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.

[u/mvea]

https://www.psypost.org/new-study-finds-online-self-reports-may-not-accurately-reflect-clinical-autism-diagnoses/

[u/This-Author-362]

So suprising that an online survey can not accurately give a diagnosis, compared to someone who has almost a decade of education studying medicine. •Suprised Pikachu•

I have been seeing a new psychiatrist for almost a year and we are STILL discussing a proper Autism diagnosis but for me it seems it is quite possible I land somewhere on the spectrum.

Never have I considered trying to do an online survey to give me a diagnosis, thats like googling a symptom and it tells you that you are dying of cancer (Health anxiety will do this).

EDIT: To all the replies, thank you everyone. I am sorry if I do not reply to everyone individually but I want to say I am sorry for having a close minded, and ignorant opinion. When something I write gathers this many responses my anxiety level jumps to the moon and I get scared of offending someone. Reading what others have gone through made me realize no matter how "bad" I think I have had it in regards to my healthcare experience, I am rather privilidged to have the access of care that I do, and nobodies journey through improving their mental health is the same. We all need to work together and try to help out as much as we can.

[u/ScienceIsSexy420 → u/This-Author-362]

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.

[u/Hedwing → u/ScienceIsSexy420]

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.

[u/SenorSplashdamage → u/Hedwing]

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.

[u/Monday0987 → u/SenorSplashdamage]

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

[u/SenorSplashdamage → u/Monday0987]

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.

[u/thefirelink → u/SenorSplashdamage]

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.

[u/draggingonfeetofclay → u/SenorSplashdamage]

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.

[u/SenorSplashdamage → u/draggingonfeetofclay]

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

[u/draggingonfeetofclay → u/SenorSplashdamage]

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.

[u/datsyukdangles → u/Hedwing]

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.

[u/PsyOmega → u/Hedwing]

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.

[u/microgirlActual → u/PsyOmega]

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"

[u/PsyOmega → u/microgirlActual]

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

[u/Elemteearkay → u/PsyOmega]

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...

[u/Amoreke85 → u/ScienceIsSexy420]

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

[u/Drnk_watcher → u/ScienceIsSexy420]

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.

[u/PsychologicalLuck343 → u/ScienceIsSexy420]

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

[u/SE7ENfeet → u/PsychologicalLuck343]

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.

[u/PsychologicalLuck343 → u/SE7ENfeet]

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.

[u/SE7ENfeet → u/PsychologicalLuck343]

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.

[u/PsychologicalLuck343 → u/SE7ENfeet]

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

[u/jcooli09 → u/ScienceIsSexy420]

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.

[u/archfapper → u/ScienceIsSexy420]

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

[u/ExistentialNumbness → u/archfapper]

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.

[u/busigirl21 → u/archfapper]

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.

[u/Elemteearkay → u/busigirl21]

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

[u/busigirl21 → u/Elemteearkay]

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.

[u/VoilaVoilaWashington → u/This-Author-362]

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

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

[u/Alili1996 → u/VoilaVoilaWashington]

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

[u/VoilaVoilaWashington → u/Alili1996]

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

:)

[u/erm_what_ → u/VoilaVoilaWashington]

This comment concerns me because I assumed everyone does

[u/41942319 → u/erm_what_]

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

[u/ExistentialNumbness → u/Alili1996]

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

[u/Alili1996 → u/ExistentialNumbness]

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

[u/electricdwarf → u/Alili1996]

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

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

[u/Emu1981 → u/electricdwarf]

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

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

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

[u/girlywish → u/Alili1996]

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

[u/EntropyNZ → u/Alili1996]

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

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

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

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

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

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

[u/This-Author-362 → u/VoilaVoilaWashington]

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

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

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

[u/PsychologicalLuck343 → u/This-Author-362]

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

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

edited for clarity.

[u/PsychologicalLuck343 → u/VoilaVoilaWashington]

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

[u/VoilaVoilaWashington → u/PsychologicalLuck343]

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

[u/PsychologicalLuck343 → u/VoilaVoilaWashington]

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

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

[u/VoilaVoilaWashington → u/PsychologicalLuck343]

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

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

[u/PsychologicalLuck343 → u/VoilaVoilaWashington]

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

[u/Elemteearkay → u/VoilaVoilaWashington]

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

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

[u/CombatWomble2 → u/VoilaVoilaWashington]

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

[u/Frequent_Oil3257 → u/VoilaVoilaWashington]

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

[u/willowwife → u/VoilaVoilaWashington]

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

[u/homelaberator → u/VoilaVoilaWashington]

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

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

[u/Tech_Philosophy → u/VoilaVoilaWashington]

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

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

I say that with love as someone on the spectrum.

