r/science • u/mvea 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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51

u/wakeupgucci666 5d ago

Why does everyone self-diagnose and claim their autistic anyway?

58

u/mosflyimtired 5d ago

An appointment to diagnose an adult is hard to find (many doctors only do kids) and costs thousands.

42

u/ThrowawayusGenerica 5d ago

Or if you're in a country with socialised healthcare like the UK, it's free but the waiting list is literal decades long. We've essentially taken to using public healthcare funding to pay for private referrals, with...mixed results.

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u/Cheeseburgers89 5d ago

Canada has socialized healthcare and an assessment is still thousands of dollars

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u/GoGoRoloPolo 5d ago

I considered myself lucky when my wait for an autism assessment was "only" 3 years long.

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u/harlemrr 5d ago

Often because it is expensive and if you make it to adulthood, the tests are not covered by insurance. Some doctors also have the opinion of “why bother - you know we don’t give you drugs for this, right?”

It makes sense why some people self diagnose as opposed to dropping a couple grand out of pocket. (This applies to the US, can’t speak to other countries)

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u/ZealousidealSolid715 5d ago

I was told by several psychiatrists that I am very likely autistic, but I cannot afford a formal diagnosis as there is literally no place that accepts my insurance that also does adult autism assessments. I wasn't diagnosed as a kid because I was a girl so they said I only had adhd. I was also medically neglected and abused as a child. I would much rather get a formal diagnosis (or an exclusion of it), then consider myself self-diagnosed. But I cannot.

Most people I know who self diagnose do so for similar reasons, lack of access to healthcare. (in the US).

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u/SocDemGenZGaytheist 5d ago edited 5d ago

The framework of autism offers a lot of very helpful tools to describe, explain, and alleviate unpleasant experiences.

  • "Why does this feel so intense and overwhelming to me but not others?" Sensory overload or overstimulation is an autism/ADHD symptom where one experiences more intense and/or unfamiliar sensory stimuli than they can process at once, with unpleasant effects like irritability or even "meltdowns." I'd compare it to being cranky from sleep deprivation. Overstimulation is treatable by reducing sensory input. Examples include ear plugs, sunglasses, or just taking a break sitting in the dark.
  • "Why is it so painfully hard to work on this task I really want to complete?" Executive dysfunction is a very frustrating and disabling autism/ADHD symptom analogous to lacking energy. It impairs one's ability to focus, switch tasks, or work. The most frustrating part is struggling to expend effort despite wanting to, which to outsiders is indistinguishable from laziness. Executive dysfunction is highly genetically heritable, like autism and ADHD. It is treatable primarily with stimulants. Examples include coffee, Adderall, and Ritalin.
  • "Why am I so tired, distressed, and depressed after socializing?" Autistic masking is the effortful suppression of one's autistic traits and mimicry of neurotypicals' traits to socialize with them better. Masking can inflict what we call autistic burnout, an unpleasant exhaustion comparable to that caused by overworking.

These concepts are defined within, and depend on, the psychiatric frameworks of autism and ADHD.

When you challenge someone's self-diagnosis as autistic and/or ADHD, you threaten to shatter the conceptual framework underlying the coping mechanisms that they use for daily functioning.

They will respond accordingly.

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u/Iucidium 5d ago

TikTok told them.

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u/every_piece_matters 5d ago

They need to feel like they're different and special. They think being normal would make them boring.

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u/Aaron_Hamm 5d ago

Bro I'd love to be able to have "normal" social interactions

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u/every_piece_matters 5d ago

And I'd love to be allowed to opt out of socializing altogether.

What is a normal social interaction anyways?

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u/Aaron_Hamm 5d ago

Congrats on being an introvert? I don't know what to say to you or why you wanted to say that to me...

This here? Not a normal social interaction.

Edit: oh you're a child

-6

u/every_piece_matters 5d ago

A child with an amazing career, a spouse, my own home, and financial independence. Wait...?

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u/Hubbub5515bh 5d ago

Being socially awkward isn’t only caused by autism…

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u/jupiterLILY 5d ago

Self diagnosis is a process that takes years and a huge amount of research. 

This idea that it’s just people watching a tik tok or taking a quiz is really disingenuous and damaging. 

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u/prepend 5d ago

Self diagnosis is not anything systematic or dependable. It's someone who thinks something about themself.

I will get a proper, actionable diagnosis before telling people about it. But even then, I don't think I'll tell anyone.

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u/jupiterLILY 5d ago

Consider yourself lucky to have the resources and capabilities to be able to keep it to yourself. 

Self diagnosis involves an actual diagnostic process. It’s not just having a big think. It involves learning about your history, other potential diagnoses and explanations for behaviour and exploring those. 

I’m sorry that people don’t like that words have definitions and meanings. 

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u/prepend 5d ago

Self diagnosis involves an actual diagnostic process

Yours perhaps. But there's no accepted process for self diagnosis and no validation other than people's assertion.

