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/paulfromatlanta]

The findings raise questions about the widespread reliance on self-report surveys in online autism research

So self diagnosis is not as good? That will surprise and upset many on Reddit.

[u/mallad → u/paulfromatlanta]

This is not about self-diagnosis vs clinical diagnosis. This is about the tools used for autism research. Studies quite often use self-reported surveys to assess a large population quickly and easily.

It isn't just autism research, either. Countless studies use surveys or self-reported lists of symptoms, triggers, pain, and so on. They always include discussion about the limitations of self-reporting, and how the results should be taken with an understanding that there was no empirical data used.

[u/Just_Another_Scott → u/mallad]

Studies quite often use self-reported surveys to assess a large population quickly and easily.

And they shouldn't be. Self-reported surveys are junk and have always known to be. Observational data by independent parties is the most accurate.

[u/Tusked_Puma → u/Just_Another_Scott]

Saying self-reported surveys 'are junk' feels a little unfair. Obviously, they will not have the same level of rigour as a clinician assessing an individual to see if they meet criteria. That being said, insufficient sample sizes have also been a huge problem in psychology since its inception, and so any tools that can dramatically increase sample sizes without an exorbitant and unrealistic cost associated with it is going to be seriously considered. It's a question of tradeoffs, not that we should automatically write-off any self-reported surveys as junk.

[u/5imbab5 → u/Tusked_Puma]

Whilst your points about sample size are correct the issues with some self report surveys for ASC is that they don't correlate with the diagnostic criteria. If the questions were closer to "established" criteria AND lived experience they would be more reliable.

[u/Brilliant_Quit4307 → u/Just_Another_Scott]

This is kind of like saying IQ tests are junk. Like, they're misunderstood and misused, but they aren't junk. They do measure something that can be used as guidance. If anything, they tell us about how people feel and see themselves. That might not accurately reflect their actual behaviour, but it's not junk either.

[u/Sugarstache → u/paulfromatlanta]

The study isn't about self-diagnosis it's about the study of autistic traits using self-report scales administered to participants in online survey research.

[u/melancholy_dood → u/Sugarstache]

The study isn't about self-diagnosis it's about the study of autistic traits using self-report scales administered to participants in online survey research.

Exactly! Unfortunately as I’ve read some of the responses to this post, it appears that some individuals are really misunderstanding what the linked article is actually.

[u/Just-Feedback-2223 → u/Sugarstache]

They’re taking any opportunity to vent about self diagnosed people even if that’s not the topic. And the mods aren’t removing this off topic joke comment. Why? I have no idea. It’s the top comment so I have no idea why they haven’t seen it yet.

Idk why allistics are so pressed over self diagnosis for autism when I don’t even care as a diagnosed autistic person. It’s giving white savior.

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

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/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/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/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/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/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/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/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/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/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/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/VGSchadenfreude → u/paulfromatlanta]

A big issue with self-diagnosis is simply the fact that proper diagnosis isn’t even an option for most adults at all. An adult can show every single classic symptom of Level 1 Autism and still not be able to get a formal diagnosis because all of the current medical resources are almost exclusively focused on children.

Sometimes, self-diagnosis is all we’ve got.

[u/kindnesskangaroo → u/VGSchadenfreude]

This is what I’m going through currently in regard to my own diagnosis for autism. The psychiatrist who evaluated me for ADHD strongly suggested I get formally assessed for ASD if I can afford it. The problem is that insurance does not cover autism assessments for adults so I would have to pay out of pocket. This will cost me at minimum $1200 USD where I live. I can’t afford that, who the hell can afford that?

Do I have autism? Yes, most likely. I haven’t worked in 9 years and my husband has to help me navigate daily life because I had what can only be described by my therapists as autistic burnout so bad in 2016 that I almost literally died. It left me so cognitively impaired and destroyed my cognitive function to the point that I had to restructure my entire life around healing from this burnout. At this point my therapy team believes I will never fully recover and my new normal looks so wildly different from how I was ten years ago. All I want is an official diagnosis so that I can have peace of mind and so people like the miserable, hateful ones in this thread mocking others who are just desperate for some clarity will finally be quiet.

I’m so exhausted.

