r/psychology • u/mvea MD-PhD-MBA | Clinical Professor/Medicine • 6d ago
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/80
u/mvea MD-PhD-MBA | Clinical Professor/Medicine 6d ago
I’ve linked to the news release in the post above. In this comment, for those interested, here’s the link to the peer reviewed journal article:
https://www.nature.com/articles/s44220-025-00385-8
Abstract
While allowing for rapid recruitment of large samples, online research relies heavily on participants’ self-reports of neuropsychiatric traits, foregoing the clinical characterizations available in laboratory settings. Autism spectrum disorder (ASD) research is one example for which the clinical validity of such an approach remains elusive. Here we compared 56 adults with ASD recruited in person and evaluated by clinicians to matched samples of adults recruited through an online platform (Prolific; 56 with high autistic traits and 56 with low autistic traits) and evaluated via self-reported surveys. Despite having comparable self-reported autistic traits, the online high-trait group reported significantly more social anxiety and avoidant symptoms than in-person ASD participants. Within the in-person sample, there was no relationship between self-rated and clinician-rated autistic traits, suggesting they may capture different aspects of ASD. The groups also differed in their social tendencies during two decision-making tasks; the in-person ASD group was less perceptive of opportunities for social influence and acted less affiliative toward virtual characters. These findings highlight the need for a differentiation between clinically ascertained and trait-defined samples in autism research.
From the linked article:
New study finds online self-reports may not accurately reflect clinical autism diagnoses
A new study published in Nature Mental Health suggests that 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. Although these two groups may appear similar on paper, the study found meaningful differences in their social interactions, mental health symptoms, and the way they perceive and influence others during social tasks. The findings raise questions about the widespread reliance on self-report surveys in online autism research and suggest that diagnostic evaluations by trained professionals remain essential.
The results showed that although the high-trait online group and the in-person autism group reported similar levels of autistic traits, their profiles differed in key ways. 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.
One of the most striking findings came from the comparison between self-report and clinical assessment. Among participants with a confirmed autism diagnosis, there was no meaningful relationship between how they rated their own symptoms and how clinicians rated them. This held true for both core domains of autism: repetitive behaviors and social communication. The two types of measures seemed to capture different aspects of the condition—one reflecting internal experience and the other focusing on observable behavior.
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u/HomeWasGood 6d ago
One important thing to know is that professional assessment from a psychologist still includes self-assessment in various ways (self-report and questionnaires), so we don't outright reject a person's own self perception.
We just combine it with various other ways of observing traits. It could be questionnaires from people who know you or a structured assessment by a trained observer like an ADOS. And we also include ways of ruling out anything that could be mimicking autism. Ruling things out is just as important as identifying things.
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u/vienibenmio 6d ago
Also it's more than checking off boxes. Differential is the hard part, and that's where you need a professional
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u/GuilleJiCan 6d ago
Yeah. I still think that autism is not correctly defined in the dsm V and official diagnostic tools. It has a lot of trouble when social behavior has been learned, which is a frequent occurence in both women and adult autists. A good diagnostic tool should account for that.
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u/scumtart 6d ago
This is interesting. I'm diagnosed with level 2 ASD but I actually score quite low on a lot of diagnostics that you can find online (relatively official ones that I've also completed as part of my ASD assessment, not random internet quizzes). I believe I discussed this with my psychologist at the time, but I find pretty much every test for autism to have at least a few very inaccurate and outdated questions.
A few common questions I always see on ASD diagnostic tests are essentially asking if one is an introvert; 'Do you prefer to go to libraries over parties?' 'Do you prefer to do things with others or on your own?' etc... Sure, autistic people are more likely to be introverts and be somewhat independent, but from my personal experience being friends with a lot of autistic people and all the knowledge I have on autism doesn't point to the disorder leading inherently to an anxious or introverted personality. It's part of the reason I was never assessed as a child, because I was actually quite socially confident and extroverted, and only became introverted over time due to repeated rejections of my social behaviours.
The tendency to equate anxiety and introversion with autism in a lot of diagnostic material seems like it could contribute to this mismatch between self-perception and reality for a lot of people who think they're autistic.
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u/PrismaticError 6d ago
I mean, it kind of makes sense that people who spend a lot of time online would have more anxiety or more affinity for virtual characters. Also, I got my diagnosis from a woman who scored me very high on black and white thinking because I told her that I think a lot of American cops are nice people in their day to day lives they're still contributing to and protecting an inherently unjust system (because she asked me unprompted about my politics for the assessment), and I don't think psychiatrists operating in a couple hours with a client/interpreting what the client self reports are completely authoritative either.
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u/HDK1989 6d ago
One of the most striking findings came from the comparison between self-report and clinical assessment. Among participants with a confirmed autism diagnosis, there was no meaningful relationship between how they rated their own symptoms and how clinicians rated them. This held true for both core domains of autism: repetitive behaviors and social communication. The two types of measures seemed to capture different aspects of the condition—one reflecting internal experience and the other focusing on observable behavior.
This research is basically rubbish. One big reason the self-diagnosis online trend is huge is because of how extremely poor psychiatrists are at diagnosing people outside of the standard white male demographic.
Do you know who's more likely to self-diagnose online without an official diagnosis? Women. Guess what group of people are consistently told they aren't autistic by professionals and gaslit and dismissed?
All this study actually shows is there are discrepancies between what people who self-diagnose say and what physicians say, we've known this for decades. It's not news.
This study doesn't answer what the cause of that discrepancy is, but it's funny how they've blamed anxiety, which is the diagnostic fallback of every lazy or incompetent clinician.
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u/TheBrittca 6d ago edited 6d ago
I’m not surprised and I’m glad this research is being done. I’m clinically diagnosed autistic and I feel self diagnosis can be a slippery slope. I’m not ‘pulling up the ladder’ by saying this, I just don’t want to see folks sharing misinformation online about autism that could negatively affect others wellbeing. So many ‘influencers’ just think autism is being quirky and promote self diagnosis. I cringe.
Edit: Thanks for the upvotes, but I want to clarify my post is not intended to be a knock on self diagnosis. I know this is a complex space in psychology and I respect the paths folks are on in their journey. My post was meant to shed light on my concern about misinformation online leading to mis(self)diagnosis. I wish that sort of thing wasn’t so prevalent.
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u/lawlesslawboy 6d ago
i'm also diagnosed but i was previously self-dx for around two years beforehand (on waiting list for one of those years) but my self-diagnosis involved reading books, doing online tests, speaking to other autistic people and learning about their personal experiences, reading medical studies.. like months and months of research basically.. not "i saw like two tiktoks and did one online survey so now i'm gonna fully ID as autistic and not even mention im self-diagnosed" so ya know, the think the two things are very different, the first is TRUE self-diagnosis, which is more likely to be accurate, the second type is flaming garbage and should not be called self diagnosis
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u/IAmASolipsist 6d ago
Whether intentionally or not what you're describing is fishing for a diagnosis. You looked up all the terms and symptoms you needed to highlight and whether conscious or subconscious that's going to skew how you report your symptoms making it significantly more likely you were not correctly diagnosed.
This happens a lot and is one of the more harmful things about so many people self diagnosing rather than starting off without a condition in mind and just coming in with their base symptoms and letting a medical professional figure it out.
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u/JaiOW2 5d ago
Indeed.
I'm not a clinical psychologist or psychiatrist, but I am educated in the field, and a big challenge I see in online discourse on the topic is that people misunderstand that a core role of a clinician is differential diagnosis, and if you aim to self diagnose the same underlying theory should still apply, you really need to be educated in the entire topic to sort between applicable versions of a similar thing.
An example, suppose we present with the symptoms of inattention spliced with sporadic episodes of hyperfocus. It's very easy to go online and see a term like 'monotropism' which describes how some autistic individuals have a tendency to have a very narrow attentional spotlight and they can appear to be both simultaneously inattentive by missing things outside of it and super attentive to things inside of it. But anxiety can also fit the profile, the stress response by design narrows your attention to focus on very specific things, it can make it difficult to focus on other things and anxious thoughts often intrusively detract attention from other activities, but anxious people often have self soothing activities, it might be something like playing video games, and in these relaxing spaces you may feel an increase ability to focus, mainly because you aren't consumed by anxiety in that moment.
