My issue with "self diagnosis".

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Sweetleaf
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28 Dec 2011, 11:43 am

Browndog wrote:

Ive got a slightly different take on this...I live in a remote part of Australia and (to my knowledge) dont know any other Aspies. I was diagnosed earlier this year, although I had suspected it was Aspergers for several years (since a type of breakdown a few years ago).
I only came onto this forum after the diagnosis and it took me a while to work out that people were calling themselves "Aspies" without a formal diagnosis.
My question is this, if I come here to attempt to connect with other "Aspies" and yet it is possible that a large percentage of people on here have incorrectly diagnosed themselves, then what is the point of the forum?
It seems that it is considered heresy to say, "well maybe there should be a separate space for those who actually are diagnosed" but Im gonna say it anyway.
I come on this forum looking for some kind of intelligent conversation from people that I can TRUST have some idea of what I am going through and mainly its just interminable "Do you think I have A/S?" and "Sometimes I scratch my left butt cheek with my right hand, is this a sign of A/S" If the forum is mainly (as it seems) dominated by the self-diagnosed then it becomes farcical and any advice /opinions I solicit here are meaningless to me.
It seemsto me as though the self-diagnosed people are hijacking the site and are absolutely outraged at any suggestion that they should get a diagnosis. Well fine, dont get one, but then why be so outraged if anyone questions your right to be on this forum?

Well then maybe you could talk to the mods about banning anyone who lacks an official diagnosis......regardless of why they don't have an official diagnoses. But wow I am glad I'm seen as hijacking the site, I just figured it was a good place to talk to people who have had some simular life experiances and how the symptoms of AS I have effect my life.......I did not realise self diagnosed people where so unwelcome here.

I guess I don't see why my self diagnoses needs questioning anymore than a professional diagnoses does, considering I actually did my research. But I guess I better go back to catagorizing myself as a freak, weirdo, creep, idiot, ret*d, loser and forget I ever looked into a condition that seems to explain a lot about my life and my childhood and made things make more sense so I had a reason why maybe people sometimes labeled me as the above things.

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Verdandi
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28 Dec 2011, 11:56 am

draelynn wrote:

Fnord wrote:

draelynn wrote:

Fnord wrote:

draelynn wrote:

Fnord - what exactly is the treatment for AS that people may possibly be doing so ineffectually?

I've seen posts for self-treatment with marijuana, oxytocin, or both. The former substance is illegal, and the latter substance can only be used under a doctor's prescription. I've even met other Aspies* who swore that these substances were effective in "treating" their condition, but they just seemed like ordinary stoners to me. (*They said they were Aspies, anyway...)

So because you met a few people like that, all people who self diagnose are like that?

You tell me. Self-diagnosis often leads to self-treatment, or else why self-diagnose in the first place?

Seriously? You can not think of a single OTHER reason people may want to self diagnose? I can give you a hint... read people replies. They offer lists of other reasons.

It's been my understanding that self-medication typically doesn't have a lot to do with self-diagnosis (although there are exceptions). Like I said, I self-medicated without knowing why it helped.

I find it peculiar though, as I have really seen very little discussion of self-medicating for an autistic self-diagnosis, and most of that has been Fnord saying that it's the reason people self-dx. I haven't seen anyone who says they self-dx so they can take stuff. Most people who want to take stuff usually go ahead and take it.

It's not much of an argument.

Sweetleaf
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28 Dec 2011, 12:02 pm

Verdandi wrote:

draelynn wrote:

Fnord wrote:

draelynn wrote:

Fnord wrote:

draelynn wrote:

Fnord - what exactly is the treatment for AS that people may possibly be doing so ineffectually?

So because you met a few people like that, all people who self diagnose are like that?

You tell me. Self-diagnosis often leads to self-treatment, or else why self-diagnose in the first place?

Seriously? You can not think of a single OTHER reason people may want to self diagnose? I can give you a hint... read people replies. They offer lists of other reasons.

Yeah it does not make a whole lot of sense to me what connection is between the two.....but then I don't know of any way to nessisarly self medicate AS, its the depression, anxiety and PTSD symptoms that really got me started on self medicating and I did not even really realise I was self medicating until I really started thinking about why I was drinking every night my first year of college......then eventually I found something safer. But yeah I don't see how a self diagnoses makes it any easier to self medicate......I guess.

