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/[deleted]]

Most adults that self diagnose do A LOT of research that goes beyond your limited understanding of what self diagnosis ACTUALLY is.

My AFAB brother is autistic. They recently got clinically diagnosed and they were lucky that it was only $1200.

They told me to get assessed because "we're basically twins".

I looked into it for six months. On the Raads R test, which i took multiple times at different mental states, my score was out of the water for autism.

When I finally got a doctor who was "covered by insurance" she asked me random questions that didn't seem like the normal autism assessment, despite her office telling me she could diagnose autism, and she then dropped the "you can't be autistic because you can drive and make eye contact. Autistic people can't do that, and you act nothing like the boys i proctor".

I was FLOORED because the boys ages, i asked, were 8-10. I'm an adult woman in my 30s.

She then proceeded to call me "high functioning" and i reminded her that those are not diagnostic labels anymore, it's level 1,2&3 plus either high or low masking.

She told me "WELL! I actually can't diagnose you anyway, you're better off not wasting your time it's expensive and people will just assume you saw a TIKTOK."

I never went back to her.

Do you know how many tiktoks I've seen? Zero. I've never looked at tiktok in my life.

And my doctors that i have a relationship with are have agreed "yeah you're probably autistic but we can't diagnose you."

My therapist said "we're moving forward as if you have autism, but there are really no helpful tools for adults, so I've sent you links about acting to try to understand communication"

I looked into getting a diagnosis and it's $5000. Out of pocket and up front. And for what? So i can have something put in my chart?

It's not like i can get help for this anyway because adult autistic resources are lacking, if they exist in some places at all.

So when you think it's just a few tiktoks that people are watching for this, you are perpetuating misinformation on what self diagnosis actually entails.

Autistic groups recognize self diagnosis because professionals base their understanding on children, there are barriers to getting a diagnosis, and the wait lists are years out.

You need to do YOUR OWN research on what self diagnosis means.

Edit: massive typos

[u/5-ht2ayyy → u/[deleted]]

Okay, but can you at least acknowledge that autism has become trendy within certain communities lately, and that a lot of this self reporting is based on these people being in these communities, other people talking about their self diagnosis, and them finding commonality with these people that leads to their own self diagnosis??

Because, if not, you’re seriously biased.

I was diagnosed with autism when I was a kid, it definitely wasn’t something I just stumbled upon in my thirties if you catch my drift lol.. So it’s hard for me to believe all these quirky hipsters now days just randomly are like wow, some people make me uncomfortable and I have weird food habits, I must be autistic… lol.. But considering I also drive, and can hold a conversation I guess I wouldn’t fit into the diagnosis if in your situation either.

[u/thenakednucleus → u/5-ht2ayyy]

Good for you to have been diagnosed as a kid. I was always just weird. Nah, nothing wrong, he just needs to try harder. Be less lazy. Be less weird. Family doctor said I can’t be autistic because my grades are good and I can keep eye contact.

You internalize that shit. You start to believe that yeah, you struggle, but so does everyone. Everybody practices how to react to a joke in front of the mirror for hours. It’s normal. You just weren’t practicing hard enough. And also, autism, isn’t that for the kids who can’t even tie their own shoelaces?

It’s not a fucking trend, we are just underdiagnosed as shit. Especially those 30+. Especially women.

Wished I would have been privileged enough to get a proper diagnosis as a kid.

[u/5-ht2ayyy → u/thenakednucleus]

I definitely understand the whole “try harder and be less lazy” thing. I couldn’t tie my shoe laces until I was in my early teens. So, yeah, that is something that can be a thing.

It is undoubtedly a trend. I’m not saying that to disempower you or anybody else. I’m just saying it because it’s true. I live in Portland, talk to literally anybody with colored hair for long enough and they’ll say they’re autistic.. I’m not at all doubting some of them actually are, but to say it isn’t a trend or isnt misrepresented for social status in some communities is just blind.

Privileged? Lol. I grew up in the late 80’s-90’s dude, it wasn’t as much as a privilege as it was a great way to be ostracized and treated differently in not healthy ways.. I was held back multiple years, and ended up getting a GED in jail because of how I reacted to unregulated emotions when I was a teenager… I definitely wouldn’t call that privileged..

Now days that definitely isn’t the same case for most kids. Which is good, but different to say the least..

