"Self diagnosis" trends...source of ridicule

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My experience is you are wrong here. I had to correct one psych who was reading part of the DSM criteria inversely. So this $150 a session professional had never diagnosed anybody.

If I have an unusual lump I should not have to do my own biopsy and send it to the lab. Get the results back, positive fo cancer and then seek out a cancer specialist for professional diagnosis. That is the equivalent of what people are doing when they self-diagnose and then seek professional diagnosis.

Get it through your head the reason for the self diagnosis is that professional standards are abysmal in this area.

Ok?? I didn't say every doctor, I said certain.



Yeah you see, notice how after you found the lump and got suspicious you go and get a professional to do the biopsy? Then when it's malignant you seek a cancer specialist? You got your suspicions confirmed through a doctor. You didn't perform the biopsy yourself and decide "oh I have cancer", you got sought out a diagnosis that fit your symptoms. That is the critical step that is missing with people that SD AS, they stop before that extra step of getting the professional opinion and just diagnose their 'cancer' themselves.



Are you talking about your area? Or America? Cause I'm starting to understand how totally crap the USA is for this kind of condition and for the psychiatric profession in general.

If you are talking about your area in your information (Brisbane) then I must beg to differ. I am from Brissy (well Goldie...) and I happen to know that there are many well informed ASD specialists throughout SE QLD. Not to mention the minds&hearts clinic, the AS mecca for some.

Actually, it is a clinical psychologist that diagnoses Asperger's Syndrome, hush6.

No, once again, you are wrong. In the parallel I am giving, I have to do the biopsy myself, cutting and everything to reach the diagnosis of cancer. I have to send the biopsy to the lab after doing a google for "unexplained lumps" and then seek out a diagnosis from a cancer specialist to confirm what I have figured out for myself. Thats the equivalent of whats happening for so many people who "seek diagnosis" after doing their own research.

I've spent 7 years of visits to a different psych where I would have talked about the same topic every session. Might be a clue? No, this guy just didn't consider Aspergers. How many other abysmal professionals out there are there? That's what the source of ridicule should be. Do you think the penny drops? No. Get it? Are you just stubborn and wrong at the same time. In fact you appear to be so stubborn and non-fact baesed you sound like an NT.

I'm still waiting to see some citation where there is both evidence of these masses of self-diagnosed individuals and of the negative impact they are reputed to have from your previous posts. I'll agree that 'certain' doctors would be a much better resource for getting a clinical diagnosis, but there are also massive numbers who are untrained or whose education has included extensive exposure to presumptions regarding ASDs that have been shown to be at best grossly inaccurate over the past 20-30 years.

Oddly, your last comparison makes no sense to me. After living with a brain whose 'floor wasn't level' for decades, I would consider myself intimately familiar with it. True - not being a mason, I might not know all the ways to address the issue, or always what is the root cause... but there is time spent with that 'room' that no other individual can match in familiarity. The doctor only sees it from the outside, whereas one affected has personal experience (with the possibility of objective observation depending on their ability to detach). The subject matters to me; it took months of spending time with my doctors, educating them on how the understanding of ASDs has changed and how the expressions may vary in adults affected (especially in the pre-diagnosis era, where it seems a goodish number of those here found a wide spectrum and strangely different methods of coping with their challenges), before even with their education they understood what was going on.

I have no quibble with those who take the time to research and come to the conclusion of self-diagnosis; I stood there for some time, and remain in a grey area with no 'official' diagnosis despite the concurrence of two doctors. I would stand with some reservation of those who read a single article and immediately self-identified with the condition, but there is no conclusive test or process that shows whether someone has an ASD... even professionals make mistakes. Therefore, a relative scale of acceptance works much better for me than this black and white assumption that seems to be your carried torch.

