"self diagnosis" and social media algorithms

[candycane222]

www.theguardian.com/commentisfree/2021/jun/04/tiktok-accidentally-detected-my-adhd-for-23-years-everyone-missed-the-warning-signs?CMP=Share_AndroidApp_Other

I thought this was really interesting, about teen MH in general but wondered how the algorithms might suggest, then confirm, transness to kids with gender issues in particular.

I am speaking as someone with very little knowledge of any of these issues, but just wondering if a combination of tiktok algorithms and self id might be quite a potent and possibly dangerous mix.

Given that we know algorithms can polarise other views (eg the way Cummings exploited Facebook to power Brexit) I did find this troubling. And it doesn't have to be deliberate like cummings's actions, it's an inevitable consequence of tech that seeks, then drives, our preferences.

Interested to know what others think

The article was better & more balanced than I expected it to be. This bit was interesting:
TikTok’s platform does have some safeguards in place. Searches for “self harm” or “proana”, a term used by pro-eating disorder communities, automatically direct users to pages with a number for Lifeline or the Butterfly Foundation, and mental health content that breaches community guidelines is removed. But, at least from my usage of the app, these platform interventions seem far from universal.

I've seen TikTok material from one particular surgeon who is like something out of a horror film - she seems never to have heard of the Hypocratic Oath. But I suppose even if TikTok were geared toward caution and care, it is going to reflect the standard that the medical profession has on that matter, which is currently egregious.

I think I know which surgeon you’re talking about. Wasn’t she lamenting the fact that she only had four patients that week for a bilateral mastectomy on otherwise healthy breast tissue under the guise of “top surgery”? Absolutely horrific abuse.

I see what you mean about the medical ethics Mermoose. That's horrifying!

It did make me wonder though how much the polarisation and entrenching of positions, as well as the "that's me" moments that lots of people describe including trans people (I know being trans isn't a diagnosis as such) and the subsequent sense of community ... where you can snuggle down into your echo chamber.

(As far as I know Mumsnet doesn't use an algorithm to serve me particular discussions - if it does it must be a dud one!!) - but we still have that echo-chambery community here to an extent. Can recognise it even though I am kind of in support of it too.

I realise these are not new insights, but I did find the article interesting on highlighting the benefits and the potential risks so clearly.

Meant to write how much the algorithms drive the polarisation - surely they must, and they can't not and yet still keep people coming back for more, which is the business model after all....

Yes, this has been discussed here and I believe there was some research done on how social media impacted on yp's seeking of GD diagnosis or help (but I can't remember where, sorry. Possibly transgender trend?)

I can't find the report but there was an in-depth study of how a YouTube algorithm created around 8/10 years ago (?) which showed more of the same videos to you had a direct impact on the growth of flat earthers. I read / heard about it in a bbc documentary about the research.

The algorithm has since been changed to offer a balance of videos in a range of contexts but I feel YouTube users can circumvent that themselves with searches.

To me it wasn't a big leap to apply the idea to ROGD and the graphs of referrals from the Tavi seem to tie up timeline wise.

There was also an explosion on a range of other media platforms eg tumblr etc.

By the sounds of it tiktok will be creating a similar echo chamber? I don't know it or go on it. Instagram may do the same. Pinterest can offer visually similar content to what you've looked at too.

I'm sorry fridge cross post.

Adhd and especially ADD is very under diagnosed. (ADD causes less disruption in class and children slide under the radar.)

I think this Vox article illuminates a lot of the problems around ADHD conversations on TikTok. Whilst I absolutely wish my childhood psychiatrist had done a more thorough job and got me to my ADHD diagnosis a bit sooner than my 30s I’m also quite glad I’m not a teenager in 2021 because I don’t see current approaches to identity as super healthy for young minds www.vox.com/the-goods/2021/2/9/22272955/mental-health-tiktok-adhd-anxiety

Oooh thanks for that Vox link ATieLikeRichardGere ...really interesting. I loved the "high school cafeteria in a teen comedy" analogy - that's exactly it. Teens have to belong: I remember it so clearly myself, but then (70s) it wasn't much more complicated than what band you liked best.

This really struck me too:

“Whereas a therapist might question the usefulness of identifying oneself as permanently aligned with whatever struggle one is experiencing, engagement-driven platforms help frame conditions as points of identity, badges of honor.”

