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.
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.
It’s Sturgeon’s Law.
You’re telling me all those self diagnosed individuals are spreading misinformation? How shocking…
This 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experts willing and able to share information on it are so rare as to be unicorns, plus many of them are working from outdated DSM criteria anyhow.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.
Wait a minute, you mean to tell me that people on TikTok will lie to everyone for views? /s
Wait so all of my favorite self diagnosed autism spectrum content creators might not know what they’re talking about 🫨🫨🫨
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.
Meanwhile, 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.
Yes, 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.
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TikTok has some nice stuff but also people making stuff up for attention and clout.
Tiktok 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.
That is a completely ridiculous statement.