[u/VGSchadenfreude → u/kindnesskangaroo]

I’m going through that burnout myself right now, but without any support system and still needing to find a full-time job to keep a roof over my head…

[u/kindnesskangaroo → u/VGSchadenfreude]

I’m sorry to hear that. If it’s as severe as it was for me, I really suggest you make arrangements or something before your body decides for you. Because it will eventually until you’re disabled physically, too. I didn’t have the stability or support at the time either. My husband and family used to tell me all the time, “Of course people don’t want to go to work, you’re not alone. Suck it up and stop being dramatic.” So I thought I was just struggling with something everyone else dealt with easily (this was not it by the way and contributed major harm both mentally and physically). I thought everyone wanted to literally die when they woke up every morning and had this awful knot in their chest that never went away and were constantly nauseous, exhausted and miserable at their jobs. It wasn’t until I was hospitalized anyone took me seriously, but by then the damage was done.

On a brighter note after almost a decade of recovery and equipped with what a new normal looks like for me, I am stepping back into the academic sphere to finally and hopefully finish college. I was worried the sense of dread I always felt that made me want to throw up when faced with structure and constraint would return but it hasn’t so far and that’s been a relief. It gives me hope that maybe I can piece together som semblance of a life that isn’t dependent solely on government assistance, which would be a privilege and blessing.

[u/PenImpossible874 → u/VGSchadenfreude]

Also all medical resources for everything are directed at white men who live in Western nations who are middle and upper class.

It's hard for working class Americans, People of Color, people who live in Africa, Asia, Latin America, Polynesia, and Melanesia, and women, because none of the medical establishment is made for us.

Because a lot of symptoms of everything varies by culture and sometimes biology, stereotypical symptoms of autism in America is going to be very different from stereotypical symptoms of autism in Burundi.

If the stereotype in America is "boy who would rather play with chemistry sets than with other kids his age" then how would a poor child in Burundi get diagnosed if their family can't afford chemistry sets or any toys at all?

[u/NorthStarZero → u/paulfromatlanta]

After about 52-odd years on the planet I came to the realization that I might be on the spectrum. It had never really occurred to me, but one day - after reading up on a bunch of symptoms that are 100% matches. especially when I was younger - I've come to terms with the idea that it is probably true.

It helps that the "clinical" diagnosis is all based on behavioral observation (vice physiological, like a blood test) and that self-diagnosis in adults is considered valid. Definition is a very slippery fish.

It's also true that I have decades of learning how to mask and otherwise function in a neurotypical society. How much of my personality is really "me", and how much of it is leaned behavior that has become reflex through constant practice? I'm not sure myself.

I have gotten comfortable with my self-diagnosis, as boy howdy does it explain a lot.

But with that said, I also don't make it my whole personality. My self-image and external presentation is not tied to being "on the spectrum", and if someone ever invents a blood test (or some other hard measurable physiological test) for autism, and I come back negative... well that would raise a whole slew of questions about who I am and why I am the way that I am that my self-diagnosis explains, but it wouldn't be earth-shattering.

Quite the contrary; I'd welcome a definitive diagnosis based on something other than observation and subjective assessment, even if that diagnosis - once again - redefined who I am.

[u/Yglorba → u/paulfromatlanta]

No, the paper itself specifically goes out of its way to say they do not think that this means that self-diagnosis is necessarily invalid:

Despite the lack of identified measurement agreement in this study, we do not believe that these results suggest that self-report questionnaires are invalid for ASD research. On the contrary, they are important tools for understanding the subjective experiences, levels of internal distress or wellbeing and needs of people with ASD. In the context of well-characterized samples, self-reports are crucial to ensure that individuals with lived experience have a role in shaping the narrative surrounding them, as they can challenge baseless assumptions regarding the intentions or reasoning behind the behaviors of people with ASD. Rather than dismiss the importance of self-views, the results provide a caution for the use of self-report alone for defining or extrapolating about a diagnostic group as a whole.

They are very careful in their wording throughout; the key point isn't that self-IDed autism is necessarily invalid, it's the much more cautious conclusion that if you do a survey that relies on self-identification, you'll get a group with different traits than those where you confirm that they were professionally diagnosed (ie. they're not a representative sample), and that research therefore shouldn't carelessly use the two interchangeably or generalize results from surveys of self-IDed people to autistic people as a whole.

