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/ScienceIsSexy420 5d ago

I took a self assessment online that told me I had "a high chance of being on the spectrum", and my reaction was "Wow, I guess I should talk to a professional about it". That's what finally got me into therapy.

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u/Hedwing 5d ago

Exactly. I think self assessments like the RADS-R test are good if you suspect you might have ASD, and if you do it and score highly, from there you can pursue an actual diagnosis/discuss with your therapist. For lots of people they are a jumping off point to finding out what’s going on with them, whatever the actual diagnosis might be.

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u/SenorSplashdamage 5d ago

The entire “wow, self assessments aren’t a diagnosis” snark above feels like part of a bigger problem in people’s thinking when there’s an overall contempt and underestimation of the intelligence of others. It shows up a lot in faulty thinking online where people react to headlines or news from the position that everyone else is stupid and will come to the stupidest conclusion possible.

There’s even an academic theory on it called Third-person Effect where it examines this gap people have for how gullible they believe the crowd is vs how savvy they see themselves as. The wider that gap, the more socially negative behavior emerges and, unsurprisingly, the more wrong the person usually is.

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u/Monday0987 5d ago

Self assessment could be skewed by what results outcome the person wants to see. There is emotion involved not just intelligence.

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u/SenorSplashdamage 5d ago

The point is more the underestimation of others being more likely to misinterpret and misuse a tool than we ourselves would be, whether that’s raw intelligence or something like thinking others have more issues with emotions clouding judgment.

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u/thefirelink 5d ago

It's widely known that people self report inaccurately. If you want to self diagnose, go for it, but I've seen people self diagnose then seek out therapist after therapist after therapist in order to find one that will validate their self diagnosis.

It's a good thing to do if your goal is to gauge if you should seek a more professional opinion, imo, but that's about it.

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u/draggingonfeetofclay 5d ago

A lot of those views are imo also coincidentally formed by the environment people live and work in.

I had a boss at a supermarket who had a low opinion of other people. He constantly had a lot of negative experiences with stupid customers. Most intelligent customers never make trouble and remain polite, so he'd forget them and it wouldn't stress him. But the negative experiences stuck.

I feel like a lot of people just happen to form these impressions because a lot of the time, people interact daily with other people where they are in charge and know everything about the topic, while their customers/supplicants/students don't and as a consequence, many people form the impression that the rest of the world is stupid.

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u/SenorSplashdamage 5d ago

I’m sure there are environments that make people prone to confirmation bias worse.

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u/draggingonfeetofclay 4d ago

I know not everyone is like that in an environment like that, but I've seen it happen. Guys like him live hand to mouth and paycheck to paycheck and they give you confused stares when you start with intellectual topics or statistics and stuff like that.

I know there's a way to explain his confirmation bias to him, but it's hard and I don't work there anymore.

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u/datsyukdangles 5d ago

the problem is that people who suspect they have ASD are taking these tests wanting/expecting a certain answer, and how they answer the questions are heavily influenced by the outcome they want/expect, even if they don't realize it or try not to be influenced by it. People are simply terrible at judging their own behaviors. If you are already at the point of wanting to take a self-assessment for ASD, you are almost certainly going to answer in a specific way that will give you a score indicating ASD. I cannot begin to tell you how many patients I have seen who take self-assessments, self-diagnose themselves with ASD/bipolar/ADHD/DID/epilepsy/[insert just about any condition], then simply refuse to accept multiple psychologists and doctors telling them they do not meet the diagnosis for whatever they diagnosed themselves with. These patients often come back multiple times showing new extreme behaviors and disclosing more dramatic symptom that they believe will align with getting a diagnosis for something they do not have (many times becoming violent over not being given a diagnosis). They build up their identity around these self-assessments, and create a self-fulfilling prophecy of sorts where the identity is driving the behaviors.

The other problem is being given a label, whether by self-assessment or not (but especially by self-assessment) actually has a very clear and observable effect on behavior. People who are labeled as something, or label themselves/identify with something, shape their behavior to align with that label (consciously or unconsciously). This also includes when they absolutely meet diagnostic criteria. That is actually one of the major downfalls of official diagnosis and why psychologists are very careful in their approach to diagnosis because it absolutely can make things worse or make behaviors more persistent.

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u/PsyOmega 5d ago

RADS-R

I tried this test, and while it gave me an extremely high score, i think the test is flawed. I was picking apart the semantics of every question as I went as very few of them were very direct questions.

