r/science Professor | Medicine 5d ago

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/VoilaVoilaWashington 5d ago

I've done autism quizzes (which is all the credit I will give them), and one huge issue is that the questions are basically dichotomies: "do you ______?" Then you get to choose always, sometimes, or never.

Great. Do I have trouble maintaining eye contact? I mean, we all do sometimes, right? Then you overthink, if I say sometimes but it's only occasionally, is that sometimes? Or is that below the threshold? So you arbitrarily pick the one that will skew you in the direction you're thinking you'll land anyway.

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u/Alili1996 5d ago

Another issue is that some questions are formulated in a way that takes your current standing into account instead of your general struggles growing up.
So if you as a person learned to deal and cope with a lot of the issues over time, it won't reflect your past struggles appropriately in a survey.
To get back to the eye contact example, as a child i constantly had trouble with it and got called out a lot. Now i've learned to do it properly, but it also requires a certain mental awareness off of me.
If i were to answer the question on my current state, i'd say i have no troubles with it anymore

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u/VoilaVoilaWashington 5d ago

"I don't have a problem with socks! I have a system!"

:)

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u/erm_what_ 5d ago

This comment concerns me because I assumed everyone does

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u/41942319 5d ago

Wait people don't just buy all the same socks so they can just pull out any two and be correct?

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u/ExistentialNumbness 5d ago

I had to learn how to make eye contact and give nonverbal feedback as a child - I’m most comfortable in conversations with my head tucked and not saying anything while listening, but my mom would constantly yell at me because I “wasn’t listening.” So I presented as a lot more neurotypical than I was due to being forced to figure out ways to not have my mom explode in anger at me.

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u/Alili1996 5d ago

having a teacher ask if i paid attention when i was doing this only for me to give an accurate answer and the teacher turning quiet hahaha

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u/electricdwarf 5d ago

This is very much what I was thinking after I took some of those tests. I am nearly two decades on from my autism diagnosis and have learned a LOT of coping methods and have had a lot of life experience. When I was young and in high school I was very much a dweeb and didnt have many friends that werent also absolute weirdos. I started smoking weed at the age of 17 and made friends with people that I am still friends with nearly 15 years later.

So now taking those tests it feels like ive had years of practice masking and its very hard to answer them accurately.

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u/Emu1981 5d ago

So now taking those tests it feels like ive had years of practice masking and its very hard to answer them accurately.

And a good psychiatrist will be able to tell what is masking behaviours and what is not masking behaviours. Personally I have never seen a psychiatrist to get a diagnosis because I don't want to waste the money to get a diagnosis that I don't see any sort of benefits from.

If I got a diagnosis 40 odd years ago and got the same sort of supports that my kids with ASD get these days then chances are that my life would have gone down a very different track though. However, since I was never a troublemaker then I was pretty much ignored even though I absolutely struggled with social situations. When I hit highschool I had learned enough masking behaviours to basically become a popular kid but that ended up with me having a massive burnout near the end of high school.

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u/girlywish 5d ago

Some of the tests specifically ask for two answers on each question, one for now and one for when you were a child.

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u/EntropyNZ 5d ago

That's kind of the point though. There's no such thing as 'normal', and everyone is going to have some aspects of their sensory processing, or social interactions, or cortical processing etc that is 'abnormal/atypical'. But for the majority of people, we're either able to adapt and develop strategies or processes that can mitigate the impacts that these 'atypical' traits would have, or they're minor or encountered infrequently enough that they're not having any significant aspect on your daily life.

The questionnaires that have the best evidence behind them are the ones that are able to identify when these traits are more severe, and impacting daily function. Questions about being affected by a noisy environment are a good example: There's plenty of people who do struggle a bit to focus when they're in a busy or noisy environment; focusing on writing an email in a busy cafe might be a bit challenging, for instance. But for someone with severe autism, them being in that situation could be as overwhelming as having a more neurotypical person trying to sit an incredibly difficult exam, at a heavy metal concert, at a table sitting in front of a giant speaker stack, while every light in the arena is trained on them.

