A disturbing number of TikTok videos about autism include claims that are “patently false,” study finds
A disturbing number of TikTok videos about autism include claims that are “patently false,” study finds
A recent study published in the Journal of Autism and Developmental Disorders found that a significant majority (73%) of informational videos on TikTok tagged with "#Autism" contain inaccurate or overgeneralized information about autism. Despite the prevalence of misinformation, these videos have am...
A disturbing number of TikTok videos about autism include claims that are “patently false,” study finds::A recent study published in the Journal of Autism and Developmental Disorders found that a significant majority (73%) of informational videos on TikTok tagged with "#Autism" contain inaccurate or overgeneralized information about autism. Despite the prevalence of misinformation, these videos have amassed billions of views, highlighting the potential for widespread misconceptions about autism on the platform. ...
It disturbs me that people would consider TikTok an accurate source of....anything.
144The bar is so low. I remember my old roommates from Uni. If there was any disagreement about a thing, they’d whip out their phone, find any article that remotely supports their claim and that was it. You’re wrong. A case in point was using reg dishwashing soap in a dishwasher (I told them all not to). They couldn’t really find anything on Google so they just said it was fine.
The future looks as bright as mud.
Fact checking. Never heard of it.
48I had someone yesterday claim I was wrong about a pretty complicated scientific thing but they were vague and didn't say why I was wrong.
I have a background in that topic, so it only took a second to find a scientific study to back me up...
They immediately replied with an article that had nothing to do with what anyone was talking about, and when I told them that, they refused to explain what was relevant, called me rude, and blocked me.
Their mind was made up, and they just picked the first result off whatever they googled and assumed it backed them up.
Idiots "doing their own research" rarely works out well, they're not trying to learn anything, just win an argument they don't understand
34As someone who remembers the days before the internet, that's 1000x better than our method of just believing whoever seemed the most sure. We weren't running down to the library 10 times a day to find quality sources for information, we just didn't know things. When did that person die? Who knows. Is it safe to mix these chemicals? Try it and see.
Old wives tales and superstition were responsible for at least 60% of all decision making.
19A case in point was using reg dishwashing soap in a dishwasher (I told them all not to). They couldn’t really find anything on Google so they just said it was fine.
The good thing about that particular misapprehension is that it is very quickly self correcting.
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It's an increasingly popular first search goto for basic research for a lot of people. YouTube was like that for a long time in the same way Amazon is for product searches.
Not a great trend.
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16Find me a better source of information on defense economics than Perun. He is considered the pinnacle unless you want to wade through multi-hundred long pages of heavily redacted DoD reports yourself.
The fact is, long-form YouTube content has the ability to be incredibly informative in a way that purely short-form TikToks cannot.
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It's Sturgeon's Law.
7I feel Sturgeon's pain. Was just in an old book shop that had every genre imaginable including even cookbooks and weird old junk books about the paranormal and casting spells, trashy romance stuff, old historical records, all sorts of random crap. I asked if there were any science fiction or fantasy books. Owner of store: no we don't stock that stuff, we only stock things of literary value.
Alright buddy, geeze. Yeah no sicence fiction or fantasy of any literary value was ever written I guess.
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Great to know! Now do ADHD.
I'm getting kinda tired of being flooded with ADHD memes that are just like, "I sometimes get distracted" or, "I don't like doing chores".
62And the amount of "omg I stimmed in this public place!" That are then videos of them just being dicks and pretending that this "uncontrollable movement" knocked something over.
And the amount of patently fake DID tiktoks, ugh. I moved over to YouTube shorts mostly for other reasons but there are way less of those things going on there.
24It really detracts from how debilitating ADHD can be for someone. I didn’t get diagnosed until a year after college and started medication soon after. My god it was like night and day. Like I could finally plan tasks and structure my day instead of shutting down at something as simple as moving clothes to the dryer when there’s another thing to do in the same hour.
19This is exactly it. I get so tired of hearing people say shit like “I forgot. I’m so adhd.” or “Everyone’s a little adhd.” No, you’re/they’re not and you apparently don’t even know what it is or you wouldn’t say things like that.
9. I didn’t get diagnosed until a year after college and started medication soon after. My god it was like night and day
I always joke that diagnosis would be much easier if everyone was just given a bit of adderall and see how they respond. Bouncing off the walls? Normie. Finally finishes their taxes? ADHD.
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I understand that it can be annoying, but I personally find the adhd memes pretty funny and relatable because my fiancee has adhd. A lot of the memes about not doing chores and getting distracted can be applicable to neurotypical people, but there's also an additional layer of lived experience that accompanies those memes to be very relevant to people that have adhd or lives with someone who does
8I'm really torn on this, because on one hand the over generalization of ADHD prevented me - and is still preventing me - from taking my own diagnosis too seriously, but that same information got me to at least think about it and get a consult with a psychiatrist on it in the first place.
It helped the diagnosis but not the feelings of being an imposter post-diagnosis.
4I see shit like that on lemmy as well.
Everyone wants to be a victim nowadays
-11Shit like this, makes those of us with/without diagnosis question our own experience. We don’t want to be one of those people, and many stop taking meds that they desperately need, or never seek out professional help because we think… I don’t have adhd, I’m just telling myself that to make me feel better, but the truth is I’m a big piece of shit and that’s why I can never get anything done. And then we get depressed. And some even kill themselves.