[u/starm4nn → u/Yglorba]

I wonder if you could correlate self-ID with other factors like socioeconomic status or race or gender.

[u/whinis → u/Yglorba]

That sentence doesn't say anything close to your summary. It says self-views are important for diagnosis and understanding of an individual and their distress, that not self identification is valid or invalid. If anything the entire study goes out of its way to separate clinical diagnosis and how valid it is and that those who self-report may not have ASD but may still feel its symptoms and have anxiety.

[u/Brossentia → u/paulfromatlanta]

Screening tests should be a tool to motivate you to get the help you need. Mind you, some people are in situations where they CAN'T get that help, and trying to understand yourself is part of the human experience; I don't blame anyone for that.

But I'm autistic. When I was a kid in the 80s, the doctors in rural Utah had no idea what was going on, so they said I was just weird. Wasn't until about a year ago I got a diagnosis. My husband feels he may be the same way - I really want him to get diagnosed, but it costs so much that we can't afford it. I personally don't think he is, but that could be incorrect; he knows his lived experience better than I.

With that said, I'm sorta stuck with diagnosed disabilities and with a husband who claims to be disabled but can't go to a doctor. I'm the only one really working while I'm trying to apply for help, and we're just sinking deeper into debt. I just wish he could see a doctor so we actually knew for sure what to do to deal with his problems.

[u/Larry-Man → u/Brossentia]

Doctors where I am also LOATHE doing tests or referrals for autism. They keep making me do ADHD tests (which is often comorbid but I definitely do not have) and getting formally diagnosed was a nightmare.

[u/Brossentia → u/Larry-Man]

Yeah, I had doctors give me the shrug and say, "Nah, I don't think so." But you know why? Because as a teen, I studied how to act human. I LITERALLY READ BOOKS TO UNDERSTAND HOW TO ACT NORMAL. My special interest happened to be humor, and I put in so much work understanding why certain things were considered funny.

Heck, I still use what I studied every day because I love to make people laugh. Turns out some therapists haven't seen many extroverted people on the spectrum...

[u/BaconCheeseBurger → u/paulfromatlanta]

It will upset even many on this very sub.

[u/lionseatcake → u/paulfromatlanta]

Reddit doesn't really grasp the concept that eyewitness testimony is like 90% unreliable. In any way shape or form, you can't explain that or you get bombarded with people telling you their own experience with self reporting and how accurate it was.

[u/ii_V_I_iv → u/lionseatcake]

You’re saying “Reddit doesn’t really grasp” this but the truth is that most people don’t really grasp that.

[u/lionseatcake → u/ii_V_I_iv]

I mean, reddit is "most people" anymore. We aren't the somewhat niche community we were when I joined this site, just an old way of speaking ig, but you're right.

[u/dtalb18981 → u/lionseatcake]

You are the worst judge of yourself.

Has been true forever but people get super mad about it because you are denying their "lived reality"

[u/alinius → u/paulfromatlanta]

No, it is more complicated than that. People do not seek professional help unless they think something is wrong. I would wager that the majority of clinical autism diagnosis start with an informal self assessment. Treating self-diagnosis as invalid would discourage people from seeking help. So, from a Reddit perspective, it is better to treat self-diagnosis as valid to avoid gatekeeping.

[u/Quillspiracy18 → u/alinius]

"Informal self-assessment" and "self-diagnosis" don't mean the same thing.

Everybody who goes to any doctor for anything has assessed themselves and identified a problem. They may even think they know the cause of the problem. That's fine, and it's the whole basis of the logistics of medicine.

"Self-diagnosis" is claiming a clinical label with no input (or even negative input) from a professional. It is arrogant and it dilutes public perception of illnesses.

Think about how offensive it would seem to sincerely claim you have cancer without even asking a doctor about it. If people found out, you'd be a social outcast, because most people know how brutal cancer is.

[u/demonicneon → u/Quillspiracy18]

Yeah. Guy on a course I’m on, really nice guy, but he says he has adhd and the college give him adhd support. Hes self assessed. Meanwhile I’m waiting to be seen by the autism/adhd team, after an assessment by my GP, to be properly diagnosed for years and I’m given no support because I’m honest about it - no I don’t have a diagnosis, I may have one of these things going on with me but I don’t know and I can’t claim to know. 