For eye contact, some people are more comfortable with it than others, but it being a bit uncomfortable isn't that much of an issue. It's when you're so overwhelmed that you're near-to (or actually) having an anxiety attack just thinking about being in a situation where you're having to make eye contact.

None of this is to try and disregard people who might have difficulty with social situations, or certain behaviours, that they could very well use some help with. But OCMs for something like Autism are designed to help diagnose patients for who these symptoms are significantly affecting their ability to function, to the point at which they may need medication, or very focused and tailored therapy, in order to help them get through the basics of functioning in modern society. It's a spectrum, sure. But that doesn't mean that anyone who shows any potential symptoms should consider themselves to be on it.

We're in a weird spot, and have been for quite a long while, of society both being open to being more aware of neurodiversity, anatomical or physiological variations that can cause issues but not be 'visible', mental health as a whole etc. Which is all awesome. But the weird part comes from that we've also got this societal desire for everything to have to have a specific label, and we shape our personalities and identities around those labels.

We've seen it plenty with more physical conditions in physiotherapy. For the past 5+ years, conditions like Ehlers-Danlos syndrome have been super 'trendy'. We'll regularly get patients presenting with normal injuries, or mild symptoms who have self-diagnosed with EDS because they somewhat fit a small section of the diagnostic criteria. Trying to tell someone who has a high Beighton score (hypermobility scale) that they're most likely just a bit floppy, and don't have EDS can turn into a really difficult conversation at times, because increasingly often that self-diagnosis has become a part of who they are as a person. ADHD is the same way, and ASD is increasingly becoming so as well.

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u/This-Author-362 5d ago

Yes, and I think it plays into some confirmation bias, if that is even the right way I am trying to explain my opinion, if you really believe deep down you have autism, then your answers in an anonymous survey with no direct interaction with a person is going to skew your results to what you "want".

I always hate the never, sometimes, always and the strongly disagree/strongly agree type questions, I get very worked up overthinking if I am correctly stating how I feel.

I had to google Dichotomy because although I knew the word, didn't know the exact definition or how it is used so thank you. I got my english learning for the morning :D

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u/PsychologicalLuck343 5d ago edited 5d ago

I would imagine most people would simply want to know rather than be determined that they have autism.

As someone recently diagnosed there's no apparent advantage to claiming you are neuro-divergent when you are not. But there is a huge advantage to being able to mitigate your environment in order to accommodate extreme sensitivities. When nobody around you experiences the same sensitivities that autists do, we find that these accommodations are too demanding to ask for.

edited for clarity.

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u/PsychologicalLuck343 5d ago

Not always true. I wanted to be accurate so I worried about what the threshold should be and erred in the direction of less impact. I wrongly thought that my frequency of traits were more frequent than I thought and more troubling than I gave them credit for.

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u/VoilaVoilaWashington 5d ago

Sure, but then we still have the issue that you were deliberately skewing your results. Maybe in the opposite direction, but the issue persists - you have no idea what the person who designed the survey meant with "sometimes", and without a trained person in the room to help give context, you're just guessing.

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u/PsychologicalLuck343 5d ago edited 5d ago

Unfortunately, until we can read minds, it can only be diagnosed by the responses of the subject with the possible disorder. And, get this, they developed the questionnaire by what was observable, not by what kind of stress that is experienced by the patient who may not even realize what her stressors are.

For instance, I hated shopping for clothes but I didn't realize it was because of the lighting and having to interact with people while I was stressed out by the fluorescent lighting.

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u/VoilaVoilaWashington 5d ago

Sure, but again, we're talking about unsupervised, online surveys. Not in-person surveys with someone with training.

We can easily diagnose people in-person, recognizing that it's a spectrum. And there may be better online surveys that exist. I can only speak to the ones I've done.