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nemorosa
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28 Dec 2011, 12:33 pm

Verdandi wrote:

I find it peculiar though, as I have really seen very little discussion of self-medicating for an autistic self-diagnosis, and most of that has been Fnord saying that it's the reason people self-dx. I haven't seen anyone who says they self-dx so they can take stuff. Most people who want to take stuff usually go ahead and take it.

And that's true of people who have been professionally diagnosed as well (and I'm speaking of medical conditions in general, not just AS) so the argument about it being a risk with self-diagnosing just falls apart.

GreyGirl
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28 Dec 2011, 12:45 pm

Fern wrote:

GreyGirl, do you by any chance live in the north? I ask because I read an article that discussed increasing mean temperatures in North America being responsible for ticks being common in parts of the Northern US and into Canada where they were previously unable to survive. The article said that there was a lack of Doctors in those areas able to recognize and treat Lyme disease, because it had been previously highly uncommon.

Also, yes, bravo on the other statements!

Yup, I live up north. I sent you a PM

Fnord
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28 Dec 2011, 1:17 pm

draelynn wrote:

Fnord wrote:

draelynn wrote:

Fnord wrote:

draelynn wrote:

Fnord - what exactly is the treatment for AS that people may possibly be doing so ineffectually?

So because you met a few people like that, all people who self diagnose are like that?

You tell me. Self-diagnosis often leads to self-treatment, or else why self-diagnose in the first place?

Seriously? You can not think of a single OTHER reason people may want to self diagnose? I can give you a hint... read people replies. They offer lists of other reasons.

"Can't afford a legitimate diagnosis" or "No available diagnostician nearby" may be valid reasons for self-diagnosis. Even "Curiosity" may be considered valid in most cases. But what then? What do you do once you've convinced yourself that you have AS/ASD?

Can you present your self-diagnosis to Social Services and receive a subsistence payment? Can you tell a potential employer that you have AS/ASD and receive preferential hiring? Can you tell a current employer that you have AS/ASD and receive preferential assignments and have your work environment tailored to your needs? Can you tell a past employer (or a judge) that you had AS/ASD when they fired you and receive compensatory damage payments? Can you tell your landlord that you have AS/ASD and have your rent reduced?

Not bloody likely! These can be effective only when there is some official documentation from an appropriately trained and licensed mental-health professional. Without that official documentation, your pleas could be easily disregarded at best, or you could be prosecuted for fraud at worst.

Sure, go ahead and diagnose yourself with any disease or disorder you can imagine; just try to do something significant with that diagnosis ... something other than whine and complain about how NTs are so mean, and how Aspies can't get a break.

SyphonFilter
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28 Dec 2011, 1:18 pm

Guineapigged wrote:

OP, here.

Some of you are being incredibly over-defensive. I never once suggested that a person with official diagnosis should have any more right to post here that an undiagnosed person. I also never implied that undiagnosed people aren't autistic. In fact, I reiterated that point several times but a lot of you still chose to ignore it because you were so busy defending ... well, I don't even know what we're arguing about anymore because you've strayed so far from my original point, which wasn't the validity of "self-diagnosed" cases, but the terminology used in such cases.

Well, going off on tangents is what you get when a bunch of autistics post in each others' topics. :lol:

Sweetleaf
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28 Dec 2011, 1:32 pm

Fnord wrote:

draelynn wrote:

Fnord wrote:

draelynn wrote:

Fnord wrote:

draelynn wrote:

Fnord - what exactly is the treatment for AS that people may possibly be doing so ineffectually?

So because you met a few people like that, all people who self diagnose are like that?

You tell me. Self-diagnosis often leads to self-treatment, or else why self-diagnose in the first place?

Seriously? You can not think of a single OTHER reason people may want to self diagnose? I can give you a hint... read people replies. They offer lists of other reasons.

Well maybe they should fix the mental health system, so its not so freaking expensive and difficult to pursue a diagnoses, even the therapist I was going to could not figure out quite how I could pursue a diagnoses in my financial situation......I mean I find it sad that if actually decided to pursue an official diagnoses I would have a better chance of getting one by having such a terrible mental breakdown it lands me in a psych ward then by trying to get hooked up with a mental health professional certified to give the diagnoses.