The clinicians job is to work out which of these are causing inattention, on top of ruling out third variables like sleep apnoe and things not causally related to your psyche. An individual self diagnosing is essentially just committing confirmation bias, they tend to educate themselves in the one that initially stands out as applicable or the one they identify with the most, and then reorganise their self schema by introducing new terms and revising how they remember their own symptoms.
And yes, people can very much remember themselves differently by introducing new information that seems applicable or normal to themselves. In 1992 a Danish study had participants report whether or not they had watched footage on TV of a plane that crashed into an apartment in the previous year. About 65% of participants reported they remembered seeing that plane crash into an apartment building on TV, and the same number also reported exact details like the type of plane and what direction. But, there was no footage on this plane ever recorded. People fill in memories or make new memories according to a schema, which is essentially a blueprint based on the most typical understanding of a situation. Most plane crashes are recorded, so people assume it's recorded and use details from other reported plane crashes to craft a memory that's typical. The same can happen with diagnostic items, if you've established for yourself that say autism is the typical explanation for your behaviour, you can reinterpret memories to conform to your explanation.
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u/IAmASolipsist 5d ago
Yeah, and just to expand on you last point, while having autism isn't necessarily a bad thing if you get diagnosed with it it's because it's harming your ability to function...but even if you don't have autism we've seen a number of hysterias and mass hysterias where people have managed to convince themselves into having symptoms of things they don't have.
Just in the US you had that flight in the late 10's where over 100 people convinced themselves they had some strange illness, something like 10 of which had severe enough symptoms they needed to be hospitalized, I believe at the end of the people tested only 3-4 people had a cold or flu. Same with the various studies that have been done on groups of students that have developed mental illness symptoms when they didn't have one or the iranian schoolgirl poisoning thing a couple years ago.
Self-diagnosing can actually make give you the disorder even if you don't have it. And, again, diagnosis is just a tool for treatment, a clinical diagnosis means you are experiencing significant disfunction so this isn't a cute and fun thing...it's a form of self-harm.
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u/lawlesslawboy 5d ago
i've literally had clear symptoms (more clear of adhd but definitely clear autism ones too) since i was a small child, but my parents were abusive and neglectful and also didn't seem to believe in taking their kid to the doctor... but i've been looking into psychology since i was young bc my mum is literally schizophrenic and my older sister is profoundly disabled so i've looked into many many many disorders, even obscure rare ones.. and guess what? most of them aren't remotely relatable bc they don't fit or explain my symptoms but all the ones that do? doctors later confirmed
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u/lawlesslawboy 5d ago
you're right that there's nothing remotely cute or fun about it, i got in trouble constantly in school without intending to, i always forgot homework or my tie or my school diary or my pencil case, i've lost so many things over the years, i struggle to pay attention to anything unless it's like video games or something, i rarely leave my house, there's so much more but point is i've had so many struggles my entire life and i'm literally disabled by these conditions
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u/lawlesslawboy 5d ago
the funny thing is... clinicians have never done anything of the sort for me and missed a bunch of stuff because they weren't even trying and actually managed to misdiagnose because they DIDN'T engage in differential diagnosis.. whereas i myself understand the significance of differential diagnosis and also of diagnostic overshadowing, which seems to occur fairly often actually causing them to miss stuff
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u/lawlesslawboy 5d ago
this makes no sense because i've researched dozens, probably hundreds and both physical and mental disorders and i simply don't relate to most of them? i have schizophrenia and bipolar in my family and i don't relate to those... i relate to depression and anxiety and autism and adhd because i have them
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u/lawlesslawboy 5d ago
also medical professionals are awful WOEFUL at "figuring it out" and you often have to spoon-feed them to get any result at all
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u/coolairpods 6d ago
You should never self diagnose, basically anything ever. Just cause you read a book or two doesn’t make it okay. I went to school for 6 years to learn how to do it.
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u/Same_Low6479 6d ago
I also went to school for 6 years (Clinical Psychology) and I don’t feel comfortable diagnosing it. It’s a SPECIALTY assessment and requires SPECIFIC training that I don’t have. So laypeople are DEFINITELY not qualified.
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u/juh4z 6d ago
Yeah, great, so it costs thousands of dollars and/or takes several years to get a diagnosis, which is totally something everyone (let alone actually autistic people) can handle with no issues whatsoever.
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u/coolairpods 6d ago
Not perfect, but people need to take accountability for their treatment as well. I see your point, but the answer is not, nor will it ever be self diagnosis.
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u/Spaceballs9000 6d ago
And yet self-diagnosis has helped countless people understand themselves and their needs better, forgive themselves a lifetime of struggle, and develop routines and seek the support necessary to make living life much more doable.
I don't see how that's a bad thing in any way.
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u/Equisgirl 5d ago
Self care never bad. But there are many mental health conditions that can account for many traits people self diagnose as “autism.” Differentials takes bucket loads of education, training, and also clinical experience with everything else it might also or instead be. Missing treatment because one is convinced one is autistic but may not be is a tragedy.
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u/lawlesslawboy 6d ago
exactly this!! diagnosis is absolutely a privilege which is why i will continue to support thorough self-diagnosis, especially when someone is either on a waiting list for diagnosis or they're simply in a position where it's unavailable to them, but being thorough is so important because of diagnostic overlap etc. so important to check out other disorders too and do thorough research, talk to people with lived experiences etc. i think valuing this sort of thorough self-diagnosis process is much more beneficial than just saying people shouldn't do it bc they still will... it's like telling teens not to have sex instead of educating them on how to do it more safely, harm reduction is key imo
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u/Same_Low6479 6d ago
The problem with this is that I can think of at least 5 different things that may make someone believe they are on the the spectrum when they aren’t. The big deal is that people will not get the right treatment or accurately understand themselves leading to over identification with a false diagnosis.
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u/lawlesslawboy 6d ago
hence why i highlighted diagnostic overlap and looking into other disorders?? also there often isn't much treatment even available for autism regardless of diagnosis
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u/KokopelliArcher 6d ago
it's like telling teens not to have sex instead of educating them on how to do it more safely
Talk about a false equivalency, yikes.
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u/lawlesslawboy 5d ago
it's something people are gonna do regardless of whether you tell them no. they're either going to be with education or without, with harm reduction in place or without. how is that a false equivalency?🤔
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u/KokopelliArcher 5d ago
Example A is about self diagnosis (pseudoscience), example B is about sexual education...they are similar in this metaphor, but not similar enough to use as an example to use as a reference.
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u/thenakednucleus 5d ago
I am also a psychologist and you need to get off your high horse. We might be the experts on psychopathology, but the patient is the expert on their own mind. Even the greatest assessment will always fall short of a person’s personal experience and inner world. So when a person tells you they identify with the experience of others with a certain disorder, that is to be taken seriously.
If I break my leg and go to my doctor and tell them I think I broke my leg, I’d be mighty pissed if they belittled me for my self diagnosis. I’m the one who feels the pain.
Especially when it comes to mental health, it is a much much bigger issue that people don’t seek out the help they need than that they misdiagnose themselves. Does it happen? Sure. But it’s much preferable over just pretending everything is fine and dandy.
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u/lawlesslawboy 6d ago
well i got all of them correct, meanwhile i've had psychiatrists both miss stuff and misdiagnose soooo
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u/GenericMelon 6d ago edited 6d ago
I'm concerned at some of the responses in this thread as it seems many people haven't actually read the paper. This was a study comparing an online assessment (BAPQ) and an in-person, clinical assessment (ADOS-2). This study is stating that the BAPQ and the ADOS-2 are asking different questions and may not measure the same things, and so someone taking the BAPQ and scoring high for Autistic traits may score low on the ADOS-2.
"Such limited agreement between self- and clinician-rated assessments suggests that they may not be measuring the same features of ASD: whereas self-reported assessments can capture subjective internal experiences, clinician-rated assessments may capture external presentation of traits. Our results suggest that, in ASD, these two domains do not always agree."
This is a very limited study, not only in sample size, but the methodology as well. They go over this in the "limitations" section of their paper. This paper is NOT a study on "self-diagnosis" vs. "clinical diagnosis", but rather a study on the limitations of online surveys in correctly diagnosing ASD, which makes complete sense.