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u/PsychologicalLuck343 5d ago

It's just not easy when professionals don't know the full spectrum. My therapist told me that I didn't look autistic. Then she diagnosed me with autism. Ihere are tests being redesigned s we speak by non-allistic therapists . They're sorely needed, but not yet available.

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u/Elemteearkay 5d ago

Great. Do I have trouble maintaining eye contact? I mean, we all do sometimes, right? Then you overthink, if I say sometimes but it's only occasionally, is that sometimes? Or is that below the threshold?

As an autistic person myself, I've got to say that this sounds like something one of us would do... (NTs tend not to think like that)

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u/CombatWomble2 5d ago

One thing I noted in reading a few was that how I'd answer NOW is different from how I'd have answered as a teenager.

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u/Frequent_Oil3257 5d ago

I have to not only become aware that I am not looking people in the eyes but then force myself to, and experience considerable anxiety/discomfort from not knowing if I'm holding contact too long. If these are the types of experiences you have I think the questions become more obvious.

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u/willowwife 5d ago

I do any assessment like this with my therapist, because guess what, neurodivergent people typically have more trouble doing these tests than neurotypical people. It's how she screened me for ADHD and ASD, as well as gender dysphoria - it takes the entire session sometimes because I don't understand what all the questions are asking. But she does and explains what the question is actually asking, and helps me figure out which answer fits me best.

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u/homelaberator 5d ago

The thought process probably doesn't matter, since essentially they look at a population and say "people who score this are X likely to have the ASD". The survey doesn't care why you gave an answer, and often doesn't care even about which questions had what responses. It's just spits out a number with a correlation.

But then clinicians will do interviews where they dive deeper into everything and then they actually do care about the answers and the why's.

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u/Tech_Philosophy 5d ago

Do I have trouble maintaining eye contact? I mean, we all do sometimes, right? Then you overthink, if I say sometimes but it's only occasionally, is that sometimes? Or is that below the threshold? So you arbitrarily pick the one that will skew you in the direction you're thinking you'll land anyway.

This was a wild read. You might be on the spectrum.

I say that with love as someone on the spectrum.

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u/VoilaVoilaWashington 5d ago

This is great. A discussion about how online surveys don't work for accurate diagnosing, and someone shows up diagnosing people based on an internet comment.

Also, yeah, it's a spectrum. We're ALL on it.

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u/maybeayri 5d ago

You may have some autistic traits but no, not everyone is on the autism spectrum. That's not how it works for this. The autism spectrum is for describing the range of how one's specific flavor autism impacts an autistic individual. That's because autism doesn't affect everyone who is autistic the same way. It's not like the light spectrum where everything has a color.

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u/funk-the-funk 5d ago

Also, yeah, it's a spectrum. We're ALL on it.

Pretty high horse to fall off of. No, everyone is not. The spectrum includes zero neurotypical individuals.

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u/Elemteearkay 5d ago edited 5d ago

Also, yeah, it's a spectrum. We're ALL on it.

That's utter nonsense, I'm afraid.

If you think that everyone is on the Autism Spectrum - including those who aren't autistic - then you aren't ready to discuss this topic.

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u/datsyukdangles 5d ago

not a single thing this person said is in any way indictive of them being on the spectrum. They are giving an answer that applies to everyone and that everyone thinks when taking vague questionaries. That is the problem with pop faux-psychology, every single human behavior is deemed a symptom and simply describing a normal thought process is taken as evidence of a disorder when it absolutely is not. People see pop-psych posts and videos and think "oh wow I must have xyz because all these things apply to me!" instead of coming to the realization that everything being described applies to just about everyone on earth in some way.

This has caused major problems in actual clinical psychology, and now we are dealing with patients who are becoming violently angry that they are being 'denied' a diagnosis because they think having hobbies/being shy/having literally any thoughts = having a disorder and they have heavily built their identity around a disorder they don't have.