Do self-diagnosers ruin it for the rest of us?

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30 Mar 2010, 9:25 am

Where are these multitudes of mischievous, misguided, misdiagnosing miscreants, anyway? Or am I just not frequenting the right parts of the interweb? :?:

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30 Mar 2010, 9:42 am

Shebakoby wrote:

CockneyRebel wrote:

I don't think so. Everybody has a right to be here.

I don't mean 'here'. I mean, in general, in life. As in, are the self-diagnosers putting forth a false idea to NTs about what people who say they have AS are all about.

I'm qualified to diagnose it in others...why wouldn't I be in myself?

The point being, it depends on the diagnoser

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30 Mar 2010, 9:50 am

gramirez wrote:

I think a lot of people think less of AS as a condition because of all the self-diagnoses out there. The more people out there that are self-diagnosing themselves, the more that NT's see it as making an excuse for being anti-social, weird, etc...

So yes, I do think self-diagnosers ruin it for the rest of us. It's not their fault, though - it's how others (NT's) look at AS.

Let me play devil's advocate. There are people who self-diagnose migraines, some of whom really have International Headache Society criteria-meeting migraine and some of whom don't (they can have anything from muscle contraction headache to a brain tumor to an aneurysm to drug seeking behavior or malingering to avoid work to a sinus infection)...but you don't see the groups interested in migraine worrying about self-diagnosers causing them problems. I should add that there is no test for migraine per se, but rather tests to rule out other conditions.

IMO, there is too much public ignorance about neurological conditions with behavioral manifestations as opposed to those with painful, muscular, or other manifestations. When someone has cerebral palsy, you don't see people worrying about misdiagnoses "ruining it" for them because CP is no longer associated with stigma. To me, it's healthier to remove the stigma than it is to run around worrying about what ppl call themselves. As long as there is info out there, in books, the Internet and the media, you're going to have ppl of varying levels of qualification self-diagnosing. They aren't the issue. The attitude that we as Aspies are obnoxious and self-absorbed/selfish, and that we can change that if we really try...THAT is the issue.

Just my 2 cents,
~Kate

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30 Mar 2010, 10:01 am

Ambivalence wrote:

Where are these multitudes of mischievous, misguided, misdiagnosing miscreants, anyway? Or am I just not frequenting the right parts of the interweb? :?:

That's a good question. Maybe I'm just not sliding through the right series of tubes, but the only place I've heard of such an attitude toward AS (for that matter, one of the few places one hears of AS at all, in my circles) is right here, on WP. Maybe there's, like, a Facebook group or something - I wouldn't know, the only people I "friend" on Facebook are relatives, and mostly that's so I can help them out in those odd little games.

I don't use AS as an "excuse", but rather as an explanation - here is why certain aspects of interpersonal relationships give me trouble, here is why I have such a great degree of difficulty getting past a job interview. My family would be more than willing to let me use it as an excuse to not even try, but I personally would not find this acceptable.

On the other hand, one can't just "learn" how to interact on the levels expected by NTs. How can one avoid giving offense in all cases, for instance, when the words that will give offense vary from person to person, sometimes from sentence to sentence? If, as an example, one compliments a woman on her dress, this may be taken as a compliment, as probably intended; it may be taken as "harassment", if she is exceptionally sensitive to such issues (and how is one to tell?); if she's been having a bad day, she may even take it as some sort of backhanded insult to her regular dress sense. How is one supposed to navigate such a shoal-laden conversational bay? I gather there is some method used by the vast majority of people, since offense generated in such encounters is commonly spoken of as "justified", but for the life of me I can't figure out what it is!

And let's not even discuss etiquette books! I'd probably get farther reading an instruction manual for something I've never used, translated from the original Japanese with the help of BabelFish, and printed in blurry ink on tissue paper, than trying to understand the people written up in the Miss Manners books, and others of that ilk.

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30 Mar 2010, 10:13 am

I was self-diagnosed for about a year before getting diagnosed (and very expensive it was). My son's diagnosis with PDD-NOS gave me the clue. I'm sure I would have been diagnosed as a child now but in the 70s Asperger's hadn't been heard of in my village. I was just the quiet, weird one.

I did have to be careful who I told. My mother assumed I was suffering from self-pity and told me to grow up, so I was glad to have the diagnosis in my hand when I told her.