Edit: From the article - “Although our findings highlight discrepancies between self-reported and clinician-rated symptoms, they do not diminish the value of self-report surveys in autism research,” Banker and Gu said. “In fact, self-reports are crucial for understanding individuals’ own experiences, internal distress, and overall wellbeing. They also empower individuals with lived experience to shape narratives about their condition and help to challenge inaccurate assumptions about the reasons behind autistic behaviors. Rather than discounting personal perspectives, our results emphasize caution for researchers in relying solely on self-reported symptom measures when defining or generalizing about diagnostic groups.”
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u/cinnamoncollective 6d ago
This needs to be the top comment. Most people here have indeed not read the paper or don't know how to interpret the findings. They just want their POV confirmed
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u/GenericMelon 6d ago
It's kind of disappointing to see people read and react only to the the headline and not the paper or even the article itself.
"Although our findings highlight discrepancies between self-reported and clinician-rated symptoms, they do not diminish the value of self-report surveys in autism research,” Banker and Gu said. “In fact, self-reports are crucial for understanding individuals’ own experiences, internal distress, and overall wellbeing. They also empower individuals with lived experience to shape narratives about their condition and help to challenge inaccurate assumptions about the reasons behind autistic behaviors. Rather than discounting personal perspectives, our results emphasize caution for researchers in relying solely on self-reported symptom measures when defining or generalizing about diagnostic groups.”
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u/malleynator 6d ago
I’ve seen it frequently enough in the online autism communities that a self-diagnosis is just as valid as a clinical diagnosis. I’m glad they’re doing research on this because self-diagnosis, for anything, shouldn’t been seen as equally valid.
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u/nymrose 6d ago
It’s honestly upsetting to me, I am diagnosed autistic and it hurts to see that even the conversation about validity on self-diagnosis is being entirely shut down in many autistic communities because they think every self-diagnosis is valid. Autism isn’t a personality trait that you can just choose to identify with, it’s a neurodevelopmental disorder that you are born with. It also has overlaps with many other mental health disorders, that’s why you go to a professional psychologist to figure out what it truly is. I think you can obviously suspect that you have autism, I did, but it’s not confirmed til you get a diagnosis.
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u/JustDeetjies 6d ago
It’s honestly upsetting to me, I am diagnosed autistic and it hurts to see that even the conversation about validity on self-diagnosis is being entirely shut down in many autistic communities because they think every self-diagnosis is valid.
I can understand why this would feel upsetting, but I would like to push back on this as well. There are some demographics that struggle with gaining a clinical diagnosis for autism, not because they are not autistic but because how autism manifests in groups or cultures that are different to American/“Western” societies either are dismissed.
Because for the longest time autism and ADHD were studied primarily in young white boys, women and POC have been under diagnosed for decades. This means that for some, the first step in the journey is self diagnosis and reading up on autism and trying to figure out if you actually have autism.
I’m a black woman who does not live in America, and my adhd symptoms were pretty obvious but I only got diagnosed in my thirties partially because I’m a black woman and so how I was socialized meant that I could mask significantly better than most but it was also just missed because it wasn’t seen as something women or POC had. The symptoms simply were ascribed to who we were as people.
And let’s not forget that it can be prohibitively expensive to get a clinical diagnosis.
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u/nymrose 6d ago
I don’t disagree with you, I’m a woman who was diagnosed in my 20s. I had issues throughout my entire childhood that would’ve been glaringly obvious autism if the adults around me knew what female autism looked like, so I completely understand your point.
I understand suspecting autism but it really is hard to trust someone else’s word for self diagnosed autism because you simply have no idea what their research or definition consists of. I constantly see comments on tiktok talking about how they’re autistic because they like chicken nuggets or because loud noises annoy them, it’s setting knowledge about autism back so much when they trivialise and minimise autism like it’s just a quirky cute fun personality trait, when everyone with diagnosed autism knows just how hard it is to live with.
I think if you suspect autism you should strive to get a diagnosis if monetarily possible. If not possible, you can say it’s suspected autism… Because that is really what it is. Assessment of autism takes time because it’s not just cut and dry, it’s assessment of many elements that affect your entire life.
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u/JustDeetjies 6d ago
I understand suspecting autism but it really is hard to trust someone else’s word for self diagnosed autism because you simply have no idea what their research or definition consists of.
Sure, but the same is true of medical professionals- especially when it comes to how women are believed and treated by doctors. Moreover, I personally know of people who are autistic or have adhd who had to get a second assessment because “they didn’t look like” they had it. They did.
I find that if someone gains relief from their symptoms through self diagnosing and treating themselves as though they are autistic then it isn’t harming anyone.
And it’s not like there are huuuge amounts of accommodations or support for autistic people so they aren’t “taking resources”.
I constantly see comments on tiktok talking about how they’re autistic because they like chicken nuggets or because loud noises annoy them, it’s setting knowledge about autism back so much when they trivialise and minimise autism like it’s just a quirky cute fun personality trait, when everyone with diagnosed autism knows just how hard it is to live with.
I definitely see that less often than others, but I tend not to take what I see online as representative of reality, especially not comments. I assume they are trolling or being ironic.
The reality I see irl is that no one wants to have ADHD or autism. No one who is actually neurotypical is going out of their way to be perceived as neurodivergent. Maybe online for clout and attention.
And people have been saying and treating ADHD and autism dismissively and derisively long before social media and TikTok.
I think if you suspect autism you should strive to get a diagnosis if monetarily possible. If not possible, you can say it’s suspected autism…
Eh. Some people cannot afford to. Some people do not have access to professionals who could make the diagnosis. It does not mean they do not have autism. It just means they have not gotten the paperwork to “prove” it. And that can simply add to the trauma of being invalidated constantly that adhd and autistic people experience all the time.
I’ve found being compassionate and taking people at face value has removed any stress or hurt from people self diagnosing or misdiagnosing themselves. Either way, if you are seriously spending months reading about, taking tests or fixated on autism, something is wrong and if it’s autism/avoidant personality/severe anxiety/cPTSD/FAS/head trauma - something is impacting your life to the point you need to try diagnose it.
Because that is really what it is. Assessment of autism takes time because it’s not just cut and dry, it’s assessment of many elements that affect your entire life.
Well yeah. And who would know one’s own life and experiences and struggles the best?
I think you feel how you feel about it and that’s valid and fair, but I think this issue is much more complex and nuanced than simply assuming those self diagnosing themselves are doing so based off four TikTok’s and a need for attention or belonging. There are people like that but I suspect they make significantly fewer of the self diagnosis community. But I could also be very wrong about that.
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u/_Rodavlas 6d ago
The reality I see irl is that no one wants to have ADHD or autism. No one who is actually neurotypical is going out of their way to be perceived as neurodivergent. Maybe online for clout and attention.
Well, that’s where your disconnect is. Because many people crave a dx that makes them different. Self-diagnosed depression and anxiety isn’t quirky enough anymore so now it’s autism etc.
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u/AnObsidianButterfly 6d ago
Yes, I remember when Tumblr absolutely romanticized depression. It was a very chic and fashionable thing at one point in society. That has now shifted from that to autism and ADHD. Mainly because those are seen as more quirky.
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u/lawlesslawboy 4d ago
the thing is they don't romanticise actual depression, actual adhd or autism, or at least anything beyond very mild symptoms, once the condition starts to actually become disabling? it's no longer cool or whatever
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u/janitordreams 6d ago
I've been attending an autistic support group off and on since 2019. It started accepting self-diagnosis in the past couple years. One of the members of the current group told us she self-diagnosed after 24 hours of "research."
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u/scumtart 6d ago
Lol Everyone ik who says this cannot actually point to one real life example of someone doing this who isn't 13. Get a grip y'all, people saying they're autistic or anxious or depressed online by mistake doesn't actually materially affect anyone. And especially if an adult is coming to me and saying I heavily suspect I'm autistic but not officially diagnosed, I'm not going to respond with 'Pfft everyone's self diagnosing these days' because even if you really believe that someone in their 20's 'just wants to feel special', it's still unempathetic and unnecessary. I've always taken the approach that if someone feels the need to self diagnose, even if they don't have it, they probably have something else, because completely developmentally normal people don't 'want' disorders. I'm autistic and personally do not feel that people thinking they're autistic when they're not has any material effect on my life or anyone's lives.