[u/VoilaVoilaWashington → u/Tech_Philosophy]

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

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

[u/maybeayri → u/VoilaVoilaWashington]

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

[u/funk-the-funk → u/VoilaVoilaWashington]

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

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

[u/Elemteearkay → u/VoilaVoilaWashington]

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

That's utter nonsense, I'm afraid.

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

[u/datsyukdangles → u/Tech_Philosophy]

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

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

[u/sprunkymdunk → u/This-Author-362]

Not to mention that the vast majority of diagnosis is not performed by a psychiatrist with ten years of education. Seeing a psychiatrist is extremely hard here, at least.

[u/PsychologicalLuck343 → u/sprunkymdunk]

The family doctor is the person who should notice it first, and make referrals, but they aren't trained to properly look for them. Given my experiences with neurologists, psychiatrists,and CBT therapists, nobody is properly trained. Too many people think that "anxious patient" means hypochondriac than to think about which disorders create anxiety in the first place as many physical issues do, like digestive diseases , autoimmune diseases, autism, etc.

[u/cornylifedetermined → u/PsychologicalLuck343]

Even worse when you are femaile/AFAB and over 40.

[u/PsychologicalLuck343 → u/cornylifedetermined]

Thank you, certainly true.

[u/Due_Bottle_1328 → u/PsychologicalLuck343]

Family doctors are not trained in autism at least here in Canada. I asked mine and she said no way you can't have autism, you wouldn't be able to sit here and talk to me, but I'll refer you to a specialist. The psychiatrist saw me once and said yes it's very obvious.

[u/PsychologicalLuck343 → u/Due_Bottle_1328]

I had a friend who worked with learning disabled kids, and swore that she knew autism inside and out and that I did not have autism. That's because her students were only diagnosed under the narrow understanding of autism that they used to have.

Oh, edit:, I just talked to a physician in r/AspieGirls who said there is zero training for autism for family doctors.

So who *are* supposed to refer autistic kids?

[u/newsnewsnews111 → u/PsychologicalLuck343]

My son’s pediatrician did screen for autism in 2007 when he was 18 months old so this lack of training is not universal. Failing the M-CHAT questionnaire put us on a pathway to diagnosis and early intervention. This was, however, under the previous restrictive criteria, and my son is completely disabled by his autism.

[u/DragonBitsRedux → u/PsychologicalLuck343]

Not a chance. Not a single doctor, specialist or general practitioner, therapist or psychiatrist would even consider the possibility of me being autistic.

The diagnostic criteria were developed by neurotypical doctors who had no clue what it's like to be autistic and is we don't immediately Look Autistic then we must not be.

Most doctors are 20 years at least behind on what it means to be autistic.

[u/newsnewsnews111 → u/DragonBitsRedux]

Have you been around people diagnosed with autism under the DSM-IV or III? That’s my 18yo. He is not ‘neurodiverse’. He is developmentally disabled.

The definition of autism has been stretched so far out of shape that’s it’s practically useless. The above comment is peak example of this.

The DSM-V was a huge mistake, opening the diagnosis for too many who might have something but it’s not autism.

Now I have to call my son’s type severe autism, and they are pushed to the side in the public discourse and research. Who speaks for those who cannot communicate?

[u/PsychologicalLuck343 → u/newsnewsnews111]

I would just add to this that those of us who have the stress and anxiety caused by autism suffer stress that most people don't understand. It's not how disabled we look, or whether or not we can speak, it's becoming ill and non-functional in many circumstances allistics do not recognize as difficult and don't understand why (edited for clarity).

It's not just that we can't do this, or can't do that intellectual thing, it's that we feel horrible and irritated beyond reason in less than ideal circumstances that allistics just don't think about and don't realize are hurting us. Just because someone appears normal, doesn't mean they're not suffering.

And when they decide how severe someone's autism is, they don't decide based on that person's pain or dysfunction, they decide based on how high their support needs are, that is, the help that they are observed to need.

If answering a questionnaire can tell them who is and is not autistic, why can't they simply ask us what we need and how much overstimulated we are?

[u/newsnewsnews111 → u/PsychologicalLuck343]

My son cannot communicate beyond basic needs. That is partially why he was diagnosed under the previous criteria.

But clearly the answer to help autistic people is just to ask them. Do you see how you have already dismissed my son’s autism?

Please try caring for a non-communicative person with intense sensory needs who needs help with all activities of daily living and must be supervised continuously for several years. I know stress and anxiety and burnout.

[u/PsychologicalLuck343 → u/newsnewsnews111]

I'm not an expert in severe autism, but i was reading that a lot of non-verbal kids can learn to communicate in other ways, like even by text.

Obviously, we can't ask most non-verbal kids what they need, but the great majority of autistic people would be happy to give input as to their needs.

