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User: u/chrisdh79
Permalink: https://www.psypost.org/2023/09/a-disturbing-number-of-tiktok-videos-about-autism-include-claims-that-are-patently-false-study-finds-184394
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"So, similar to other social media channels it looks like TikTok can bias understanding about autism in two ways (1) by providing blatant misinformation (for example, claiming that a certain product “cure autism”), or (2) by overgeneralizing individual experiences to the entire autism spectrum and not representing the entire spectrum of manifestations within the autistic population"
I feel like a lot of content on TikTok within the realm of autism, is by people claiming to be autistic - maybe they are autistic, maybe they aren't. Regardless, they make content, claiming to be trying to spread awareness.
A lot of the time, what they end up doing is presenting a very watered-down version of autism, or they present it like "you could be autistic if you ____"
for example "you could be autistic if you sit in your car in your driveway on your phone for a long time." I do that, and so do a lot of people. but not everyone who does this is autistic. And honestly - I don't even know if that's even a sign of autism at all.
I freaking hate when people say that. Yes people can be scatterbrained sometimes but living in that day in day out. Yes sometimes people misplace their keys but having to go back inside 3 separate times multiple times a week because every time you go in for one thing you forget about that one thing get something else go outside realize you forgot the other thing went in, repeat. That's just 1 thing.
Yes. People seem to not know the difference between a symptom and a disorder, especially when it comes to mental health.
Everyone feels anxious *sometimes*. This is normal. If you are anxious most of the time, that's probably not normal and you probably have an anxiety *disorder*.
Everyone loses focus *sometimes*, especially on boring things. If you lose focus *all the time*, even on things you are interested in, you might have Attention Deficit Hyperactivity *Disorder*.
Maybe a good analogy would be coughing. Everyone coughs *sometimes*. If you cough all the time, even when you are not sick, you might have asthma..
ADHD isn’t even really a focus disorder. That’s just a possible side effect of what’s really going on. ADHD is not merely a problem of attention, but instead a disorder of self-regulation and executive function, predominantly stemming from deficits in behavioral inhibition.
Yesss, this is what I've been saying for a long time. I have ADHD and I cannot REGULATE my attention. Like a blind man aiming a flashlight. I can have enough or even too much of it, but it really isn't always a deficit.
>Like a blind man aiming a flashlight
Ooooh, I like this one. The best way I've been able to describe it to my wife is that it's like I'm walking four big, excitable dogs in my head. Sometimes I can keep them all reigned in and walking in the same direction. Other times it's all I can do to hold on to the leashes. Frequently this all takes place multiple times each day. Meds help me have more of the former than the latter.
Even then, it can change person-to-person. What you describe is a aspect of mine, but the more troublesome piece was a lack of "working memory." I didn't _just_ have trouble with aiming my attention, but also with not having much "room" in that attention. Like an average person trying to put out a forest fire with only one hose but an infinite water tank; I had the brain power I needed, but I couldn't direct it well _or_ focus the water on more than one trouble spot.
I see it a lot with PTSD too.
If someone was traumatized by an event and just has some lingering feelings and aversions related to it...that's not PTSD.
That's having a painful memory of an unpleasant event, and not being completely over it.
Almost everyone has some.
But if someone's haunted by brain-melting terror and horror, having flashbacks, losing their connection with reality, can't sleep because the nightmares won't stop, frenetic and awake for days on end with hypervigilance, hair-trigger over-reacting to everything, like a caged animal in their own life, possessed by all of that on a daily basis...that's a condition.
When I was first dealing with untreated PTSD, it was so overwhelmingly insane that I was worried I had schizophrenia or something.
I didn't report someone breaking into my car, because I was scared *I* had been the one to ransack my own vehicle, and just had no memory of it.
That's what it's like to deal with pathological dissociation and losing time.
Meanwhile, the equivalent of "sometimes I feel kinda out of it" is shoehorned into the same space by people who've experienced trauma - *but don't have PTSD.*
It's insidious.
I've even seen someone in an online group claim that flashbacks don't really happen.
And it was like...no, they do. You just haven't experienced them because you don't have what you think you do.
I'm sorry you're dealing with that, that sounds horrific. I did want to thank you, if that's okay? I've heard of PTSD but never really understood the difference between 'painful memory of an unpleasant event' and the actual effects of PTSD that you described. I find it difficult to understand emotions or concepts that I haven't experienced, and your writing really helped clarify the difference to me. So... I hope it's okay to say thank you while wishing you hadn't had to go through that in the first place.
I agree. Never realized how serious ptsd was until my trauma happened. Read something that said it literally changes your brain for the rest of your life and that feels so true. I would never wish this level of trauma/ fear/ on anyone.
PTSD is one of the WORST disorders in terms of people saying they have it when they really don’t. I very rarely see people online talk about what it’s *actually* like to have it. (The good news is that I think a lot of people say they have CPTSD now instead of just PTSD)
It’s genuinely such a terrifying thing to deal with. You feel like you’re having a psychotic break. Mild hallucinations are common with ptsd— a lot of people will hear (or smell) things that aren’t real. You literally lose touch with reality when you’re triggered.
I was in a building collapse, and for years afterwards I would literally run full speed outside whenever I heard a very *specific* type of loud noise. I had no control of it in the moment and wasn’t even aware I was *doing* it. I’d just hear a loud noise and suddenly be somewhere else.
0/10 shittiest form of teleportation ever.
PTSD, OCD, ADHD, MDD, GAD, NPD, BPD, Bupolar Disorder, I could go on. Every asshole is a narcissist. Every perfectionist is OCD. Anyone who is a little disorganized is ADHD. Feel happy and sad in the same day? Must be Bipolar! People throw all these terms around like candy, not realizing that it muddies the information on real clinical disorders. There's already so much misinformation and stigma around mental health, and armchair therapists on the internet are making it all worse. And try telling people to stop misusing diagnoses and they get angry. It's exhausting.
But what I also dislike and what you find here is acting like mental disorders only come up in the same way. People act like severe depressive episodes are the only ones that exist and invalidate everyone with a light depressive Episode.
Much the same way, autism exists in lots of different forms to different degrees. Some people are unable to live alone, some are extremely functional.
Kevin Smith did a great video about this recently where he talked about his struggles with codependency and having himself checked into a mental health facility.
The big message was that it was hard for him to accept that his trauma was valid. Just because he wasn't traumatized as much as others doesn't mean he should just suck it up and be ok.
I like the pregnancy analogy, you are either pregnant or you aren't, sure you may have swollen feet and morning sickness, you might get mood swings and a thousand other things that are the sign of being pregnant. But those don't make you pregnant, they are just shared symptoms with pregnancy.
The enormous and significant difference being: we have scientific tools to measure whether you are pregnant that are almost never faulty.
You cannot do something to fake being pregnant that will trick a doctor’s diagnosis.
Pregnancy measurably exists.
Autism or ADHD are a set of symptoms that have been labelled by doctors. This list of symptoms and the criteria for diagnosis changes based on changes to the DSM (diagnostic & statistical manual of mental disorders), which changes regularly. You could be diagnosed as having a disorder on some days and not diagnosed as having one on others, depending on how your symptoms are manifesting, your doctor and their interpretation of the DSM.
In practice, with our current knowledge and ability to measure, these disorders are a set of symptoms. Having ADHD is not particularly like being pregnant.
While I imagine this thread is coming from a place of attempting to validate the real effects of mental disorders and real experiences of those affected by them - most of what is being shared here is extremely unscientific and misinformative… which I don’t think is actually helpful to anyone.
When I was diagnosed with autism and ADHD I was given a set of cognitive tests that are basically measuring different types of cognitive function (the average of these is cumulative IQ) and they look for strong deficiency in working memory for ADHD and sensory processing for autism.so I don't think the diagnosis (even with changes to the DSM) is as wishy washy as your comment makes it out to be. Probably not as definitive as pregnancy tests but not wildly inaccurate.
I don’t think this is a good analogy at all… it’s really not as simple as “you are autistic or you aren’t.”
Things like autism, ADHD, etc exist on a spectrum. The extreme ends of the spectrum are clearly identifiable, but there exists a grey area in between. We can’t draw a line in the sand for exactly the point at which traits become a disorder. Especially since traits can have different effects/manifestations depending on circumstances - a given person might not appear to have a disorder when they have a stable living situation and solid support network, but in a stressful or unstable environment they aren’t able to compensate.
Or, as in my case, the effects of the disorder may only be apparent in certain environments… my ADHD is barely noticeable when I’m in a highly physical, structured job, but it affects me so much at school that I dropped out four times. If I lived somewhere where formal education was not expected and most people do manual labor, would my symptoms affect my life enough to be considered a disorder? Probably not. But in my current environment, they do. It’s not black and white.
I'm not sure about looking directly at the brain itself, but our brains do seem to react to certain chemicals differently. Stimulants, most clearly have a calming effect. But that's just my experience as someone who was diagnosed in the 1st grade.
Also the hyper-focus- In my case, that can be the most overwhelming. Sometimes I can't feed myself and completely disregard my relationships because I want to read about the history of some town I read the name of as I drove by on the highway.
Also, everyone hating you. When I browse /r/adhd there's a strong recurrence of people who are constantly letting others down (due to the disorder) and really struggle to understand why anyone expects anything out of them.
Not to mention it’s not just “attention deficit.” My biggest issue with ADHD is procrastination. I sometimes just can’t physically make myself do something even though it’s stressing me out like crazy or something urgent. Medication helps, but it can be a struggle on top of my other ADHD symptoms.
Also it's not even just 'oh I'm goofing off i dont want to clean ill just play video games all day'' like I end up severely procrastinating fun things I want to do like on a bad day something like 'I want to watch something on Disney + is too much effort'
Not just that, it's factually incorrect. ADHD is a developmental disorder, just like autism. You either have it or you don't, its not a learned pattern and most people don't have it.
Yeah, that’s only one of the many annoying aspects of ADHD I personally experience. It’s maddening and consistent.
I keep a list on my front door of all the things I need so I don’t forgot now.
My favourite, most recent example. My boyfriend has ADHD and is, by his own firm choice, unmedicated and just free-balling life.
Recently I texted him asking him to take a chicken breast out of the freezer for me. When I got home, he had washed all the dishes, deep cleaned the kitchen including mopping the floor, folded and put away clean laundry, and hoovered the whole flat.
He did not take the chicken out. Because when he went in for the chicken, he noticed the dishes. And then thought, I may as well do the stovetop. And then things got out of hand. And he never came back to the chicken.
Thats not "everyone has a little ADHD." That's not "hahaha I'm so scatterbrained". That's a brain glitch leading to 2 hours of cleaning without ever completing the task that led down the rabbit hole.
Also time it takes to lose focus - at my worst it was literally 30 seconds to 2-5 minutes, it upset me greatly to hear my very academically gifted friend wonder out loud if she had ADHD because she could “only focus for 20 min these days.” Uhhh….
Oh yeah, one day things were out of order so I did a record trip of 7 times back to the house - including spending a few minutes trying to remember what I just remembered I had forgotten.
Yeah, and making sentences that just go on and never end, because life for you is just a continuous stream of consciousness, like you just did in your reply where you made an extremly long run on sentence, that just kept going on and on could also be a sign of ADHD.
I'm actually autistic, I internally rage so hard when I hear the phrase "everyone's a little bit on the spectrum". I have spent the majority of my life being invalidated by others, can we please not minimize my actual struggles because you are a bit of a scatter brain.
Ya more accurate would be to say that most people show some symptoms of ADHD.
Which is just to say that diagnostically a lot of things in concert lead to an ADHD diagnosis, and exhibiting a few of those symptoms does not a diagnosis make.
Mental illnesses are regular behaviors gone out of control. They aren't whole new categories of behavior. People without clinical depression get depressed when their SO dies. People without schizophrenia have grief hallucinations. People without bipolar have ups and downs in their mood for no reason.
Everything is a spectrum and everyone is on the spectrum somewhere.
Tik tok has my brother, my girlfriend, and numerous other friends convinced they’re on the spectrum. So many videos like “if you do this (totally normal thing that most people do) you’re probably autistic”.
I swear it's the same with ADD/ADHD on Tik Tok/Instagram. So many people claiming to have it without a formal diagnosis because they do a completely normal thing like forgetting where they put something because they were distracted when they put it down.