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u/ClumsyPersimmon 6d ago
The thing is that by being so focused on autism, people will reject any other diagnosis. This includes the correct diagnosis, which means people aren’t getting the correct info/support.
You see it online all the time, people being diagnosed with anxiety or whatever instead of autism, then getting a second opinion as they are so desperate to have autism. There’s also a particular trend of people with BPD labelling themselves as autistic instead (likely due to autism being more acceptable).
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u/JustDeetjies 6d ago
The thing is that by being so focused on autism, people will reject any other diagnosis. This includes the correct diagnosis, which means people aren’t getting the correct info/support.
Look, that is true, but sometimes people are misdiagnosed and there is nothing wrong with getting a second opinion. I’ve had a doctor say I was suffering from depression and anxiety for years - but it turns out it was actually untreated adhd that was not considered at the time.
These things happen more frequently, especially to women and POC, than most people realize. There is a study showing that it takes much longer for women than men to get diagnosed for chronic or serious illnesses.
You see it online all the time, people being diagnosed with anxiety or whatever instead of autism, then getting a second opinion as they are so desperate to have autism.
Because maybe it is autism and not anxiety. And seeing you do not know what someone online’s medical history is, this could be an ongoing and serious problem that has negatively impacted their lives.
Yeah some weirdos do self diagnose after a day or watching too many TikTok’s but that is much rarer than people realize and when this happens with autism it does not harm anyone.
There’s also a particular trend of people with BPD labelling themselves as autistic instead (likely due to autism being more acceptable).
This is also because women with autism often get misdiagnosed with BPD, and there are some compelling (but not yet conclusive) arguments and evidence that BPD is not real in the sense that how the symptoms and disorder is described tends to be charged and negative language but the same behavior presented as a symptom of autism has a more neutral explanation and language.
This may be people wanting to be seen to have a more socially accepted diagnosis or it could also be that women with autism are more likely to be misdiagnosed as having BPD.
We don’t know yet.
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u/thenakednucleus 5d ago
It’s much more common for women with autism to get incorrectly diagnosed as BPD than the other way around. But yeah, sure can happen. Calling it a trend is a stretch.
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u/scumtart 5d ago
The thing is autism anxiety and anxiety anxiety is treated medically the exact same way, therapy that targets BPD can also help people without it, so on a purely medical level I don't really see any issue here
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u/KokopelliArcher 6d ago
This, thank you. I cannot trust other people to be acting in good faith when there are so many bad actors.
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u/JustDeetjies 6d ago
Well, that’s where your disconnect is. Because many people crave a dx that makes them different. Self-diagnosed depression and anxiety isn’t quirky enough anymore so now it’s autism etc.
Again, this may be something that happens based on where you live, but again, while I have seen some folks say “everyone is a little autistic/adhd” and other nonsense, it just does not seem particularly prevalent in real life where I am.
I really do think that social media distorts our perception on some things.
There are too many social harms and disadvantages to being ADHD/autistic or even being perceived to have them, so it is rather difficult for me to believe a significant amount of people identify as neurodivergent to be “different”.
Again, I could be wrong.
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u/_Rodavlas 6d ago
It’s more prevalent than you would expect in the various high school and middle school settings I have been exposed to. Admittedly my experience only captures two US states. I agree that it is also prevalent online, although I was referring entirely to real life scenarios
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u/JustDeetjies 6d ago
It’s more prevalent than you would expect in the various high school and middle school settings I have been exposed to. Admittedly my experience only captures two US states. I agree that it is also prevalent online, although I was referring entirely to real life scenarios
That’s fair enough. That’s an absolutely different context and space I would have access to, as I’m not American.
That makes sense! I still don’t think that changes my perspective that much, but I more clearly see how that could be frustrating.
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u/_Rodavlas 6d ago
Totally fair. In general I don’t care how people want to live/identify as it’s not my life to lead.
There are times when it can take away from actual persons with an actual dx and that’s when it’s a problem imo
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u/janitordreams 6d ago
I'm also a clinically diagnosed Black woman, and while it may be true that professional diagnosis is inaccessible to some for various reasons, that doesn't make self-diagnosis the only remedy to correct that. I was diagnosed for free at an autism research center attached to a medical school. There are options, but that assessment (not diagnosis, as an autism diagnosis is not an entitlement) is prohibitively expensive has been repeated so often, I don't think most people suspecting autism even bother researching their options before claiming self-diagnosis anymore. They just assume it's true they won't be able to afford being assessed or they'll be overlooked based on their race or gender and self-diagnose instead.
Also more children of color are being identified nowadays, although there is still room for improvement there. Pushing for more affordable, accessible professional assessment makes more sense than accepting self-diagnosis. Not even every mental health or medical professional has the education and training to assess and diagnose autism. I don't know what makes laypeople think they can. It's fine to suspect you have it. It's not fine to say definitively you have it when it hasn't been formally confirmed. That's a lie.
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u/JustDeetjies 6d ago
I'm also a clinically diagnosed Black woman, and while it may be true that professional diagnosis is inaccessible to some for various reasons, that doesn't make self-diagnosis the only remedy to correct that.
I didn’t say it was. It is however one of the remedies that currently exist for a significant amount of people and for others it can be a first step.
My point is simply this discourse is more nuanced and complex than - self diagnosis is invalid or inherently wrong.
I was diagnosed for free at an autism research center attached to a medical school. There are options, but that assessment (not diagnosis, as an autism diagnosis is not an entitlement) is prohibitively expensive has been repeated so often, I don't think most people suspecting autism even bother researching their options before claiming self-diagnosis anymore.
Again, this may feel accurate but we do not have data to make this determination in either direction.
Moreover, not everyone lives in the same country you do or with access to even knowing how and where to look. The internet is international and other there may be other barriers beyond price.
They just assume it's true they won't be able to afford being assessed or they'll be overlooked based on their race or gender and self-diagnose instead.
Again, we do not have the data to make a statement like this one way or the other and may be true depending on where you live. But that would not be representative of all places.
Also more children of color are being identified nowadays, although there is still room for improvement there.
Again, this depends on where you live, and while fantastic, it is still a recent development and doesn’t take into account how many adults at various ages may only getting a diagnosis as an adult or not at all.
I think this is a case for arguing and understanding self diagnosis while ALSO advocating for resources and assessments more readily available to most people. It does not have to be an either or situation, but a “yes and” or “yes until”.
Pushing for more affordable, accessible professional assessment makes more sense than accepting self-diagnosis.
I think this is a “both” situation because both self diagnosis and official diagnosis can have benefits and serious drawbacks depending on where you live.
Not even every mental health or medical professional has the education and training to assess and diagnose autism. I don't know what makes laypeople think they can. It's fine to suspect you have it. It's not fine to say definitively you have it when it hasn't been formally confirmed. That's a lie.
It’s not a lie because before an official diagnosis existed, people still had autism. We just did not call it that. And that is true of anyone who “correctly” self diagnoses before seeing a doctor. It’s also true after women disproportionately get misdiagnosed as bipolar when they have ADHD or even BPD when they’re autistic.
There is no one definitive way to go about things is the point - there necessarily needs to be space and tools for self diagnosis because right now for a lot of people that is all that is available to them. And whether or not they get an official diagnosis they are still autistic.
Realistically if you misdiagnose yourself as autistic, at most you’ll accommodate yourself, ask for accommodations that may genuinely help you and maybe see a counsellor for an official assessment if medication may be necessary.
Sure, there are bad actors online and irl but that’s true of everything and we should not allow that to colour your perception of things.
And you are correct that there can be quite annoying or aggravating issues with self diagnosis as well.
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u/janitordreams 5d ago
I didn’t say it was. It is however one of the remedies that currently exist for a significant amount of people and for others it can be a first step.
In that case, the first step should be suspecting you're autistic. You can be self-suspecting before seeking out formal assessment without diagnosing yourself. That's what I did for years before I was professionally diagnosed. I don't believe in diagnosing myself with anything as I don't have the credentials or training to do so.
