The Self-Diagnosis ‘Epidemic’

October 15, 2008 at 5:14 pm (Bad Science, Miscellaneous) (, , , )

It’s probably completely untrue that there is an epidemic of self-diagnosis, but in the style of the mainstream media I have used single quotation marks to absolve myself of any responsibility to accurately report the situation.

There have been some interesting discussions recently on the Bad Science forums that have touched on self-diagnosis. One thread had a comment relating to the seeming fashion for parents to label their children as having a learning disorder when in fact they were simply not performing academically as their parents hoped they would. This had apparently led the commenter to conclude that dyslexia didn’t exist. I’m no expert on dyslexia (or any other disorder), but those who are seem to be able to make a good argument that it does exist and I have absolutely no reason to doubt them. My purpose here is not to cast doubt on whether any particular condition exists or to downplay any suffering felt by people who have any condition, disorder or disease (I suppose particularly those with more serious forms). What I am interested in is looking at the phenomenon of self-diagnosis. Another comment on another thread made the point that “if the writing of Douglas Coupland is to be trusted there was a fad for folks involved in technological stuff and computing to self diagnose themselves as autistic” and this is really what I want to discuss. I’m not saying that everybody who has diagnosed themselves as x, y or z is wrong, I just want to talk about those that self-diagnose without justification really. And that it seems to be a fad.

I have known girls and women who have claimed that all men are “somewhere on the autistic spectrum” (although God only knows what they actually meant by that), I have heard people who once would have been referred to by the truly horrible word “zany” calling themselves bipolar, anyone who swears “has a touch of Tourette’s” and (to give an example of a condition that is not mental/emotional in nature) we all know someone who, in the grip of a heavy cold, has claimed to have ‘flu. The cold/flu one is possibly easiest to untangle – unless you are a nasty grey colour and feel like you are going to die, it was probably a cold.

Why is it so attractive to label ourselves? Do we think it excuses us in some way? For example, we may feel that if we claim we have mild Tourette’s we will be given more leeway in our language. Or does it simply ‘feel better’ to have a label that we can attach to ourselves? I’ve read accounts of patients being relieved to find out they had a specific condition/disease, because it was somehow less scary than having a bunch of symptoms.

As Coupland apparently said, there seem to be fads for self-diagnosis of certain conditions and this is even more interesting than the general tendency to self-diagnose. Why on earth should it be fashionable to label oneself dyslexic, autistic or bipolar? It shouldn’t be anything to be proud of (nor ashamed of), it should just be or not be. So what’s the deal folks? If you have ever claimed to be ‘a bit number dyslexic’ or ‘moderately autistic’ without any justification then I would love to hear why you think you may have fallen into self-diagnosis – I’m baffled, but interested.

18 Comments

  1. brainduck said,

    I suspect the ‘all men are autistic’ idea is a media-promoted misinterpretation of Baron-Cohen’s work on empathising / systematising in ASD, often reported as ASD being an ‘extreme male’ brain.

  2. soveda said,

    Don’t forget that everyone who is a bit fed up has “depression”

  3. jdc325 said,

    Sorry Soveda – I missed that one, clearly I wasn’t concentrating properly. Must be a touch of ADHD.

    Duck – thanks for the comment. That fits with my (slightly vague) memory of what was said and when. There is a PDF of a Baron-Cohen paper from 1999 “The extreme-male-brain theory of autism”. That’s about the right time and once filtered through the media and my sister’s brain probably became “all men are a bit autistic”.

  4. Claire said,

    Self-diagnosis of food allergy/food intolerance to explain weight gain, tiredness etc sets my teeth on edge, given that I know families dealing with the real thing, and it’s no fun. Unfortunately, there is no shortage of people who encourage these beliefs, the subject of a certain blog being one but also purveyors of nonsense like this . The particular test in that linked article gets the thumbs down from Dr Adrian Morris:

    “…A large number of allergens are tested for and patients are usually positive to a number of foods, additives and other agents. Katelaris in Australia and Steinman in South Africa both conducted studies on the ALCAT test and found no diagnostic accuracy. At present the test is marketed in the UK under the name “Nutron”. Despite claims to the contrary, no large studies have ever shown the test to be accurate despite it being available for 44 years.