Every time he mentions it I’m like but you’ve not been diagnosed …

It ticks me off cause I’ve been struggling with MH issues for years and been bounced around different diagnosticians to the point I had given up until my current girlfriend pointed stuff out to me and pushed me to get seen again, and hadn’t considered or even known that stuff I thought was normal was not really normal. 

[u/cortesoft → u/demonicneon]

Doesn't this kind of explain why so many people don't get formally diagnosed? You have been trying to get diagnosed for years and have been unable to get the support you need, while someone who just declared themselves got help immediately.

Seems to me the smart choice is to self diagnose.

[u/demonicneon → u/cortesoft]

I can’t access medication without a diagnosis. Self diagnosis of adhd is largely pointless. The whole point for me is to get medicine to treat the condition so I can function the same as other people (if I do have it).  

I also don’t believe I should have to lie to access help. Nor should a lie allow you to access help. 

Unless you’re diagnosed I’m sorry but you simply “might” have it, you cannot claim to have it. 

The help they get is basically just leniency. I think that’s wrong. Anyone could claim they have it just to get leniency for time keeping, or later hand ins etc. 

[u/Elemteearkay → u/demonicneon]

Self diagnosis of adhd is largely pointless.

Seems to be helping that person you mentioned, and enough for it to make you feel bitter towards them for not depriving themselves of said help like you do, too.

The help they get is basically just leniency. I think that’s wrong. Anyone could claim they have it just to get leniency for time keeping, or later hand ins etc. 

It sounds like you've internalised some ableism, I'm afraid.

[u/kindnesskangaroo → u/demonicneon]

You can’t get SDS support without a doctor’s letter submitted to the college to show your clinical diagnosis. So either he is lying about being self-diagnosed or you are lying about him self-diagnosing.

I know this because I have officially been diagnosed with ADHD and received student support services. They wouldn’t give them to me without a signed letter from my doctors confirming my diagnosis.

[u/Elemteearkay → u/demonicneon]

If you need support, then you should access that support, regardless of whether you have a formal diagnosis or not.

Don't martyr yourself and become jealous of those who don't.

[u/ChiAnndego → u/Quillspiracy18]

It's more akin to having a giant tumor growing out of your face and telling people you think it's probably cancer, but you don't have enough $ to get it checked out, and anyways, all the cancer doctors are booked out 3 years and they only take patients that meet a certain demographic where cancer is most common.

The takeaway from this study should be that we need more clinical testing available, not that people that have symptoms should be gatekept. Women and "other non-typically autistic" demographics are falling through the cracks.

[u/grillcheezi → u/alinius]

This was how it went for me. I started learning about neurodivergence when a family member discussed potentially having ADHD. This led me to information about autism which clicked with me more than I expected, so I went to a professional to figure it out.

Turns out the “quirky” behaviors that run in the family have diagnosis codes.

I do not think online tests should be used to officially confirm anything, but taking one did push me to seek professional evaluation. The score made me think “Maybe this means something. Maybe I should learn more about this and see a doctor.”

[u/apcolleen → u/grillcheezi]

I have 3 friends so far who have either gotten an autism or adhd diagnosis because my memes were "too relatable". There is a lot that clinical presentations miss because what is available to medical professionals lacks nuance. Most of the coping strategies I have developed since getting diagnosed with ADHD at 36 and autism at 41, I have learned from mental health providers online who also have the conditions so their lived experiences mixed with clinical constructs can be better explained.

Most therapists made me feel as if I was choosing to be "too sensitive" and the solution was obviously to medicate me into dullness. But the real solution was medicating my ADHD that I hid really well because I was trying to hide how overly sensitive I was.Oh and I ended up with /r/dysautonomia because of masking so hard and then mold exposure sealed the deal.

[u/dtalb18981 → u/alinius]

No it's better to tell people to get an informed diagnosis

You don't tell someone to check webmd and figure it out when they have a runny nose, you tell them to go to the doctor.