Lastly, understand that your personal environment and experience is not that shared by everyone; to put it simply, in some places it -is- still 50 years ago in terms of their understanding and ability to accurately assist and/or diagnosis. It seems that you have ample resources where you are now; where I just moved from, there was no one within over 100+ miles that had both experience with ASDs in adults (other than debilitating instances) and felt qualified to make a diagnostic evaluation.


M.

Why would someone do their own biopsy?? That is just silly.

And as for sounding like an "NT", that always seems to be said around here when someone gets all defensive. It's funny. Is it supposed to be an insult? I sound like a normal person? Oh no!! !! Horrendous. I don't encompass the whimsical ways of the magical "Aspie" code of ethics, I dare to step outside the enchanted forest and walk with the beasts. OH NOS!! ! (wtf?) But oh wait....it doesn't matter anyways because I'm firmly diagnosed by people I trust have good authority to do so....how you think I sound really means nothing. But hey, I'll be sure to point out at my next psych appointment that some random on the internet thought I seemed a bit too "normal" and see if she looks into it, I mean what better authority to go on than that of "flamingshorts", it really must be further investigated.

Because there is no one to do it for me.

Don't be offended by this, but am I supposed to care about peoples circumstances? Like am I supposed to say "oh well, there was no reliable within 100 miles for this person, I guess it's ok that they diagnose themselves then, that changes everything!" ??
I don't understand how a lack of available help suddenly qualifies someone to make a diagnosis. I know I am lucky to have had the resources that I've had and still have, it is the reason I am not a "bitter aspie". Hell, that is one of the reasons I'm so into people seeking professional help, I know how beneficial it is, not just for me personally, but for many of my friends (on the spectrum).

But, yeah, sorry, I just can't do that whole "change my opinion cause I feel sorry for someone" thing. My opinion is cement even though I feel for peoples circumstances.

And also, maybe it's not clear. I'm not against people researching their symptoms, recognizing them, associating those symptoms with a certain disorder and trying to find strategies and help to cope. I'm actually all for that, go for it! I just think it's wrong when people take that extra step and flat out decide they have the condition. I don't think they should label themselves, I don't think they should say "I have blah blah..." I think SD people should stand for 'seeking diagnosis' or it should be changed to HSA (highly suspect AS).

Oh seriously, ew and ouch. I'd hate to have to do that.

But anyway, no matter how much of the process you could do yourself, biopsy, whatever, you still, in the end, have to send it off to a professional for the actuall diagnosis of cancer. Otherwise you will never know, because the tools and knowledge to make that dx aren't availble at home, or you don't know them and can't learn them simply by reading...(though maybe with pictures?? But AS doesn't have visual aspects so I don't think pics would help there).

I have no place to send it.

Then you will never know, so just do your best to alleviate your symptoms.

*shakes head* I've not made any assertions of fact, only questioned your own. The ability to Google is there - many have learned about the condition itself by that very method - but I was more curious as to your response. By choosing not to answer and provide any basis for your argument, it leaves me with the decided impression that you are arguing your beliefs instead of making one on substantiated evidence. I've acknowledged that there are those whose self-assessment may be in error; you insist on being right instead of examining your own arguments... as you said yourself, your opinions are concrete and set in stone.

"I know what I meant when I wrote it." That's splendid - but the purpose in language and communication to express meaning to another person. Otherwise, it seems to be more a matter of semantic onanism to me. If you want to know how many people here were self-diagnosed and were later validated or proven wrong, all you need to do is create a poll to that effect. I'd be interested in the results myself.

I never claimed you said every doctor was a specialist; you're being presumptive. I merely pointed out that many doctors have outdated or insufficient information to be able to assist those on the spectrum - even in terms of pointing them in the right direction.

*shrug* I didn't get your intended meaning; it seems that my own was lost as well. You also presume that the 'affected' mind cannot see the minds of others; while it may be impacted, it is not blind.

What are these conclusive tests and processes? I've spent a considerable amount of time researching the matter, both regarding myself and my son - nothing in that research has produced a single test or exam that gives a definitive answer. Even the tests and surveys available rely on interpretation instead of quantifiable data.