Off to read the Isobel Munson article being quoted there :)

"There’s a fine line between destigmatizing and incentivizing, especially on social media platforms with built-in feedback mechanisms."

Great read.

Sorry but I read this article a few days ago and thought wtf?

What she is saying is that TikTok recognised that she liked / wanted to watch videos on ADHD so kept showing her more. This seems more like self forfillment that a "diagnosis".

Where did the writer of this article first learn about ADHD and decided that this must be her issue.

And now its like she can be part of a trend, so many women underdiagnosed.

This is the same as young people endlessly watching videos on trans, and effectively are learning to say the things that confirm they are trans.

And then this!

"So I booked a doctor’s appointment, and three referrals, four months and about $700 later my new psychiatrist looked straight into the webcam and said: “Yes, I think you clearly have ADHD and you’ve had it for your whole life.” I cried from joy when he said it."

Not sure how much $700 is but if you can sit at a web cam and claim that amount from people you only see briefly on screen, just think how much money you could make in a day.

I read this with a very large pinch of salt.

Oh and by the way, similar claims have been made about facebook, etc. re sefl diagnonsing ADHD. So TikTok is just aping earlier platforms.

Sounds the same as young women being detatched from the female body at puberty, thinking it must be because I am trans, it might be that this young woman isn't very good and what society tells her she should be good at.

I accept she may well be. But for many it is far more serious than a frivious article in the Guardian.

stumbled you might enjoy the Vox article that aTieLikeRichardGere linked.

I think it's interesting how people find a diagnosis so helpful in this kind of situation. Obviously a large part of it may be accessing treatment, but I think a large part is also finding community, and relief from a feeling that your difficulties are a fundamental moral weakness.

Another really good related article is this one about Tik Tok influencers:
harpers.org/archive/2021/06/tiktok-house-collab-house-the-anxiety-of-influencers/

It's long, but I thought the section on how these young people use and think about their social media platforms, and their lack of critical thinking skills, was very interesting. Similarly, the comments on their fractured attention and the continual faux-comraderie and sound-byte conversations.

That Harper’s article....I really feel the author’s despair at the end!

Sorry, this is becoming a bit of a reading list, but I’ve got a couple more articles that I thought were interesting. About the adhd trend specifically:

mashable.com/article/adhd-tiktok-twitter/?europe=true

And about mental health issues becoming trendy and glamorised:

www.google.co.uk/amp/s/mashable.com/article/anxiety-depression-social-media-sad-online.amp

candycane222 - I cant have made my point very well. I am questioning the diagnosis. She eventually found, through paying, someone to confirm her self diagnosis, which she had fixed on long before tiktok easily picked up her obsession and fed her more.

I am trying to suggest she may not be very good at what women in particularly are told they should be. They doesn't mean she has a disorder. Her "symptons", would make for instance, the majority of artists be candidates.

Who says social situations are "normal". Why do you think so much alcohol features in so called social situations.

Like the trans issue, it seems to be about young people accepting a very limited concept of what is normal and acceptable. And that if they aren't that then it is because they have a disorder.

I think what she wrote was facile and if not dangerous, stupid. And cant imagine why the Guardian published it. She's probably somebodies friend or relative.

I think what I finad upsetting is that it is all about this apolitical self absorbed take on the world.

It is because women took the time to take a political look at women's lives through consciousness raising, that many of the damaging mental health diagnosis that women were labelled with, or worth incarcerated and lobotomised, were in fact a very genuine reation to really shitty lives, and sexism were got rid of.

Now we have a whole generation of passive followers of a view of life that has nothing to do with anything other than people wanting to sell you things, rather than thinking actuallly this perceptionof the world is what is the disorder.

So she is a chaotic, disorganised person, who doesn't enjoy what passes for socialising. It might suggest certain jobs she should try and do, but otherwise, what is the problem.

Thanks for the links. I saw many of these yesterday when I googled. That this is another "trend" and is of course now filling a void in the more "grown up" media platforms and papers who can all write about how concerning it is!

Interesting to note that today in the i paper there is a double page spread about under diagnosis of women is ADHD. (no social media platforms involved!) inews.co.uk/news/uk/adhd-women-long-been-under-diagnosed-sufferers-years-struggle-1020541

I would be interested to know, but dont know how this could be done, is whether there is an increase in ADHD, not just because it is now recognised, but whether in fact it is 20th/21st century first world problem. And if the latter, what is causing it.

