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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u/WernerHerzogEatsShoe 5d ago

Controversial opinion but plenty of psychiatrists are even more useless than an online survey. ive met enough of them to realise that they are often making it up as they go along.

Someone could see 10 different doctors and be given 5 different labels. It's not trustworthy at all.

Not all of them are bad ofc, some are very good.

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u/apocketfullofcows 5d ago

when i asked my therapist at the time about setting up autism testing, she laughed and told me i couldn't be autistic because i have empathy.

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u/Acrobatic-Exam1991 5d ago

Same with my psych. She listed the dsm criteria at me and because i had mentioned i wanted to start dating again she laughed and said autistic people don't go on dates.

I didnt want to waste the whole session arguing about something i would never be able to convince her of anyway so we moved on and never readdressed it, but now i think i have the language knowledge and experience to lay it all out on the table in an understandable and convincing way, so i may bring it up next time.

I didnt ditch her because we have a years long relationship and she has helped me out more than once. Shes a good dr. With a good heart, she just doesn't know anything about autism.

Also, I've been handling my autism issues pretty well myself through research and practice. If things get rough I'll look for an autistic therapist.

I can't fault professionals for knowing next to nothing about autism. It is difficult (impossible?) to understand how different we are and in what ways unless you live the experience

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u/WernerHerzogEatsShoe 5d ago

That sucks, I'm sorry to hear that.

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u/PsyOmega 5d ago

Someone could see 10 different doctors and be given 5 different labels. It's not trustworthy at all.

Someone actually tested this and got a different diagnosis per doctor, purely based off giving the doctors a very linear set of symptoms that should only lead to one conclusion.

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u/munnimann 5d ago

Genuine question, if there is no agreement among medical professionals, therapists, psychiatrists, etc. about what justifies an autism diagnosis, then what criteria are we using to say that any of these people are wrong or right in their diagnosis?

If autism as a condition is so elusive that ten doctors give ten different diagnoses, shouldn't that cast even greater doubt on any diagnosis that a lay person reaches by themselves?

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u/robotnudist 5d ago

My understanding is: there are actually good criteria for diagnosing autism, but many medical professionals have gaps in their knowledge, or even have absorbed misinformation. Medical science is so huge, every doctor can only really know their specialty very well, and even then there are a lot of mediocre ones that don't.

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u/TripAndFly 3d ago

It took a while for me to find a practice that I trust to do a thorough evaluation and provide an honest diagnosis. There are some people who go and see someone for an hour and then get a diagnosis. Which I think is unfair to the patient unless it's accompanied by years of testimonial from other professionals and family members etc etc and even then I think the professional should spend time and form their own opinion.

I have about two more months of interviews, testing, therapy and evaluations before my psychiatrist arrives at a proper diagnosis. They were very upfront with me about how people tend to lock their identity into a self-diagnosis and it can be heartbreaking when their results don't line up but it doesn't mean that how I feel isn't valid or whatever and I just stopped him and said I don't care about any of that I just want to know the truth. my friends have been teasing me about being autistic forever and I always thought they were just giving me a hard time... I joked about it once in a therapy session and my therapist just kind of gave me the side eye and nodded as if to say you might be honest something there. But again I didn't take that seriously until the autistic guy came over to my house and told me a hundred different ways that we were the same...

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u/minuialear 4d ago

The problem isn't that there aren't criteria that can be objectively used to diagnose conditions. The problem usually is that doctors/etc. themselves are biased and come up with their own opinions about the best way to diagnose people, what autism "really" looks like, etc. They often assume certain people don't have it, or don't listen to the patient's description of their symptoms, when they're female or black/brown. They may not actually look at the symptoms while diagnosing the patient to ensure that something they think is/isn't a symptom isn't improperly accounted for/ignored.

I don't know if anyone's researched this for autism but I know there was a study comparing AI diagnoses to doctor diagnoses; 90% of the time the AI did a better job, and doctors who had access to AI to help them out did no better than doctors without it. Doctor bias was cited as one of the reasons why the doctors with AI assistance didn't do any better; while some simply didn't know how to use ChatGPT effectively, those who did simply ignored anything the AI said that they disagreed with.

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u/WernerHerzogEatsShoe 5d ago

Damn that's even worse than I thought based on my anecdotal experiences. Don't suppose you remember who did it? Sounds interesting.

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u/PsyOmega 5d ago

Not the specific case i mentioned but also famously, the Rosenhan experiment.

The one i am talking about, all i remember is watching the body-cam footage the person took at each one. I don't think it was formally published and im having a hard time finding it again.

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u/WernerHerzogEatsShoe 15h ago

Oh yeah I remember reading about the rosenhan experiment. Although I can kinda see some validity in the criticisms of it.

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u/Buttercup134 5d ago

This statement is for people living in the U.S. or Canada. While psychiatrists can diagnose mental health conditions and conduct psychological testing, they aren't as extensively trained in these assessments as clinical psychologists are. Clinical psychologists, on the other hand, are specifically trained in a wide range of psychological assessments and utilize various tools to not only diagnose but also to rule out other potential causes of symptoms.

Sorry if this sounds blunt but it's my area of expertise( and I am extremely passionate about it), and there's a lot of misinformation online, as well as some therapists who don't provide accurate information about the mental health field.

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u/WernerHerzogEatsShoe 5d ago

I'm in the UK. There are good ones out there for sure, but as a profession I am very sceptical to say the least. My default position when encountering them is to remain sceptical, until proven otherwise.

I'd actually trust clinical psychologists more based on my anecdotal experiences.