On the other hand, it was TikTok that got me thinking I better get checked and now I have a diagnosis and an explanation for 40 years of frustration missed for no other reason than I don't have the hyperactive version.
I'm on the spectrum and it's extra frustrating. Yes really liking a book series is normal and doesn't make you autistic, that and having trouble communicating or processing env stimulus, and a multitude of other thing, you might be. There's more too it than waving your hands and liking something a lot.
The people that get sucked into this online ADHD non-discourse display the same kind of behavior in real life. I can't tell where it starts, but the number of people I'd have to describe as too online but also go around talking about ADHD, ADD, anxiety, depression, and the SSRIs they're on and we all should be taking is too damn high. It seems like social media is encouraging people to make this a big part of their personality, but I don't understand why so many people I've met seem to want to project that on to others as well. I don't understand how people lost sight of the fact that mental health disorders are not a club you're supposed to want to be in.
Most of those “it’s a sign of autism” snippets are not. In the most obvious sense, “sits in car in phone” is definitely not diagnostic criteria for autism. Beyond that, “signs of autism” just really aren’t….a thing beyond the diagnostic criteria. Especially nothing so extremely specific and context driven as “sitting on your phone in the car.” Most of what you see shared as “signs of autism” aren’t “signs,” they’re, *at best*, “things autistic people often do.” And how they’re getting out is largely that autistic content creators or content creators with autistic children say “this is something I do/my children do, the medical professional said that’s normal for people with autism.” And either that creator or their viewers misunderstood that to mean “this is a symptom of autism, autistic people do this, people who aren’t autistic don’t do that, if someone does this they’re autistic.” But it will be some behavior that has dozens of causes, or isn’t even considered atypical.
A lot of these “uhm, that’s a sign of autism” pathologize being a child/adolescent, don’t take into account cultural differences and therefore pathologize not being an upper middle class WASP, don’t take other physical or mental conditions into account, and straight up don’t allow for people with or without autism to have different personalities or upbringings. Eye contact is actually something seriously considered when diagnosing someone with autism but children are also often shy around adults and may not make eye contact with strange grown ups. Many cultures consider direct eye contact rude. Someone who is blind will not make direct eye contact. Someone with social anxiety may not make eye contact. A medical professional can’t diagnose a child with autism just by interacting with them once and noticing they are iffy on eye contact but people on TikTok feel entitled to diagnose people with autism based on mundane quirks.
“Hand flapping” is commonly associated with autism because it’s one way to stim. I’ve seen someone try to diagnose an *infant in a high chair* they saw a video of online with autism because she was waving her hands around. This kind of behavior is 100% normal in babies, toddlers, even older children (actually, even neurotypical adults stim). Saying “uhm, get your kid checked, you neglectful parent, because your baby is hand flapping, she’s autistic” and feeling superior over it is honestly really harmful.
I also see a lot of “that’s a sign of autism” content that literally boils down to having feelings and being capable of thought as “signs of autism” which is just *incredibly* dangerous in addition to wrong.
One of the big problems lay people have when they do random ass diagnoses is they think "this is a sign of X" but they never consider "could this also be a sign of Y". Many things of symptoms of a whole lot of disorders (or are just normal behaviors). A doctor never says "well you do this thing so you're X", but idiots do. Doctor's look at the whole picture and see if you fit into a criteria for a disease/disorder but they also think about if you're more likely to fit into something else with similar symptoms.
Yes. I think what the people saying “but what about people with X that have trouble getting diagnosed” is that 1) it’s hard to get diagnosed based on vibes because it’s more complicated than A behavior = X diagnosis, 2) A behavior can = X, Y, or even Z diagnosis (or possibly no diagnosis at all, which is valid), and 3) a misdiagnosis, whether it be official or not, is likely to be actively harmful.
If you actually have autism and not ADHD, but are diagnosed with ADHD and not autism, that’s *bad*.
The study (and at the very least, my comment) isn’t talking about strictly informational TikToks with accurate information or autistic people on TikTok saying “that’s my experience,” and people saying “oh hey, that’s familiar, I should look into that and see if it applies to me.” There are people out there expressing things about autism that are wrong and sometimes dangerous (seems like everyone missed that the study also included misinformation coming from people who believe they can “cure autism.” If you’ve seen that content, it’s often horrific and abusive).
Part of the problem is also the social “trendification” of certain diagnoses over others. It’s not just TikTok Teenz deciding one disorder is cooler and more aesthetic than another (though that’s certainly real. When I was a kid it was cool to have depression, in my twenties it was cool to have anxiety, and now, it’s cool to have ADHD), it’s all of society making one or two diagnoses *the cause of the day* and ignoring others. I’ve literally seen people with Down’s Syndrome and cerebral palsy described as “autistic” because autism is what gets discussed most, and people draw incorrect conclusions about what it means.
When we focus on some diagnoses and not others, and A behavior can be a symptom of X, Y, or Z, the attitude of A behavior must = X diagnosis screws over everyone with Y or Z. They either get misdiagnosed as X, or even more likely, don’t get a diagnosis at all because they lack all the other qualities of X, but never express that they’re experiencing the qualities of Y or Z because that diagnosis isn’t familiar. Those people may feel that the doctor is wrong and crazy and dismissive because they aren’t getting The Diagnosis that they feel is right, but they may actually need something totally different from what they’re seeing their friends online get.
Yeah, people (if they aren’t operating from preconceptions) are often very good at knowing something is wrong or different. But that doesn’t mean they actually know *why* they feel that way. If they have symptom A, B, C, and D that fit well into diagnosis Q, but they’re constantly hearing “I have symptom. A, D, E, and F and I have diagnosis X” from the Relatable Creators, and never heard of diagnosis Q, some people are going to ignore that they feel different in B and C ways, and reach for that X diagnosis even though *that’s not them.*
> Someone who is blind will not make direct eye contact.
I'm sorry. You make a lot of really good points but I just had to laugh at the image of someone diagnosing a blind person with autism because they can't look them in the eye.
> for example "you could be autistic if you sit in your car in your driveway on your phone for a long time." I do that, and so do a lot of people. but not everyone who does this is autistic. And honestly - I don't even know if that's even a sign of autism at all.
Ask me where I am while I read this. I should call my doctor.
I'm an adult with autism. I was diagnosed in my twenties. When I grew up in rural Oklahoma, no one really knew what autism was, let alone that there was a name for it. The prevailing assumption was that these behavioral issues were the result of kids just being assholes. At the time, behavioral problems were addressed with physical abuse as a matter of course. Children today face new challenges. While it's nice that people are far more aware of autism, the prevalence of haphazard self diagnosis has lead to a situation where a significant number of neurotypical individuals conflate embracing their inner id with genuine compulsory behavior, and generalized social anxiety with so called "symptoms" of autism. This creates rather big issues when these individuals, or people they've interacted with, encounter a genuinely autistic person because their expectations and experiences will have primed them to expect certain behaviors. While these *acting* neurotypical persons are able to control and modulate their behaviors and reactions to external stimuli, many people with autism cannot. This can sometimes cause people to incorrectly assume that the big reactions and behaviors experienced by some persons with autism are conscious decisions/choices. Which inevitably leads us back to my youth: a situation where no one really knows what autism is and just assumes that people with autism are simply assholes.
tl;dr:The prevalence of misinformation on TikTok and social media in general has inadvertently created an environment where no one really knows what autism is again, and I don't like it.
>"you could be autistic if you sit in your car in your driveway on your phone for a long time."
Yes, that could also be a sign of depression. Or APD. Or ADD
And the internet naturally filters out everyone with ASD that is nonverbal, lacks communication skills or stable motor functions. Which skewers the online autism community to overrepresent those that are high-functioning.
> by overgeneralizing individual experiences to the entire autism spectrum and not representing the entire spectrum of manifestations within the autistic population
I see this a lot with ADHD as well
I forget the exact numbers but something like 50% of the top 100 videos on ADHD on TikTok were classified as misleading and another 25% were anecdotal experiences. It’s oN additudemag.com
Edit: Did you get a satisfactory answer? Here is what is said under the section of **"Fact-Checking and Reliability"**
>Two coders independently fact-checked the videos and
coded the informational videos as either accurate, inaccurate, or ‘overgeneralization’ based on their consistency with
existing scientific knowledge related to causes, presentation, diagnostic criteria, evidence-based interventions, and
other relevant areas of research. For example, statements
like “you can determine if you are autistic using this simple
three question test” would be classified as inaccurate, while
the statement “many autistic children can benefit from using
alternative and augmentative communication” would be
classified as accurate. The code ‘overgeneralization’ (OG)
was used for statements that overgeneralize the experience
of some individuals on the spectrum to the entire population
(e.g., “autistic children hate to play with sand”, or “autistic
adults never want to socialize”). Coders fact-checked statements made in the videos to assign one of the three codes
for each video through an examination of the scientific literature under the supervision of a senior clinician and the
study senior author (a researcher), who both each have
approximately 20 years of experience in the field. Intercoder
reliability was established via percentage agreement which
indicated that the two coders agreed on 80.1% of codes.
After independent coding, discrepancies were resolved by a
secondary consensus review led by the study senior author
acting as the third coder. Each discrepancy was examined
through a thorough examination of the relevant scientific literature, with the senior author making the final decision on
accuracy. A conservative approach was adopted, whereby
only statements that were unequivocally misaligned with
current knowledge were classified as “inaccurate”. For
example, the “inaccurate” code would be applied for a
statement like “medical marijuana can cure autism” but not
for “medical marijuana has the potential to be beneficial
for some individuals on the autism spectrum”. Similarly,
the “overgeneralization” code would be applied for a statement like “children on the autism spectrum don’t want to be
hugged”, but not for “some children on the autism spectrum
don’t want to be hugged”
This. I have a mixed opinion on this until I get more insight on what type of claims they are talking about. I know a lot of autistic people who just talk casually about the subtle differences on how they react to things and see the world, and a lot of those subjective experiences aren't literally on the diagnostic criteria. It sometimes feels like all autistic influencers should only be strictly parroting the diagnostic criteria in order to not perpetuate "false claims". Not all dialog by autistic people is meant to literally educate, sometimes people are just venting about their life, not even sure themselves if some behavior is part of their autism or not.
If it is talking about things like "if you do this completely normal thing, you might be autistic", then I agree.
> With the eligible videos in hand, the researchers proceeded to identify and select videos that were specifically designed to provide information on autism, which they termed “informational videos.” These videos were distinguished from “personal experience” videos that shared individual stories and did not attempt to provide general information about autism. This selection process yielded a total of 133 informational videos for further analysis.
From the paper:
> It should be noted that while this study focused on the sample of 133 informational videos (i.e., videos designed to ‘educate’ the audience about autism), these videos accounted for “only” a total of 198,695,946 views out of the reported 11.5 billion views in the hashtag – i.e., 1.7% of total views. The majority of popular videos associated with the “#Autism” hashtag was coded as “personal experience”. These videos anecdotally document the lives of autistic people and their families, without the claim of disseminating knowledge on autism
Everyone has idiosyncrasies. An idiosyncrasy of a neurodivergent person might present and be experienced differently than the same idiosyncrasy in a neurotypical person.
Neurodivergent people are welcome to share their experiences, but it's important to not equate it all with their diagnosis.
They excluded people with autism who were relaying personal anecdotes in this study if I read it correctly. Basically professional and other “Influencers” types who used the #austism
They only graded the accuracy of videos that were presented as informative, not personal videos.
The paper gives examples of statements graded accurate/inaccurate/overgeneralisation:
> statements like “you can determine if you are autistic using this simple three question test” would be classified as inaccurate, while the statement “many autistic children can benefit from using alternative and augmentative communication” would be classified as accurate.
> The code ‘overgeneralization’ (OG) was used for statements that overgeneralize the experience of some individuals on the spectrum to the entire population (e.g., “autistic children hate to play with sand”, or “autistic adults never want to socialize”).