[u/thenakednucleus → u/5-ht2ayyy]

So we’re roughly the same age. Looking back I wished I would’ve had a reason why I was ostracized. I wouldn’t have tried to be „normal“ so hard it seriously impacted my mental health and the course of my life. But yeah. Maybe it’s a trend in Portland, idk. It certainly isn’t where I live in Central Europe. Lots of people in their 30s getting diagnosed, sure, but they all have to fight for years and provide evidence to even get tested. Never had anyone except close friends tell me they’re autistic, certainly no randoms with blue hair.

[u/5-ht2ayyy → u/thenakednucleus]

Gotcha. Aww, yeah I can see that being a thing and am sorry you dealt with all that. I went through that also. It definitely was better once I just accepted I am who I am, and worked towards regulating my emotions better. Now days I’m doing pretty good, still struggle with some things but nowhere near what it was in the past. Although I still don’t feel the need to tell literally everybody I meet though, have it be my identity, or use it as some kind of get out of jail free card when I’m being an asshole. It’s just something that’s there, and I might have to adjust my life around it a bit in certain circumstances.

Oh for sure. That makes sense. Yeaaah, it’s definitely a thing in some parts of the US… I’m pretty sure I’d feel a lot differently about this if I didn’t live here and didn’t experience it as much as I do, but alas.. lol..

[u/Buggs_y → u/thenakednucleus]

You're projecting your experience onto the masses. Just because you practiced how to respond to jokes in front of a mirror doesn't mean most people did.

[u/thenakednucleus → u/Buggs_y]

Read my comment again, I’m saying it took me a long time to really understand that these experiences were due to autism and not universal.

[u/[deleted] → u/5-ht2ayyy]

You are assuming a lot of things that I didn't say and I'm not going to further interact with you.

[u/5-ht2ayyy → u/[deleted]]

I wasn’t assuming those things about you, my bad that it came off that way. I was trying to make a general statement about the types of people who I know/have spent time with that make claims of autism without formal diagnosis.

Hopefully obviously that doesn’t apply to everybody, yourself included. I don’t know you, so why would I even begin to make judgments based on a comment you made on reddit lol..

But yeah, good luck with finding a doctor who is more open minded, I’m not sure exactly what a diagnosis would help you with given the lack of resources and what not, but either way best wishes.

That said, I don’t think being realistic and acknowledging that autism is in fact trendy is a bad thing. A lot of people want to feel like they’re different or special and when terms like “neural typical” are used more and more to describe certain A type personalities that many people find to be counterintuitive to their own personality, and there’s a community to interact with, all this information being shared, etc, it’s not surprising that a lot of people want to define themselves in that way. Especially younger people, or people who didn’t quite fit in when they were younger and are seeking a way to make that make more sense or have found that it gets them attention that they seek out.

I just personally have kind of a quip with some of it considering I did in fact struggle with my symptoms a lot in the past (as I’m sure most actually autistic people have), and have had to work through a lot of self doubt and shame because of that. And to see people just joking around about things in their personality that they find silly, or quirky by saying things like “oh I just have a touch of the ‘tism” or people just generally being assholes, rude, or genuinely lazy get sympathy because they claim to be autistic isn’t my favorite either.

Maybe I’m biased because of where I live, and maybe in some places it’s not as much of a thing, but it definitely without a doubt is here..

[u/[deleted] → u/5-ht2ayyy]

I think it's also that people who communicate online are often seeing trends and then it's reinforced by children/younger people who are trying to jump on the bandwagon but they likely are just kids/younger little who don't know any better AND don't know themselves well. It's the equivalent of middle school gossip.

Adults who are not online chronically, there are a lot of them despite now radical that sounds lol, are going to be thinking in a more mature manner than children and younger people by default due to life experience, even if they're autistic, because autism isn't something that makes you stupid or immature, but like you said, by neurotypical standards, it's considered that way.

Couple that with the internet shows you the dumbest people sometimes and they get fifteen minutes of fame, and it's no wonder that people would try to jump on the bandwagon.

There is a literal reason the bandwagon effect exists, and we're seeing that right now. And who cares about trends? Children, younger adults, narcissists, and also immature people.

I am not on tiktok so i can't agree with you that it's trendy because I don't see that first hand. I can agree that there are people out there who will attention seek, but, I'm older than you it seems, and people have ALWAYS done shit like that.

Hell, the animated movie Balto, about the dogs lol, Steele is doing just that and then the group realizes he's been lying the entire time, and what did Balto do? He just did his own thing because he didn't want to waste his time with Steele and neither did Jenna.

I use that as an example because it's basically what you're talking about, the dumbness of certain people and those who give them fuel to their fire. When the world moves on and is able to ignore those people, they'll move on to whatever else gets them attention.