My psychologist did tell me that I probably wouldn't have got a positive diagnosis in the US because as well as all the standard points you also need to demonstrate a clear difficulty in coping with everyday life. Is this true? Anyway it was a huge relief to be diagnosed and I don't think I've ever used it as a justification for bad behaviour but sometimes it's very helpful to include it in an apology (ie nothing personal)

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Whatsherhame
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30 Mar 2010, 10:19 am

Quote:

Where are these multitudes of mischievous, misguided, misdiagnosing miscreants, anyway? Or am I just not frequenting the right parts of the interweb?

I think what's going on here is someone did something that someone else thought was really weird. They asked, "Why are you doing that?" and the person answered "I think I might be autistic". They said, "Oh you're just faking it" or "You're just trying to get attention". They ask, "If you're really autistic, why don't you have a diagnoses?" and the person answers with "I live in the united states and I can't afford it" or "My family would disown me if they found out about it" and the person replies with, "How convenient for you."

Basically, somebody doubts someone as an autistic person because they don't adhere themselves to the stereotypes or hate themselves because of it. They find out the person hasn't been diagnosed yet for any one of many perfectly good reasons. They say, "See! You're a liar!". They don't realize that you can be autistic without being diagnosed autistic. That is, you can talk late, insist on sameness, not look people in the eye, have an obsession with dinosaurs or something, and flap your hands and still not be diagnosed 'autistic'. They don't realize that a diagnoses doesn't produce these things, it happens because of these things.

Part of it is because this sort of miscommunication can only happen on the internet where you can't see the person rocking and avoiding your gaze. Another part is plain old ignorance. Someone doesn't meet the autism criteria to an ignorant person:
1) A guy in a diaper and a helmet rocking in a corner of some mental institution somwhere with drool running down his face. 2) Rainman. 3) Some spoiled young geek.

And all of these things are some sort of 'other'. You're one of those people and you're on a internet forum, and they prefer to think of those 'ret*ds' as far off people who will never be allowed to challenge them and their 'superior' intellect.
So if you're none of these things to them, you have to be faking it, because if you're not then they might have to face the fact that they're ignorant, there might be something that they don't know about/can't figure out.

If you are a helmeted institution guy, or something close to rainman, or a spoiled geek, and you've got proof of these things, it still won't matter because the ultimate defense against admitting you're wrong is to change the entire basis of your argument. "Oh, you live in an institution and they've got to put a helmet on you? Well, you're still faking because if that was true they wouldn't give a ret*d like you computer access!! !"

So, there are no 'multitudes' of self diagnosing aspies waiting to ruin it for us 'real' ones. There are only multitudes of ignorant people and multitudes of autistics who don't fit the stereotypes. Really, I think the whole self diagnosing thing should be a logical fallacy(If it isn't already). I've seen hundreds of people talking about these 'multitudes' of faking aspies who are trying to ruin their bigoted fun, and I've known just one person who actually was faking it, I knew her personally and she's such a good liar and mimic you would have never known unless she told you. People underestimate a liar's intelligence, most of them have bigger fish to fry. :roll:

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30 Mar 2010, 10:26 am

skybluepink wrote:

I'm sure I would have been diagnosed as a child now but in the 70s Asperger's hadn't been heard of in my village.

I'd just like to step up here, as it seems I must in almost every thread regarding self-diagnosis, and provide a moment of historical perspective.

In the '70s, no village had heard of AS. Lorna Wing only started to uncover Dr. Asperger's research in 1978; it had been buried first by the fact that he did his research in Austria in the 1930s (which made some automatically dismiss it as "Nazi science"), then by the popularity of that Skinnerian behaviorist nonsense, as if humans were no more complex than pigeons. Bettelheim's "refrigerator mother" hypothesis, which effectively froze autism research in its tracks for over a decade, certainly didn't help matters any.

Wing's PhD research on the condition was not published until the 1980s; the condition was not recognized in the ICD-10 until 1991, with the DSM-IV following suit in 1994. Prior to the 1990s, there was no Asperger's diagnosis to receive; it would be like trying to get a diagnosis of Dissociative Identity Disorder in the 1880s. (That is, the disorder most certainly existed, but no one in the fledgling psychiatric society had the first clue what it was - if diagnosed at all, it would probably either be dismissed as a schizophrenic fantasy, or taken as a sign of demonic possession and treated with holy water and exorcism rituals).