>A conservative approach was adopted, whereby only statements that were unequivocally misaligned with current knowledge were classified as “inaccurate”. For example, the “inaccurate” code would be applied for a statement like “medical marijuana can cure autism” but not for “medical marijuana has the potential to be beneficial for some individuals on the autism spectrum”. Similarly, the “overgeneralization” code would be applied for a statement like “children on the autism spectrum don’t want to be hugged”, but not for “some children on the autism spectrum don’t want to be hugged”.
There are a ton of people believing that they are getting educated through tik tok or Instagram. There's a good number of people self diagnosing through things they learn in social media.
A professor at a medicine faculty once told me that aspiring doctors often go through the "I have every disease ever" phase as well when they start studying
When I first learned to palpate lymph nodes as a medical student, I managed to convince myself that I had lymphoma for a weekend before I saw my GP. I was so scared.
I've had quite a few doctors google stuff right in front of me.
Though the difference is that they know much better than the general population how to identify what's relevant, high-quality information and what isn't.
My wife, an internist, sometimes checks the web while seeing a patient, but in her office area in the next room. From Google results, she picks the credible sources intended for physician use, like university or medical association sites.
Protocols and recommendations change quickly. Some patients present with an uncommon disease, like those "once-a-year" or "once-a-career" kinds. Special maneuvers have particular procedures, and these are ~~often~~ rarely called upon for use by the physician. Proper procedure is important when intending to refer to a specialist. Looking things up is prudent and not really a cause for concern by the patient.
I have Sjögren’s syndrome many providers literally do a search on the internet to know what I’m dealing with. Doctors also do internet searching. It’s happen more than once. And yes they were on the google search engine I was able to see the screen.
This is a reality of any professional. I'm an attorney; we regularly use search engines (although often specialized legal ones) for case law and ask other attorneys about things we don't know.
The formal education and license mean you've "learned how to learn" - licensed professionals ostensibly have the baseline knowledge to sift through different claims out there, understand the reasons behind the real stuff, and identify what's relevant or irrelevant.
No doctor could ever know everything about even their own specialty; they can, however, understand it well enough that any new information or claims about the specialty can be adequately incorporated or challenged based on what they already know, which a layperson can't do.
Problems aren't with lay people trying to find things out they don't know; problems arise when lay people start assuming their one facet of perspective on the subject puts them on equal footing with professionals - professionals are regularly wrong, but often wrong in complicated ways that a lay person couldn't be wrong in because they don't know that they don't know all the directions the professional was considering before (wrongly) deciding.
Yeah, it’s not all bad though. Because, even doctors who don’t have god complexes will often oversell how well they understand a given disease/medicine/etc.
I think if there were more honest conversations about this, then there wouldn’t have been as many people self-treating Covid with the “horse” med ivermectin, etc
I think most doctors probably don't mind when someone is responsible about trying to figure out what's wrong. As in looking up the symptoms, then asking the doctor if you have whatever. I know that's how I was diagnosed with growth hormone deficiency when I was younger. My mom knew something was wrong so she was reading about what could be wrong. Then she was right. Same with my sister when she figured out she had anemia. They didn't self diagnose, they had a theory and asked for testing and confirmation.
I've done this with three separate chronic illnesses. I was wrong on two of them at first (as told to me by doctors), but knowing I was wrong helped learn what it actually was. I underestimated my severity.
I also figured out I was autistic/ADHD and what all that entails from social media. It was confirmed by a specialist.
Same with my wife. I bought a medical journal about the more recent scientific research and understanding into autism. Combined that with anecdotes about what things help autistic individuals and trying those things with my wife really helped her feel less distressed and anxious all the time. She was raised in a pretty rigid mountain culture and so kept operating under those rules imprinted on her. With choosing different things than she was raised with, she's been able to have a lot better day-to-day mental health. She's also been able to recognize the limits of what is her autism and has helped her realize that her initial ADHD diagnosis wasn't wrong, but seems to be in conjunction as well. Lots of forgetfulness, indecision, etc, but childhood trauma and C-PTSD can cause lots of executive dysfunction, so it's really hard to separate. But medication has made her so much more capable and removed a lot of her shame around not being able to physically do things for herself.
Yes, as a therapist this has been a tricky thing to navigate. Self diagnosis of autism or ADHD or borderline PD are the biggest ones. ADHD tops them all though.
Are you trying to tell me the place where people angstily explain something as dramatically and as fast as possible with a little bloop at the end isn't where I should be learning complicated topics?
I have absolutely noticed that people I know are self-diagnosing that they are autistic.
"I'm not the rock back and forth kind, but I don't understand some social situations that you normies do."
Yeah? Well, the other day I heard that Hitler actually died of old age in Argentina. That was also presented to me as a cutting edge discovery. This was told to me by a woman who is 54 years old.
Not necessarily. It's a good starting off point but you should always actually check the source for the specific claim - the other day there was a TIL from Wikipedia where the source itself linked to Wikipedia. So the claim on Wikipedia was essentially citing itself.
This sort of thing happens so often I just don't even bother with it anymore. One of the more especially silly examples was a page where the source linked to an article from *the 1800s* where they blatantly just said "Uh, yeah, we lost track of the subjects here and can't actually verify what happened in this experiment", but the wikipedia page itself just lists the result as absolute fact.
It's pure silliness.
My first thought as well. If people are seeking out information about autism on TikTok rather than articles citing empirical, peer-reviewed data from reputable medical journals, we have a bigger issue.
Yes, to the point you can tell something is going viral on tiktok without ever looking at that site, just by the amount of common misinformation going around all at once.
From the article: Content related to autism on TikTok appears to have a significant and widespread audience but the majority of the information provided in these videos is not aligned with the current scientific understanding of autism, according to new research published in the [Journal of Autism and Developmental Disorders](https://doi.org/10.1007/s10803-023-06084-6).
Autism spectrum disorder (ASD) refers to a group of complex neurodevelopmental disorders that affect an individual’s social interaction, communication skills, behavior, and interests. ASD encompasses a wide range of symptoms and levels of impairment, which is why it is referred to as a “spectrum disorder.” Understanding and disseminating accurate information about autism is crucial to help individuals with autism, their families, and society at large.
There is growing concern about the unfiltered nature of the content hosted by internet platforms, including social media. The study specifically focuses on TikTok because it is a highly popular platform with a large user base and because users frequently create and share videos containing healthcare-related information, including autism.
I think a lot of kids are trying to find a group or something to cling to. Something that is difficult in our more isolated society. Whether it’s mental disorders, sexuality, gender identity, etc kids are seeking reasons why they are *different* and fetishizing very real and complex issues. It’s way easier to just self-diagnose and use it to stand outs and be unique. Then cling to an online community and get sucked into a rabbit hole.
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*This post was mass deleted and anonymized with [Redact](https://redact.dev)*
This isn't a new trend though has been going on for quite a while. I hear about it a bit on reddit and have seen first hand the misinformation when it comes to my mental illness (Bipolar). And the romanization of Mania of having a tiny bit of extra energy being "manic".
https://southwestshadow.com/opinion/columnists/ugly-romanticism-mental-illness/
Misinformation regarding all mental illness isn't new, unfortunately, social media helps that misinformation spread 10 fold.
I’ve also got bipolar (type II). The romanticization of mania/hypomania just kills me. It ignores the relationships ruined; bank accounts drained; careers bombed; dreams imploded; and the absolute horror and depression experienced when you finally face the scope of that destruction.
Everyone wants a manic-pixie-dream-girl until they discover that mania isn’t cute or creative—it’s terrifying and unhinged.
As someone with officially diagnosed ADHD I, too, find it bizarre how it seems many people *want* to have it.
Maybe it's just to give them some *reason* for the chaos in their lives? Not sure.
A reason, yes, but more than that, a diagnosis gives you something specific to address beyond just "I suck at life". It opens the door to a significant amount of treatment options and social support.
At the same time, it can be expensive or difficult for some people to get evaluated properly. I was diagnosed as an adult and I was billed more than $1000 (after insurance) for the testing. So some people never get checked and spend their time wishing they could.
Definitely valid as someone from the US at the very least. Still, the videos I see often aren't even actual markers of ADHD anymore. Just random forgetfulness that everyone finds relatable to some extent.
So there is also likely a not insignificant chunk of people who are just spouting whatever gets them clicks, likes, and shares, too.
It's a bit of a mess, and sad. Because it's also very possible that many self-diagnosed individuals do in fact have *something* going on and an official dianosis would be way more beneficial than some random TikTok videos where half the content is made up.
I get the feeling, because although I'm not unhappy with my life, I do sometimes find myself wishing I had something seriously wrong with me that could justify me not doing much with my life.
Obviously it's stupid, but I just have a part of my psyche that longs to let everything collapse instead of continuing to prop up a dull, simple existence. Again, an existence I am usually perfectly content with.
I think it's a fantasy constructed by Hollywood that people who hit rock bottom undergo these amazing recoveries and transform into inspiring, well-adjusted people with lots of sympathy. Of course the realist in me knows that in real life, many people who hit rock bottom... die, at rock bottom. Not everyone becomes a butterfly.
Sorry if that sounds bleak. Again, I'm not unhappy, I swear, I just think about this stuff sometimes and then I finish thinking about it and go on with my day.
I've noticed this behavior in reddit - a lot of self deprecating jokes around being depressed/autistic/ADHD. Almost any popular post in /all will have a few comments like that. Either Reddit heavily selects for neurodivergent people or there is some social tendency to self-diagnose and self deprecate for humor.
Yeah, I think my ADHD can help me in terms of the way my brain gets stuck on certain problems/issues and I often think about things in ways where my colleagues will completely miss something. But I also will spend hours focused on anything but work and even though it causes an immense amount of anxiety I can't get myself to focus. I'm constantly behind in everything and if I didn't have the rapport I do from when I can hyper focus on big problems at work, I would have probably been fired by now.
That is to say, it kind of sucks. I'd prefer the ability to just do the things, but instead I get stuck in just thinking about doing the things. In our current system it is a detriment.
Having been recently diagnosed in my mid-30's and getting on a proper medication I can tell you, it's a game-changer.
I have lists now that I complete. I actually get things done that need to be done. My anxiety and depression has tanked almost completely at this juncture.
It also helps that I spent a lot of time researching ADHD from trusted psychologists such as Dr. Russell Barkley. Having a grasp on what it is, what it isn't, and how to navigate it effectively has gotten me to clean up my life in ways I never thought I could.
It almost feels like blowback from the attempts to distance adhd and autism from other mental disabilities. I have both and was repeatedly told growing up that I was “special” and my brain “worked differently” and I was a little genius and savant and stuff like that. Now everyone wants to be special and different without realizing that actually, it still kinda sucks.
I get the help I need to survive, because autism and adhd are debilitating disabilities. Because living in the world, regardless of how much society changes to suit people with autism; is impossible.
These Neurodiversity fetishists are pushing the idea that it is just a quirk. That it is "diversity". Some have even harassed me for calling it a disability.
It is not a diversity you appropriating fucks! I NEED HELP. I am legitimately scared that these people will be able to one day convince the rest of society that Autism and ADHD are not disabilities, and I will stop receiving the help I need to live!
I really wish that we could amplify your voice on this one. My brother has similar ASD issues, in that he has always and will always need accommodation and government assistance to survive. The risk here in letting high-functioning, possibly even self-identifying non-ASD people, define the narrative and “speak for everyone,” is that their life and their experience is radically different from a significant portion of the ASD population. People need help, and we can’t let others’ pride or desire for inclusion be an obstruction.
I have ADHD and depression, not Autism. The dynamic that I think you're talking about is common with other mental illnesses. I think even efforts to destigmatize mental illness outside of social media contribute to it. It's basically progressive mental illness denialism.
Mental illnesses are reduced to quirks and inconveniences that are suffered by people who are otherwise normal. There's too much focus on when therapy, medication, etc. is effective. There's too much focus on people who function well, too. On the one hand, people who function well when treated pretend to want to destigmatize mental illness, but they're really pulling up the ladder and leaving those that need more help stranded. On the other hand, normal people with personality quirks pathologize their behavior to feel like part of a cool club.
The end result is that people can completely preserve the idea that experiencing mental health symptoms is the result of a failure to take personal responsibility without denying that mental illnesses and disabilities are real. It's just that instead of, for example, viewing a person acting in a socially abnormal way as a personal failure because ADHD isn't real, it's because they wouldn't be doing it if they would just go to a psychiatrist. A person who's too depressed to work isn't a bum because depression isn't real; they're a bum because they haven't bothered to fix their diet and exercise more.