I'm sorry that caring for your child is so difficult. It shouldn't be made so hard to do, I do wish and will fight for caregivers like you to get the needed support to have a more humane schedule. Well-meaning people who are trying to do the right thing, we wear them right down to the nubbin' in this country and it's not right. We should be a more compassionate nation, not a bunch of jerks who think everyone should work every day until they drop dead of exhaustion.

[u/newsnewsnews111 → u/PsychologicalLuck343]

Thank you for your kind words.

My son has been in speech therapy for many years. It was the first one we tried when we were waiting for his autism evaluation at 18 months old. Last fall we took a break from two years of private speech therapy focused on AAC with no progress. He also has one for school.

He is not bothered by his lack of communication and doesn’t get frustrated too often. I do my best to figure out what he’s asking for but he has trouble answering even simple questions. I’ve only been apart from for two nights. We sent him to a weekend special needs camp to try it out last year. He did fine so that’s good news for the inevitable day that we cannot care for him. I’m hoping to try a longer one eventually but it’s a lot to figure out.

And care for autistic people like him is difficult to obtain and generally not good quality. Plus he cannot tell us if there’s a problem. He cannot mask and has very different needs from those who can. This is the autism no one talks about anymore.

[u/PsychologicalLuck343 → u/newsnewsnews111]

How old is he now? I'm sorry this is a tough row to hoe. I wish I could say something helpful, but I understand that it's a frightening position to be in. Ì hope things improve for you both soon.

[u/theslothist → u/newsnewsnews111]

You literally do not have autism in anyway, you neither have the personal experience, nor the medical experience. What basis do you have for arguing that the Autism criteria are too wide now? Are you under the impression that there was previously all this support for autistic people and now theres not because autism spectrum disorder was expanded to include what used to be call Asperger's syndrome and other related concepts? Thats not what happened. 

To be honest, in the autistic community, people like you are a meme and not a good one. You tend to enter our spaces and try to dominate them and tell us how our own conditions are or aren't legitimate because your kids have it so much worse. 

[u/newsnewsnews111 → u/theslothist]

Yes I am indeed under the impression that before the autism definition was expanded, my son’s type of autism was supported by autism groups and research. I was there before it was changed. There were groups for Asperger’s and I knew those were not for my son. It was similar to autism, but had different needs.

Nowadays, autism can mean many things, most of which do not include him. Even though my son is completely disabled by his autism, calling it a disability isn’t allowed by those verbal enough to demand it.

I am not denying or minimizing anyone’s struggles. We attend many events and programs and I do all I can to learn. We’re around autistic people of different levels and their families. We pretty much only socialize with other special needs families.

But I do not think the DSM-V changes and other efforts to expand or change the definition of autism were better for those like my son. They are less visible, less considered, and treated as outliers in their diagnosis now that the spectrum has widened so much.

[u/DragonBitsRedux → u/newsnewsnews111]

I agree completely with your assessment and I really appreciate your feedback.

I apologize if I came across as insincere or belittling those with severe autism-related challenges.

I *know* I am fortunate.

I'm 60m ASD/ADHD, only recently clinically diagnosed, batteries of tests and interviews,

I scored as significantly autistic but with a very low degree of stereotypical sensory issues.

Yes. There are posers and fakers. There are folks who will take advantage of any chance to be jerks or defraud welfare or worker's comp.

I can't help that but I'm doing my best to guide folks with 'moderate needs' better understand life isn't fair and -- even if the law says their needs must be accommodated -- that's not how life works in general and even admitting you are autistic as an adult can have really weird and unexpected consequences and/or reactions.

Often these are folks have spent their lives 'smart but dumb' while doing their best to not end up on public assistance.

I do feel fortunate in that folks of all ages facing neurodiversity-related challenges respond really well to this 60-year-old 'high functioning' autistic man who survived a hostile corporate work environment saying to them "life is hard and chances are good you are going to have to make the accommodations on your own because saying you are autistic will often make things worse."

My own child was like "But they *have* to give me accommodations. That's the law!"

"Yes it is the law but that's rarely how it works out. We jumped through the hoops to get your school to officially recognize your medical needs but as you are seeing not every teacher will respond positively. It is important to pick your battles."

I'm old school. As I like to say "if we came home bleeding, our parents didn't sue, they yelled at us for getting blood on the neighbors deck!"

I prefer -- those who can -- enable themselves.

Again, I appreciate your feedback.

Solutions need to embraced the entire spectrum of folks with autism and I'll do my best in the future to include your perspective.

I'm a depression survivor and my writing about depression became 'more accurate' and well considered with time.

Again I'm sorry if I came across as abrupt. I am autistic. I get passionate. Part of the reason I was pretty sure I was autistic was how often what I said came across all tangled up to the point I'd get The Look on an almost daily basis. "WTH? Why would you say something like that?"