I think every one understands what self diagnosis is. It's just that it is not very actionable as it may be wrong in so many different ways.

It's also ok not to self diagnose. As an adult discovering they have autism they can do the exact same thing for self care as someone who isn't autistic but has autistic characteristics.

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u/jupiterLILY 5d ago

No, not just mine. 

Diagnosis is a word with a specific definition. 

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u/prepend 5d ago

Clinical diagnosis is very different from self diagnosis.

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u/anamelesscloud1 5d ago

It's not systematic, though. You can't possibly speak to a process, because there is none. That's the point.

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u/jupiterLILY 5d ago

You can’t design a system that works for everyone. We certainly haven’t yet. 

As I said, our systems recently believed that you couldn’t have adhd and autism at the same time. 

Our systems diagnosed traumatised autistic women with bpd instead. 

Our systems didn’t even bother assessing black and brown children. And just put the boys in jail. 

A systematic process isn’t a fail safe.

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u/prepend 5d ago

The idea isn't to design a system that works for everyone. The idea is to design the best possible system that results in the lowest rate of error and harm to patients.

I don't think anyone claims that healthcare is perfect. And it's certainly difficult to diagnose autism (and many other conditions). But the idea of a clinician assessing and diagnosing is to lessen the chance of misdiagnosis and harm.

I mean people do their own home trepanning, but using a board certified brain surgeon is probably going to have better results. Even if I can't afford a neurosurgeon, I think I'm better off waiting for care than drilling a hole in my head.

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u/stevegood-man 5d ago edited 5d ago

What it sounds like you're describing is a process that you identified that was as intensive as possible. While that's likely much more substantive than watching viral content, it's not proscribed anywhere to do option a) that is rigorous and not option b) that is watching some youtubes.

DIY research often gets people to believe flat earth or that vaccines cause autism, no matter how much accessible, quality information exists to the contrary. It's hard for people to do-your-own-research themselves into a result that doesn't arrive them at the conclusion they are invested in.

Not everyone who uses self diagnosis to find community or to access supports are engaging from a strong desire for a particular result. But, for people who do have a strong desire for a particular label, they do so without having a way of getting directed to a "null" outcome. Even trained professionals are evaluated by others to avoid biased self-insight, etc.

On one hand, do I think my coworker who identifies with conditions from tiktok (and has suggested diagnoses I should consider for myself for random medical conditions based on little or no information) is causing themselves much harm? I'd guess this can be the case if it stops them from getting needed treatment for other conditions, but in a vacuum, probably not.

Whether the lack of consensus for what self-diagnosis should entail impacts people who rely on self-diagnosis, and use as rigorous and self-reflective approaches as they can, is a different conversation. The strict, simple meaning of self-diagnosis (ie, without a trained professional) does include people who fix on something without doing anything resembling research. If you're referring to a particular protocol or conceptual framework for self-diagnosis that you consider to be the standard, that would probably be differentiated by most people from generic "self-diagnosing".

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u/TimelySpring 5d ago edited 5d ago

No, there’s a huge wave of people misconstruing any idiosyncrasies / perception of being misunderstood / lack of social awareness or practice as autism.

Autism is a neuro developmental disorder. Full stop. If your developmental deficits meet the clinical criteria for Autism, it seems fit to receive a diagnosis. People in need developmentally need help. This makes sense.

Broad autism phenotype is not autism. This is as much of a personality type as “omg I’m so ocd” is.

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u/jupiterLILY 5d ago

Yes. This is what people say about me and my autism. 

I look normal at the pub so therefore I must not be autistic.

Autism is about so much more than social stuff.

Self diagnosis is a process that takes years. Someone that watched a video and took a quiz one afternoon didn’t self diagnose. 

11

u/TimelySpring 5d ago

I’m not talking about you at all, actually. If you have developmental issues that’s not for me to decide. But do not deny there is a ton of misinformation about autism right now.

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u/jupiterLILY 5d ago

You literally are talking about me. I’m self diagnosed. I couldn’t afford the 2k but could see an autism specialist for something else and was able to have these conversations on the sly when being diagnosed for something that has medication available. 

I’m not denying that there’s misinformation. I’m literally correcting it. 

I’m saying that self diagnosis is a process that takes a long time and a lot of research. It’s not just watching a tiktok and deciding you have autism. People who did that did not self diagnose. 

That’s a damaging assumption made by people who aren’t autistic. 

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u/TimelySpring 5d ago

You’re criteria for “self diagnosis” isn’t everybody’s who are self diagnosing. If you can’t see that’s what I was saying then I can’t help you. But that is what I was referring to, to spell it out for you. Please do not put words in my mouth. I have no interest in discussing this further.

That is the issue for self diagnosis though. There’s zero regulation to it so to speak. Your parameters are not everyone else’s.

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u/jupiterLILY 5d ago

Nobody’s criteria for anything is identical. 

But it’s the autistic communities criteria, it’s the psychiatrists criteria.

I’m sorry you don’t like what I’m saying. That doesn’t make your assumptions correct. 