[u/ghoulthebraineater → u/dtalb18981]

Not everyone can afford it. Even with insurance my assessment was nearly $1,000. And it's not like a former diagnosis really does much other than give you some answers. If you're lvl 1 and middle aged like myself you've likely already figured out coping strategies on your own.

[u/zeno0771 → u/ghoulthebraineater]

It is expensive especially in the US (after insurance mine was $1800). A formal Dx does a lot more then just "give you some answers", however.

I was 50 when I got mine and knowing why I am the way I am was a game-changer for me. In most cases, without a Dx, you won't know which behaviors are coping strategies, or even that there are any. You may just plow through life nihilistically and blame the rest of the world for all of your problems--a common behavior of narcissists as well, and that's not a group you want to belong to.

If you know why your various traits are what they are, you may discover that some of your coping strategies are actually harmful: Substance abuse is a common one. The externalities will all point to the substance abuse itself being the problem and not a symptom of something else. So now you're left with a harmful coping strategy being taken away and nothing to replace it with, because you don't know why you need a coping strategy in the first place.

If you don't know why you behave a certain way, it's not really a coping strategy; it's a shaky stopgap that doesn't follow any actual reasoning because not only do you not know why you behave the way you do, you also don't know why others behave the way they do toward you.

[u/dtalb18981 → u/[deleted]]

Because for a lot of people their feelings matter more than objective reality.

They have decided they are autistic because of xyz so they are autistic because it makes them feel better.

Instead of just admitting they could just be weird.

[u/alinius → u/dtalb18981]

Ok, and how do you know you need to get an informed diagnosis? How many people with a runny nose think it is just allergies, take some OTC meds, and call it a day? It is only when that person thinks it is more than just allergies that they would go to the doctor.

[u/dtalb18981 → u/alinius]

If you are at the point where you are Googling things trying to figure out if something is wrong with you.

That is the time to go imo

[u/Shufflebuzz → u/dtalb18981]

You go to the doctor for a runny nose?

[u/cortesoft → u/dtalb18981]

What? You wouldn't tell everyone with a runny nose to go to the doctor, that would be way too many people going to the doctor. You do some self triage first, and then decide if it is worth going to the doctor.

[u/dtalb18981 → u/cortesoft]

It's called an example

Your comment is almost the definition of pedantic.

[u/mancapturescolour → u/paulfromatlanta]

Here's what the article says:

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 [self-reporting] reflecting internal experience and the other [clinical assessment] focusing on observable behavior.

I take it that this isn't necessarily a "one is [always] better than the other" situation, but rather, the finding suggests that the two have strengths/weaknesses that the other method does not have. Thus, both can be useful and cover more ground when evaluated together.

[u/Shaeress → u/paulfromatlanta]

It didn't say better or worse, but that they yield different profiles. And this makes sense as diagnosis is mostly used a tool for supplying care, which means the diagnostic creteria are largely based on dysfunction rather than actually some set of traits or differences that actually make up autistic people. And that psych care is usually only provided to people who struggle to function at school or work, rather than to people who might need it for other mental health reasons.

For instance, one does not need to have learning difficulties or struggle with mood regulation to have autism. But kids that struggle with certain learning and mood regulation are vastly more likely to get formally diagnosed since they will have/cause trouble in school and will need a formal diagnosis to get accommodations at school. Once they throw a few tantrums the teachers will try and do something about it.

Meanwhile a kid managing their social difficulties by being quiet and polite, while having a special interest in volcanoes is more often going to go undiagnosed. They'll likely do fine with the their schoolwork and they won't cause trouble for teachers, even if they end up not having any friends or emotional connections. They might have a lot of internal problems, like depression and anxiety, but if it doesn't impact school/work that will usually not be addressed by psychiatric care or trigger a diagnostic process.

Both of these hypothetical people would be fully autistic and it would be impossible to determine that one is actually struggle or suffering more from it, but one would be far more likely to get diagnosed than the other due to their symptomatic profiles. That's what the study is saying. That self diagnosed and formally diagnosed autistic people tend to have different symptomatic profiles. Not that formally diagnosed people are more accurately autistic or more autistic or yield better autism studies.