And of course one of the problems for women is that more likely than not a man with ADHD probably has a mother or wife helping them cope, whereas a woman is more likely to have to fend for herself.

(I couldn't help thinking when reading the "symptoms" of the Guardian writer, that is sounded like what was said affectionately, even if at the time it had been a bit aggravating, about Shirley Williams always being late and untidy. Lucky no one said to her, oh you must have a disorder as you dont fit the normal profile of a politician!)

@stumbledin

I kind of agree with a lot of what you’re saying, despite the fact that I’m also a person diagnosed with ADHD in a not dissimilar manner to the person in the Guardian article (Google>Reddit>Book>Psychiatrist).

So, one thing to discuss is, what is a disorder anyway? It IS a context dependent thing. In a society without writing, no one has dyslexia. Does that mean dyslexia doesn’t exist? Should we abolish writing systems where they exist because they make some people dyslexic? Perhaps ADHD is only a struggle because of the type of society we live in, and it’s a particular problem for women because of the extreme expectations placed on them. (There are some theories that ADHD could have been an adaptive trait in hunter gatherer societies etc......). Well, one partial solution seems to be that we diagnose the people who struggle in this particular way, so that we can give those people help, and it so happens that ADHD is quite easy to help with. That doesn’t need to prevent political action that could improve things for women though. I’m not convinced the two things have to be mutually exclusive.

In terms of the validity of the disorder, maybe it’s also worth noting that of all the in your head conditions I have been diagnosed with, ADHD was the only one where I had to clear a bar of getting someone else to report on my symptoms.

In the ADHD community, there is also a tension around whether it’s even a disorder not because it might not exist but because some people like to characterise it as a superpower. And for some people in some circumstances, there does seem to be some power conferred by the condition, like creativity. But for others, that characterisation does a huge disservice to what is mostly a big struggle, because in the world as it is, most people aren’t really granted the opportunities for ADHD to ever become a superpower.

But I do agree that stuff like this has taken on a bit of an apolitical self absorbed aspect which I really don’t like. I also confess to being suspicious that some people might be faking or misunderstanding things and I’m concerned about that. This is a selfish perspective and it’s because I feel like it diminishes my own I think fairly serious challenges. ADHD isn’t a mental health condition, but when it comes to mental health I’ve noticed that “mental health issues” now seems to be synonymous with “difficult events I have gone through”. I think, again, that’s not quite right. Mental health problems might be associated with bad events, but often they are not. Bad events mostly do not cause mental health problems. My own mental health condition (not ADHD) has very little to do with any kind of emotional stuff. I don’t “need to talk” about it unless it’s in an extremely structured clinical setting. I don’t usually mention my conditions in real life anymore than you would mention asthma or diabetes. I’ve never told an employer.

Personally I want to see the remedicalisation of some things and more emphasis on the real genetic and biological underpinnings of mental health conditions and of neurodivergence. I want the gates kept my the medical profession and a bit less openness, confessionals and sharing of feelings. For that to be fair, though, we also need a lot more access to the medical profession and the medical profession needs to live up to our expectations (eg by not being sexist). I’m currently on an 18 month waiting list and I can sort of see why someone might go ahead and self diagnose in those circumstances. With enough access to psychiatry, and with psychiatry backed by high quality research, it wouldn’t matter if people wrongly self diagnose on TikTok because they would still end up in the right place. And there wouldn’t be any incentives to hand out diagnoses to a paying customer, because people wouldn’t need to pay to get around insane waiting lists.

@ATieLikeRichardGere - I think I see and share what you are saying. It is as though a real condition has been hijacked by some to say look at me I have to have allowances made for me because I am x or y, but of course so very special so can say what I like.

This has also been an issue with autism.

Quite honestly my reaction was more about the whole TikTok thing as I know that the issue of women being underdiagnosed has been in the news for more than a few years. Why would the Guardian focus on TikTok? Still trying to be young and trendy I suppose.

It might be interesting to have a thread on women with ADHD as I think not many seeing the title of this thread would have thought this is what it is about.

I have just acquainted myself with the fakedisordercringe subreddit which would suggest there is also a particular trend for Dissociative Identity Disorder on TikTok as well. I find that extremely interesting.