Moreover, not everyone lives in the same country you do or with access to even knowing how and where to look. The internet is international and other there may be other barriers beyond price.
I'm speaking of the US where I live.
Again, we do not have the data to make a statement like this one way or the other and may be true depending on where you live. But that would not be representative of all places.
Again, I'm speaking of the US where I live.
Again, this depends on where you live, and while fantastic, it is still a recent development and doesn’t take into account how many adults at various ages may only getting a diagnosis as an adult or not at all.
I think this is a case for arguing and understanding self diagnosis while ALSO advocating for resources and assessments more readily available to most people. It does not have to be an either or situation, but a “yes and” or “yes until”.
Again, I'm in the US. I'm late-diagnosed and that doesn't change anything. It doesn't justify self-diagnosis. It's an either/or situation and "no never" to me when it comes to self-diagnosis. No one is owed a diagnosis.
It’s not a lie because before an official diagnosis existed, people still had autism. We just did not call it that. And that is true of anyone who “correctly” self diagnoses before seeing a doctor. It’s also true after women disproportionately get misdiagnosed as bipolar when they have ADHD or even BPD when they’re autistic.
It is a lie because these people have not been clinically evaluated and confirmed to have autism. They just feel like they do. I'm a late-diagnosed Black woman with other conditions and misdiagnoses. I never self-diagnosed. It is really not necessary to do so. Again, you can suspect you have a condition. You cannot diagnose it without the proper credentials.
There is no one definitive way to go about things is the point - there necessarily needs to be space and tools for self diagnosis because right now for a lot of people that is all that is available to them. And whether or not they get an official diagnosis they are still autistic.
There doesn't need to be space for self-diagnosis at all actually. We didn't used to have space for it. Self-diagnosis is a very recent trend. And it is simply not true that self-diagnosis is the only alternative or that self-diagnosers are autistic whether or not they get a diagnosis. Where is the data backing that up? If they don't have an official diagnosis then they will never know for sure whether or not they're autistic. It's a guess at best. Autism shares surface traits with many other conditions. They could have any number of those other conditions. How can a layperson do any differential diagnosis without training?
Realistically if you misdiagnose yourself as autistic, at most you’ll accommodate yourself, ask for accommodations that may genuinely help you and maybe see a counsellor for an official assessment if medication may be necessary.
No, at worst, you'll take up valuable space and resources reserved for diagnosed autistics while negatively impacting public perception of the condition for those of us who are diagnosed. At worst, you'll get the wrong and possibly harmful treatment for a condition you misdiagnosed as autism. And what medication is there for autism?
Sure, there are bad actors online and irl but that’s true of everything and we should not allow that to colour your perception of things.
This is not only happening online. This has been bleeding out into real world autism spaces to the point where many of our spaces are now overrun with self-diagnosers. The difference between my autistic groups today and my autistic groups five years ago pre-pandemic when professional diagnosis was required to participate is night and day.
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u/ManchesterNCP 6d ago
Just because something is expensive doesn't mean you can just make it up and pretend it is valid.
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u/JustDeetjies 6d ago
Just because something is expensive doesn't mean you can just make it up and pretend it is valid.
Well, thank god that’s not what I said so…
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u/PatternActual7535 5d ago
While I somewhat agree, current statistics imply that Black children for instance are being diagnosed at higher rates than all other groups
So it's quite clear that this issue is no longer as prevalent as it once was
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u/JustDeetjies 5d ago
In the United States. And this is for children - which is fantastic! I love that this is not as prevalent anymore but when talking about self diagnosis, you’re speaking about adults.
But either way, it’s great that race is not as much of a barrier to being diagnosed anymore.
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u/QaraKha 6d ago
Even worse, people are doing this to frame their eccentricities because if they weren't obvious enough, they were not abused into masking them, y'know... like most kids with ADHD and Autism have been, historically.
Then there's the fact that an Autism diagnosis officially unpersons you in the eyes of basically everyone. Oh, you have an official autism diagnosis? Guess who's first into RFK's wellness camps, where 'work will set you free?'
An official diagnosis doesn't actually do anything GOOD for anyone but closes a TON of doors, but knowing you *likely* are autistic can make it easier to adjust in public for the NT people and especially find people who are much like you, that you can have full conversations with and likely form friendships with.
An actual autism diagnosis means at any point cops can show up to your door and disappear you into a psychiatric hold "for your own safety" because you got into a fight with your parents who don't even live with you.
You lose rights. This is why despite being diagnosed I had them not put it on my medical file. I needed to know that I wasn't just unable to connect with the rabble, that it wasn't my fault. Beyond that, it would have served no real purpose.
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u/Bibidiboo 6d ago
An actual autism diagnosis means at any point cops can show up to your door and disappear you into a psychiatric hold "for your own safety" because you got into a fight with your parents who don't even live with you.
Jesus, is this the US? In any normal Western country your medical file is private and cops or anyone else definitely cannot see it without your permission..
Just to be clear for the rest of the world, a diagnosis is not a problem. You don't need to tell anyone.
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u/HumanDrinkingTea 5d ago
Jesus, is this the US?
Lol, no. What they're saying is bullshit (if they're in the US). We have a law (HIPAA) that protects medical privacy.
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u/QaraKha 5d ago
Yes. Most states have laws that allow someone to be put on psychiatric hold if they're "a danger to themselves or others." That psychiatric hold can be lengthened in most cases by continual cases of being the same.
And it is not rare for people with autism diagnoses to effectively lose their independence because their parents decided one day that they were not capable, even when they are. This also happens to LGBTQ+ people too.
It is a thing that can happen. No, you don't need to tell anyone, but parents believe their children are ALWAYS their property. It's a horrific thing to do to someone.
And it happens every goddamn day.
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u/iamacraftyhooker 6d ago
This is why I think we need different diagnoses for the spectrum of autism. As it currently stands there is simply too much division between the "levels".
While autism may help you understand yourself, as you say the diagnosis serves no real purpose. I see this as a neurotype, not a disorder, and should have a similar evolution of acceptance as the LGBT+.
For others autism is a disorder. Abuse didn't force me into masking, I simply kept getting abused. I don't have the capacity for employment, so I rely on public assistance. I did t have the luxury to have a clean medical file, because I was identified as a child. I was incorrectly diagnosed as a child, but the mental health diagnoses were just as detrimental.
Then there are people with more detrimental symptoms than myself. Those who can't speak, drive, use the toilet.
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u/QaraKha 6d ago
Yup. I have 'level 1 ASD' according to my doctor, with most of the social and sensory issues that presents with, and I have ADHD too, which also means that despite being rather inflexible with my habits I also can't actually form habits on purpose. It's incredibly difficult to function in my day to day but I can still work, I just can't get my self to do anything that is not 'immediately required.' In this case, my official diagnosis doesn't serve a purpose outside of framing the disorder properly for myself, but if I had further symptoms of higher levels of ASD, it might be more important to get an official diagnosis in order to access public assistance, in order to survive on your own, or in some cases, with family or caretaker.
Sometimes we have mild symptoms that are still autism, but as this suggests, autism is a spectrum, and assigning 'levels' makes things a bit... weird. It's like how sex tends to be a spectrum, and while there are two poles that stick out as the average, there's a whole world outside of those. Forcing a binary in a spectrum requires you to practically ignore the crossover. Same problem, same kind of people forcing it, often the same people exactly. It's quite funny how many of these Autism Truthers are also incredibly transphobic, misogynistic, racist, and etc. It all lines together.
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u/ChompingCucumber4 5d ago
an actual diagnosis has done plenty of good for me thanks. now i get accommodations at university and in job assessments, they wouldn’t just take my word for that. i get access to equipment and software to help me through disabled students allowance. i even recently was very lucky to secure a place on an internship scheme specifically for autistic people to help us get work experience. no idea in what instance cops can just show up on my door and take me into a psychiatric hold - never happened to me and don’t know anyone who that has happened to. i think for most places in the world that is likely scaremongering
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u/SuperStone22 5d ago
If these are true problems that you face due to autism diagnosis, then why are you self-diagnosing?
How does self-diagnosing help you adapt to public spaces if no treatment was done to you?