13

u/TimelySpring 5d ago

Again, you are missing my point and making this about your perception and parameters. This isn’t constructive dialogue so let’s stop.

8

u/prepend 5d ago

The difference is that you are fairly certain that you are autistic, but the reason for a clinical diagnosis is to filter out people who think they are autistic vs people who are.

I'm sure you spent a lot of effort in researching your condition, but it's difficult to differentiate you vs people who watched tiktok. At least with a clinical diagnosis, there's formal training, liability, etc.

Who are you to critique someone else's self-diagnosis process?

5

u/lady_ninane 5d ago

but the reason for a clinical diagnosis is to filter out people who think they are autistic vs people who are.

That is not the reason for a clinical diagnosis. That is a byproduct.

The reason for a clinical diagnosis is so that someone can actually get the healthcare they need within a clinical setting - as well as the legal accommodations they are entitled to as someone with that diagnosis. However, this process is not flawless. This means people can be denied that access to healthcare and accommodations despite actually needing it.

The problem with the concerns you've raised is that we are entirely shutting off the critical discussion about why we are ok with denying people access to care for fear they don't tick an insurance company's criteria. (criteria they are incentivized to keep as narrow and difficult to define as as possible in order to protect their profits) The harm this causes to those vulnerable populations is astronomical - all because we are worried that maybe someone might be mislead on the internet. This is a double standard we don't hold with almost any other health concern that people develop, but suddenly we're about to go scorched earth over this issue in particular.

The perversion of this particular discussion unmasks an ugly reality about how we understand what is and isn't ok for neurodivergency to simply exist alongside us, to accept that people are different than us and might need different accommodations than others have. And the fact that it's masked as concern for this population, despite the overwhelming consensus by these people in these discussions pushing for something that will harm the group of concern greatly, is kinda nauseating.

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u/Abomb 5d ago

There's also a lot of misinformation about Autism on the internet leading people to incorrectly disgnose themselves when they are just a normal amount of bit off and hurts those who have the actual condition since now "everyone who diagnosed themselves can relate" when I'm reality they can't.  

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u/prepend 5d ago

I think access to care is a big problem. And I think it contributes to more self care than is best for people.

I don't think someone self-diagnosing themself with autism detracts from the topic of access to healthcare. There can be multiple wrong things at the same time.

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u/Tri-ranaceratops 5d ago

There is no process to self diagnosis, it need not take any amount of time and zero research. You may have your own standards that you apply to your self, but the nature of self diagnosis means that this can vary.

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u/jupiterLILY 5d ago

It’s actually a term with a specific definition. 

But go off. 

And our “process” of diagnosis isn’t infalliable. Until very recently we didn’t think people could have adhd and autism. POC were criminalised instead of diagnosed and women were diagnosed with our modern version of hysteria. 

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u/Tri-ranaceratops 5d ago

What's your specific definition? I just looked up the term, and there was nothing revolutionary about it, nothing that contradicts anything that's been said to you so far.

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u/jupiterLILY 5d ago

the identification of the nature of an illness or other problem by examination of the symptoms.

If you’re watching a video on tiktok or taking a quiz in an afternoon you haven’t identified a medical problem or examined the symptoms. 

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u/Tri-ranaceratops 5d ago

What do you think these words mean? To examine is too inspect something closely. If I observe you sneezing then observe your red nose and chesty cough, pronouncing a diagnosis of a "cold", I have 100% completed a self diagnosis. Watching a tiktok is not even necessary

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u/jupiterLILY 5d ago

Yes, a cold is generally much simpler to diagnose than a developmental disorder. 

I agree that tiktok isn’t a requirement for either. 

You’re familiar enough with the symptoms of a cold to be able to correctly identify it. 

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u/Tri-ranaceratops 5d ago

I don't think you're understanding the point of my comment. The terms "examine" and "symptoms" aren't exclusive to a rigid diagnosis, and can be applied individually when outside of established medical practice.

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u/jupiterLILY 5d ago

I understand you just fine.

Your point was pedantic and unrealistic.

I’m trying to explain to folks how this works in practice. I’m not here to argue with non autistic people about how autistic people and the community functions.

Either take the insight or don’t.

But don’t act like you know better or that I just don’t understand. 

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u/Tri-ranaceratops 5d ago

Yeah... that doesn't contradict anything I've said or that other posters have said to you.

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u/Just-Feedback-2223 5d ago

Please try to understand what the article is about before commenting so the comments aren’t full of off topic comments! Many people out there claim they’re native without having any knowledge of direct lineage. Why do they do that?

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u/AzuleEyes 5d ago

A diagnosis makes some people feel special.

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u/erabeus 5d ago

Is this “everyone” in the room with us right now?

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u/Hubbub5515bh 5d ago

They want to assign their symptoms to trendy disorders instead of you know getting diagnosed by a professional.

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u/kevje72 5d ago

'Everyone' does it because they need help. Tiktok isnt everyone, thats just your average grifter creating ragebait content.