I tend to get very frustrated but I want to *learn* from my mistakes and missteps.

[u/newsnewsnews111 → u/DragonBitsRedux]

Thanks so much for your thoughtful reply. Your earlier comment makes complete sense knowing the context.

I’m sure you, too, often find the label inadequate to explain the various conditions under the autism umbrella. So much is unknown, most treatments are ineffective for many, research into causes is mere correlation, but the struggles remain.

I’ve also seen the reality for those who are more in the middle. It’s not always clear to others that the needs are still there and people can be dismissive. It’s sometimes a weird advantage that my son is obviously disabled. Though, trust me, I’d give anything to be able to communicate with my son better.

Again, thanks for understanding. I feel like the autism world has changed and left my son behind so I try to let others know that we’re still here.

[u/sprunkymdunk → u/newsnewsnews111]

Same thing happened with ADHD in the early 2000's and now for mental health. A growth in awareness (very good) coincided with a growth in over diagnoses (bad), often conducted by people with minimal formal medical education. 

The main problem being, as you've experienced, that those truly in critical need are crowded out by the majority of people who can claim to be on the spectrum, somewhere.

[u/theslothist → u/sprunkymdunk]

Where in the world can people be diagnosed with ADHD by someone who is not a medical doctor? That is not the procedure in Canada.  What basis you have for the idea that there is a critical need for someone extremeADHD sufferers that cannot be met because too many people are diagnosed with ADHD?

[u/sprunkymdunk → u/theslothist]

Why yes, there are differences by country. In the USA, for example, ADHD diagnosis is delegated quite low. The ADHD panic was early 2000s. Mental health is what I have personal experience with, in Canada, and certainly relevant in most other places. I have better care as I'm in the military system, but I still can't see the psychiatrist or even a psychologist due to demand.

[u/newsnewsnews111 → u/sprunkymdunk]

Thanks for your understanding and perspective. All good points

[u/This-Author-362 → u/sprunkymdunk]

The first time I did a intake request with a referral from my GP to see someone, I waited almost 2 years. I can not give much complaint though because our healthcare system is swamped, and it is free.

[u/WernerHerzogEatsShoe → u/This-Author-362]

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

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

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

[u/apocketfullofcows → u/WernerHerzogEatsShoe]

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

[u/Acrobatic-Exam1991 → u/apocketfullofcows]

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

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

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

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

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

[u/WernerHerzogEatsShoe → u/apocketfullofcows]

That sucks, I'm sorry to hear that.

[u/PsyOmega → u/WernerHerzogEatsShoe]

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

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

[u/munnimann → u/PsyOmega]

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

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

[u/robotnudist → u/munnimann]

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

[u/TripAndFly → u/robotnudist]

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

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

[u/minuialear → u/munnimann]

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

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

[u/WernerHerzogEatsShoe → u/PsyOmega]

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

[u/PsyOmega → u/WernerHerzogEatsShoe]

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

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

[u/WernerHerzogEatsShoe → u/PsyOmega]

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

[u/Buttercup134 → u/WernerHerzogEatsShoe]

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

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

[u/WernerHerzogEatsShoe → u/Buttercup134]

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

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

[u/CovidThrow231244 → u/This-Author-362]

Im very grateful for your edit. Since I think you well covered the gaps in what you first expressed. It sucks to feel insecure in ny self diagnosis, but also I have a hilarious number of things that tick the "yes" column and it's absurd for me to not feel valid. Like for so many reasons I won't get into here, I know I have autism. But how do I usefully cope with my autistic existence? That's something I don't know how to get past. So here I remain NEET and terminally online.

[u/This-Author-362 → u/CovidThrow231244]

You could consider me terminally online since the early 2000's, hanging out in mIRC chats and finding myself in random Ventrillo servers. Definitely seeing and hearing things no 9 year old at that age should.

I think with the rapid advancement of the internet and the advent of social media a lot of our minds have been robbed and corrupt by wrong morals and beliefs on what it means to be happy. If you are ever struggling and want to vent tI can always lend my ear, even if you just need someone to listen.

[u/erabeus → u/This-Author-362]

The actual tests you can find online are not just “online surveys” or facebook quizzes. They are actual tests that have been rigorously developed from real research.

When you are in the process of a formal diagnosis, you will most likely be taking one or more those “online surveys” as part of the process.

If you are uncertain and have the means, then a formal diagnosis will always be more thorough. But formal diagnosis can be extremely expensive or entirely inaccessible for many. In those cases, there are autism centers that recommend adults diagnose themselves if a diagnosis would not significantly change their life (in terms of being allowed support or accommodations)

[u/This-Author-362 → u/erabeus]

Thank you for clarifying for me, I was quick to jump on comparing them to a facebool quiz like you say. My experience with using tools like this away from going to a website by yourself. I was talking face to face with someone, and in the last few years, it has been video calls on my phone for therapy.