AS, as a diagnosis, has only been with us here in the US for 16 years; anyone who reached adulthood before that is going to either go undiagnosed, or have a hard time getting the diagnosis because of the prevailing concept that it's a disorder of childhood. Keep in mind as well that just because the DSM-IV was published in 1994; does not mean that it was universally and instantly adopted by the entire psychiatric community. Psychologists are people too, after all, and are no more eager to change than most.

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30 Mar 2010, 10:27 am

It depends on whether they're cheating or not. I see nothing wrong with self-diagnosis as such, as long as it's been done sincerely and diligently. Nor can I say that my diagnostician was particularly skeptical in my case, so I guess it would be possible to be a diagnosed cheat, though the stakes would be higher for them because they'd not find it so easy to deny their supposed condition once the label was in their medical notes.

I keep hearing about people who pretend to have AS but I've never met one or read anything by one, as far as I know. I'd have thought that ignorance of AS was a bigger problem.

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30 Mar 2010, 11:08 am

anbuend wrote:

Self-identification is fine with me, and knowing so many self-identified people I hate watching people treat them like crap and making them nervous about saying they're autistic. Really hate that.

And as for people using it as an excuse, I think that line is more often than not used as an excuse to behave in extremely nasty ways to autistic people. And I think the rumor that there were all these self-diagnosed people out there using autism as an excuse was made up by nonautistic people who didn't want to be held responsible for being nasty to us. Then some autistic people believed the rumor and started doing some really odious identity policing.

I went into more detail in this post.

I have met people who used it as an excuse but it's a teeny tiny number of people and you have to know someone extremely well before you can say that. But their existence does not make this stereotype okay. Oh and the worst two I ever met were professionally diagnosed in early childhood.

As for the thing someone on this thread said about how all you need to know is what you're doing wrong and then it's easy... on what planet?

I mean yes I get that there are autistic people out there whose only reason for doing something wrong is they didn't know. I know that in theory, I've known people like that, I know they exist.

But it's not true of everyone. And I find it really offensive when people generalize like that.

So hygiene is easy? I have never in my life been capable of cleaning myself properly, and even the crappy job that I could do? I couldn't just get in the shower because I felt like it, I needed someone to do anything from verbally prompt me to physically lead me there.

I mean, what's hard there? Everything.

The ability to go where you want to go.

The ability to easily cross the sort of threshold lines that a shower has.

The ability to remember the instructions on how to bathe.

The ability to sequence the steps.

The ability to not get confused by the physical sensations of putting soap on etc.

The ability to do everything while juggling soap and trying to stand upright in a place where there us loud water pelting you all over.

And there are similarly difficult steps for every other kind of getting clean.

So if you can do that? Wonderful, good for you, whatever. But don't assume everyone else finds all that easy or possible. At my best I couldn't shower unless someone helped me start off and then I'd stay in there fiddling with the soap and water for awhile before coming out. That means when I went to college I can count the number of showers on one hand and someone else prompted me on every single one of them. I didn't like the way I smelled either but good grief just knowing isn't enough.

Remember that for many autistic people there are:

Problems going from thought to action.

Trouble with deliberate recall or with recalling knowledge at the right time. M

Trouble with sensory aversions.

Trouble with overload causing skills to vanish.

Trouble with understanding words, or using words.

Trouble understanding aspects of our surroundings.

Trouble applying knowledge.

Involuntary sounds and movements.

Trouble finding our bodies at all.

And much, much more. For most people autism is a whole lot more than just not knowing things. And to hear people call it an "excuse" when people can't just go "oh now I know so everything is better forevermore", just, grr.

I agree. In my experience, the belief that AS diagnosees are using their condition as an excuse for self-absorbed behaviour is almost invariably harboured by NTs who know very little about AS. I've only once heard that opinion from an actual aspie (at least in real life). It's true that aspies can learn from their social errors, but often the appropriate guidance just isn't there.

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30 Mar 2010, 11:14 am

I self-diagnosed years before AS became well known, by going through lots of references books, checking various diagnoses against my symptoms, until I found a condition which satisfied my psychological make-up. It was the only thing that would explain the way I was / am.

In my youth, having a psychological disorder was just not considered, and I'd have loved to have seen you explaining to my father that you had AS. I expect his reaction would have been much less than favourable. Therefore, there was no possibility of getting a diagnosis of a "mental illness" (society's view, not mine), let alone one which was barely known even in the medical community, if at all.