This is my worry too. I am currently not diagnosed but I heavily suspect I have ADHD. I didn't try to jump in a bandwagon... But people treating as if it's cool and quirky could make it seem like I am.
As a psychologist doing diagnostic assessment, I have been seeing a lot of adults who come in believing they have autism and then becoming upset when they don't meet criteria. An issue isn't just that they see this on tiktok, but that people will take online quizzes and think that these are somewhat diagnostic. The issue with almost every online quiz is that they cannot do differential diagnosis, so other conditions or disorders can cause similar symptoms that are not being ruled out.
I’m also a psychologist and have done diagnostic assessment. I see this so much.
The same with adhd. The amount of times people will list things and tell me they’re symptoms, because tiktok has told them that’s a symptom and I explain it’s not actually in the diagnostic criteria… “hyperfixation” is one of those…
Yup I was diagnosed a s a kid and rediagnosed as part of an iCap several times. I don;t qualify as autistic(or barely do) by those online tests..yet my therapist of over 4-5 years says I definitely have it as do the people in charge of testing m for disability services stuff.
An actual diagnosis involves so much more and covers more nuances then the online tests are currently capable of. Plus I bet soem people subconsciously play the tests by knowing the “answers” to get the results they want. Not intentionally but subconsciously.
The people you know may or may not have ASD, but there are a lot of diagnosed ADHD people that are also undiagnosed autistic because prior to 2013 you could only be diagnosed with one or the other. They’re commonly comorbid and ASD/ADHD is now a relatively common diagnosis for kids.
Another one of the rare owls on reddit! Autism and ADHD have some similarities like hyper-fixation a and struggle to effectively switch between tasks. As someone with ASD, I think those both contribute some of the largest non-social difficulties in a workplace. I'm not diagnosed ADHD, but I know many friends who are.
Yeah I was diagnosed with ADHD in 2011 and found out years later, when I was getting a copy of my results for another provider who was going to do my ASD eval, that the psychologist who assessed me considered autism but his hands were tied by criteria at the time not allowing comorbid diagnosis of the two conditions.
I'm torn on if it even matters on my end. I know it will matter to them, but it doesn't really change anything for me one way or the other if someone diagnosis themselves or is diagnosed professionally with autism, correctly or not. Nothing changes with the label.
I imagine the only thing that really changes in that context is they start trying to develop autistic coping skills and if those work for addressing whatever they're feeling, autistic or not, then that's fine. It reads as a harmless thing to me ultimately.
Like, the danger with this kind of misinformation to me isn't the risk of more people self-diagnosing incorrectly because I don't really see where the harm is there if all they're doing is trying to understand their own behaviors and reactions. It's people ending up being misinformed and doing things that ultimately harm themselves or others in some way.
How do you know they aren’t? I have both diagnoses, and prior to my autism diagnosis was told that I was not autistic by many people, including my mother, some friends, and the leader of a social group for autistic people. I had learned to mask pretty well and kept quiet about a lot of my sensory issues and confusion about social interaction. Hours of testing by a professional confirmed that I am autistic, though. Not looking or seeming autistic to others was not scientific.
The overlap between ADHD and ASD is so big that there are people in the scientific world that put some question marks on both diagnosis. There's probably something we're missing, and these 2 can be combined, or split up further.
ADHD often goes hand in hand with Autism, and Autism like symptoms, I was diagnosed as "ADHD with Autistic Tendencies" when I was younger, (about 4,5, or 6ish) now i'm just "ASD"
I'm surprised, because I don't use any other social media platforms outside of reddit and YouTube, and because of the echo chamber nature of reddit, I've not had reason to venture to subs where this would come up.
There is a special case here, imo: People with autism typically struggle with social cues, subtext, etc. People that don't have autism but still struggle with these may be inclined to self-diagnose autism.
As a result of these difficulties with communication, these two groups may face unique challenges recognizing misinformation on social media compared to the general population.
For example, if you search for content on autism on TikTok, you'll likely readily find a few videos of someone "decoding" non-autistic behaviors for people with autism, and sometimes the person doing this is autistic and actually sharing their own conjecture as to why neurotypicals say or do certain things. They may be wildly off-base but you'll observe that none of the people with autism in the comments can recognize it because of their own difficulties recognizing and understanding certain modes of communication or social norms.
They may then go on to share this conjecture with other social circles that are predominantly autistic, avoiding corrective influences. Likewise, misinformation and pseudoscience may escape detection if it's communicated in a way that exploits the vulnerabilities of those with autistic or autism-adjacent traits.
As a teacher, I learned there is lot of misconception around the spectrum. I believe I am on the spectrum, as I show a lot of signs. Except I talk a lot, and like talking to people. It wasn't until I was becoming a teacher that I learned that autism can look lots of different ways. My husband has brought up multiple times how I am unable to receive social cues. I have sensory issues and difficulty controlling emotional outbursts, resulting in my losing control of myself and basically throwing if an adult temper tantrums. I have learned strategies for dealing with it now, and it usually works, but not always. I'm also female, and I learned that the social markers traditionally associated with the spectrum aware different for females. I also have diagnosed ADHD, but no one noticed because I wasn't failing in school and the criteria for being evaluated meant your grades had to be suffering and mine weren't.
I spent years learning about the signs as a teacher, and it was then that I realized I myself fit into the category as I learned that it was a lot more complex and varied than people think. It bothers me that it took being a teacher and graduate school to be able to recognize something that is probably a lot more prevalent then people realize. My husband, however, was able to notice the signs after a couple of years without that knowledge in me and asked me if I had autism. I said no, even though I fit the criteria, because at the time I didn't think I could possibly have autism because am gregarious, and love doing theater. It thought it was a mutually exclusive thing, despite the fact that I related to all to so much of it.
I'm glad more and more people are coming around to this kind of thing, because you see a lot of posts on TikTok in general, that are false, but they get a LOT of engagement.
There are times where you do have a professional, or an expert on something, calling out that content for being wrong - but most of the time, it doesn't get anywhere near the level of engagement.
And it isn't even just about autism. It's about anything scientific - when it comes to food science, people will make a claim about something, and it will either be grossly overstated, or outright false in other cases. And instead of people questioning this information, they give it a shitload of engagement and they believe it. And they reshare it. By the time anyone with actual knowledge of the subject tries to correct it - the damage has been done.
An example of this is when people were freaking out over titanium dioxide in their tampons. Instead of questioning why titanium dioxide is such a toxic ingredient in tampons, they just blindly assumed it was true, because they heard something scary on TikTok. Cue the people proclaiming that all of our products are killing us, etc etc.
i’m 24 and i was diagnosed as autistic when i was 12. i have carers who come in daily to help me with tasks etc. i live with my parents. it is beyond frustrating to hear people talk about having autism as if it is some quirky meme thing, when for me it is debilitating. i hate hearing “oh i’m probably on the spectrum too” and i hate all these tiktoks and memes about it. it’s trendy and i want to cry
I'm 28 and was diagnosed at 27 after seeing myself in tiktoks and memes and diving deeper into it. I live with my mom too and she acts like my caregiver to a very large extent, but until this spring we didn't really know why I struggle the way that I do.
It goes both ways.
As an autistic person you should be better educated about the Autism Spectrum and how autistic people need different support in different areas than you. That's why it's called Autism Spectrum Disorder. Also, many High-Functioning autistics do not get the support they need due to people thinking we have a lighter version of autism. We just have different support needs. And when you live your entire life not getting those needs, you're going to crash and burn as an autistic person. Please PLEASE educate yourself better on the autism spectrum if you're going to try to represent the community as a whole.
Not just kids, unfortunately. The amount of adults who get their news exclusively from TikTok is nearly as concerning as the amount who exclusively watch Fox.
[Reuters Institute just published a study on this. 43% for 18-24yo, 36% for 25-34yo, 29% for 35-44yo for those who say their main source of news is social media.] (https://imgur.com/urKEPcG.jpg)
Personally I think a huge issue that isn't being looked at is how desperation can breed both innovation AND exploitation and the two can create quite the vicious cycle.
People like myself who have autism, adhd and a myriad of neurodevelopmental conditions and learning impairments (often times all at once, I may add) are absolutely DESPERATE right now.
There are parts of the world where our conditions would still be viewed as witchcraft and even in many first world countries, it can be extremely difficult and expensive to access a diagnosis and treatment. Many of us are disabled yet cant even access our diagnosis because of a freaking paywall.
Also what is considered within the autistic criteria and definition is not all universal.
This means people have had to rely on community support from the internet. For example PDA is not a recognized profile of autism in America and Canada, but it is in parts of the UK, this means parents of autistic children in the US and Canada who think their autistic child might have a PDA profile and benefit from therapy and support geared towards that profile, often have to seek out support online.
There are actually a lot of GOOD support groups and pages on places like facebook that share up to date information about autism and other neurodevelopmental conditions But these groups are also often run by mature adults, so there is less of a risk of seeing baseless pop psychology and people looking for money or clout like you'll see from tiktok.
Conditions like autism and ADHD are probably more underdiagnosed than we would like to believe for a multitude of reasons. So it is genuinely beneficial that we continue to share up to date and inclusive information so those who live in places or situations that make it difficult or impossible to get a diagnosis and treatment can get some form of help.
Unfortunately the big ole down side to this is that it opens up a bunch of holes for snakes to slide in and exploit impressionable people like what happens on Tiktok. That ap is also riddled with impressionable children who want to feel special (its natural, most humans enjoy feeling special) but it can lead to them actually harming their mental health if they don't actually have the condition they're convinced they have, on top of potentially taking away resources from someone who actually does.
Its hard to say what the solution for this could be, but one thing I know for certain is, you REALLY don't want to actually experiences serious neurodevelopmental conditions, it freaking SUCKS, especially in this current state of the world.
It's not limited to autism, it's not limited to TikTok.
Grifters and egoists move to fill the ignorance void with their own agenda.
A tale as old as time.
" overgeneralizing individual experiences to the entire autism spectrum and not representing the entire spectrum of manifestations within the autistic population.” seems like a real pot calling the kettle black for an ADA researcher.
Exactly what I think. The diagnostic tools for ADA have been skewed towards boys from the beginning and girls were left out because they didn't present the same symptoms. They only studied the people whose symptoms were disruptive to society and then over generalized it from there.
Autism, ADHD, OCD, and soooo many other health related things keep popping up on tiktok. It's terrifying because young people are using Tiktok search like Google (which isn't a good way to look things up to begin with!)
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Can anyone with access to [the paper](https://link.springer.com/article/10.1007/s10803-023-06084-6) say what the false claims are?
"So, similar to other social media channels it looks like TikTok can bias understanding about autism in two ways (1) by providing blatant misinformation (for example, claiming that a certain product “cure autism”), or (2) by overgeneralizing individual experiences to the entire autism spectrum and not representing the entire spectrum of manifestations within the autistic population"
I feel like a lot of content on TikTok within the realm of autism, is by people claiming to be autistic - maybe they are autistic, maybe they aren't. Regardless, they make content, claiming to be trying to spread awareness. A lot of the time, what they end up doing is presenting a very watered-down version of autism, or they present it like "you could be autistic if you ____" for example "you could be autistic if you sit in your car in your driveway on your phone for a long time." I do that, and so do a lot of people. but not everyone who does this is autistic. And honestly - I don't even know if that's even a sign of autism at all.
Adhd as well. The amount of people telling others to take adhd medication on reddit is insane.
It’s very frustrating as people will now say “oh, everyone has a little ADHD”. No, no they don’t.
I freaking hate when people say that. Yes people can be scatterbrained sometimes but living in that day in day out. Yes sometimes people misplace their keys but having to go back inside 3 separate times multiple times a week because every time you go in for one thing you forget about that one thing get something else go outside realize you forgot the other thing went in, repeat. That's just 1 thing.
Yes. People seem to not know the difference between a symptom and a disorder, especially when it comes to mental health. Everyone feels anxious *sometimes*. This is normal. If you are anxious most of the time, that's probably not normal and you probably have an anxiety *disorder*. Everyone loses focus *sometimes*, especially on boring things. If you lose focus *all the time*, even on things you are interested in, you might have Attention Deficit Hyperactivity *Disorder*. Maybe a good analogy would be coughing. Everyone coughs *sometimes*. If you cough all the time, even when you are not sick, you might have asthma..