4
Today I learned some people actually think tiktok is the place for accurate medical information
36Wait a minute, you mean to tell me that people on TikTok will lie to everyone for views? /s
32You're telling me all those self diagnosed individuals are spreading misinformation? How shocking...
28The mental health misinformation (or more charitably, widespread misunderstanding) on TikTok is fucking wild. Especially in regard to ADHD, autism, and couples therapy
27This is probably what you can expect when the subject matter is as fraught as anything-mental-health can be, and when what passes for clinical experts willing and able to share information on it are so rare as to be unicorns, plus many of them are working from outdated DSM criteria anyhow.
I was clinically diagnosed during the pandemic, then turned unpacking my own experience of autism into a new special interest (lol of course I would do that). I specifically follow quite a few accounts on tiktok belonging to health care practitioners and researchers, and I regard what they have to say in that light, while I also follow lots of 'hey-I-self-diagnosed-now-let's-talk-about-it' accounts and consider what they have to say in that light.
I'm left with the impression that the researchers and practitioners are in an exciting, evolving field in which the subject matter is less-well-known than we might all like, and that the lay autistic folk sharing their experiences are doing it because frankly, the experts weren't filling that need and what do high-masking/hyperverbal autistic folk do when we know a thing or two? We infodump, that's what we do. (like this. you're reading it now. sorry, not-sorry)
Are we always right? Heavens, no.
But, is the bar low to begin with? Oh, yes. Yes, it is. For example, while these tiktokers are sharing what they think (maybe it's wrong, or DSM-inaccurate, etc.) there are also charlatans out there waving autism around like it's a boogeyman your children get if they receive vaccinations, when there's no evidence to support claims like that.
26Wait so all of my favorite self diagnosed autism spectrum content creators might not know what they're talking about 🫨🫨🫨
19"In a surprise finding, experts conclude TikTok is not a reliable source for factual information."
17What are you gonna tell me next, that 4chan isn't the best place to go for relationship advice?
14Still better relationship advice than Tiktok
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Inaccuracy was measured against the Autism diagnosis in the DSM and standard approved treatments. These are always going to be out of date because you're not allowed to run tests on humans. Something about ethics. So the DSM and psych industry are always playing catch-up. Meanwhile, you have a large group of people with lived experience sharing that experience. Surely that counts for something?
"Videos produced by health care practitioners were more likely to be *accurate * [emphasis mine] compared to those by autistic creators and ‘other’ creators"
Yes, of course the actual autistic people would know less about how to address their daily issues than doctors /s
Still, anyone who created a tiktok on how to 'cure' autism can get fucked. That part I can agree with.
11Yes, of course the actual autistic people would know less about how to address their daily issues than doctors /s
They would be familiar with their own personal experience, yes. But things like autism vary greatly. Doctors will understand the condition more generally.
17Meanwhile, you have a large group of people with lived experience sharing that experience. Surely that counts for something?
Not necessarily.
My kid has been diagnosed with autism and ADHD, and going through the diagnosis process, we realised that I fit a lot of the symptoms. Speaking to friends with various disorders and mental health issues, as well as reading up on them online, we found out that autism and ADHD have overlaps in behaviour. They also overlap with anxiety, OCD, bipolar disorder, and a few others.
The bouncing knee seems to be recognised as a stim for autism, hyperactivity for ADHD, and a nervous behaviour for anxiety. A group of people could convince someone that it's a sign of whichever diagnosis they personally have, while not knowing about the others, all while not realising that the person asking is just suffering from caffeine withdrawal.
Obviously this is an oversimplification, but hopefully it helps to point out that all groups have their own blind spots, and we all tend to colour things with our own perspective.
10Yes, of course the actual autistic people would know less about how to address their daily issues than doctors /s
Its been shown time and time again though that the people who are gaining attention/views/money on tiktok and whatnot... are not exactly likely to be telling the truth.
People figure out very fast whatever magic flavorful words they need to say every month to farm the clicks and get those likes and shares.
I'd expect the majority of people you see claiming they are autistic on tiktok and proceeding to start giving medical advice about it, are likely just lying for money.
It becomes even more obvious when you look at their history and see that what they focus on shifts every few months in terms of content they push.
9Best bet is to seek a diagnosis from a qualified professional.
I am a layperson so wtf do I know but my layperson impression: DSM is the source obviously but there is a big gap between the words in the DSM and the details of how symptoms actually manifest for, in my case, ADHD. Also it is a diagnosis manual but the etiology of ADHD hasn't been settled so there's not like a brain scan or DNA analysis to test for it.
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BREAKING NEWS: PEOPLE SAY WRONG THINGS ON THE INTERNET!
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5No surprise
3Tiktok is still probably a better source of information than most British doctors. Official diagnosis by an expert is obviously the gold standard but I would imagine self diagnosis remains the starting point for the majority of people.
3That is a completely ridiculous statement.
4On the other hand, most people who ended up getting a diagnosis for some form of neurodivergence had suspicions themselves before specifically asking to get tested. In my experience, medical professionals really are not looking out for stuff as much as they should.
I myself ended up getting a diagnosis as an adult after my own insistence at getting tested, despite how obvious it was my whole life.
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