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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 “” 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. …

unodostres ,

No surprise

RandyButternubs ,

Today I learned some people actually think tiktok is the place for accurate medical information

retrieval4558 ,

The mental health misinformation (or more charitably, widespread misunderstanding) on TikTok is fucking wild. Especially in regard to ADHD, autism, and couples therapy

notannpc ,

Wait a minute, you mean to tell me that people on TikTok will lie to everyone for views? /s

BeautifulMind ,
@BeautifulMind@lemmy.world avatar

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experts willing and able to share information on it are so rare as to be unicorns, plus many of them are working from outdated DSM criteria anyhow.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.

BilboBargains ,

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.

themajesticdodo ,

That is a completely ridiculous statement.

SkyeStarfall ,

On 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.

BilboBargains ,

Not only did every teacher, doctor, court and family member fail to notice, a series of doctors denied that it existed over a period of years. I completely lost faith in our health service.

xc2215x ,

TikTok has some nice stuff but also people making stuff up for attention and clout.

nyar ,

youtu.be/x4ieMzbXiRA?si=DLpabc43eJNT_zHm

BeefDaddySupreme ,
@BeefDaddySupreme@lemmy.world avatar

You’re telling me all those self diagnosed individuals are spreading misinformation? How shocking…

foggy ,

Wait so all of my favorite self diagnosed autism spectrum content creators might not know what they’re talking about 🫨🫨🫨

surewhynotlem ,

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.

agent_flounder ,
@agent_flounder@lemmy.one avatar

Best 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.

nyar ,

youtu.be/x4ieMzbXiRA?si=DLpabc43eJNT_zHm

agent_flounder ,
@agent_flounder@lemmy.one avatar

Any chance you could summarize? It’s been a long day and I’m not sure if I want to dive in but at first glance it might be really good.

FWIW I was like 90% certain I had ADHD going into the diagnosis. The DSM was just a part.

What was really the big shocker was listening to other people who had been diagnosed describing their lived experiences and finding them so similar they either were reading my mind and spying on me or we had something very similar going on.

It also helped understanding a bit more about how limited executive function often manifests, described in a yt vid by a psychologist specializing in ADHD

Finally also considering alternative conditions that could be mistaken for ADHD.

NightAuthor ,

If you aren’t familiar with Dr Russell Barkley, you should look up his videos. He seems to be the foremost expert, but somehow I missed him for a couple of years.

agent_flounder ,
@agent_flounder@lemmy.one avatar

I concur; he is the fellow I was watching that clarified many points particularly around executive function.

atzanteol ,

Yes, 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.

nyar ,

youtu.be/x4ieMzbXiRA?si=DLpabc43eJNT_zHm

atzanteol ,

I’m not watching an hour long video…

nyar ,

Your loss

atzanteol ,

youtube.com/watch?v=zNVQfWC_evg&si=cCBzzAnsrc…

nyar ,

Unrelated but thanks.

Tippon ,

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.

pixxelkick ,

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.

schwim ,
@schwim@reddthat.com avatar

What are you gonna tell me next, that 4chan isn’t the best place to go for relationship advice?

flamingo_pinyata ,

Still better relationship advice than Tiktok

Iwasondigg ,

“In a surprise finding, experts conclude TikTok is not a reliable source for factual information.”

lily33 ,

BREAKING NEWS: PEOPLE SAY WRONG THINGS ON THE INTERNET!

RvTV95XBeo ,

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”.

Tidesphere ,

And 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.

luciferofastora ,

I knock over shit with uncontrolled movement all the time, but I’m not gonna pretend that it’s either stimming or uncontrollable. It’s just the usual “brain lost track of one sub-process of movement again” that happens with ADHD.

My stimming is usually bouncing my leg, tapping a rhythm on something or unconsciously mouthing the lyrics of some song. I’m aware particularly the latter may be disconcerting to some people, but it’s a far cry from being a dick.

Drinvictus ,

I see shit like that on lemmy as well.

Everyone wants to be a victim nowadays

NightAuthor ,

Shit 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.

rockSlayer ,

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

soren446 ,
@soren446@lemmy.world avatar

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    watson387 ,
    @watson387@sopuli.xyz avatar

    This 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.

    surewhynotlem ,

    . 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.

    soren446 ,
    @soren446@lemmy.world avatar

    deleted_by_author

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    PrincessLeiasCat ,

    I hear stories like this and I’m still searching for the one that will do this for me. I think I’m on #4 now. Fingers crossed!

    canihasaccount ,

    Adderall makes nearly everyone work-motivated. That’s why college students abuse it when studying/writing, and why the old don’t-do-meth commercials used to describe people cleaning their spotless houses.

    to55 ,

    deleted_by_author

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    soren446 ,
    @soren446@lemmy.world avatar

    deleted_by_author

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    PixelProf ,

    I’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.

    NightAuthor ,

    Dr Russell Barkley is, as far as I can tell, the world’s foremost expert on ADHD.

    He’s got lectures that I found engaging enough to watch, and shorter videos on various subjects-topics.

    Watching his stuff, it felt very validating and enlightening and helped push me past my imposter feelings.

    PixelProf ,

    Yeah, Barkley’s talks have helped a lot so far. Previous psychiatrists largely wrote off diagnoses because I was successful in work, but overlooked the challenges at home. Some trauma therapy combined with Barkley’s unique focus of adult symptoms of ADHD really opened my eyes to it.

    Still doubts, still confusion, but clearing up.

    NightAuthor ,

    Yeah I too had a bit of trouble getting diagnosed, even my new psych, who I like quite a bit, he seemed to be overly focused on work/productivity side of my issues. And when it came to meds, I had to be a bit more insistent on trying meds that would give me 24-hour coverage. Because I struggle to motivate myself to get out into social situations, to make friends. I’m never motivated to work on personal projects, things I’m truly interested in but only ever work on in fits and starts, when the stars align.

    Barkley’s talks helped me work with my psych, especially the talks about the various medications, about how ADHD affects all aspects of your life, and how important it is to find and refine a medication regimen that is optimal for you in strength and duration.

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