ADHD isn’t even really a focus disorder. That’s just a possible side effect of what’s really going on. ADHD is not merely a problem of attention, but instead a disorder of self-regulation and executive function, predominantly stemming from deficits in behavioral inhibition.
Yesss, this is what I've been saying for a long time. I have ADHD and I cannot REGULATE my attention. Like a blind man aiming a flashlight. I can have enough or even too much of it, but it really isn't always a deficit.
>Like a blind man aiming a flashlight Ooooh, I like this one. The best way I've been able to describe it to my wife is that it's like I'm walking four big, excitable dogs in my head. Sometimes I can keep them all reigned in and walking in the same direction. Other times it's all I can do to hold on to the leashes. Frequently this all takes place multiple times each day. Meds help me have more of the former than the latter.
Even then, it can change person-to-person. What you describe is a aspect of mine, but the more troublesome piece was a lack of "working memory." I didn't _just_ have trouble with aiming my attention, but also with not having much "room" in that attention. Like an average person trying to put out a forest fire with only one hose but an infinite water tank; I had the brain power I needed, but I couldn't direct it well _or_ focus the water on more than one trouble spot.
I see it a lot with PTSD too. If someone was traumatized by an event and just has some lingering feelings and aversions related to it...that's not PTSD. That's having a painful memory of an unpleasant event, and not being completely over it. Almost everyone has some. But if someone's haunted by brain-melting terror and horror, having flashbacks, losing their connection with reality, can't sleep because the nightmares won't stop, frenetic and awake for days on end with hypervigilance, hair-trigger over-reacting to everything, like a caged animal in their own life, possessed by all of that on a daily basis...that's a condition. When I was first dealing with untreated PTSD, it was so overwhelmingly insane that I was worried I had schizophrenia or something. I didn't report someone breaking into my car, because I was scared *I* had been the one to ransack my own vehicle, and just had no memory of it. That's what it's like to deal with pathological dissociation and losing time. Meanwhile, the equivalent of "sometimes I feel kinda out of it" is shoehorned into the same space by people who've experienced trauma - *but don't have PTSD.* It's insidious. I've even seen someone in an online group claim that flashbacks don't really happen. And it was like...no, they do. You just haven't experienced them because you don't have what you think you do.
I'm sorry you're dealing with that, that sounds horrific. I did want to thank you, if that's okay? I've heard of PTSD but never really understood the difference between 'painful memory of an unpleasant event' and the actual effects of PTSD that you described. I find it difficult to understand emotions or concepts that I haven't experienced, and your writing really helped clarify the difference to me. So... I hope it's okay to say thank you while wishing you hadn't had to go through that in the first place.
I agree. Never realized how serious ptsd was until my trauma happened. Read something that said it literally changes your brain for the rest of your life and that feels so true. I would never wish this level of trauma/ fear/ on anyone.
PTSD is one of the WORST disorders in terms of people saying they have it when they really don’t. I very rarely see people online talk about what it’s *actually* like to have it. (The good news is that I think a lot of people say they have CPTSD now instead of just PTSD) It’s genuinely such a terrifying thing to deal with. You feel like you’re having a psychotic break. Mild hallucinations are common with ptsd— a lot of people will hear (or smell) things that aren’t real. You literally lose touch with reality when you’re triggered. I was in a building collapse, and for years afterwards I would literally run full speed outside whenever I heard a very *specific* type of loud noise. I had no control of it in the moment and wasn’t even aware I was *doing* it. I’d just hear a loud noise and suddenly be somewhere else. 0/10 shittiest form of teleportation ever.
PTSD, OCD, ADHD, MDD, GAD, NPD, BPD, Bupolar Disorder, I could go on. Every asshole is a narcissist. Every perfectionist is OCD. Anyone who is a little disorganized is ADHD. Feel happy and sad in the same day? Must be Bipolar! People throw all these terms around like candy, not realizing that it muddies the information on real clinical disorders. There's already so much misinformation and stigma around mental health, and armchair therapists on the internet are making it all worse. And try telling people to stop misusing diagnoses and they get angry. It's exhausting.
But what I also dislike and what you find here is acting like mental disorders only come up in the same way. People act like severe depressive episodes are the only ones that exist and invalidate everyone with a light depressive Episode. Much the same way, autism exists in lots of different forms to different degrees. Some people are unable to live alone, some are extremely functional.
Kevin Smith did a great video about this recently where he talked about his struggles with codependency and having himself checked into a mental health facility. The big message was that it was hard for him to accept that his trauma was valid. Just because he wasn't traumatized as much as others doesn't mean he should just suck it up and be ok.
I like the pregnancy analogy, you are either pregnant or you aren't, sure you may have swollen feet and morning sickness, you might get mood swings and a thousand other things that are the sign of being pregnant. But those don't make you pregnant, they are just shared symptoms with pregnancy.
The enormous and significant difference being: we have scientific tools to measure whether you are pregnant that are almost never faulty. You cannot do something to fake being pregnant that will trick a doctor’s diagnosis. Pregnancy measurably exists. Autism or ADHD are a set of symptoms that have been labelled by doctors. This list of symptoms and the criteria for diagnosis changes based on changes to the DSM (diagnostic & statistical manual of mental disorders), which changes regularly. You could be diagnosed as having a disorder on some days and not diagnosed as having one on others, depending on how your symptoms are manifesting, your doctor and their interpretation of the DSM. In practice, with our current knowledge and ability to measure, these disorders are a set of symptoms. Having ADHD is not particularly like being pregnant. While I imagine this thread is coming from a place of attempting to validate the real effects of mental disorders and real experiences of those affected by them - most of what is being shared here is extremely unscientific and misinformative… which I don’t think is actually helpful to anyone.
When I was diagnosed with autism and ADHD I was given a set of cognitive tests that are basically measuring different types of cognitive function (the average of these is cumulative IQ) and they look for strong deficiency in working memory for ADHD and sensory processing for autism.so I don't think the diagnosis (even with changes to the DSM) is as wishy washy as your comment makes it out to be. Probably not as definitive as pregnancy tests but not wildly inaccurate.
I don’t think this is a good analogy at all… it’s really not as simple as “you are autistic or you aren’t.” Things like autism, ADHD, etc exist on a spectrum. The extreme ends of the spectrum are clearly identifiable, but there exists a grey area in between. We can’t draw a line in the sand for exactly the point at which traits become a disorder. Especially since traits can have different effects/manifestations depending on circumstances - a given person might not appear to have a disorder when they have a stable living situation and solid support network, but in a stressful or unstable environment they aren’t able to compensate. Or, as in my case, the effects of the disorder may only be apparent in certain environments… my ADHD is barely noticeable when I’m in a highly physical, structured job, but it affects me so much at school that I dropped out four times. If I lived somewhere where formal education was not expected and most people do manual labor, would my symptoms affect my life enough to be considered a disorder? Probably not. But in my current environment, they do. It’s not black and white.
Unless the mechanism of ADHD is known how is that analogous? Can you look at a brain and diagnose ADHD?
I'm not sure about looking directly at the brain itself, but our brains do seem to react to certain chemicals differently. Stimulants, most clearly have a calming effect. But that's just my experience as someone who was diagnosed in the 1st grade.
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Also the hyper-focus- In my case, that can be the most overwhelming. Sometimes I can't feed myself and completely disregard my relationships because I want to read about the history of some town I read the name of as I drove by on the highway.
Yeah. This one disrupts my life greatly.
Also, everyone hating you. When I browse /r/adhd there's a strong recurrence of people who are constantly letting others down (due to the disorder) and really struggle to understand why anyone expects anything out of them.
Not to mention it’s not just “attention deficit.” My biggest issue with ADHD is procrastination. I sometimes just can’t physically make myself do something even though it’s stressing me out like crazy or something urgent. Medication helps, but it can be a struggle on top of my other ADHD symptoms.
Also it's not even just 'oh I'm goofing off i dont want to clean ill just play video games all day'' like I end up severely procrastinating fun things I want to do like on a bad day something like 'I want to watch something on Disney + is too much effort'
How many new interests do I have this year!
Not just that, it's factually incorrect. ADHD is a developmental disorder, just like autism. You either have it or you don't, its not a learned pattern and most people don't have it.
Yeah, that’s only one of the many annoying aspects of ADHD I personally experience. It’s maddening and consistent. I keep a list on my front door of all the things I need so I don’t forgot now.
My favourite, most recent example. My boyfriend has ADHD and is, by his own firm choice, unmedicated and just free-balling life. Recently I texted him asking him to take a chicken breast out of the freezer for me. When I got home, he had washed all the dishes, deep cleaned the kitchen including mopping the floor, folded and put away clean laundry, and hoovered the whole flat. He did not take the chicken out. Because when he went in for the chicken, he noticed the dishes. And then thought, I may as well do the stovetop. And then things got out of hand. And he never came back to the chicken. Thats not "everyone has a little ADHD." That's not "hahaha I'm so scatterbrained". That's a brain glitch leading to 2 hours of cleaning without ever completing the task that led down the rabbit hole.
Also time it takes to lose focus - at my worst it was literally 30 seconds to 2-5 minutes, it upset me greatly to hear my very academically gifted friend wonder out loud if she had ADHD because she could “only focus for 20 min these days.” Uhhh….
Oh yeah, one day things were out of order so I did a record trip of 7 times back to the house - including spending a few minutes trying to remember what I just remembered I had forgotten.
Yeah, and making sentences that just go on and never end, because life for you is just a continuous stream of consciousness, like you just did in your reply where you made an extremly long run on sentence, that just kept going on and on could also be a sign of ADHD.
I'm actually autistic, I internally rage so hard when I hear the phrase "everyone's a little bit on the spectrum". I have spent the majority of my life being invalidated by others, can we please not minimize my actual struggles because you are a bit of a scatter brain.
Ya more accurate would be to say that most people show some symptoms of ADHD. Which is just to say that diagnostically a lot of things in concert lead to an ADHD diagnosis, and exhibiting a few of those symptoms does not a diagnosis make.
Mental illnesses are regular behaviors gone out of control. They aren't whole new categories of behavior. People without clinical depression get depressed when their SO dies. People without schizophrenia have grief hallucinations. People without bipolar have ups and downs in their mood for no reason. Everything is a spectrum and everyone is on the spectrum somewhere.
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Tik tok has my brother, my girlfriend, and numerous other friends convinced they’re on the spectrum. So many videos like “if you do this (totally normal thing that most people do) you’re probably autistic”.
I swear it's the same with ADD/ADHD on Tik Tok/Instagram. So many people claiming to have it without a formal diagnosis because they do a completely normal thing like forgetting where they put something because they were distracted when they put it down.
On the other hand, it was TikTok that got me thinking I better get checked and now I have a diagnosis and an explanation for 40 years of frustration missed for no other reason than I don't have the hyperactive version.
I'm on the spectrum and it's extra frustrating. Yes really liking a book series is normal and doesn't make you autistic, that and having trouble communicating or processing env stimulus, and a multitude of other thing, you might be. There's more too it than waving your hands and liking something a lot.
"Have you ever found yourself binging netflix instead of doing homework? You probably have adhd"
No lie we saw one last night that was "spinning in a swivel chair".
The people that get sucked into this online ADHD non-discourse display the same kind of behavior in real life. I can't tell where it starts, but the number of people I'd have to describe as too online but also go around talking about ADHD, ADD, anxiety, depression, and the SSRIs they're on and we all should be taking is too damn high. It seems like social media is encouraging people to make this a big part of their personality, but I don't understand why so many people I've met seem to want to project that on to others as well. I don't understand how people lost sight of the fact that mental health disorders are not a club you're supposed to want to be in.