    The original protagonists of the ALCAT test (which includes the Leucocytotoxic test and Nutron Test) could only site a few non-peer reviewed congress abstracts as evidence that it had worked. While the antagonists (some of the leading opinion leaders in the allergy of field including Bindslev-Jensen, Potter and Katelaris) have substantial data on record to show a poor diagnostic accuracy. The lack of medical support for these tests, is often blamed on a conspiracy by the larger Multinational Diagnostic companies to try and remove the “smaller” opposition from the market. This perception is not a true evaluation of the situation…”

    link

  5. jdc325 said,

    “Alternative” testing is an interesting branch of CAM, usually the evidence for the tests is as thin as the evidence for the remedies. Homocysteine, IgG testing… I’ve even seen stuff on teh internets about health dowsing and kinesiology being popular with certain practitioners. ALCAT seems to fit into this branch and it actually sounds like the claims are similar to those made for the IgG testing kits.

  6. The Gonzo Girl said,

    Well, I haven’t diagnosed myself with Asperger’s, but I’ve suspected it, so I went to see a specialist, and he confirmed this.
    I know people who didn’t bother with this, and I have no problem with the self-diagnosed, and I don’t look down on them as “not-really-autistic.”
    The thing is, you need to learn how your brain is different and adjust to that.
    Maybe with a job, where you don’t need to socialize much, and things like that.
    Doctors can not really do anything anyways, it’s just about learning to adapt, and the people who do that on their own shouldn’t be so quickly dismissed.

    I haven’t heard of this being a fad, though, maybe this applies to Britain only.

    Also: we don’t “suffer” from Autism, but from intolerance, prejudice and discrimination, and dismissing Autistics as phony, without knowing much about it… well, maybe you should have done a little more research,
    Douglas Coupland is not exactly a leading expert on Autism…

    Oh, and saying all men are a bit on the spectrum, that really is the most stupid gender-stereotyping!
    Baron-Cohen never said men are like this, and women are like this, these differences only showed up on the average. (And the differences are small, btw.)
    This would be like saying men are taller than women, this is also only true on average, but strangely here noone would generalize and say it’s always true.
    The individual differences among people are far bigger, than the differences between the sexes, but gender-stereotypes are so strongly presented in the media, way too many people fall for these cliches.

  7. jdc325 said,

    Sorry Gonzo Girl. ‘Self-diagnosis’ was probably the wrong term for me to use. I was trying to write about the phenomenon where people claim to have certain conditions that they genuinely don’t have. For example, someone who refers to themselves as having mild Tourette’s when they are using a label to explain away what is actually typical human behaviour – swearing.

    “I haven’t heard of this being a fad, though, maybe this applies to Britain only.” & “Douglas Coupland is not exactly a leading expert on Autism…”
    Fair points. I think there is a fad among a small minority of people to apply inappropriate labels to themselves, but this is just something I’ve noticed anecdotally and I think the same is for Douglas Coupland in the specific case of technological/computer bods and autism.

    “Oh, and saying all men are a bit on the spectrum, that really is the most stupid gender-stereotyping!”
    I completely agree – I think it is a daft misunderstanding of what Baron-Cohen actually said and too many people have fallen for this particular cliché.

    I genuinely did not mean to imply that Autistics are phony – nor that everyone on the autistic spectrum “suffers” from autism/Asperger’s to the same extent, I am aware that there are ‘high-functioning’ autistics for example – and I apologise for any offence I may have caused. I was writing about people who assume inappropriate labels rather than labelling Autistics as fakes.

  8. The Gonzo Girl said,

    I wasn’t that offended, I just wanted to point out a difference between self-recognized Aspies and the phenomenon you mentioned.
    It even has a name, but I can’t remember it.
    It’s when people say they are “depressed” instead of sad, making it hard for people with depression to be taken seriously.
    People also say “autistic” as if it were a character trait.
    You’re right, that I misunderstood what you were talking about, because of the word “self-diagnosis”.
    I think when Douglas Coupland was describing the Silicon Valley people, and their high incidences of Asperger’s, he was wrong to call it a fad, because there’s some truth in there. Asperger’s is more common in families working in engineering professions.
    Plus there’s a thin line between the “Geek Syndrome” and Asperger’s…
    darn, it’s a very complex subject!
    :D

  9. jdc325 said,

    “I wasn’t that offended, I just wanted to point out a difference between self-recognized Aspies and the phenomenon you mentioned.
    It even has a name, but I can’t remember it.”
    I like the term ‘self-recognized’ as a distinction between those who have a condition and those who casually and inaccurately refer to themselves as having a condition.
    There’s a name for the phenomenon of “self-diagnosis”? I want to know what it’s called now. Will try some random googling. What I’m thinking of is possibly analogous to Munchausen’s – but it’s a more casual – almost joking – reference to illness than is seen in factitious disorders such as Munchausen’s syndrome.