[u/AP3Brain → u/paulfromatlanta]

Anyone feel free to correct me but don't they officially diagnose autism through a long questionnaire? So aren't all cases kind of self-reported? It's not like they can do some blood test or brain scan to determine it.

[u/SarahC → u/paulfromatlanta]

I've got one observation.......

Unless the psych is in the field with the person they're diagnosing, they're ALSO only getting self reported information from the person, and whatever scant evidence they can during the hour they see the person.

No wonder psychiatry is hard.... half the time you're trying to figure something out from an "unreliable witness".

I bet psych diagnostics would go right up if they were to spend a week shadowing a person.

Damn, I've invented a new form of psychiatry..... "observational psychiatry" - involves being "in the field" with the person being studied, like one would do with penguins.

[u/nagi603 → u/SarahC]

they're ALSO only getting self reported information from the person

...or worse yet: from others. "No doctor, my son is perfectly fine, how DARE you suggest otherwise!"

[u/Extreme-Tangerine727 → u/paulfromatlanta]

I think self diagnosis was, at first, okay. Someone who self diagnosed themselves in 2008 probably really looked into it. Self diagnosis changed with the advent of TikTok and Instagram. There's now an entire culture of mass hysteria around autism and ADHD

I was diagnosed with autism back in 2001. It's incredibly frustrating to explain to people today what my disorder is because they are used to thinking of autism as some random cute quirky disorder. It is not. I do not misinterpret things in a cute way leading to a cascade of social hijinks, I have uncontrollable meltdowns when I hear certain frequencies of sound.

[u/ratpH1nk → u/paulfromatlanta]

Never in a million years did I imagine a day where people will clamor to self diagnose themselves with a disease/ailment and insist in the delusion when evidence is presented to the contrary.

I am in the camp that this trend is very disrespectful and minimizes the harm and trouble that people with actual ADD, ASD, bipolar and OCD, for example struggle with.

The DSM manuals follow pattern (in very broad strokes) X disease is defined by symptoms ABCDE etc…that cause damage/difficulty/problems in everyday life.

Real problems . Not I get bored with my job or I don’t want to study etc…or I’m just a bit weird.

(To reiterate this is a very 50,000 foot view)

[u/lonewolf210 → u/ratpH1nk]

I don't think it's entirely just because it's trendy. I think a lot of people just don't understand the difference between "I like my room to be clean so I sometimes more time then I should cleaning" and "I feel so compelled to clean that I couldn't leave the house to pick up my kids because I found something out of place".

A lot of people miss the key aspect of diagnosis for mental health problems which are that the problems/behavior persists despite extensive negative consequences in your life. Which go beyond I didn't do my homework I am so ADD

[u/r0ck0 → u/lonewolf210]

Yeah, I guess some people forget the "disorder" part of the names.

And they might sometimes soften it down more to simply "traits", which might even be "orderly" sometimes, haha.

When people say stuff like "everyone has a little ADHD / OCD in them"... they're kinda right if you're ignoring the "disorder" part, and you just mean "traits".

But when it needs to be simplified down to a binary diagnosis per individual... "disorder" is generally the deciding factor / threshold on these spectrums.

[u/faetpls → u/lonewolf210]

So, I've heard and made the jokes about myself with ADD for twenty years. Just jokes, never really thought too much about them. I saw it more as oh, I kinda struggle with those things too but not so bad as those with a real disorder. I went to a doctor and mentioned it once and they laughed it off with me.

COVID destroyed all of my routines. I couldn't do anything I wanted to do. That was the biggest tip off for me, and things added to the can't do list as I spiraled. The trendyness and quizzes gave me the confidence to seek professional help again. This time receiving it.

My life, my childhood, everything has a more stable context to my thoughts feelings and actions now. So, with everything that goes mainstream, there's pros and cons to it. If it hadn't gone so mainstream though, I don't think I would have gotten past the shame and denial to seek help again.

[u/00owl → u/lonewolf210]

As a gamer and someone who was diagnosed with ADHD at the age of 32 (4 years ago), it drives me up the wall when someone says "oh this game really triggers my ADHD!"

Prior to my diagnosis I couldn't play a game like factorio because it would give me an anxiety attack.

I have days at work where I will be typing an email and forget the next word I was going to type mid-thought. I type at 100+ wpm.