Are you supposed to care? No, not really. Should you recognize that circumstances differ between yourself and others? Absolutely. Self-diagnosis is not the same as a professional diagnosis - I don't think anyone here has made that claim. But that doesn't make it invalid or inaccurate, either. If the lens of perception granted by understanding a fundamental difference in how one perceives the world gives them benefit, what does it matter whether that insight was given by a doctor or through the journey of research and self-discovery?

Finally, some of your last words again baffle me... I've never encountered someone in person who falsely claimed to be on the spectrum. Anyone who has told me of their condition exhibited core characteristics of being on the spectrum. Online, there are those whose behavior does not seem to match all the characteristics, yet their experiences match much of the criteria. Perhaps they are compounded by another condition; perhaps they are not on the spectrum but have one that closely resembles it at some level; perhaps they have adapted differently because there wasn't an explanation or acceptable for their oddity for much of their lives. Of them all, I know none well enough to evaluate them. At best, all one can do is see strong similarities or glaring divergences from the diagnostic criteria and related literature. Yet you seem to imply that people take the 'final step' and say they have a condition when they have not gotten a professional diagnosis. Where do you encounter such incidents? Are you evaluating the conditions of others on an anonymous online basis? And what is it that you are against - self-identifying with the condition? It is acceptable to research and use what can be gleaned but it isn't permissible to seek answers from others and discuss their questions and perceptions with the conviction of their own experience? From what I can tell, you seek yet another label to divide people into niches... which I have found to be an unsuccessful strategy, at least for me in my own experience - everyone is intrinsically different, even if those differences are not obvious to me, or even observable.


M.

Symptoms of what?

Your undiagnosed condition which is causing you to feel unwell and giving you reason to research that something might be wrong with you.

Sorry, I just cut out what wasn't relevant to what I'm going to say.

I cannot say whether it was "false" or not (because even without a diagnosis, someone can still be on the spectrum), but I've known people to claim a diagnosis where there has been none and/or to insist on an ASD despite not really fitting the criteria. This is both online and off, on this site (there have been a few people on this site who openly note that they are self diagnosed but changed it to just diagnosed because they decided it was accurate) and others. I wouldn't say it's many, but there are some. Specific example: I talked to one woman at length on another site; her father is self diagnosed with AS and goes on radio shows to talk about living with AS. He has never been officially diagnosed - actually, his wife is a special ed teacher who works predominately with kids on the spectrum and has for over twenty years, and she thinks he doesn't have it (she thinks there's definitely something off, but it's not an ASD) - but he tells people he has been.

In the end, do those people accurately reflect on everyone who's self diagnosed? No. But they do reflect in general, and someone who's listening to that radio talkshow up there could get wrong information because one man was claiming a professional diagnosis when he had refused to pursue one.

I am not against self diagnosis in general, so long as one accurately represents that (ie, not claiming a professional diagnosis where there is none) and is willing to consider other possibilities if they go to a specialist and are referred to another disorder. I think (and I apologize if I'm wrong) that that's essentially what hush6 is saying as well, at least in his last paragraph from the 8:44 post.

I never claimed that anything I said has been based on facts. I actually think I made it VERY clear (either in this thread or another similar one) that everything I've been saying is based soley on what I feel and experiences I have had. I said it straight out "I'm not working on facts, this is about how I feel." It is based on things I have learned and seen and heard for myself which has caused me to form certain opinions and emotions, I haven't read something somewhere which has given me this opinion. It's the same as most things learned in life, like bad smells, you don't read and research that certain things smell bad and then say to yourself "ok this smells bad so when I smell this I shall hold my nose and make an unpleasant face", you simply experience bad smells and you learn to dislike and avoid them....should people be required to give citations and facts on why something smells bad, or why they don't like bad smells? I don't think so. My experiences have brought me to this opinion.