The only time I have ever done tests like this was a few times on a PC in the practitioners therapy room, and then also plenty of pencil and paper tests but those stopped once I was an older teen.

My problems also go far beyond an autism diagnosis, so I also apologize if I started ranting too much, It was only in the last few years that autism was even a consideration. I have lived a rather rough life and have always had social and generalized anxieties to a high degree. A few traumatic experiences/memories that flashback in the form of nightmares, leading me to be in a state of hypervigilance.

There are too many problems for a comment on a reddit thread, but there is an odd cathartic feeling when you can type out how your feelings on an open forum and leave it to the wolves.

[u/erabeus → u/This-Author-362]

No worries, I just wanted to add some context and information because I’ve noticed in threads like these there are a lot of comments from people who, it seems, spend too much time on r/fakedisordercringe

[u/HerbertWest → u/This-Author-362]

I have been seeing a new psychiatrist for almost a year and we are STILL discussing a proper Autism diagnosis but for me it seems it is quite possible I land somewhere on the spectrum.

You need to go to a testing specialist for a formal assessment. I'm surprised they didn't recommend that. It's not really supposed to be a diagnosis you can discern based on talking with someone, no matter how long.

[u/PsychologicalLuck343 → u/This-Author-362]

Some people are more inquisitive than you and have found that relying on the healthcare systems is an inefficient way to be diagnosed and treated.

Also, the top comment here ought to be about how ineffective the current online tests are at uncovering autistic traits and show that, clearly, the methods by which we diagnose adult women are horrendously deficient.

[u/This-Author-362 → u/PsychologicalLuck343]

I don't mean this with any disrespect or to sound rude, but if you don't trust your healthcare system, who do you trust? I have had my fair share of bad experiences with therapists, psychologists, and psychiatrists.

If you are like me and have struggled to function like a normal contributing member to society and have exhausted pretty much every avenue of trying to "fit in" including abuse of various substances to relieve "symptoms?" then seeking a medical professionals and finding some you trust seems like a logical choice to me.

Are you going to agree with everything they say? No, probably not, but for me saying some of these things I feel out loud to someone is a big help, instead of playing a game with the thoughts in your mind.

I know I am not a smart person and I think I know the limits to my own intelligence. I just want to learn things to be a better person, and to have medications that allow me to go back to schooling to further my education and get a stable career.

[u/azrazalea → u/This-Author-362]

They didn't say they didn't trust them at all, they said it is inefficient. Which is often (though not always) true.

The funny thing is that they are actually really bad at diagnosing autism. The original research we are basing diagnosis on only studied men, and only studied specific forms of autism that were obvious and recognized at the time. This is getting attention now, but it will take years to catch up. One of many sources https://childmind.org/article/autistic-girls-overlooked-undiagnosed-autism/.

The extra fun part is that this isn't actually gendered. While it does seem to be a pattern that autistic women have a set of behaviors different from the traditional autism diagnosis, there are men and non-binary people who also present autism in the way people have been attributing only to women.

So not only were we bad at diagnosing women, in actuality it is only somewhat about gender and we were also missing a lot of men as well.

Oh and just to head off the counter comments: I'm diagnosed and have seen multiple therapists/psychologists and they all see problems with current diagnostic techniques and much of this information is from them. I actually never even considered I might have autism until my psychologist brought it up.

[u/This-Author-362 → u/azrazalea]

I was generalizing my experiences too much with other mental health issues. I woke up spicy today so I am sorry for jumping the gun and making assumptions.

My experience with autism specifically is in the last 5 years so I honestly have not done much research about anything beyond what I talk a out with the healthcare I see. I plead my ignorance and humbly thank you for the informative comment.

[u/PsychologicalLuck343 → u/This-Author-362]

I've learned to navigate the system and now have the best doctors in my city in their respective fields. 99.9% of the public doesn't have that advantage and have to get thrown around on the tide of medical conventions that simply don't serve chronic illnesses. Anything that doesn't show up on the basic blood counts are discounted as being less probable than health anxiety that exaggerates their suffering.

edited for accuracy.

[u/This-Author-362 → u/PsychologicalLuck343]

I agree, this is a problem everywhere and my experiences are not going to be exactly the same as yours, but maybe some similarities. I have been talking about mental health to first my family doctor at a young age, then other specialists for almost 20 years now. I have also had to jump through hoops to get proper care and have faced the extreme judgement that can happen at times from medical staff, nurses and the like.