Prior to the meds I would wake up in the morning and begin my day with a healthy helping of anxiety as I couldn't decide whether to feed the dog or the cat first and would often get halfway through feeding one only to set it down and start on feeding the other all without making an actual decision.

Having my ADHD triggered isn't a fun experience.

[u/cortesoft → u/00owl]

Sure, but not everyone with ADHD is going to be triggered by the same things as you.

[u/plumitt → u/ratpH1nk]

You know that the DSM is highly problematic, right?

If you imagine the platonic diagnostics.for autism spectrum disorder, whatever it is, whereby we had perfect criteria that would 100% let people know if they fell into that category or not, one would still have to question if the definition of the disorder was appropriately in/ex-clusive.

what does it mean to have the disorder? Is it just a statistic match to a set of symptoms? what if someone has a brain injury, traumatic, that perfectly mimics them? or has a totally unique underlying physiology which is sufficiently indistinguishable?

For that matter, what is the point of a Formal Diagnosis? Is it to maximize therapeutic utility? To experience inclusion in some group, reducing the sense of othering? To facilitate discrimination/inequity/inclusion/equity on that basis? It clearly has served all these purposes.

My point being, the DSM is not the be-all and end-all of human knowledge on the topic of ASD etc al. It is not the optimal predictor of therapietics. It does not measure, predict or even try to understand underlying physiology or etiology.

at this point, the DSM seems to to serve mostly like a gatekeeper for insurance coverage. If you can get someone with the appropriat degree & authority to assert degree that you meet these criteria then it is often easier to be someone else pay to try to take care of you,.or to provide accomodations , etc.

imagining that this set of criteria used for this purpose is complete and correct, or that everyone who could even meet this criteria has the privilege and wherewithal to access diagnostic alone therapeutic care , I'm sorry to say, is, at best, wishful thinking and , at worst, actively harmful to some segment of the population.

The DSM isn't all that and a bag of chips. The system is broken. It is gamed, abused, and used for oppression. Relying on it to be correct at the cost of harming some who are unable to play by the system , is its own form of oppression and it's wrong, just as visa versa (not using it appropriately, and misplaying the system)

education of course is a likely huge component of the problem of people misdiagnosing themselves and inadvertently causing harm through misrepresentation of a DSM-real condition.

And if I misunderstand your sentiment, please forgive me. If this characterization doesn't apply to you, perhaps it will swap another reader for whom it does.

[u/Prof_Acorn → u/ratpH1nk]

Autism isn't a disease.

I don't need an allistic who relies on learning aids to tell me what I know I am.

Autism and ADHD change how the brain processes information. This changes how people think. This changes how people communicate. Patterns in communication can thus indicate allism or autism, and ADHD or not, simply by paying attention to those patterns.

And those patterns are more reliable to those of us who know what to look for than any kind of pathologized diagnoses by this shoddy ass institutional system.

There is no difference between diagnosing a computer issue, a car maintenance issue, a brain issue, or a body issue. It's all the same. A psychiatrist, physician, IT tech support, and car mechanic, are all doing the exact same thing - just with different subjects of focus.

Some people can troubleshoot their own car. Others cannot.

Some people can troubleshoot their own computer. Others cannot.

It's the same with medicine.

Believe it or not, but when I get a headache I don't need to see a neurologist in order to diagnose that it is due to dehydration, nor to administer treatment of drinking a glass of water.

Online tests, as this indicates, are questionable, sure. Same as asking Google AI to tell you what's wrong with your computer. That's stupid. But that doesn't mean everyone needs to go to a neurologist to diagnose a dehydration headache. And this too.

[u/carnivorousdrew → u/paulfromatlanta]

I've actually met people who said "I took a few tests online, they all said the same" when asked how they were diagnosed. Gotta say, they always match a certain archetype.

[u/Specialist-Sun-5968 → u/paulfromatlanta]

There are whole subreddits dedicated to people self diagnosing themselves from a picture of themselves with funny hand positions.

[u/CupcakesAreMiniCakes → u/paulfromatlanta]

Indeed, so many people underestimate or overestimate qualities of themselves. Then there was this girl complaining about really bad symptoms she had whenever she ate bread and I had to be like girl that is severe celiac disease just like I have (more severe than most) and you NEED to go see a doctor and stop eating it immediately before you cause yourself permanent damage. Other people self diagnose what seems like numerous/many things and wear it as a badge of honor and they might not even have any of them.