    “It’s when people say they are “depressed” instead of sad, making it hard for people with depression to be taken seriously.”
    That is exactly the kind of thing I was thinking of. I nearly referred to genuine illness being denigrated by the casual references to illness by those who make daft statements alluded to in my post.

    “I think when Douglas Coupland was describing the Silicon Valley people, and their high incidences of Asperger’s, he was wrong to call it a fad, because there’s some truth in there. Asperger’s is more common in families working in engineering professions.”
    Good point! That wasn’t something that had even occurred to me – it should have been though, because I’ve read it before in a thread on the Bad Science forums.

    Thanks for dropping by again.

  10. The Gonzo Girl said,

    It’s got nothing to do with Munchhasuen’s, it’s more a social phenomenon.
    This has actually been doing my head in, and I’ve tried finding the wiki article, where I first read about it.
    I’ll definetely let you know, when I find something about it.

    “Thanks for dropping by again.”
    It’s a pleasure!

    :)

  11. Klute said,

    Self diagnosed Aspie is most definitely a fad in the US among certain people. Mostly unattractive, marginally intelligent men with poor hygiene who cannot get a date. It has become a joke. Go onto any social networking site and there are dozens upon dozens of people proclaiming themselves Aspie, with no basis. Also it’s not a medical condition; it’s a psychiatric disorder so technically there is nothing to ‘diagnose” so again, diagnose would be the wrong word. Diagnosis requires a test and while there are tests to determine the presence of specific neurological dysfunctions there is no test to determine the presence of Asperger’s. All these faux Aspies make it difficult for people who truly have the disorder to be taken seriously. That said I still have my doubts about its existence. Especially when in order to strengthen claims of existence the community is attempting to retro-‘diagnose’ famous people (usually extremely bright and highly valued) as Aspie. Nobody’s retro-diagnosing the village idiot when there’s an equal chance they might have had the disorder as well.

  12. The Gonzo Girl said,

    Oh, please!
    You just regurgitate that lame Aspie backlash from bad comedy blogs.
    That’s the fad right now, to dismiss everyone on the spectrum as fake.
    How do you know they are faking it, if you don’t know these people in person?
    Ironically according to Tony Attwood poor hygiene, if it is the result of executive dysfunction, or sensory issues, and not getting a date, due to lack of social skills, ARE two possible (of many) diagnostic criteria for AS.
    That’s why people want to find out where these things come from, so they can learn to improve them. Nobody really enjoys being smelly wanker, believe it or not.

    “It’s a psychiatric condition, so technically there is nothing to diagnose”
    Pardon? Psychiatrists ARE doctors, who studied medicine, but Asperger’s is not a psychiatric condition like schizophrenia, but a neurological condition.
    I had various brain scans prior to my diagnosis, and doctors take their time to diagnose someone, because of the complexity of the disorder.

    You’re also missing the point about the “retro diagnosing” of people like Lewis Caroll, who very obviously was Autistic, or Nikola Tesla, who probably had OCD.
    The point of that is, that we need diversity in our gene pool, as this brings out the best in every species, if everyone were normal, average and sane, we wouldn’t have evolved to what we are today.

    On a side note, even if people fake being Aspies, they wouldn’t cause as much harm, as hostile people like you, who spread this “They’re all faking it” fad, because that’s what makes it harder for people like me, to be taken seriously.

    Oh, and do yourself a favour, get an education.

  13. names-are-just-lables-too! said,

    “smelly wanker”

    LOL <<< a real laugh out loud! not just even a small smile or one that I only heard in my mind.

    “smelly wanker” would be a good term for Klute to self diagnose themselves with!!

    And for something a bit more appropriate!…

    jdc325, I think the thing is that there are alot of people out there who like to slap a label on themselves for no real reason and they are idiots for it…Being ‘gay’, I have a label that I would more than willingly love to eradicate I’m not fucking ‘gay’ I am ME.

    Why does society slap some labels on people who most certainly don’t want them and don’t want to be separated and categorized and have it made easy for people to discriminate and hate them and then why do they [society] get all p!ssy and jealous of other labels that may actually help people to get some understanding over real issues…

    Yes there are some complete twats out there who pick and choose and play with labels, like so many people are bisexual but NOT gay – bisexual is risqué and fun – gay is just a stigma! Some people are ADD just because they feel a little energetic for the time being, yadda yadda yadda….