Being committed to a psychiatric ward can be viewed as shameful, and showing weakness in some peoples eyes, but when you are completely out of options and feel you are a danger to yourself what do you do? that is why these systems are in place and what I think is not enough of but some of our tax dollars pays for, along with all medical services that we have available.

Although it has gotten better since I started seeking help in the early 00's there is still a huge stigma around mental illness and people seeking help for things hurting them others can not see directly on their body, but only through actions.

[u/PsychologicalLuck343 → u/This-Author-362]

Yeah, like all invisible illnesses! I'm sorry you've had to put up with that.

[u/imaseacow → u/PsychologicalLuck343]

All due respect, I get strong “I shop around until I get the diagnosis I want” vibes from these comments. 

[u/seamsay → u/This-Author-362]

if you don't trust your healthcare system, who do you trust?

Frankly, for mental healthcare at least, I don't really trust anyone. That's not because I think they're being malicious or anything, it's not even that I think they're incompetent, I just don't think we have mental healthcare figured out yet to nearly the same extent that we do physical healthcare. For short-term mental health problems I think we've improved a lot in the last decade or two, but for long-term mental health problems the data is pretty bleak and there just doesn't seem to be much consistency.

[u/fuzzbeebs → u/This-Author-362]

For women, POC, LGBT, disabled, and any combination of the above, the US healthcare system is a minefield. The system is built on research conducted almost exclusively on straight white men and a good chunk of the rest of the research was conducted as unethical human experiments (see the Tuskegee Syphilis Study, for example). 

While in recent years and even decades this has vastly improved and doctors are now receiving bias training, it's still inadequate. People who aren't cis straight white men have to find specific providers they can trust which can be few and far between depending on their identity. Finding such a provider costs a lot of time and money for demographics who statistically have fewer resources to work with. Oftentimes you end up going to the ER when the issue you were hoping would go away on its own progressed to a life and death situation, and then you just get who you get. And if you are say, a black trans woman, you are all but guaranteed to be discriminated against.

Pair the real and present challenges with generational trauma from opression and human experiments, and you got yourself a healthy skepticism of the US healthcare system. When physicians can harm you by not believing your pain, ignoring your allergies or health risks, and mental health providers can harm you by telling you that it's all your fault, you just need to toughen up, or worse, and you have to foot the bill anyway, many of us have good reason to think twice before seeking help.

[u/TheScrufLord → u/This-Author-362]

I’ve done one, knowing already that I have autism just to see where I’d land on their scale.

[u/TactlessTortoise → u/TheScrufLord]

Did you succeed?

[u/qwqwqw → u/TactlessTortoise]

It cured her of her autism!

[u/Emu1981 → u/This-Author-362]

So suprising that an online survey can not accurately give a diagnosis, compared to someone who has almost a decade of education studying medicine.

The problem is that people subconsciously alter their answers to give them the diagnosis that they think they have. A good psychiatrist can help filter through these false answers and get to what is hopefully the truth of the matter.

Personally I have never been officially diagnosed but I have 3 kids who all have been diagnosed with level 2 ASD by professionals. I see way too much commonality between what my kids have been experiencing and what my childhood was like. I have done two online questionnaires, one I scored in the "probably ASD" range and the other one I scored in the "go see a psychiatrist because you have ASD" range (that one is was very similar to the ones that I filled out for my kids). If I were to see a psychiatrist to get diagnoses and didn't end up with a ASD diagnosis then I would be extremely surprised.

[u/cultish_alibi → u/This-Author-362]

Never have I considered trying to do an online survey to give me a diagnosis

You make it sound like that's a very common thing, but it's actually not. Online questionnaires (not surveys) are just a way of exploring some of the aspects of autism. I've never met anyone who thought it was a diagnosis.

[u/Separate_Pick_1545 → u/This-Author-362]

Sometimes I just don't respond to replies, especially not right away

[u/pinkfootthegoose → u/This-Author-362]

if you have been seeing someone for a year and you still don't have a diagnosis you are seeing the wrong shrink.

[u/jupiterLILY → u/This-Author-362]

Self diagnosis isn’t just doing a quiz online. 

It’s a process that usually takes years and a huge amount of research. 

[u/stlblews → u/jupiterLILY]

And yet, without an understanding of differential diagnosis that’s informed through years of training and clinical experience, that “research” is still not enough

[u/jupiterLILY → u/stlblews]

Most autistic adults who go for a diagnosis get one because they self diagnosed first. 

Your average adult isn’t paying 2k to a psychiatrist “just because” they were pretty damn sure and put down a big bet that they were correct. 

The diagnostic criteria exists so that someone who isn’t you can get an understanding of how autistic people think and confirm if it’s autism or not.

You always know how you think better than someone who’s not in your head 24/7. 

That’s what my psychiatrist said at least. 