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u/microgirlActual 5d ago

Ehh, coming from the clinical psychologist who diagnosed me, that's actually one of the top criteria they use. As in, it's deliberately designed like that. Because your average neurotypical doesn't need the questions to be as explicit and direct as your average ASD person, because they don't get as bogged down in detail and ambiguity as we seem to.

As an example, part of my assessment was a metric fuckton of questionnaires to bring home to answer, and while some of my answers were one word or one sentence, I had others where I had to give a whole page of context to my answer. When I met up with him after giving him the answers I apologised about some of them being so long and wordy and explained that it was because there wasn't really a straight answer because the "Yes" or "No" or "Sometimes" or whatever the answer was was very dependent on context and so I had to clarify etc and he just gave me this wry look and said "Yes, I know, don't worry. This is the strongest evidence I have so far that you're autistic, and not ADHD"

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u/PsyOmega 5d ago

I did have a suspicion the test was geared that way, for that reason.

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u/Elemteearkay 5d ago

I was picking apart the semantics of every question as I went as very few of them were very direct questions.

Not being funny, but that certainly sounds like something an autistic person would do...

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u/Amoreke85 5d ago

iI sort of got diagnosed while doing my master’s degree. Now the problem is that life happened and I’m quite down and trying to find a therapist … since 2023… 0 of the ones that put me in waiting list have got back. I hope you have better luck

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u/Drnk_watcher 5d ago

You did the right thing.

There is nothing wrong with using the Internet or other resources to gain an understanding of what you might be at risk for, or need help with.

The key difference is that when your research leads you to the conclusion you might be onto something, or you're still not sure then you need to consult a professional. Let them determine the specifics and the best path forward. Which you did, and hopefully it is helping you.

A lot of people self diagnose, don't seek real help, don't do anything to making things better, and then use their self diagnosis to behave badly or claim special privileges. That's the problem.

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u/PsychologicalLuck343 5d ago

Same, after being told by two other people that I should get tested.

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u/SE7ENfeet 5d ago

I took the online tests after being told to do it by my wife. My scores were higher when I took them with her correcting me when I wasn't being as honest with myself. That's when I went to get professionally tested. Now I have therapy every week and a low stress job.

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u/PsychologicalLuck343 5d ago

Has your life improved because you found out about having ASD? I was reading today in one of my ND Reddit groups about an adult who was never told as a child that they had autism even though everyone else knew. They thought being labeled his whole childhood would be a disservice.

I really feel that most people don't understand how much anguish is involved in trying to get through days made for allistics.

What many empolyers find out, is that accommodating for austism usually makes everyone else around them more comfortable when noise is lessened and fluorescent lights are turned off and they have some privacy at some point in the day.

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u/SE7ENfeet 5d ago

YES! Resounding yes. I luckily work at a public charter high school that has a large number of neurodivergent people and I get to use my brain to help kids like me. Knowing has made it infinitely easier to understand myself and help others to do the same.

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u/PsychologicalLuck343 4d ago

It's weird how learning I have autism gives me the impetus I didn't have before to improve my environments everywhere.

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u/jcooli09 5d ago

That is the proper response to that result. That's really all they're good for.

My daughter did it, consulted a professional, and got the internet confirmed. I was pretty proud of her for the way she handled it, and now she's in therapy and does a much better job of handling her life. I'm proud of her.

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u/archfapper 5d ago

What have you done in therapy? I suspect Asperger's/ASD and I've never gotten anything out of therapy

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u/ExistentialNumbness 5d ago

Honestly as someone diagnosed with autism and ADHD, therapy was helpful for learning how to handle my anxiety and work through some aspects of my CPTSD. It didn’t really “help” with the autism, but other people may have had different experiences.

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u/busigirl21 5d ago

What type of therapy have you tried? I found IFS to be incredibly helpful, while CBT was worse than useless for me. I'd do some research on modalities and see if any feel right for you. You can also try to find neurodiverse therapists who can understand you better.

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u/Elemteearkay 5d ago

I've found anger management therapy really helpful for improving my emotional regulation.

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u/busigirl21 5d ago

I think specific kinds of therapy aren't discussed enough at all. So many people don't understand that you can seek out different styles and therapies with more specific goals like EMDR. I understand why many give up with CBT doesn't work for them, many therapists don't even tell clients that there are other options out there.