If self-diagnosing magically helps you adapt to public spaces without therapy of any kind, then maybe your problems are emotional not due to a pervasive developmental disorder like autism.
Don’t you think that treating self-diagnosis as something that is equal to professional diagnosis takes away the meaning of a diagnosis?
Also, if stigma is such a huge problem, then you don’t want a diagnosis at all if it doesn’t help you. So no reason to self-diagnose. Alternatively, if getting professional help does provide benefit, then the only way to get that is to get professionally diagnosed. Which means that you get professionally diagnosed to get professional help despite the stigma, or you get self-diagnosed and face stigma but get no professional help, which means you got no benefit.
Also, getting in trouble with the law for fighting your parents can happen to anyone who actually fights with their parents. Regardless of whether your diagnosed autistic or not.
People who self diagnose reduce the legitimacy of a real autism diagnosis. It may also stop you from getting help that you really need because you may have a different problem that requires different treatment. Treatment that you will never get because you chose to self-diagnose instead of getting real help.
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u/asdmdawg 6d ago
Yep. As an autistic person, I hate self diagnosis and I can’t stand when people do it. I did not spend 8 months on a waitlist to be formally diagnosed with ASD just to be told my diagnosis is the same as somebody who took a 20-minute quiz online or see some parallels by autistic people around them.
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u/PatternActual7535 5d ago
It's kind of a conundrum really
I noted in autism communities online, a lot of people are self diagnosed. Which is kinda diluting a lot of it. I don't get it. I don't relate to the vast majority of self diagnosed "Low support needs autistics". Many claim they aren't even disabled...
The problem now is there's "Self diagnosed" people who are helping other people self diagnosed, to the point it means nothing. Anything is an autistic symptom to them
But when so many people online in these spaces are claiming to be autistic without diagnosis, a lot of the disorder gets watered down
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u/DoubleRah 6d ago
This is good research to be done.
I do have some considerations about how they got their participants, though. Looks like they got their online participants through Prolific, but their diagnosed participants through an Autism center. We know now that a lot of people are late diagnosed because they do have better social skills, and the people who end up going to an autism center will likely have a more pronounced presentation. Plus the people who are using Prolific are doing it as a job/extra money, which speaks to a certain skill level, while we don’t really know the employment status of the other group. So it’s possible that the diagnosed group was a variety of level 1-3 people while the online group was all level 1s.
It does touch on this a bit in the study- saying that people with more insight may be more likely to rate their traits higher but still do well socially, though may have more anxiety about it. And that the high trait group was more polite than the low trait group, suggesting that they’re trying to be polite and likable.
Obviously you can’t be perfect with everything and it’s just a piece of information that we can be built upon.
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u/RunMysterious6380 6d ago
No surprises here. It's becoming a problem in the ADHD space as well, with all the mis and disinformation being spread on social media.
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u/CallSudden3035 6d ago
I am a skeptical that taking online quizzes is sufficient way to determine whether one has a condition or not, but I don’t think this study is the thing that disputes their validity.
Critics of autistic diagnostic rating criteria point out that those criteria are biased toward stereotypically male traits and were developed from observations of a narrow demographic of white boys growing up in financially secure families. Part of the reason why there has been such a movement toward self-diagnosis is that it provides space for the inner experience. The part that strikes me is the piece where it explains that self-reports and observational ratings differed among those without a confirmed diagnosis.
For some it proves that the self-diagnosed are wrong but some will view it as support for flawed observational measures.
I think we need better measures of the subjective experience of autism. Why do we think a psychologist rating someone’s behavior from 2-5 hours of interaction in a clinical setting is more valid than someone’s lived experience over a lifetime? All doctors seem to need to put someone on a psychotropic medication is to give them a 7-item questionnaire without any observation.
Can you imagine the arrogance of a psychologist saying “Well, your self-reported results on this questionnaire indicate you have depression, but you seem really energetic and hopeful about the future, so I don’t think you’re really depressed.” I think most would assume that person has “high-functioning depression” and treat them. We expect a person to know how they feel and we trust it.
Self-awareness and the subjective experience of interacting with the world should be taken into account better in diagnosis.
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u/triviolett 6d ago
Thank you, this is exactly the issue with the diagnostic system. I had a psychiatrist tell me that I didn't "seem autistic" because autism is "pretty obvious to see." After speaking with me for less than an hour. The quality of the diagnostic process depends entirely on the doctor or facility itself. You can experience wildly different processes depending on who you speak with.
Combine that with the fact that women with autism are often capable of masking their symptoms at a much higher level, eluding the diagnosis in many cases.
The entire process is exhausting, and for many people not at all covered by insurance. Some people simply cannot afford to receive a diagnosis at all.
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u/book_of_black_dreams 6d ago
It’s because social disability is not completely subjective or inward thing. Saying that someone can have autism without any outward social issues is like the equivalent of saying that someone who’s horrible at math can get a 100% on a test outside their ability level by “hiding the fact they’re bad at math”.
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u/bellow_whale 6d ago
Exactly. All this study shows is that self-reports from one particular online test don't match the results of formal diagnostic interviews. It doesn't actually prove that one or the other is more valid, just that there is a mismatch between the official diagnostic criteria and people's lived experience. From that, we can logically argue that people are misdiagnosing themselves as much as we can argue that the official criteria are wrong.
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u/nymrose 6d ago
Education about female autism should be taught to every psychologist, this is very true. I was lucky to be assessed by a queer woman who knew all about it and how it differs from “white-boy-train” autism, I felt very safe opening up to her because she understood me.
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u/book_of_black_dreams 6d ago
“Female autism” isn’t a thing. Women might present slightly differently because of social conditioning, but it’s not intrinsically different in any way
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u/mastelsa 6d ago
The problem is that most of the generally socially agreed upon presentation of autism in girls and women aren't in the DSM. Same with ADHD--there are a whole bunch of "symptoms" that seem extremely common if you talk to large groups of people who have the disorder, but none of them are on the screeners and assessment measures. A lot of those measures also aren't actually getting at the internal experience of the disorder as someone who's being asked to self-report might experience it. Many of them are about the external presentation of behaviors as parents or teachers (or the doctors who developed these measures) might view them, but are still being asked as self-report items.
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u/AstronomerHungry3371 6d ago
The problem is that this is not just a discrepancy between observed, outward difficulty and subjective, internal difficulty. One of the metrics they evaluated concerns perception of social control (whether participants can report recognition that their responses can influence the other party), and on this metric the high traits group perform like (and even slightly better than) the neuraltypical control and not like the ASD group, who rated the two scenarios (one in which they have control and the other with no control) as having the same level of control.
On the other task, the correlation between self reported traits and measured difficulty only exists in the ASD group and not the other groups. The point is that these effects are specific to the ASD population and not individuals that score high on Autism screening questionaries (who may or may not have self diagnosed because that was not what the study looked at).
I don’t disagree that the internal experience of autism might not be accurately reflected in observation based measures, but ultimately if someone’s problem is a matter of self perceived difficulty that does not reflect in objective behavior or socio-cognitive differences, why think it should be attributed to autism at all and not something like social anxiety/phobia or self confidence? And so accurate diagnosis is important in identifying what kind of help the individual might need.
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u/Acrobatic_End526 5d ago
Gee, you don’t say. Lol ffs, like it isn’t a trend to be neurodivergent these days. Of course they’re not all legitimate diagnoses.
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u/ZenythhtyneZ 6d ago
I’m married to a clinically diagnosed autistic man who, from the outside, appears exceptionally normal. Nothing about him from an uninformed outsider would seem neurodivergent but when you live with an autistic person you get to see all the unmasking up close and personal. Because of this experience I do believe autism is far more common than previously believed, however as a person who is also neurodivergent I know both he and I underwent hours and hours of testing over the course of several days to determine these issues, I don’t have a diagnosis I simply have some weird memory quirks and cystic fibrosis which has a unique brain structure with too many neurons that are excessively connected - that said the idea that autism can be diagnosed online with a simple click through test is, well it’s obscene. We all know online IQ tests are a joke and do not reflect reality, the point of an IQ test in reality has nothing to do with finding how smart you are but where you have gaps on your ability to understand specific concepts, yet autism online tests are accepted as legit?? I’m worried this will prevent those who actually need the help from seeking it due to things like this. It seems very obvious to me an online test cannot replace professional testing but the autism community has also supported self diagnosis for decades which puts things in an even more tricky spot.