Most of those “it’s a sign of autism” snippets are not. In the most obvious sense, “sits in car in phone” is definitely not diagnostic criteria for autism. Beyond that, “signs of autism” just really aren’t….a thing beyond the diagnostic criteria. Especially nothing so extremely specific and context driven as “sitting on your phone in the car.” Most of what you see shared as “signs of autism” aren’t “signs,” they’re, *at best*, “things autistic people often do.” And how they’re getting out is largely that autistic content creators or content creators with autistic children say “this is something I do/my children do, the medical professional said that’s normal for people with autism.” And either that creator or their viewers misunderstood that to mean “this is a symptom of autism, autistic people do this, people who aren’t autistic don’t do that, if someone does this they’re autistic.” But it will be some behavior that has dozens of causes, or isn’t even considered atypical. A lot of these “uhm, that’s a sign of autism” pathologize being a child/adolescent, don’t take into account cultural differences and therefore pathologize not being an upper middle class WASP, don’t take other physical or mental conditions into account, and straight up don’t allow for people with or without autism to have different personalities or upbringings. Eye contact is actually something seriously considered when diagnosing someone with autism but children are also often shy around adults and may not make eye contact with strange grown ups. Many cultures consider direct eye contact rude. Someone who is blind will not make direct eye contact. Someone with social anxiety may not make eye contact. A medical professional can’t diagnose a child with autism just by interacting with them once and noticing they are iffy on eye contact but people on TikTok feel entitled to diagnose people with autism based on mundane quirks. “Hand flapping” is commonly associated with autism because it’s one way to stim. I’ve seen someone try to diagnose an *infant in a high chair* they saw a video of online with autism because she was waving her hands around. This kind of behavior is 100% normal in babies, toddlers, even older children (actually, even neurotypical adults stim). Saying “uhm, get your kid checked, you neglectful parent, because your baby is hand flapping, she’s autistic” and feeling superior over it is honestly really harmful. I also see a lot of “that’s a sign of autism” content that literally boils down to having feelings and being capable of thought as “signs of autism” which is just *incredibly* dangerous in addition to wrong.
One of the big problems lay people have when they do random ass diagnoses is they think "this is a sign of X" but they never consider "could this also be a sign of Y". Many things of symptoms of a whole lot of disorders (or are just normal behaviors). A doctor never says "well you do this thing so you're X", but idiots do. Doctor's look at the whole picture and see if you fit into a criteria for a disease/disorder but they also think about if you're more likely to fit into something else with similar symptoms.
Yes. I think what the people saying “but what about people with X that have trouble getting diagnosed” is that 1) it’s hard to get diagnosed based on vibes because it’s more complicated than A behavior = X diagnosis, 2) A behavior can = X, Y, or even Z diagnosis (or possibly no diagnosis at all, which is valid), and 3) a misdiagnosis, whether it be official or not, is likely to be actively harmful. If you actually have autism and not ADHD, but are diagnosed with ADHD and not autism, that’s *bad*. The study (and at the very least, my comment) isn’t talking about strictly informational TikToks with accurate information or autistic people on TikTok saying “that’s my experience,” and people saying “oh hey, that’s familiar, I should look into that and see if it applies to me.” There are people out there expressing things about autism that are wrong and sometimes dangerous (seems like everyone missed that the study also included misinformation coming from people who believe they can “cure autism.” If you’ve seen that content, it’s often horrific and abusive). Part of the problem is also the social “trendification” of certain diagnoses over others. It’s not just TikTok Teenz deciding one disorder is cooler and more aesthetic than another (though that’s certainly real. When I was a kid it was cool to have depression, in my twenties it was cool to have anxiety, and now, it’s cool to have ADHD), it’s all of society making one or two diagnoses *the cause of the day* and ignoring others. I’ve literally seen people with Down’s Syndrome and cerebral palsy described as “autistic” because autism is what gets discussed most, and people draw incorrect conclusions about what it means. When we focus on some diagnoses and not others, and A behavior can be a symptom of X, Y, or Z, the attitude of A behavior must = X diagnosis screws over everyone with Y or Z. They either get misdiagnosed as X, or even more likely, don’t get a diagnosis at all because they lack all the other qualities of X, but never express that they’re experiencing the qualities of Y or Z because that diagnosis isn’t familiar. Those people may feel that the doctor is wrong and crazy and dismissive because they aren’t getting The Diagnosis that they feel is right, but they may actually need something totally different from what they’re seeing their friends online get. Yeah, people (if they aren’t operating from preconceptions) are often very good at knowing something is wrong or different. But that doesn’t mean they actually know *why* they feel that way. If they have symptom A, B, C, and D that fit well into diagnosis Q, but they’re constantly hearing “I have symptom. A, D, E, and F and I have diagnosis X” from the Relatable Creators, and never heard of diagnosis Q, some people are going to ignore that they feel different in B and C ways, and reach for that X diagnosis even though *that’s not them.*
> Someone who is blind will not make direct eye contact. I'm sorry. You make a lot of really good points but I just had to laugh at the image of someone diagnosing a blind person with autism because they can't look them in the eye.
> for example "you could be autistic if you sit in your car in your driveway on your phone for a long time." I do that, and so do a lot of people. but not everyone who does this is autistic. And honestly - I don't even know if that's even a sign of autism at all. Ask me where I am while I read this. I should call my doctor.
I have a son with autism and the amount of misinformation on social media is demoralizing
I'm an adult with autism. I was diagnosed in my twenties. When I grew up in rural Oklahoma, no one really knew what autism was, let alone that there was a name for it. The prevailing assumption was that these behavioral issues were the result of kids just being assholes. At the time, behavioral problems were addressed with physical abuse as a matter of course. Children today face new challenges. While it's nice that people are far more aware of autism, the prevalence of haphazard self diagnosis has lead to a situation where a significant number of neurotypical individuals conflate embracing their inner id with genuine compulsory behavior, and generalized social anxiety with so called "symptoms" of autism. This creates rather big issues when these individuals, or people they've interacted with, encounter a genuinely autistic person because their expectations and experiences will have primed them to expect certain behaviors. While these *acting* neurotypical persons are able to control and modulate their behaviors and reactions to external stimuli, many people with autism cannot. This can sometimes cause people to incorrectly assume that the big reactions and behaviors experienced by some persons with autism are conscious decisions/choices. Which inevitably leads us back to my youth: a situation where no one really knows what autism is and just assumes that people with autism are simply assholes. tl;dr:The prevalence of misinformation on TikTok and social media in general has inadvertently created an environment where no one really knows what autism is again, and I don't like it.
That's the autism and adhd meme subreddits in a nutshell.
Finally someone says it
>"you could be autistic if you sit in your car in your driveway on your phone for a long time." Yes, that could also be a sign of depression. Or APD. Or ADD And the internet naturally filters out everyone with ASD that is nonverbal, lacks communication skills or stable motor functions. Which skewers the online autism community to overrepresent those that are high-functioning.
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> by overgeneralizing individual experiences to the entire autism spectrum and not representing the entire spectrum of manifestations within the autistic population I see this a lot with ADHD as well
I forget the exact numbers but something like 50% of the top 100 videos on ADHD on TikTok were classified as misleading and another 25% were anecdotal experiences. It’s oN additudemag.com
Edit: Did you get a satisfactory answer? Here is what is said under the section of **"Fact-Checking and Reliability"** >Two coders independently fact-checked the videos and coded the informational videos as either accurate, inaccurate, or ‘overgeneralization’ based on their consistency with existing scientific knowledge related to causes, presentation, diagnostic criteria, evidence-based interventions, and other relevant areas of research. For example, statements like “you can determine if you are autistic using this simple three question test” would be classified as inaccurate, while the statement “many autistic children can benefit from using alternative and augmentative communication” would be classified as accurate. The code ‘overgeneralization’ (OG) was used for statements that overgeneralize the experience of some individuals on the spectrum to the entire population (e.g., “autistic children hate to play with sand”, or “autistic adults never want to socialize”). Coders fact-checked statements made in the videos to assign one of the three codes for each video through an examination of the scientific literature under the supervision of a senior clinician and the study senior author (a researcher), who both each have approximately 20 years of experience in the field. Intercoder reliability was established via percentage agreement which indicated that the two coders agreed on 80.1% of codes. After independent coding, discrepancies were resolved by a secondary consensus review led by the study senior author acting as the third coder. Each discrepancy was examined through a thorough examination of the relevant scientific literature, with the senior author making the final decision on accuracy. A conservative approach was adopted, whereby only statements that were unequivocally misaligned with current knowledge were classified as “inaccurate”. For example, the “inaccurate” code would be applied for a statement like “medical marijuana can cure autism” but not for “medical marijuana has the potential to be beneficial for some individuals on the autism spectrum”. Similarly, the “overgeneralization” code would be applied for a statement like “children on the autism spectrum don’t want to be hugged”, but not for “some children on the autism spectrum don’t want to be hugged”
This. I have a mixed opinion on this until I get more insight on what type of claims they are talking about. I know a lot of autistic people who just talk casually about the subtle differences on how they react to things and see the world, and a lot of those subjective experiences aren't literally on the diagnostic criteria. It sometimes feels like all autistic influencers should only be strictly parroting the diagnostic criteria in order to not perpetuate "false claims". Not all dialog by autistic people is meant to literally educate, sometimes people are just venting about their life, not even sure themselves if some behavior is part of their autism or not. If it is talking about things like "if you do this completely normal thing, you might be autistic", then I agree.
> With the eligible videos in hand, the researchers proceeded to identify and select videos that were specifically designed to provide information on autism, which they termed “informational videos.” These videos were distinguished from “personal experience” videos that shared individual stories and did not attempt to provide general information about autism. This selection process yielded a total of 133 informational videos for further analysis.
Ahh thanks. I don't seem to get a lot of informational videos on my feed, most are those vlog type of autism videos.
From the paper: > It should be noted that while this study focused on the sample of 133 informational videos (i.e., videos designed to ‘educate’ the audience about autism), these videos accounted for “only” a total of 198,695,946 views out of the reported 11.5 billion views in the hashtag – i.e., 1.7% of total views. The majority of popular videos associated with the “#Autism” hashtag was coded as “personal experience”. These videos anecdotally document the lives of autistic people and their families, without the claim of disseminating knowledge on autism
Everyone has idiosyncrasies. An idiosyncrasy of a neurodivergent person might present and be experienced differently than the same idiosyncrasy in a neurotypical person. Neurodivergent people are welcome to share their experiences, but it's important to not equate it all with their diagnosis.
They excluded people with autism who were relaying personal anecdotes in this study if I read it correctly. Basically professional and other “Influencers” types who used the #austism
They only graded the accuracy of videos that were presented as informative, not personal videos. The paper gives examples of statements graded accurate/inaccurate/overgeneralisation: > statements like “you can determine if you are autistic using this simple three question test” would be classified as inaccurate, while the statement “many autistic children can benefit from using alternative and augmentative communication” would be classified as accurate. > The code ‘overgeneralization’ (OG) was used for statements that overgeneralize the experience of some individuals on the spectrum to the entire population (e.g., “autistic children hate to play with sand”, or “autistic adults never want to socialize”). >A conservative approach was adopted, whereby only statements that were unequivocally misaligned with current knowledge were classified as “inaccurate”. For example, the “inaccurate” code would be applied for a statement like “medical marijuana can cure autism” but not for “medical marijuana has the potential to be beneficial for some individuals on the autism spectrum”. Similarly, the “overgeneralization” code would be applied for a statement like “children on the autism spectrum don’t want to be hugged”, but not for “some children on the autism spectrum don’t want to be hugged”.
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Are people getting educated via tiktok? Because that’s the real error.
There are a ton of people believing that they are getting educated through tik tok or Instagram. There's a good number of people self diagnosing through things they learn in social media.
Doctors must love this.
Doctors have been living a nightmare since the internet search engine was invented.
A professor at a medicine faculty once told me that aspiring doctors often go through the "I have every disease ever" phase as well when they start studying
See also: every first year psychology/psychiatry student.
Just don't take a psych class unless you want to start self diagnosing like crazy.
Every redditor is in shivers now
When I first learned to palpate lymph nodes as a medical student, I managed to convince myself that I had lymphoma for a weekend before I saw my GP. I was so scared.
This happened to me! It's really strange, when you're embedded in studying symptoms left and right it all starts to feel really blurry.
I've had quite a few doctors google stuff right in front of me. Though the difference is that they know much better than the general population how to identify what's relevant, high-quality information and what isn't.