Shebakoby, I would also challenge you to go and see my GP, who told me that adults of my mature years couldn't have possibly reached my age without being diagnosed, and that therefore there is no way I could be on the spectrum.

Having survived for this long, I see no point in trying to register with another GP or go private, to confirm what I already know. It will make sod all difference to my life, beyond giving me the satisfaction of an official confirmation.

True there are far too many undiagnosed people IRL who bandy AS about as an excuse or even some sort of medal of honour.

Even now, I can assure you that in my family, trying to use any "mental condition" as an excuse would at best be laughed at. I therefore keep my assessment to myself or here, where I can remain anonymous.

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30 Mar 2010, 11:41 am

Whatsherhame wrote:

Sounds to me like the above conversation was with judgmental people who think too highly of their own opinions. Who are they to say "Oh you're just faking it?" Can they live inside your head? Have they mastered some sort of Vulcan mind reading skill?
I have heard of people who make a joke out of being autistic when they are not autistic at all. They were probably having an autistic-like moment, or were lying about it, I don't know. Then people assume that those who are borderline autistic are doing the same thing. Pretending, joking, or just playing games.

Personally, once I detect someone is playing a game like that with me, I shut them off. I just don't have the mental energy to parry with them further... sigh...

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30 Mar 2010, 12:19 pm

Tetraquartz wrote:

People with official diagnoses aren't always necessarily properly diagnosed either.

Did you mean people who aren't sincere when they say they are autistic? I noticed some parents of autistic children got quite hostile with me when I told them, at a meeting for parents of special needs kids, that I was autistic. They don't seem to like the idea that adults are autistic, I don't understand the hostility...

It is fear they are externalizing as hostility. They see that adults are also autistic and it shatters their belief that their beloved child will not be "cured" or grow out of it. It is quite poignant if you think about it.

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30 Mar 2010, 12:34 pm

alana wrote:

people all over the internet is such a mind-boggling concept it throws the rest of the argument off for me.

people(who?)... all over (how?)... the internet (where?)...

I never knew about this til I came on this site, where there is great moaning and gnashing of teeth sometimes about this.

nobody knows what aspergers is. "crazy" and "ret*d" seem to be the two interpretations people have.

I don't care, really, what NT's think. Or anyone, for that matter. Reductio ad absurdum. or something like that.

I found WP after a lot of intensive research and taking the tests on an autism research site (same ones as in the sticky here). I had already spent a couple weeks researching and lurking before I joined here. I was shocked to find that almost all of the female Aspergerian traits fit me and that I scored very high on those tests as an Aspie. The limited information I knew previously about Asperger's fit mostly males, and I would not have guessed (or want to guess) that I was an Aspie- no offense peoples I was ignorant! I started reading things on this forum and felt at home, so I joined. To my dismay, I have read more than once about this Asperger's "trend" and subjects like this very thread. It worries me that I will go to the doctor and be treated like some fad chasing hypochondriac.

I agree- what is "all over the internet" and all this generalization about? Is it accurate or just some folks being worry-worts and exaggerating?

Thanks everyone for your posts welcoming the self-diagnosed people. I feel I belong here with or without a diagnosis. It will take a while for me to get to the psychiatrist, and who knows when I will know for sure. I do know I am most certainly NOT NT- I think my synesthesia alone disqualifies me for NT-ism, and I have known about that for a few years.

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30 Mar 2010, 12:40 pm

I like the term Anbuend uses, self-identified. It makes sense.

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30 Mar 2010, 1:31 pm

Yes, I'm ruining it for all of you.

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30 Mar 2010, 1:35 pm

How is this for a self diagnosed whiner:

- driving everyone away by constantly talking about obsessions, even as a 16 year old who should know better (yeah, I felt that my obsession was the only thing truly real, and anyone who disliked this subject simply didn't understand...)

- not even noticing when someone is seriously upset...yeah, I do this, I seem to see lines and geometry instead of facial expressions sometimes...

- eyes spasming shut and discharging heavily due to moderate sunlight

- Having sensory overloads while driving and nearly causing serious accidents (including going completely unresponsive and freewheeling into the path of a f*****g lorry...thankfully, SOMEONE WAS WITH ME)

Want me to go on??

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