All the autistic people i know who self diagnosed have money to get a diagnosis, except myself lol, but my doctor's do agree with me after all my research and my personal history.

Psychology is a soft science because it's always evolving and changing, and personally, i think it's hubristic of humans to be able to say that people have one thing or another with the limited data that we do have, so we use our best guesses, because even within the autistic community there are divides, and some autistic people believe that our newest classification system with the levels is wrong too.

At the end of the day, this entire thing is to say that you don't know if those people are saying it to be trendy without knowing all the facts, and when you think "that person can't be autistic" and it's backed with emotion, you're falling into the camp that doesn't believe actual autistic people, and it harms the overall community.

So the best thing to do is realize that you don't know those people, you cannot say a person is or isn't autistic, you can infer, but that's still just a negative thinking pattern in yourself that doesn't help you at the end of the day.

I had severe OCD as a child which was brought about because of trauma to the point where i went to therapy at 7 years old because it was BAD. But this was in 1998 so autism in girls wasn't a thing.

But in that therapy, I learned there that it was necessary to ask yourself fundamental questions about a situation. For people who are bothered by the prospect of self diagnosis, this can look like the following:

What does it matter if somebody is doing the thing that bothers me?

If i go home, will this be affecting me there, other than my own musings?

Is the thing that bothers me going to hurt other people?

If i know that groups out there recognize self diagnosis, does it help me to question or even tell people to get a diagnosis from a professional, when those same groups say it's valid due to barriers that exist for getting a diagnosis?

The answer to all of that is no, none of it mattered at the end of the day.

Why?

Because even if somebody is doing it for attention, when you go home, it's not going to hurt you because

• they're not getting help from organizations,

-they're not taking away resources from others

The thing that they are doing is getting attention, and at the end of the day, that's usually the end identifier of the grief.

That's why introspection is important, because it allows for you to know that although your feelings are valid, they, at the end of the day, are worries you can let go of, because those people who ARE attention seeking, in ten years, it won't matter to you, or them.

I have the "analyzing forever" autism. I've gone through a lot, and i can assure you that i without a doubt have autism, and my life has been a struggle, and i understand what you're feeling, and the only solution to helping yourself is basically ending at the most basic question: how do their lives affect me, and am i allowing other people to control my emotions?

You've mostly said all the above, but , when you can let go of that anxiety and irritation from those people, you'll realize that it doesn't matter at the end of the day, and you'll feel better, and those who would seek to attention seek no longer hold power over you.

[u/5-ht2ayyy → u/[deleted]]

Sorry to hear about your past experiences, but I’m glad you seem to be doing better now.

Online, yeah I totally agree with that.

But when it’s in person, regularly, and came out of nowhere like 10 or so years ago and has just become more and more of a thing to talk about or even base your entire identity on, It’s pretty obvious it’s a trend among certain communities.

I’m in my over the middle/late thirties. And these are people in their late twenties to around my age, it’s not just kids..

Their lives don’t actually affect me, I never thought they did. I don’t have any issues separating my life from my opinions, or I probably would have moved from here awhile back when this like-minded demographic of people started becoming the norm around here. But overall they’re generally chill, the food here is good, and the PNW is beautiful so I just keep my opinions to myself for the most part lol.

Also on the part of “they’re not getting help from organizations, or they’re not taking from others part”

This is definitely not entirely true. In Oregon we have a state funded healthcare system that’s very easy to get approved for. Which is great, and I hope it continues to be great. But, there’s only so many doctors, and even fewer specialists, who take it and if you want mental health treatment the wait is very, very long because of this. We also have tons of programs for various reasons tailored to helping people with all kinds of issues.

I’d wager to bet that trend isn’t helping people who actually need to access these services do it.

[u/[deleted] → u/5-ht2ayyy]

That's certainly a take that i don't agree with, considering I've worked in healthcare and tell you right now that's just not how things work.

You just said it bothered you in a different post, so, my question is if it doesn't bother you, then why are you here saying that it does, but also doesn't?

Anyway, I'm evacing cause i just don't care lol

[u/SoFetchBetch → u/5-ht2ayyy]

Autism is severely underdiagnosed in girls and women because of a lack of research and the fact that we are socialized to mask so intensely.

Other people can have autism too.

[u/5-ht2ayyy → u/SoFetchBetch]

I’m aware yes. That’s besides my point entirely though, both things can be (and are) true it’s not one or the other.

[u/Lankuri → u/[deleted]]

Nah, I agree and I've been professionally diagnosed with autism. Don't be weird.