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u/Prindle4PRNDL 6d ago
Curious, what does it look like between his masking and unmasking, if you don’t mind sharing?
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u/coolairpods 6d ago
Well this isn’t surprising to me at all. If you go by comments everyone is autistic, ADHD, OCD etc.
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u/Kneef 6d ago
To be fair, the neurotypical people are all out living their lives, while my ADHD ass sits on Reddit all the time.
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u/lawlesslawboy 6d ago
yea i think this is a huge part of it, many of us are online more for several reasons... the dopamine... using online spaces bc we leave our homes less... finding it easier to access community online..
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u/b__lumenkraft 6d ago
The test i've seen tell you so much.
Telling people to seek a formal diagnosis (and the state giving them a free assessment) should be mandatory.
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u/ReigningHeart 6d ago
Why is this a surprise?? Psychological research is inherently critical of self-reports and it’s an ethical obligation to use them only in concert with other data (e.g., neuro testing or behavioral observations). Self-reports are inherently bias because those seeking testing for a diagnosis typically endorse those traits, even in an inaccurate way.
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u/CRUISEC0NTR0LF0RC00L 6d ago
I feel like if anybody else did a study with 56 people, a lot of people would be saying hey that's not enough data and we need more data and this is an unreliable study. Why am I saying that? Because I've seen that over and over and over again.
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u/cinnamoncollective 6d ago
The discourse on adult autism diagnosis is emotionally charged on both sides. Some people don't want to believe low support needs individuals actually exist.
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u/CRUISEC0NTR0LF0RC00L 6d ago
I don't think that's entirely true, simply because I don't think that we have the resources to accommodate all autistic people both high and low support needs.
I think that we need a revamping of all structures of diagnostic criteria, of assistance for autistic people, and then we need to narrow it down to okay does this person need help with this part of understanding or this other part of understanding and existing because I do know that not every autistic person is like me. Not every autistic person has savant qualities.
I do know that there is value and getting help for absolutely all people though because all people, at least in my opinion, matter.
I do agree that it is totally charged though and I think that one thing to keep in mind is that people who self diagnose, they're not getting any accommodations.
Some of them like a fraction might be wrong, and a fraction of them might give a bad name to autism or a cringe name, but a lot of them are not on social media. Because a lot of people aren't on social media. But we get this biased view because we are on social media. Now I'm not on tiktok I've never been on tiktok in my life, I actively haven't blocked on all of my electronic devices LOL cuz I just don't want it near me, but I have it blocked because I know it's like a cesspool of garbage.
And I feel like a lot of people when they hear self-diagnosed they only think about tiktok and it's like... Kind of weird to me but also makes sense you know what I mean?
We definitely need more assistance for autistic individuals though both high and low support needs and we need to get the necessary tools to help accurately diagnose autistic adults in general, and we have got to as a society stop judging each other based off self-diagnosed or not, because at the end of the day again, a self-diagnosed person isn't getting any assistance. They're using that as an identifier for the way that they are, and at the end of the day I'm going to go home and fall asleep and forget about that person. But that person is going to go home and fall asleep and feel comfortable because now they understand the way they are.
So I do agree with you but I also think that we just need better diagnostic criteria and also we need to make the barriers to getting a diagnosis for all people, but that goes into a wider conversation about you know ensuring that at least in the United States that we have health care for all.
And also like the psychiatrists typically just make shit up in my opinion. You can tell me all day that somebody has like the right to diagnose but when their rate of misdiagnosis is through the roof I question just how valuable their opinions become. I'm not a statistician so I don't have the data for you there but anyway.
TLDR agree it's charged, disagree that people don't want to believe that high/low support needs people exist
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u/Least-Arm5300 5d ago
Interesting study but also not surprising! I’ve never really considered that those who score high in the questionnaires may be struggling with social anxiety or something similar instead of autism, but reading this, it makes a lot of sense actually
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u/builder-barbie 6d ago
I have three friends that are psychologists, and each one over the last two years has told me they thought I had a diagnosis. I wasn’t even aware I might be autistic until my adult son asked me and made me take a couple online tests. Reddit is my only social media, so I wasn’t exposed to the TikTok trend. I do cringe when I hear people I know complain about their autism, like okay, Becky, losing your glasses is not the ‘tism if you’re day drinking. Also, why is every thing suddenly a symptom?
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u/TurbulentData961 6d ago
Yea i saw a rheumatologist after I got diagnosed scoliosis via an x ray , I see em for a follow up years later and this doc was genuinely surprised that I have never been assessed and starts rattling off reasons back then and now ( more like 4 years ago ) and recommended I get referred for ASD and ADHD assessment .
5 years later diagnosed ADHD no treatment and every 6 months I get a letter from a therapist saying " wait lists are long we ain't ignoring you " for whole other reasons .
So I'm not sure who pisses me off more people who do not have shit but self diagnose as it as an aesthetic or doctors who act as if everyone who has shit can get a diagnosis. Even if you have mental healthare sexisim and racisim mean BPD or EUPD or IDD misdiagnosis instead of ASD is both a scientific phenomenon in literature and a borderline meme on social media discussions.
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u/CommitmentToKindness 6d ago
Yes, this is unsurprising to me because in clinical practice this presentation appears to be related to one of two things. People who desire a medicalized explanation of their troubles or people who are genuinely ignorant to neurodivergence.
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u/Maleficent-Term-9907 6d ago
Well think of this as a starting point, a kind of imperfect screening tool. Like if it suggests you are on the spectrum you might want to get it professionally checked out.
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u/mkphobic 6d ago
i would be advise caution before running with any implication from this study as a) it couldve easily been accepted to a top journal if adequately done and b) there was only 56 participants
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u/AKBearmace 5d ago
I’m a diagnosed autistic person, and while I understand some arguments behind supporting self-diagnosis (wait times for adults can be years, costs, etc) I’m suspicious of those who never seek diagnosis at all but keep claiming the label.
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u/Any-Plankton2381 3d ago
I genuinely cannot believe autism became the new trend diagnosis to have, you could have told me this 6 years ago and I’d have laughed.
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u/Sojungunddochsoalt 6d ago
What about self reported hogwarts house?
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u/Sertraline_Addict101 6d ago
Nope. Sorting hat has you formally diagnose you through a comprehensive psychological analysis.
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u/Interesting_Hunt_538 6d ago
Because most mental illnesses can mimic autism, some people misdiagnose themselves.
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u/lochnessmosster 5d ago
Did the study address the difference in recruitment though? They're saying that they see people recruited online have more anxious and isolation tendencies but also its logical that people with those tendencies would be less likely to sign up for an in person research session? Regardless of official diagnosis?
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u/dogislove99 5d ago
Why did every outlandish crazy reckless histrionic type BPD as fuck attention seeking person I’ve ever known start shouting how #actuallyautistic they were 1-2 years ago? Literally one of these people I know put on Facebook that she quit her job because her boss wouldn’t let her make a “sensory and stimming corner” in the office. 😑 And why are most autistic people I know that have actual diagnosis thr complete opposite? So ridiculous.
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u/tetrarchangel 4d ago
Eventually, diagnosis might catch up with the lived experience of the actual community. I say this as a clinical psychologist trained in assessing autism.
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u/Miserable_Remote_341 3d ago
I had the opposite problem. I scored low online but was diagnosed as an adult
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u/PullersPulliam 2d ago
Agree that this is so important! The study is strong and makes a compelling point about how self-reports aren’t a 1:1 substitute for diagnosis… which is true.
I will say, we also have to widen the lens and ask why people are turning to self-identification, what current diagnostics are missing, and how overlapping traits can coexist. For example:
The study found that some people who score high on self-report measures (like the AQ) might not meet clinical criteria for autism but instead show signs of things like social anxiety or avoidant personality disorder.
That’s valid—but it risks reinforcing gatekeeping if we’re not careful. Many autistic adults don’t get diagnosed due to access, bias, masking, or late presentation—especially women, nonbinary folks, and BIPOC.