    But don’t let it cause you to judge everyone in the same way. Some people are intelligent enough to realise that it is quite possible they identify strongly with a set of criteria – these same people wont be the idiots doing it because it feeds their desire to be different BUT for valid reasons.

    …Generalization and pigeon holing is as bad as label grabbing in my opinion and ‘two wrongs don’t make a right’!

    The way modern society is set up is that you need to fit in with the majority in the way that your brain works and how you function, if you don’t then you are pushed to the way side for many different reasons. Then the only way society remotely gives a fuck about this is if they can understand why these people are not getting by with the way things are set up by the majority so it is society that needs the labels so they may then help. If the majority of society wasn’t set up in a way that alienates people with differences then there would be no need for labels in the first place!

  14. names-are-just-lables-too! said,

    P.S: Many people will recognize they have identified strongly with xy or z…but wont have gotten an official diagnosis yet for many reasons…

    …One could be that they haven’t reached a point in life where things got too hard to handle – maybe they have a partner, who without them, their existence in the way the world is set, would be very difficult – maybe they have parents or people helping – they are getting by now but if they didn’t have those people or their world for whatever reason gets turned ‘upside down’ then things are very different…

    Dr’s generally don’t see people who don’t like going to the Dr’s until the ‘sh!t really hits the fan’…With Aspies many adults are only just being diagnosed and there is alot of ignorance [see Klute!] still even in the medical profession which doesn’t help.

    Someone who got diagnosed is no more of xy or z now then they were before diagnosis….But they are in more of a position to talk about it and be taken seriously…because people obviously can’t tell the difference between those who like to jump on ‘bandwagons’ and those who have valid reasons to identify strongly with whatever the begrudged ‘label’ may be….

    People who just like to ‘jump on bandwagons’ do make it difficult for others…

    There is a big difference between people saying at every opportunity that they are whatever it is they think is good at the time and people who quietly knowledge these things and only talk about it when they have to or when they think it helps them or other people to understand…

    …I think the only intelligent option is, is to keep an open mind and where necessary spot the difference and not group everyone into one category.

  15. jdc325 said,

    Hello there, names-are-just-lables-too!
    “I think the thing is that there are alot of people out there who like to slap a label on themselves for no real reason and they are idiots for it”
    Yeah, I think it’s bizarre that so many people want to use these labels for no real reason and while having no understanding of what the label actually means.

    “There is a big difference between people saying at every opportunity that they are whatever it is they think is good at the time and people who quietly acknowledge these things and only talk about it when they have to or when they think it helps them or other people to understand”
    Yes, it’s partly the way that these labels can be seen as “good” or “bad” by people and used in that way that makes it seem, well, offensive.

    This: “people obviously can’t tell the difference between those who like to jump on ‘bandwagons’ and those who have valid reasons to identify strongly with whatever the begrudged ‘label’ may be” is an interesting point. I think some people with a particular condition may be undiagnosed, but self-recognised – and there may also be people who identify strongly because they recognise certain shared elements. It’s just the lazy bandwagon jumping that bothers me.

    Cheers for commenting.

  16. jdc325 said,

    Klute – I never meant to imply in my post that all people with any neurological condition, psychiatric disorder or learning disbility were faking it [as I wrote above, “my purpose here is not to cast doubt on whether any particular condition exists”]. If you doubt the existence of Asperger’s then probably the best thing to do would be to read up on it. There are numberous blogs on teh intertubes that you can check out or there’s always NAS, which has pages on autism, Asperger syndrome. You can even find the DSM diagnostic criteria on this page: here.

  17. Anton said,

    I have asperger syndrome and I was professionally diagnosed at the age of 12 after suffering a major psychological breakdown the year before. But ever since I was 3 my mother was hauling me off to psychologists and therapists trying to figure out what was wrong with me; when ironically I thought I was fairly normal until the 5th grade when I couldn’t hide from it any more. Asperger Syndrome was introduced to the DSM IV in 1994 and I got my diagnosis in 1991! I really think that most self-diagnosed aspies probably have a very mild form of it as my condition is rather severe and visually obvious to strangers. I think that those who have it substantially are more likely to be diagnosed professionally because in such cases these individuals are visibly abnormal from a very young age and their parents try to find out why.

  18. jdc325 said,

    Thank you for commenting Anton.

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