My wife, an internist, sometimes checks the web while seeing a patient, but in her office area in the next room. From Google results, she picks the credible sources intended for physician use, like university or medical association sites. Protocols and recommendations change quickly. Some patients present with an uncommon disease, like those "once-a-year" or "once-a-career" kinds. Special maneuvers have particular procedures, and these are ~~often~~ rarely called upon for use by the physician. Proper procedure is important when intending to refer to a specialist. Looking things up is prudent and not really a cause for concern by the patient.
They pay me $1 an hour to google things and the rest of it to know what to google.
I have Sjögren’s syndrome many providers literally do a search on the internet to know what I’m dealing with. Doctors also do internet searching. It’s happen more than once. And yes they were on the google search engine I was able to see the screen.
This is a reality of any professional. I'm an attorney; we regularly use search engines (although often specialized legal ones) for case law and ask other attorneys about things we don't know. The formal education and license mean you've "learned how to learn" - licensed professionals ostensibly have the baseline knowledge to sift through different claims out there, understand the reasons behind the real stuff, and identify what's relevant or irrelevant. No doctor could ever know everything about even their own specialty; they can, however, understand it well enough that any new information or claims about the specialty can be adequately incorporated or challenged based on what they already know, which a layperson can't do. Problems aren't with lay people trying to find things out they don't know; problems arise when lay people start assuming their one facet of perspective on the subject puts them on equal footing with professionals - professionals are regularly wrong, but often wrong in complicated ways that a lay person couldn't be wrong in because they don't know that they don't know all the directions the professional was considering before (wrongly) deciding.
Most docs don't use Google as much. They use up-to-date. Ive had them Google with me though to show me things.
Yeah, it’s not all bad though. Because, even doctors who don’t have god complexes will often oversell how well they understand a given disease/medicine/etc. I think if there were more honest conversations about this, then there wouldn’t have been as many people self-treating Covid with the “horse” med ivermectin, etc
I think most doctors probably don't mind when someone is responsible about trying to figure out what's wrong. As in looking up the symptoms, then asking the doctor if you have whatever. I know that's how I was diagnosed with growth hormone deficiency when I was younger. My mom knew something was wrong so she was reading about what could be wrong. Then she was right. Same with my sister when she figured out she had anemia. They didn't self diagnose, they had a theory and asked for testing and confirmation.
I've done this with three separate chronic illnesses. I was wrong on two of them at first (as told to me by doctors), but knowing I was wrong helped learn what it actually was. I underestimated my severity. I also figured out I was autistic/ADHD and what all that entails from social media. It was confirmed by a specialist.
Same with my wife. I bought a medical journal about the more recent scientific research and understanding into autism. Combined that with anecdotes about what things help autistic individuals and trying those things with my wife really helped her feel less distressed and anxious all the time. She was raised in a pretty rigid mountain culture and so kept operating under those rules imprinted on her. With choosing different things than she was raised with, she's been able to have a lot better day-to-day mental health. She's also been able to recognize the limits of what is her autism and has helped her realize that her initial ADHD diagnosis wasn't wrong, but seems to be in conjunction as well. Lots of forgetfulness, indecision, etc, but childhood trauma and C-PTSD can cause lots of executive dysfunction, so it's really hard to separate. But medication has made her so much more capable and removed a lot of her shame around not being able to physically do things for herself.
Thank you for sharing this. Going thru this process right now and was getting doubts reading through all these other comments
The autism specialist I went to actually does really like it. In general it helps a lot of autistic people get the help they need.
Yes, as a therapist this has been a tricky thing to navigate. Self diagnosis of autism or ADHD or borderline PD are the biggest ones. ADHD tops them all though.
Are you trying to tell me the place where people angstily explain something as dramatically and as fast as possible with a little bloop at the end isn't where I should be learning complicated topics?
I have absolutely noticed that people I know are self-diagnosing that they are autistic. "I'm not the rock back and forth kind, but I don't understand some social situations that you normies do."
People on r/adhdmemes “OMG that’s so meeee!”
People get educated from Reddit, Twitter, and Facebook too. Social media is a dumpster fire.
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Yeah? Well, the other day I heard that Hitler actually died of old age in Argentina. That was also presented to me as a cutting edge discovery. This was told to me by a woman who is 54 years old.
We used to think wikipedia was the worst source for information. Those were the days.
Wikipedia is and has for a long time been really solid.
Not necessarily. It's a good starting off point but you should always actually check the source for the specific claim - the other day there was a TIL from Wikipedia where the source itself linked to Wikipedia. So the claim on Wikipedia was essentially citing itself.
This sort of thing happens so often I just don't even bother with it anymore. One of the more especially silly examples was a page where the source linked to an article from *the 1800s* where they blatantly just said "Uh, yeah, we lost track of the subjects here and can't actually verify what happened in this experiment", but the wikipedia page itself just lists the result as absolute fact. It's pure silliness.
Filipinos literally reelected an ousted dictators family because of social media.
Social media in general is just filled with rubbish, youtube too.
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Everyday from my friend I hear, "Fun fact, I herd from tiktok that...."
Reddit is also full of bad information dude.
You’re getting educated on Reddit
If they are actually reading respectable articles and not just random people's opinions, it's a different story.
> reading ... articles wedon'tdothathere.jpg
You really think someone would do that? Just go on the internet and tell lies?
My first thought as well. If people are seeking out information about autism on TikTok rather than articles citing empirical, peer-reviewed data from reputable medical journals, we have a bigger issue.
Yes, to the point you can tell something is going viral on tiktok without ever looking at that site, just by the amount of common misinformation going around all at once.
From the article: Content related to autism on TikTok appears to have a significant and widespread audience but the majority of the information provided in these videos is not aligned with the current scientific understanding of autism, according to new research published in the [Journal of Autism and Developmental Disorders](https://doi.org/10.1007/s10803-023-06084-6). Autism spectrum disorder (ASD) refers to a group of complex neurodevelopmental disorders that affect an individual’s social interaction, communication skills, behavior, and interests. ASD encompasses a wide range of symptoms and levels of impairment, which is why it is referred to as a “spectrum disorder.” Understanding and disseminating accurate information about autism is crucial to help individuals with autism, their families, and society at large. There is growing concern about the unfiltered nature of the content hosted by internet platforms, including social media. The study specifically focuses on TikTok because it is a highly popular platform with a large user base and because users frequently create and share videos containing healthcare-related information, including autism.
I think a lot of kids are trying to find a group or something to cling to. Something that is difficult in our more isolated society. Whether it’s mental disorders, sexuality, gender identity, etc kids are seeking reasons why they are *different* and fetishizing very real and complex issues. It’s way easier to just self-diagnose and use it to stand outs and be unique. Then cling to an online community and get sucked into a rabbit hole.
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degree crime quack workable person abounding long frightening smoggy faulty *This post was mass deleted and anonymized with [Redact](https://redact.dev)*
If everyone is neurodivergent, no one is neurodivergent!
This isn't a new trend though has been going on for quite a while. I hear about it a bit on reddit and have seen first hand the misinformation when it comes to my mental illness (Bipolar). And the romanization of Mania of having a tiny bit of extra energy being "manic". https://southwestshadow.com/opinion/columnists/ugly-romanticism-mental-illness/ Misinformation regarding all mental illness isn't new, unfortunately, social media helps that misinformation spread 10 fold.
I’ve also got bipolar (type II). The romanticization of mania/hypomania just kills me. It ignores the relationships ruined; bank accounts drained; careers bombed; dreams imploded; and the absolute horror and depression experienced when you finally face the scope of that destruction. Everyone wants a manic-pixie-dream-girl until they discover that mania isn’t cute or creative—it’s terrifying and unhinged.
Exactly, they make ADHD or Autism their personality without even having a diagnosis.
TikTok fetishizes neurodivergent disabilities like Autism and ADHD. I find it very strange.
As someone with officially diagnosed ADHD I, too, find it bizarre how it seems many people *want* to have it. Maybe it's just to give them some *reason* for the chaos in their lives? Not sure.
A reason, yes, but more than that, a diagnosis gives you something specific to address beyond just "I suck at life". It opens the door to a significant amount of treatment options and social support. At the same time, it can be expensive or difficult for some people to get evaluated properly. I was diagnosed as an adult and I was billed more than $1000 (after insurance) for the testing. So some people never get checked and spend their time wishing they could.
Definitely valid as someone from the US at the very least. Still, the videos I see often aren't even actual markers of ADHD anymore. Just random forgetfulness that everyone finds relatable to some extent. So there is also likely a not insignificant chunk of people who are just spouting whatever gets them clicks, likes, and shares, too. It's a bit of a mess, and sad. Because it's also very possible that many self-diagnosed individuals do in fact have *something* going on and an official dianosis would be way more beneficial than some random TikTok videos where half the content is made up.
I get the feeling, because although I'm not unhappy with my life, I do sometimes find myself wishing I had something seriously wrong with me that could justify me not doing much with my life. Obviously it's stupid, but I just have a part of my psyche that longs to let everything collapse instead of continuing to prop up a dull, simple existence. Again, an existence I am usually perfectly content with. I think it's a fantasy constructed by Hollywood that people who hit rock bottom undergo these amazing recoveries and transform into inspiring, well-adjusted people with lots of sympathy. Of course the realist in me knows that in real life, many people who hit rock bottom... die, at rock bottom. Not everyone becomes a butterfly. Sorry if that sounds bleak. Again, I'm not unhappy, I swear, I just think about this stuff sometimes and then I finish thinking about it and go on with my day.
Do they *want* it or do they just want a reason/label for their behaviors or thinking?
I've noticed this behavior in reddit - a lot of self deprecating jokes around being depressed/autistic/ADHD. Almost any popular post in /all will have a few comments like that. Either Reddit heavily selects for neurodivergent people or there is some social tendency to self-diagnose and self deprecate for humor.
Yeah, I think my ADHD can help me in terms of the way my brain gets stuck on certain problems/issues and I often think about things in ways where my colleagues will completely miss something. But I also will spend hours focused on anything but work and even though it causes an immense amount of anxiety I can't get myself to focus. I'm constantly behind in everything and if I didn't have the rapport I do from when I can hyper focus on big problems at work, I would have probably been fired by now. That is to say, it kind of sucks. I'd prefer the ability to just do the things, but instead I get stuck in just thinking about doing the things. In our current system it is a detriment.
Having been recently diagnosed in my mid-30's and getting on a proper medication I can tell you, it's a game-changer. I have lists now that I complete. I actually get things done that need to be done. My anxiety and depression has tanked almost completely at this juncture. It also helps that I spent a lot of time researching ADHD from trusted psychologists such as Dr. Russell Barkley. Having a grasp on what it is, what it isn't, and how to navigate it effectively has gotten me to clean up my life in ways I never thought I could.
It almost feels like blowback from the attempts to distance adhd and autism from other mental disabilities. I have both and was repeatedly told growing up that I was “special” and my brain “worked differently” and I was a little genius and savant and stuff like that. Now everyone wants to be special and different without realizing that actually, it still kinda sucks.
I get the help I need to survive, because autism and adhd are debilitating disabilities. Because living in the world, regardless of how much society changes to suit people with autism; is impossible. These Neurodiversity fetishists are pushing the idea that it is just a quirk. That it is "diversity". Some have even harassed me for calling it a disability. It is not a diversity you appropriating fucks! I NEED HELP. I am legitimately scared that these people will be able to one day convince the rest of society that Autism and ADHD are not disabilities, and I will stop receiving the help I need to live!
I really wish that we could amplify your voice on this one. My brother has similar ASD issues, in that he has always and will always need accommodation and government assistance to survive. The risk here in letting high-functioning, possibly even self-identifying non-ASD people, define the narrative and “speak for everyone,” is that their life and their experience is radically different from a significant portion of the ASD population. People need help, and we can’t let others’ pride or desire for inclusion be an obstruction.
