people have these biases. They may as well cut the whole session short with "Question 1: Do you have autism? OK, that's it, please wait here for your results"

[u/Murky-South9706 → u/ScaffOrig]

Basically lol

[u/Oddlem → u/Murky-South9706]

Oooh I had a similar problem but when they did some questionnaires before the assessment about anxiety. They were stuff like “Do you feel happy” on a scale of 5 and I was like… well I’m kind of nervous about this assessment so I marked it low. But it was asking me how I felt in LIFE not at the current moment

I ended up doing that for most of the questions and I probably came across as unstable. I hate when they give those out and don’t give you any help answering them, esp if you could be autistic!! 😠

[u/Murky-South9706 → u/Oddlem]

Exactly!

[u/snarfalotzzz]

They accept self-diagnosis in my AANE support group. I really like AANE, so I don't mean to bash it, but they also open it up to ADHD. It's just at one point the diagnosis and community will cease to mean anything. This condition makes my life so difficult. Seeing perfectly functioning friends with incredible careers and amazing social skills say they are on the spectrum without a diagnosis always seems a bit...weird. You can have a cluster of the traits and not have ASD. That's why there's all those criteria. Never mind the necessity of Criteria D, which no one seems to care about.

[u/Fearless_pineaplle]

im so glad yhat that scientist and reserchrs are finally speaking out against this ableism and harmful actionas froum from the self dxers and others who hurt us constantly

[u/ParParChonkyCat22 → u/Fearless_pineaplle]

I'm glad too

[u/proto-typicality]

This is an awesome study, but I think you’re kinda misreading it. It’s not about those online autism tests people use, it’s about psychometrically-validated take-home instruments being less accurate than actual clinical evaluation and in-person psychometric instrument use.

This is important for research and clinical intervention but it’s got little to do with those online tests, which everyone already knows can’t diagnose autism.

[u/ScaffOrig → u/proto-typicality]

The thing is a lot of the online tests ARE those instruments (or as close as). They may not have the whole suite of a thorough autism assessment, but they will often use things like AQ. So basically people take these tests, and based on the score report themselves as autistic. ADHD screeners also have the same problem of self-reporting, but also have extremely low PPV anyway https://www.sciencedirect.com/science/article/pii/S0010440X2100002X

Importantly, in both situations, these are medical tools used in ways that are demonstrably incorrect, and yet have people requesting accommodations and filling up ASD/ADHD support.

[u/proto-typicality → u/ScaffOrig]

Would you have links to those online autism tests? Like, are people literally posting validated psychometric instruments online?

I’m not sure I understand your second point or how it relates to the online tests. They are not accepted disability documentation if you want government or nonprofit or educational support.

And if people are just asking their friends to accommodate them, that’s fine and I’m really uninterested in policing that. It’s good, even. Cut curb effect in action.

[u/FVCarterPrivateEye → u/proto-typicality]

I don't want to give them traffic, but the predatory disinformation site embrace-autism offers questionnaires including the RAADS-R, CAT-Q, and AQ that are all legitimate tools in formal evaluation settings (but lose all usefulness when self-administered)

[u/SomewhatOdd793 → u/FVCarterPrivateEye]

I can't stand the embrace-autism site.

Also when I've taken online tests I find some of the questions hard to answer. An in person assessment is the only way to diagnose autism - these online tests are not only very prone to bias but an in person interview can iron out the points where questions are confusing, self answer tests can only say so much.

I find it really odd how people claim autism official diagnosis is a privilege but an official diagnosis of depression or bipolar is not a privilege.

[u/FVCarterPrivateEye → u/SomewhatOdd793]

And the RAADS-R is specifically designed to only work under the accompaniment of a professional, it's why the questions are so vague

[u/ParParChonkyCat22]

I'm posting the link to the article here because I feel like whenever posts are made the link needs to be posted too for everyone to read https://www.nature.com/articles/s44220-025-00385-8

Edit: I think this is the wrong link hold on Edit 2: Fixed it

[u/Fearless_pineaplle]

please keep posting theses studfys please

[u/Curious_Dog2528]

Not a surprise at all. At a recent autism panel one of the woman suggested we find out are autism neurotype by taking an online test from the terrible autism speaks. She also said she had services and her kids diagnosed with autism through autism speak.

If she knew the horrors that organization is capable of

[u/FVCarterPrivateEye]

I'm gonna add this resource to my post I wrote here

[u/andreacitadel]

Say it louder for the ones in the back. Im already dreading all the self-dx bs coming next month

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

Removed for breaking Rule 5: Support for self-diagnosing is forbidden.

We don't allow self-diagnosed people on the sub. We also don't tolerate support for self-diagnosing even if you are autistic yourself.