[u/Chance-Day323 → u/paulfromatlanta]

Not necessarily, self-diagnosis is also much more widespread and professional diagnosis is socially mediated both on outcome and on access/referral so the two are measuring different populations and it's impossible to disentangle the true positive rate from those sampling biases based on the information reported here.

[u/MagicWishMonkey → u/paulfromatlanta]

I do not understand the fixation with terminally online people and going to go get diagnosed with autism. It's such a weird phenominon.

[u/ahoy_capn → u/MagicWishMonkey]

You can explain away any lack of social skills if you self diagnose as autistic, just like you can blame self diagnosed ADHD for not wanting to study.

It weaponizes the destigmatization of neurodivergence. No failures are my own - in fact, I am a victim.

[u/CanadianSyndrome → u/ahoy_capn]

Completely agree with your assessment.

For years I've been wondering why the hell everyone suddenly thinks their autistic, I've gotten a lot of pushback for calling out the obvious trendiness of the topic. People feel it means they're smarter, different, not "typical" at all, because who would want to be typical?

If all of you identify as neurodivergent, then none of you are neurodivergent, it would actually imply the opposite.

[u/kindnesskangaroo → u/CanadianSyndrome]

Autism is a spectrum disorder by the way, which means that everyone in the whole wide world is on it. That’s what a spectrum means by definition. However, you have to meet a certain threshold of criteria on this spectrum to be clinically diagnosed.

Hope this helps!

[u/triplehelix- → u/ahoy_capn]

i think there is often some narcissism mixed in there. you can often find these self diagnosed "neurodivergent" individuals talking about how special they are, and how they feel "normal" people are boring or something to that effect.

[u/Epistemify → u/paulfromatlanta]

And the thing is, 'has some traits of autism' still means that it can be helpful to hear from others who also are like that and discuss similar experiences.

There's no need to insist that need a diagnosis! Spaces to discuss living with those traits are still good and fine. But the other part of a diagnosis is that you require a level of professional support to get by in life. If you don't need that, you don't need a diagnosis (and IMO don't insist to be treated the same as someone with a diagnosis)

[u/dystopianpirate → u/paulfromatlanta]

It'll also upset lots of folks on Twitter

[u/MaggotMinded → u/paulfromatlanta]

Even when you have a doctor provide an official diagnosis, a lot of it is based on information that is self-reported by the patient. Questions about their home life, mental state, basically anything that cannot be directly observed in a clinical setting, is all up to the patient’s interpretation. But people exaggerate, misjudge, and omit things all the time.

[u/janitordreams → u/MaggotMinded]

True, but official diagnosis is also based on their own clinical observations of your behavior, with additional input gathered from others who know you, like family members. Teachers, too, if you're a child. I was stunned to read my diagnostic report. Some of the things the diagnostician observed in my behaviors were things I wasn't at all aware I was doing. I think this study is saying that relying on self-report measures capturing subjective experience alone isn't a good idea. Both are needed.

[u/Just-Feedback-2223 → u/paulfromatlanta]

You are not here to learn how the researchers conducted the research. You are here to take any mention of autistic people and turn it into an unrelated vent about self diagnosis. You didn’t understand what the title meant and commented without opening the article, right? It’s not too late to delete this comment.

[u/Just-Feedback-2223 → u/Just-Feedback-2223]

And before someone tries to claim I’m self diagnosed, I’ve been diagnosed for almost a decade now. I don’t care about self diagnosed people. There’s nothing I can do about that so why would I put energy into that? Y’all should put this energy into something that will actually have a positive impact on the world - like advocating for support for autistic adults since y’all claim to care so much about us.

[u/ErraticUnit → u/paulfromatlanta]

Someone didn't read the linked document. That will surprise no one on Reddit ;)

[u/Just-Feedback-2223 → u/paulfromatlanta]

You do realize that the researchers were aware of the diagnosis status of the participants, right? Oh wait, you couldn’t even understand the title of the article. It’s okay if reading isn’t your strong suit.