And we must remember that clinical diagnoses themselves are imperfect.
The “gold standard” of diagnosis isn’t always inclusive or trauma-aware. Just because someone doesn’t meet strict criteria doesn’t mean they aren’t neurodivergent. It could also reflect how outdated or narrow our clinical models still are. After all, progression means always learning and evolving according to the lived experience.
Also, psychological overlap is real.
Traits like social anxiety and autistic traits can look very similar, but that doesn’t mean one replaces the other. In fact, autistic people often develop social anxiety due to chronic invalidation and exclusion. So the presence of anxiety doesn’t negate the possibility of autism—it may even be a downstream effect.
All to say…
This study invites a useful conversation, it is deeply important to think about these things! And, the study shouldn’t be used to delegitimize people who find clarity in self-discovery, especially when the system hasn’t served them. Nuance matters.
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u/EntireDevelopment413 6d ago
If you're not in special education growing up it means you're probably better at masking your symptoms and can dodge a formal diagnosis. No problems means no need to be separated and placed in special education to recieve one.
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u/scumtart 6d ago
I think it's important to note that the people who misdiagnosed as autistic were not completely psychologically normal, they just had traits of another condition that they needed help with, that also has pretty much the same medical treatments (antidepressants helps with anxiety regardless of if you have ASD or not.)
I don't think misdiagnosis harms autistic people. I say this as an autistic person. Yes, it can annoy me when people boil down ASD to something that it isn't or spread misinformation about it, but I believe that is honestly an entirely separate issue to self-diagnosis. You can self diagnose as a result of misinformation and potentially spread it, but I mean, people who think that a part of autism is eating one type of food and hating loud noises aren't technically wrong, and I wouldn't say that someone thinking those traits make you autistic is harming anyone.
I'm really not sure what people are worried about when they see 13 year olds thinking they have disorders they may or may not have. It is developmentally normal for young teenagers growing up to try to figure themselves out. I remember 2012 Tumblr having this exact moral panic about people misdiagnosing with depression and anxiety. Now in 2025, most people are aware that a LOT more people have depression and anxiety than we used to think, and it's fairly well understood that if you say you're depressed or anxious, it is not taking away any resources from people who are getting therapy for severe depression and anxiety.
I hope one day people stop pulling up the ladder. I was 'self diagnosed' before getting officially diagnosed, as I imagine many people were, considering we all probably learned that unless you were born a white boy with a certain presentation of autism, no doctor was going to just pick it out for you.
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u/Solid-Package8915 6d ago
Online tests usually focus on issues almost everyone can relate to. Like: are you annoyed by certain sounds? Do you feel like some people just don’t get you? Do you ever wake up and feel like you aren’t rested? Do you enjoy calm and peaceful walks in nature over loud situations? Are you tired after socialising for many hours?
I’ve done an autism test at a doctor and I was surprised by how unexpected the questions were. They look for dysfunction, not for quirky personality traits.
So questions like “do you feel like your day is ruined when your schedule has to unexpectedly change?”.
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u/HumanDrinkingTea 5d ago
“do you feel like your day is ruined when your schedule has to unexpectedly change?”
Yes. It drives me nuts. I think my therapist called it a problem with "set shifting?"
No one's ever asked me that question, though, and I've never seen it on a questionnaire. I'm not autistic but I've been diagnosed with inattentive ADHD, which I guess might be the cause.
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u/EmptyPomegranete 6d ago edited 6d ago
This isn’t surprising at all.
People forget what it means to have actual high levels of ASD symptoms. Profound autism is typically left out of the narrative, because they can’t access it. It’s up to their caretakers and guardians to advocate and share their stories.
Self diagnosed autistics objectivity cannot have a “high support needs” level of autism. If you did you would not have been able to mask to the point where you slid through life undiagnosed.
People forget that autism isn’t just hyper fixations and meltdowns. You ever used your own poop to finger paint with? Ripped a tooth out of your head with your own hands because you can’t communicate that you have a cavity? But the people who do those things aren’t talked about. And if you have a kid who does engage in those behaviors and you talk about it online suddenly you are exploiting them.
Hahaha love the downvotes thank you for proving my point. Let’s just keep on pretending severely disabled people just don’t exist, great idea.
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u/External-Tiger-393 6d ago
I am not self diagnosed and I haven't experienced any of that shit after "autism isn't just hyper fixations and meltdowns".
Do you think autism is less real if you have level 1 or 2 support needs? The fuck?
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u/EmptyPomegranete 6d ago
And this is the exact problem. I introduce the idea of people being more profoundly impacted by autism than you and your immediate response is to assume I am saying your experience with autism is invalid or less real.
No, my dude. I’m saying there is a real issue with people who are severely affected by autism being taken out of the narrative. Due to the fact that people mislabeling themselves as high needs when they are NOT, pushing the profoundly impacted individuals off of the spectrum entirely.
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u/Br0wnieSundae 6d ago
...... Huh? If someone is smearing shit and pulling out their own teeth, there's no fucking way they are falling off the spectrum. They are getting assessed and assisted. I've read every single comment here and no one is calling themselves "high needs" - what are you on about? It's the people with "low needs" who are speaking up because they have never been allowed a space on the spectrum!
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u/EmptyPomegranete 6d ago
I’m not talking about literally falling off the spectrum. I’m talking about how people with profound autism are written out of the narrative of representation. Because similarly to in this article, people misrepresent their level of autism and describe themselves as high needs when people high needs are not able to actually access those resources in the first place. I’m not talking about this comment section, I’m reflecting on the consequences of the information presented in the article.
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u/cinnamoncollective 6d ago
There's way more resources for people with high needs than for those with low needs, tho? What're you talking about??
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u/Br0wnieSundae 5d ago
What does it matter how they describe themselves? We're still talking about people who are "self-diagnosed", right? They aren't utilizing resources at all (well, I assume resources aren't handed out willy-nilly; correct me if I'm wrong and tell me where to find them 😉). How does that relate to the amount of resources available to high-needs individuals? If anything, it draws attention to the fact that we need to devote more tax dollars towards autism research and effective resources available to all who need them! People just want to live functional lives. I promise you, they would give back to society tenfold if only they could receive proper diagnoses WITH treatment/support.
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u/eva_ngelion 2d ago
"I’m talking about how people with profound autism are written out of the narrative of representation."
imo and from personal experience its def the other way around haha. autism has been stereotypically and historically represented as a debilitating, extreme condition that people "suffer from" and puts a burden on families, not something hidden or under the surface. this causes people with low support needs to often be written off as just sensitive or argumentative.
this has changed in online spaces and with younger generations for sure, but the aforementioned narrative has been around a lot longer, and has had significant, systemic effects on medical practices and available resources that make it a lot harder for low support needs people to get help or be validated. the noise of online discourse rarely reflects reality.
we need to accept and validate the experiences of everyone on the spectrum :)
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u/EmptyPomegranete 2d ago
Hey so I’m definitely not going to validate someone who is claiming to be a high support needs autistic person when they are objectively not :) that is what I am talking about when I say profoundly autistic people are being pushed out of the narrative. You cannot claim high levels of support needs as someone who does not have them. That completely erases the meaning of having severe levels of autism.
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u/JellyBeanzi3 5d ago
Okay I think I understand what you are saying. The current representation on autism on social media is focused on people with low support needs. While people with high support needs are not getting the same representation simply because they are not capable or struggle to attract an online presence. I think it’s important for people with low support needs to advocate and educate on all the levels of autism. The people struggling the most are being left behind and people forget that autism can have very severe limitations for those with high support needs. It’s not just a quirky social issues diagnosis for some it makes it impossible for them to communicate or live independently.
The pendulum swings- early 2000s autism was known as a disorder that caused significant impairment. Compared to now autism is more known for being social awkward. It’s important to find a middle so everyone is represented.
Edit: not sure if this is actually related to self diagnosis but more of an accessibility and capability issue in the representation.
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u/EmptyPomegranete 5d ago
This is exactly what I am saying!! This in addition to pointing out how some people with low support needs tend to try and push caregivers out of the autism community while caregivers are the only way some autistic people can have a chance at accessing the community.
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u/timwaaagh 6d ago
Id say this is pretty important research.