[u/[deleted] → u/[deleted]]

Clearly you didn't read this at all because I've never used tiktok in my life

[u/Chamiey → u/[deleted]]

So you paint someone over their face with your "broad brush strokes", and then you feel entitled to "be a dick" for their response being emotional? Do I read it right?

[u/Buggs_y → u/[deleted]]

I just want to start out saying that your individual experience may be different than what I'll be referring to so please don't think I'm say your diagnosis isn't legitimate.

Self diagnosis is just that - A person diagnosing a condition within themselves by themselves. Just because Austism groups recognise self diagnosis doesn't mean that self-diagnosis is as good as a professional diagnosis. It just means that they are willing to support people who believe they are autistic.

I've seen a lot of adults self diagnose and most of them do deep dives into whatever it is they're self-diagnosing. The problem is that this amounts to study. They start off with a mindset where they think they might have it and eventually believe they have it. That belief then influences how they answer questions and how they evaluate their symptoms. Masking becomes the great equaliser whereby if you don't exhibit a certain trait it doesn't matter because you're just really good at masking.

Social media makes the problem even more profound. Well-meaning health agencies put out information with the intention of creating awareness and uses simplified language in increase accessibility. The description of symptoms is vague enough that it triggers the Barnum effect (when individuals believe that generic information which could apply to anyone applies specifically to them). The comments section becomes full of people who say 'omg, that's just like me!' and so they think that they too must be autistic. But in truth some of these behaviours like feeling socially awkward, not understanding sarcasm or jokes or being blunt/tactless are normal human behaviours that we all experience to some degree.

[u/[deleted] → u/Buggs_y]

You can tell me all day that it's people "on social media trying to fit in" and I am going to say the majority of self diagnosed adults aren't even outing themselves, and nobody wants to be autistic except children trying to fit in.

I'm talking about adults. Adults are not children.

Of course children are going to jump on the bandwagon and so are narcissistic and adults.

At the end of the day, it really doesn't matter because nobody is being hurt by it. People can say all day that they are but the fact of the matter is that nobody is being hurt There are no benefits that someone can receive for self diagnosis.

We are doing more to disprove things than to actually help people get help.

[u/ManchesterNCP → u/[deleted]]

autistic groups recognise self diagnosis

Check the demographics of those autistic groups and see how many self diagnosed people there are and then connect the dots. Especially on reddit.

[u/hellishdelusion → u/[deleted]]

Please try not to use afab and amab language as they've been co opted by transphobes. Could in the future you try to lean towards FTM or trans guy/man?

It's gotten so bad that many in the trans community would sooner rather hear slurs than hear people continue using that language. Since at least with slurs the meaning is obvious with afab and amab it can be just as hateful but used like a dog whistle.

[u/[deleted] → u/hellishdelusion]

No because that is what my brother calls himself.

I am respecting my brother's choice. You don't have to like it and it might not be mainstream but I am respecting his choice of how he wishes to label himself.

[u/hellishdelusion → u/[deleted]]

He likely has yet to see the use I'm talking about or as it's often a dog whistle may have gone over his head. If he saw how its being used as hate and fully understood it I doubt he'd continue to use it that way.

[u/[deleted] → u/hellishdelusion]

I will respond to you and say that I understand what you are trying to say. I understand the ramifications of that word, but in the context of talking about my own family I am going to respect their wishes. When they tell me that they are no longer going by that, that is when I will change for them. I do not use this term in the context of other people because I am aware of the ramifications of the word.

I do want to say though that expecting everybody to comply with that and going on a crusade across Reddit is the wrong way to go about that because it comes off as way too social justice warrior and a lot of older people find that to be obnoxious.

You can tell me the reasons all day everyday but my brother would tell you that half of the United States which is reddit is a United States based company, can't read above a sixth grade level and they would tell you that you are setting yourself up for disappointment by expecting the world to be able to comprehend what you are saying.

Your intentions are good, but I feel like you could be expending your energy in a more productive way than telling people how to police their own speech.

my brother would again say to you if people are trying then great. That's all that you can ask from some people, and it sucks that the world is that way, but when you stop expecting top performance from the world, you are able to live a life where you can exist in it and you can be living with less stress.

Because your intentions are good at the end of the day but they are misplaced and you are wasting your energy half the time. Because when you go about doing what you're doing, it's going to piss a lot of people off anyway. People dismiss things like that because unfortunately the internet is a cruel place, like you said.

[u/[deleted] → u/hellishdelusion]

You are telling me about my own family and i find THAT to be highly offensive.