Its not really worth the trouble, due to my self diagnoses I feel I have a better understanding of some things in my life, that's really the main thing I was after anyways and an official diagnoses is not nessisary for that.

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ArthurDent
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28 Dec 2011, 1:54 pm

Guineapigged wrote:

DISCLAIMER: I am in no way, shape or form indicating that just because a person does not have a formal diagnosis, they do not suffer from the condition. I am just questioning the use of terminology in such cases.

Diagnosis is, by definition, the conclusion a medical professional reaches following assessment of the patient. It's a piece of paper signed by a doctor; a code used in your medical notes; a formality. Therefore, the concept of "self" diagnosis is an oxymoron, unless you happen to be a qualified medical/mental health professional. Even then, it would be impossible to make a diagnosis of ASD based purely on your own imput, which is likely to be highly subjective.
I dislike use of the term "self diagnosis" because it implies validity and seems to be cropping up more often as a kind of "alternative" to legitimate diagnosis, even though they're not comparable at all.

Terms I prefer:
- "pre-diagnosis": the person acknowledges they may have an ASD and is in the process of seeking a diagnosis
- "undiagnosed/suspected": the person suspects they have an ASD but is not seeking a diagnosis
- "provisional/working diagnosis": the person has been told it is likely they have an ASD (by somebody who is qualified to make that judgement) but other conditions have not yet been ruled out

Under these conditions I would class myself as having a working diagnosis.

What are your thoughts?

I use suspected to describe myself. At one point I wanted to consider myself self diagnosed but my coincidence wouldn't allow it so I use suspected.

draelynn
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28 Dec 2011, 2:07 pm

Fnord wrote:

draelynn wrote:

Fnord wrote:

draelynn wrote:

Fnord wrote:

draelynn wrote:

Fnord - what exactly is the treatment for AS that people may possibly be doing so ineffectually?

So because you met a few people like that, all people who self diagnose are like that?

You tell me. Self-diagnosis often leads to self-treatment, or else why self-diagnose in the first place?

Seriously? You can not think of a single OTHER reason people may want to self diagnose? I can give you a hint... read people replies. They offer lists of other reasons.

Actually, in the states, if you apply for disability and cannot afford a doctor they will send you to one qualified to diagnose the condition you claim to have. Not the best option but, for some, a last resort method to get the help they need.

You do not see to have read the discussion - that there is a difference in clinical diagnosis and self diagnosis. Clinical diagnosis = legal diagnosis that you can use for all those legal requirments. Self diagnosis = self realization, a starting point, an epipheny in personal understanding, an answer to questions many people thought unanswerable about their lives. Self diagnosis is primarily done for personal reasons of discovery, for seeking support from a like minded, like experienced gropu of people.

No one suggested self diagnosis replaced clinicial diagnosis. The arguement is that self diagnosis is sufficient to seek support on a support forum like WP. The word 'diagnosis' is the hang up. If you have a better suggestion than please make it. Technically it has already been shown that 'diagnosis' is being used correctly as the word is defined in the dictionary.

People need to start the journey to a clinical diagnosis from somewhere and that somewhere is self diagnosis.

Sweetleaf
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28 Dec 2011, 2:10 pm

draelynn wrote:

Fnord wrote:

draelynn wrote:

Fnord wrote:

draelynn wrote:

Fnord wrote:

draelynn wrote:

Fnord - what exactly is the treatment for AS that people may possibly be doing so ineffectually?

So because you met a few people like that, all people who self diagnose are like that?

You tell me. Self-diagnosis often leads to self-treatment, or else why self-diagnose in the first place?

Seriously? You can not think of a single OTHER reason people may want to self diagnose? I can give you a hint... read people replies. They offer lists of other reasons.

Uhh yeah I applied for disability and during the 10 minute appointment they gave me with a supposedly qualified mental health professional I learned he was not even familier with Aspergers Syndrome and that 10 minutes is not even close to enough time for a mental health professional to determine much about you at all.

Other then that I mostly agree, other then I would argue its not for you to say wether or not self diagnosed people need to start the journey to a clinical diagnosis......but for those that desire to self diagnoses certainly is a good starting point.