Edit. He also said that that training and clinical research largely ignores women and POC. So it’s not surprising that people from those groups present slightly differently. They have different societal expectations. 

Our diagnostic criteria exists to diagnose middle class white boys. It’s not that effective at diagnosing anyone else. Autism diagnoses basically started happening because that group would present in a way that was disruptive to parents, and those parents had the wealth to find a “solution”. For the longest time you were basically diagnosed based on how much you bother your family. 

[u/Zillich → u/jupiterLILY]

“You always know how you think better than someone who’s not in your head 24/7.”

Right, but this study appears to show that that sentiment isn’t as accurate as some people think it is.

[u/jupiterLILY → u/Zillich]

This study had 56 people. That could be one weird Facebook group. 

I trust my psychiatrist and therapists more than I trust this study. 

[u/Zillich → u/jupiterLILY]

True, it’s only one study with a very small n. The takeaway imo isn’t “all self diagnoses are bad,” but rather maybe there are flaws to it that could be better addressed.

The influence of social media is a double edged sword. It raises awareness for folks who might have continued to struggle without ever considering they might be on the spectrum. But it also is easy/rewarding for inauthentic content creators to sensationalize the condition to get more views. I’ve seen very educational content, and very misleading content (ie “if you do these 5 things you probably have autism!” followed by 5 very common things).

Folks who read through the DSM-5 and other medical resources probably are more accurate at self diagnosing than folks who resonated with some social media videos and took some online quizzes and just went with it. If there was a more reliable self diagnostic exam that was free, that would benefit the community.

[u/jupiterLILY → u/Zillich]

All the diagnostic criteria that your psychiatrists use are online for free.

Watching some tik toks and doing a glorified buzz feed quiz isn’t self diagnosis. I don’t know an autistic adult that thinks it is. 

Self diagnosis is putting yourself through a genuine diagnostic criteria and eliminating the other potential diagnoses. 

The autistic community is pretty hot on this. The idea that we’re all just confused idiots who watched the wrong video kinda plagues our online existence at this point and it’s really dismissive and somewhat infantalising. And low key insulting because we’re a group that tends to love research and accuracy. 

[u/Zillich → u/jupiterLILY]

Right, agreed, but the problem is just because you and I agree that videos and quizzes aren’t self diagnosis does not mean there aren’t people who do think it is.

Like I said, I’m not saying self diagnosis is bad all around. I’m not saying “all self diagnosed people are lying/wrong.”

I am saying that there is a double edged sword to self diagnoses, because not everyone who claims it follows the same rigor as others do. It would be ideal if the barriers to official diagnosis could be removed so people could access it freely.

[u/jupiterLILY → u/Zillich]

The people who do think it is have a rough time when they come into contact with the autistic community. 

And generally get pushed to do more research. Diagnosis is a word with a strict definition. 

And if we know anything about autistic people, we tend to love research and don’t take it lightly.

Not everyone follows the same rigour, sure. But we’ve been dealing with people saying they’re a little ocd etc for years. I don’t understand why now that it’s autism the neurotypicals are up in arms. 

Or I guess I do understand. With the ocd thing it was disabled people complaining and being harmed wheras now it’s the allistics feeling annoyed that they’re having to accommodate people. 

I agree that the better outcome would be improved access to affordable mental health services. But that isn’t happening any time soon. 

[u/Krashino → u/jupiterLILY]

I think this study is also saying trust your therapist and psychologist more than you trust some random online quiz too, which is what a lot of people aren't doing.

[u/jupiterLILY → u/Krashino]

My psychiatrist says self diagnosis is valid and that the diagnostic criteria is racist and sexist though. 

An online quiz is not a diagnosis. 

[u/LamarIBStruther → u/jupiterLILY]

This is all true.

It is also true that self-diagnosis is much less accurate.

The limitations of the DSM criteria for ASD are a real issue, especially for women and people of color. But, that does not mean that self-diagnosis is automatically valid.

Basically, if you see someone online claim that they have self-diagnosed autism, you should not assume that they are correct or incorrect. Because you just don’t know.

[u/jupiterLILY → u/LamarIBStruther]

Self diagnosis is a process that takes years and isn’t the same as watching a couple videos and deciding you’re autistic.

If I see someone online say they’re autistic, whether I believe them or not is irrelevant. Just don’t invalidate them. As you said, you don’t know. And they probably know themselves much better than you do. 

[u/LamarIBStruther → u/jupiterLILY]

You appear to be making the mistake of assuming that your experience is the same as that of others who believe that they have autism. Unless I’m mistaken and you weren’t referring to your own experience.

But, I would certainly not assume that anyone saying that they have autism online has spent years engaging in a rigorous process of self-diagnosis before arriving at the conclusion that they have an ASD. Kudos to those that do, though, because that’s clearly a lot of time and effort.