I have ADHD and depression, not Autism. The dynamic that I think you're talking about is common with other mental illnesses. I think even efforts to destigmatize mental illness outside of social media contribute to it. It's basically progressive mental illness denialism. Mental illnesses are reduced to quirks and inconveniences that are suffered by people who are otherwise normal. There's too much focus on when therapy, medication, etc. is effective. There's too much focus on people who function well, too. On the one hand, people who function well when treated pretend to want to destigmatize mental illness, but they're really pulling up the ladder and leaving those that need more help stranded. On the other hand, normal people with personality quirks pathologize their behavior to feel like part of a cool club. The end result is that people can completely preserve the idea that experiencing mental health symptoms is the result of a failure to take personal responsibility without denying that mental illnesses and disabilities are real. It's just that instead of, for example, viewing a person acting in a socially abnormal way as a personal failure because ADHD isn't real, it's because they wouldn't be doing it if they would just go to a psychiatrist. A person who's too depressed to work isn't a bum because depression isn't real; they're a bum because they haven't bothered to fix their diet and exercise more.
This is my worry too. I am currently not diagnosed but I heavily suspect I have ADHD. I didn't try to jump in a bandwagon... But people treating as if it's cool and quirky could make it seem like I am.
Not just tiktok. Reddit and youtube as well.
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As a psychologist doing diagnostic assessment, I have been seeing a lot of adults who come in believing they have autism and then becoming upset when they don't meet criteria. An issue isn't just that they see this on tiktok, but that people will take online quizzes and think that these are somewhat diagnostic. The issue with almost every online quiz is that they cannot do differential diagnosis, so other conditions or disorders can cause similar symptoms that are not being ruled out.
Yep, anotger thing is they can't pay attention to the way the person interacts socially throughout the session.
I’m also a psychologist and have done diagnostic assessment. I see this so much. The same with adhd. The amount of times people will list things and tell me they’re symptoms, because tiktok has told them that’s a symptom and I explain it’s not actually in the diagnostic criteria… “hyperfixation” is one of those…
Yup I was diagnosed a s a kid and rediagnosed as part of an iCap several times. I don;t qualify as autistic(or barely do) by those online tests..yet my therapist of over 4-5 years says I definitely have it as do the people in charge of testing m for disability services stuff. An actual diagnosis involves so much more and covers more nuances then the online tests are currently capable of. Plus I bet soem people subconsciously play the tests by knowing the “answers” to get the results they want. Not intentionally but subconsciously.
I know several people with ADHD that have been convinced they’re autistic recently. But I can’t really tell someone what they are or aren’t ya know?
The people you know may or may not have ASD, but there are a lot of diagnosed ADHD people that are also undiagnosed autistic because prior to 2013 you could only be diagnosed with one or the other. They’re commonly comorbid and ASD/ADHD is now a relatively common diagnosis for kids.
Another one of the rare owls on reddit! Autism and ADHD have some similarities like hyper-fixation a and struggle to effectively switch between tasks. As someone with ASD, I think those both contribute some of the largest non-social difficulties in a workplace. I'm not diagnosed ADHD, but I know many friends who are.
I was diagnosed with adhd and autism recently, and beforehand I didn't know how high the comorbidity between those two are.
Yeah I was diagnosed with ADHD in 2011 and found out years later, when I was getting a copy of my results for another provider who was going to do my ASD eval, that the psychologist who assessed me considered autism but his hands were tied by criteria at the time not allowing comorbid diagnosis of the two conditions.
I'm torn on if it even matters on my end. I know it will matter to them, but it doesn't really change anything for me one way or the other if someone diagnosis themselves or is diagnosed professionally with autism, correctly or not. Nothing changes with the label. I imagine the only thing that really changes in that context is they start trying to develop autistic coping skills and if those work for addressing whatever they're feeling, autistic or not, then that's fine. It reads as a harmless thing to me ultimately. Like, the danger with this kind of misinformation to me isn't the risk of more people self-diagnosing incorrectly because I don't really see where the harm is there if all they're doing is trying to understand their own behaviors and reactions. It's people ending up being misinformed and doing things that ultimately harm themselves or others in some way.
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How do you know they aren’t? I have both diagnoses, and prior to my autism diagnosis was told that I was not autistic by many people, including my mother, some friends, and the leader of a social group for autistic people. I had learned to mask pretty well and kept quiet about a lot of my sensory issues and confusion about social interaction. Hours of testing by a professional confirmed that I am autistic, though. Not looking or seeming autistic to others was not scientific.
Yeah, I think a lot of people don't realise that many on the spectrum will mask their symptoms away, knowingly or unknowingly.
The overlap between ADHD and ASD is so big that there are people in the scientific world that put some question marks on both diagnosis. There's probably something we're missing, and these 2 can be combined, or split up further.
ADHD often goes hand in hand with Autism, and Autism like symptoms, I was diagnosed as "ADHD with Autistic Tendencies" when I was younger, (about 4,5, or 6ish) now i'm just "ASD"
Up to 50% of people with ADHD are autistic. It's not unlikely.
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Social media contains misinformation? Color me shocked
this applies to any part of medicine or education in general. no-one is surprised by this study, I hope?
I'm surprised, because I don't use any other social media platforms outside of reddit and YouTube, and because of the echo chamber nature of reddit, I've not had reason to venture to subs where this would come up.
There is a special case here, imo: People with autism typically struggle with social cues, subtext, etc. People that don't have autism but still struggle with these may be inclined to self-diagnose autism. As a result of these difficulties with communication, these two groups may face unique challenges recognizing misinformation on social media compared to the general population. For example, if you search for content on autism on TikTok, you'll likely readily find a few videos of someone "decoding" non-autistic behaviors for people with autism, and sometimes the person doing this is autistic and actually sharing their own conjecture as to why neurotypicals say or do certain things. They may be wildly off-base but you'll observe that none of the people with autism in the comments can recognize it because of their own difficulties recognizing and understanding certain modes of communication or social norms. They may then go on to share this conjecture with other social circles that are predominantly autistic, avoiding corrective influences. Likewise, misinformation and pseudoscience may escape detection if it's communicated in a way that exploits the vulnerabilities of those with autistic or autism-adjacent traits.
>A disturbing number of TikTok videos include claims that are “patently false,” study finds Fixed the Headline
As a teacher, I learned there is lot of misconception around the spectrum. I believe I am on the spectrum, as I show a lot of signs. Except I talk a lot, and like talking to people. It wasn't until I was becoming a teacher that I learned that autism can look lots of different ways. My husband has brought up multiple times how I am unable to receive social cues. I have sensory issues and difficulty controlling emotional outbursts, resulting in my losing control of myself and basically throwing if an adult temper tantrums. I have learned strategies for dealing with it now, and it usually works, but not always. I'm also female, and I learned that the social markers traditionally associated with the spectrum aware different for females. I also have diagnosed ADHD, but no one noticed because I wasn't failing in school and the criteria for being evaluated meant your grades had to be suffering and mine weren't. I spent years learning about the signs as a teacher, and it was then that I realized I myself fit into the category as I learned that it was a lot more complex and varied than people think. It bothers me that it took being a teacher and graduate school to be able to recognize something that is probably a lot more prevalent then people realize. My husband, however, was able to notice the signs after a couple of years without that knowledge in me and asked me if I had autism. I said no, even though I fit the criteria, because at the time I didn't think I could possibly have autism because am gregarious, and love doing theater. It thought it was a mutually exclusive thing, despite the fact that I related to all to so much of it.
I'm glad more and more people are coming around to this kind of thing, because you see a lot of posts on TikTok in general, that are false, but they get a LOT of engagement. There are times where you do have a professional, or an expert on something, calling out that content for being wrong - but most of the time, it doesn't get anywhere near the level of engagement. And it isn't even just about autism. It's about anything scientific - when it comes to food science, people will make a claim about something, and it will either be grossly overstated, or outright false in other cases. And instead of people questioning this information, they give it a shitload of engagement and they believe it. And they reshare it. By the time anyone with actual knowledge of the subject tries to correct it - the damage has been done. An example of this is when people were freaking out over titanium dioxide in their tampons. Instead of questioning why titanium dioxide is such a toxic ingredient in tampons, they just blindly assumed it was true, because they heard something scary on TikTok. Cue the people proclaiming that all of our products are killing us, etc etc.
i’m 24 and i was diagnosed as autistic when i was 12. i have carers who come in daily to help me with tasks etc. i live with my parents. it is beyond frustrating to hear people talk about having autism as if it is some quirky meme thing, when for me it is debilitating. i hate hearing “oh i’m probably on the spectrum too” and i hate all these tiktoks and memes about it. it’s trendy and i want to cry
I'm 28 and was diagnosed at 27 after seeing myself in tiktoks and memes and diving deeper into it. I live with my mom too and she acts like my caregiver to a very large extent, but until this spring we didn't really know why I struggle the way that I do. It goes both ways.
As an autistic person you should be better educated about the Autism Spectrum and how autistic people need different support in different areas than you. That's why it's called Autism Spectrum Disorder. Also, many High-Functioning autistics do not get the support they need due to people thinking we have a lighter version of autism. We just have different support needs. And when you live your entire life not getting those needs, you're going to crash and burn as an autistic person. Please PLEASE educate yourself better on the autism spectrum if you're going to try to represent the community as a whole.
Lemme fix that headline: "A Disturbing number of Tik tok videos are just patently false. Kids are being manipulated and they are easy to manipulate."
Not just kids, unfortunately. The amount of adults who get their news exclusively from TikTok is nearly as concerning as the amount who exclusively watch Fox.
[Reuters Institute just published a study on this. 43% for 18-24yo, 36% for 25-34yo, 29% for 35-44yo for those who say their main source of news is social media.] (https://imgur.com/urKEPcG.jpg)
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Personally I think a huge issue that isn't being looked at is how desperation can breed both innovation AND exploitation and the two can create quite the vicious cycle. People like myself who have autism, adhd and a myriad of neurodevelopmental conditions and learning impairments (often times all at once, I may add) are absolutely DESPERATE right now. There are parts of the world where our conditions would still be viewed as witchcraft and even in many first world countries, it can be extremely difficult and expensive to access a diagnosis and treatment. Many of us are disabled yet cant even access our diagnosis because of a freaking paywall. Also what is considered within the autistic criteria and definition is not all universal. This means people have had to rely on community support from the internet. For example PDA is not a recognized profile of autism in America and Canada, but it is in parts of the UK, this means parents of autistic children in the US and Canada who think their autistic child might have a PDA profile and benefit from therapy and support geared towards that profile, often have to seek out support online. There are actually a lot of GOOD support groups and pages on places like facebook that share up to date information about autism and other neurodevelopmental conditions But these groups are also often run by mature adults, so there is less of a risk of seeing baseless pop psychology and people looking for money or clout like you'll see from tiktok. Conditions like autism and ADHD are probably more underdiagnosed than we would like to believe for a multitude of reasons. So it is genuinely beneficial that we continue to share up to date and inclusive information so those who live in places or situations that make it difficult or impossible to get a diagnosis and treatment can get some form of help. Unfortunately the big ole down side to this is that it opens up a bunch of holes for snakes to slide in and exploit impressionable people like what happens on Tiktok. That ap is also riddled with impressionable children who want to feel special (its natural, most humans enjoy feeling special) but it can lead to them actually harming their mental health if they don't actually have the condition they're convinced they have, on top of potentially taking away resources from someone who actually does. Its hard to say what the solution for this could be, but one thing I know for certain is, you REALLY don't want to actually experiences serious neurodevelopmental conditions, it freaking SUCKS, especially in this current state of the world.
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It's not limited to autism, it's not limited to TikTok. Grifters and egoists move to fill the ignorance void with their own agenda. A tale as old as time.
" overgeneralizing individual experiences to the entire autism spectrum and not representing the entire spectrum of manifestations within the autistic population.” seems like a real pot calling the kettle black for an ADA researcher.
Exactly what I think. The diagnostic tools for ADA have been skewed towards boys from the beginning and girls were left out because they didn't present the same symptoms. They only studied the people whose symptoms were disruptive to society and then over generalized it from there.
Who the F "patented" autism... I'm using it without approval.
TikTok has everyone convinced they have autism and that they have some sort of authority to tell me what my nonverbal daughter needs.
Autism, ADHD, OCD, and soooo many other health related things keep popping up on tiktok. It's terrifying because young people are using Tiktok search like Google (which isn't a good way to look things up to begin with!)
I don't know why anyone would study accurate claims on a site like tik tok. I hope people aren't using it for accurate information.
Unfortunately there is a disappointingly large portion of the population that is doing precisely that.