I did not mean on this forum, I meant globally. I would not trust people on here to be honest anyway, I've read the IQ thread.



When you said this in another of your posts: "I'll agree that 'certain' doctors would be a much better resource for getting a clinical diagnosis, but there are also massive numbers who are untrained or whose education has included extensive exposure to presumptions regarding ASDs that have been shown to be at best grossly inaccurate over the past 20-30 years."

I could only assume you were telling me this because you were under the impression that I had a differing view on the subject. If this was not the reason then why did you mention it?



Um I didn't mean anything to do with mind-blindness or anything like that. I meant literal, physical, exposure to many individuals on the spectrum. Getting to know them and becoming attuned to their similarities, common traits and differences. Has nothing to do with what the 'affected' mind can and can't see. It is about professionals literally being exposed to many Autistic individuals with the actual intention of learning about them and how to more effectively diagnose ASDs. You can't tell me people who SD actually have this same advantage.



There is a description of the diagnostic process I went through in a thread around here. So you can read about it there, all the methods I mentioned provide indicators that either confirm or deny the existence of AS. This process is for adults with AS though, so it may not be useful for your son, though I think there are many tests for children also. If you don't want to find the post, let me know and I'll find it. If you'd like to know more about my diagnostic process then is in that post, let me know.

Oh but you were sort of right, it was not a single test or exam, it was a series.



I do recognize the differences between myself and others, I thought I made that clear. What I want to know is, does recognizing those differences mean I should change my opinion? Just because I can see they're in a tough spot?

And like I said over and over, I'm all for self-discovery, I just think people should get professional confirmation before they run around saying they have this or that.



I feel like I have already answered all the questions you've asked me here.

But once again, no I have no problem with people identifying with the condition and seeking help for whatever symptoms give them trouble.

This thread is about self-DIAGNOSIS, not self-suspicion. Self-diagnosis implies, someone feels a certain way, experiences certain things, reads the DSM for AS, does a whole heap of research and reading on the subject, maybe asks some questions online then says "I have Aspergers Sydrome".

Also, I'm not sure if you are aware, but there are a couple of other mental health conditions that 'look' almost exactly like AS? Do a google search on Asperger's and RAD. They are almost identical. The difference in the two conditions is only the cause. Asperger's is a biological brain dysfunction. RAD is caused by early childhood abuse, or neglect which has goes untreated. But people with AS and people RAD are very very similar. Many people who think they have AS who have been abused and neglected in childhood very likely have RAD. And if anyone who has SD AS who has been abused or neglected should seriously consider a professional DX as the treatments are very different.

(side note: What makes this even HARDER is that alot of kids with AS that goes undiagnosed during early childhood sometimes develop RAD as a co-morbid condition because of the trauma involved with trying to cope with, well you know, everything! Apparently it isn't all that common, but it is of my opinion that with what alot of AS people go through and our ability to handle it and process it, alot of us have RAD/PTSD co morbidities.

edit: Also, people with RAD are somewhat likely to be attracted to the AS label as they often have a 'lack of self-identity' and feeling of being lost and out of place, the AS label is almost like a fastrack to "who they really are" for alot of people. Instant identity if you will, it fills a whole inside of them for them.)

And yes I suppose I am after another label, but only because they insist on having a label at all. If they must be called something, I don't think it should be SD (the term just seems paradoxical to me). So I guess I'm not wanting a new label, just an adjustment of an already existing label.

You said "at least for me in my own experience - everyone is intrinsically different, even if those differences are not obvious to me, or even observable."

Exactly, and with people who may or may not have AS, it is specially educated professionals who can see these non-obvious differences, these subtleties that confirm or deny a dx of AS. But because all you have to go off is your "own experience" you are not attuned to these non-obvious differences, certain educated professionals are, so they can give whatever label is appropriate.

Last edited by hush6 on 30 Oct 2009, 10:58 pm, edited 2 times in total.