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InTheDeepEnd
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28 Dec 2011, 2:25 pm

Having been to the social security disability doc, I agree with Sweetleaf. That doc is not there to diagnose you with anything. He's there to get an idea of whether you are faking. Nobody's going to get disability in the US without an established medical history of a condition. Actually your condition has to have pretty much ruined your life before you'll get approved for social security disability in the states.

draelynn
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28 Dec 2011, 2:32 pm

InTheDeepEnd wrote:

I suspected as much but my husband did have a decent doc who evaluated him (for a different psych condition), spent two hours and ,from his accounts went pretty indepth. I had a feeling he was just a stroke of luck on our part...

Ambivalence
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28 Dec 2011, 7:32 pm

Guineapigged wrote:

Some of you are being incredibly over-defensive. I never once suggested that a person with official diagnosis should have any more right to post here that an undiagnosed person. I also never implied that undiagnosed people aren't autistic.

You didn't, no. Which makes your thread - among the very many pretending to address self-diagnosis - an exceptional rarity, as most of them are thinly veiled excuses to bash the self-diagnosed. In any case, I suspect any thread even tangentially referring to self-diagnosis is doomed to devolve unless it has clear rules laid out at the beginning and is aggressively moderated.

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Verdandi
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28 Dec 2011, 7:33 pm

Ambivalence wrote:

Guineapigged wrote:

^^^^^ Very much so.

cleo
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28 Dec 2011, 9:46 pm

I liked what a number of you wrote, but this one particularly stands out:

The system where you need official diagnosis for medication, benefits and such, isn't the same system you use for communication and support. Wrongplanet is one kind, your government and doctors are the other. You can see that?

Someone asked why don't people get a professional opinion? In my case I don't have a need to. I'm 54 and have a good job and make good money. I'm not looking for any gov benefits. I would "like" to diagnose myself as being "slightly" on the spectrum. Amusingly though, I got "grades" that rather surprised me on all those tests bookmarked on here. Grades that put me a lot MORE SQUARELY on the spectrum than I had thought. (I thought I'd ace them, LOL!)

The information that brought me here came originally from a family member. There is a lot of history but I see no need to go into paragraphs for anyone's sake. With 35 adult years spent dealing with communication problems, I am very familiar with many of the issues raised on here. Unfortunately. It hasn't exactly been fun. There have been periods of great depression. But I've passed through and survived. Whether a person needs a professional diagnosis done somewhat depends on 1) age, and 2) disability level. It may not be necessary for everyone seeking help.

Let me just say that this forum with its myriad of posters and information is helpful enough for someone like me. I have learned from threads on here things about smiling for instance, and what it means, which is useful. Even though I had built up an array of coping mechanisms I can always use more information. Reading this forum I have been able to better perfect my social skills. I don't even mind that I have to *smile* the whole time I'm at a party now. Where before I knew I had to do that, but not why, and it annoyed me. This forum and the description of AS gave a name to all my "bad habits" that I had been trying to "break" for years. This helped me to relax, knowing some of this is out of my ability to control. And at the same time it allowed me to focus on what I could control. It made everything clearer. That's good enough for me.

I am a scientist with a graduate degree, but not in psychology. I know a lot about biology and chemistry. I can certainly understand scientific papers on this subject. I'm trained to do research, with all that involves. I can understand your arguments, but I still don't NEED a professional diagnosis for any reason. It's irrelevant to me.

If a person experiencing symptoms of AS ends up at this website, and finds information here that helps them cope, that's good. If they are a severely disabled person and need a professional diagnosis for insurance or income purposes, there is a lot of good information here on that too. There is good information here for parents, and spouses. It's a melting pot of information on the spectrum and each person should take from it what they need. Skip the threads that don't apply to you. Everyone is different. It's a 'spectrum" after all. I have no idea if the people who posted all the ideas I found useful were professionally diagnosed or not. What mattered to me was that their suggestion made sense.

I see this forum as a chance to learn from each other. We aren't "curing" each other. No one is pretending to be a doctor. People are passing on advice as to what has worked for them, or what they have figured out. AS does "improve" with age meaning coping skills can be learned. Many online forums work successfully the same way. Lots of people interested in cooking exchange tips and recipes. They didn't all graduate from Chef school. Same for people working on their car. Motorheads are all over giving tips. Same for IT. I get lots of info on how to do things to my computer from online forums. Surprisingly the tips work! Why not here?

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