[u/jupiterLILY → u/LamarIBStruther]

I’m not mistaking my own experiences. I’m trying to correct the misinformation happening in this sub. 

People don’t seem to have a firm grasp on what self diagnosis actually is or what it involves. 

I don’t know a rational autistic adult that would consider watching tiktok to be self diagnosis. 

Plenty of psychiatrists I’ve seen welcome self diagnosis and acknowledge that it’s how their patients find them.

But self diagnosis is also a very extensive and rigorous process. 

Watching a tiktok is not self diagnosis. It’s watching a tik tok. 

[u/EnemaOfMyEnemy → u/jupiterLILY]

Personally, the reasons why I suspect I'm probably autistic is because others have suggested it to me. I've even been asked if I was homeschooled, and I wasn't, but I guess I'm just that awkward or something. However, I was also raised an only child in a very rural area with almost no kids my age around, the ones who were around ended up moving away when I was young. I ended up only really having one friend at a time or no friends which I know is a common autistic experience, and I also found a niche i was good at that got me labeled a "gifted kid." It sounds like autism, but it could also be that I was just too alone as a kid and I coped with video games and books. But after a point, if you perpetually struggle with life and seem unable to get anywhere, it's tempting to look inward and try to figure out where the problem is with me.

[u/LamarIBStruther → u/jupiterLILY]

I never said anything about TikTok?

I’m merely stating that there’s no real basis for suggesting that most people who claim a self-diagnosis of autism have engaged in rigorous research before concluding that they have autism. That is misinformation.

Also, for what it is worth, one would not generally go to a psychiatrist for a diagnosis of ASD. Psychologists are the mental health professionals qualified to do the type of assessment necessarily to rule in or rule out ASD. In most cases, a psychiatrist would not be able to do much more than administer self-report questionnaires.

There could be special or unusual cases in which a psychiatrist is qualified and equipped to diagnose ASD. But that would be rare.

[u/jupiterLILY → u/LamarIBStruther]

Using that logic there’s also no basis for assuming they’re not.

Diagnosis is a word with a pretty strict definition. 

Psychiatrists actually do typically diagnose autism, at least in my country, because they tend to specialise in neurodivergency as a whole and in our country adhd drugs can only be prescribed by a psychiatrist.

[u/PsychologicalLuck343 → u/stlblews]

Omg. What training do you imagine happens for GPs and autism?? Not even mental health or social workers understand how autism manifests in adult women.

[u/roccmyworld → u/jupiterLILY]

Maybe you did that, but it is most certainly not a requirement. Lots of people just watch some Tiktoks.

[u/jupiterLILY → u/roccmyworld]

Then that’s not self diagnosis. 

No diagnostic process happened. 

[u/boostedb1mmer → u/This-Author-362]

Since it's a "spectrum" isn't literally everyone on it? Even if it's at the "only 1 or 2 traits" end of it?

[u/CatalogK9 → u/boostedb1mmer]

No, it’s like a spoke chart or a color wheel, where there’s a wide range of symptoms and traits each of us can have, each with their own degree of severity/prominence. You’re either on the spectrum or not, it’s not a continuum like temperature. ADHD is another spectrum condition, for the same reason. Different combinations and degrees of symptoms are unique for each person with the condition, but it’s still only about 10-ish% of the population

[u/Elemteearkay → u/boostedb1mmer]

A table isn't part of the animal kingdom even though it's got 4 legs.

Hazelnuts aren't crustaceans even though they have hard shells.

Autism traits are human traits - just dialled up and in high concentrations - having one or two just means you are a human (or maybe doesn't even mean that). The Autism Spectrum isn't a scale from "only a little Autistic" to "very Autistic". Its a descriptor for the way in which the various traits of Autistic people present themselves to varying degrees.

"Everyone" is most certainly not "on the Spectrum".

[u/Extinction-Entity → u/boostedb1mmer]

No. Either you have it or you don’t, but the spectrum of symptoms and “severity” is wide.

[u/FlashbackJon → u/This-Author-362]

Sometimes recently I get an unusual runny nose -- when typing the symptoms into Google, there are exactly two options: seasonal allergies, or YOUR BRAIN IS LEAKING.

[u/But_like_whytho → u/This-Author-362]

Neurodivergency is an umbrella with many diagnoses that have overlapping characteristics. ADHD and autism are the two that everyone thinks of, but r/CPTSD is also under the neurodivergent umbrella and shares a lot of symptoms/effects with ADHD and autism. Lots of people get ADHD and/or autism diagnoses instead of the accurate CPTSD diagnosis because CPTSD isn’t in the DSM and a lot of providers aren’t familiar with it.