Wrong Asperger's Self-Diagnosis

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Huhwhat? "A mental disorder" can be anything from having serious trouble discerning reality (such as many things currently diagnosed as psychoses), to having a pattern of flat emotions and social withdrawal (schizoid personality disorder... nothing to do with schizophrenia despite the name, and doesn't necessarily distort one's perception of the world at all). You cannot possibly generalize about the ability to see and evaluate things clearly, of such a diverse group of people.

Moreover, some things currently classified as mental disorders seem (in studies) to help with certain kinds of objectivity. There's some evidence for instance that people with major depression are more likely to have an accurate view of certain things happening around them. (It's called Depressive Realism.)

Autism is actually another such condition. Autistic people seem overall (and note that this is only a tendency, not everyone will fall within this), to be less subject to false memories, and also less subject to certain... I can't remember the name. But basically less subject to being "led" by other people's responses, into seeing the world in a distorted way. We're less subject to optical illusions (or rather, in some experiments, we can see what the illusions look like, and yet if asked what's really being seen, we can give the correct answer, unlike most people). It's quite possible that autistic people have less filtered sensory information (and therefore, see more of our environments directly rather than simply seeing what our minds tell us they expect to see).

Now I'm not saying that every autistic person is objective (I don't believe it's possible to be objective), nor that we're superhuman or the next stage in evolution or any of that crap, but we do in some areas seem to have more accurate perceptions of reality than the average person. So it makes no sense to say as such a broad generalization that because autism is a mental disorder then we couldn't possibly understand enough to tell that we're autistic without a professional to tell us first.

Of course, some of us really don't know these things. I didn't, when I was diagnosed (with autism, not AS, FWIW). It took me years to understand what I looked like from the outside enough to see how I fit the criteria. But when I did figure it out, I was going through the same process as those who self-diagnose. The same introspection, the same looking carefully at my life and at my history, all the same sorts of things, and I did eventually come to fairly accurate conclusions, as evidenced by statements of those around me. And that's exactly what people who self-diagnose do.

Additionally, an internationally famous autism researcher (Simon Baron-Cohen) once said that a huge amount of those who self-diagnose are likely to be correct. I don't remember the percentage but it was in the high 90s as I recall. That's someone who, whatever I think of his theories of autism (I don't think much of them), has been diagnosing people for a very long time and certainly knows his stuff when it comes to diagnosis, better than I do and better than you do. I can't remember the quote, but something like "97% of people who self-diagnose are likely to be correct." (But it's obviously not that exact quote because I can't find it when I try to websearch, it's drowned out by discussion of the AQ test and other stuff like that.)



Most autistic people who self-diagnose go through a detailed and often agonizing process of poring through book after book, working out everything they know about autism, and trying their best to see whether they really fit it or not. That's hardly the same as reading WebMD and Wikipedia.



*sigh* That's because autism and cancer are totally not comparable. Not in the least bit. I don't know why people always use cancer as the analogy no matter what aspect of autism they're talking about, because there's just no comparison.

The reason that people are seeking a formal diagnosis isn't because they would like to have a major mental disorder, it's because they know something is deeply different about them and they have done the research and they understand what's going on, and they're looking for someone to confirm it so that they'll be able to use it more to explain to people or even get services and other needed things. The reason people go from doctor to doctor is because most psychiatrists are not trained in recognizing adult autism at all. There's been research in the psych system showing things like tons of autistic adults misdiagnosed with schizophrenia, who then end up being diagnosed with autism(inclusive of AS) instead. There's evidence of massive underdiagnosis of autistic adults because when we go to psychiatrists they aren't looking for autism because it's supposed to be a childhood disease. You have to get a real expert in autism, often, to be diagnosed. (I had it in easy in a way, I was diagnosed by a child psychiatrist who specialized in ADD and developmental disabilities.)

As for wanting an excuse for their behavior? I call BS. Because you know who uses that "wanting an excuse for their behavior" line to excuse their own crap? Lots and lots of nonautistic people who don't want to think that they're trashing, bullying, etc. people who are actually disabled. They use that line as an excuse to be nasty to autistic people, more than autistic people ever use our diagnoses to excuse our behavior. And they use that line when they don't want to listen to "I'm sorry, I took it literally, I didn't mean it like that," etc. even when that's a totally legitimate problem for an autistic person to have. I have seen more autistic people online treated like dirt by people saying "Don't use autism as an excuse for... acting like an autistic person", than I have ever seen autistic people using autism as an excuse for truly crappy behavior. (And yes I've met the occasional autistic person who does that, but emphasis on occasional.)

You seem to be following the trend, with the usual double standard. You say that autistic people don't have the comprehension to diagnose ourselves, and yet you believe you have the comprehension to undiagnose people over the Internet. I mean seriously, that's just a sign of really distorted thinking on your part. You just know which ones are real and which ones are not, Temple Grandin is real (because she's famous?) but the ones on the message boards couldn't possibly be. I don't buy your "expertise" for a moment.

Well said, anbuend.

1) You question where I got my info from but if you read this very topic you will see that most of the posters are self diagnosed and outright claim they are "aspies". This is just arrogance on their part. They truly believe that their doctors are either dumb or inexperienced enough to give them the diagnosis they want. They don't want the TRUE diagnosis they want THEIR diagnosis. They know they are right and can't stand to be told they are wrong by a professional. They would rather accept their own diagnosis even though they have absolutely no medical training whatsoever. Defending a self diagnosis on any level is straight up irresponsible regardless of the reason. Expense and distance may be reasons why someone doesn't get diagnosed by a professional but those reasons don't validate a self diagnosis. Example: I can't afford to seek medical help but all my online research points to me having cancer therefor I must have cancer. My self diagnosis is correct because I have a legitimate reason for not seeing a professional. That was your argument.

2) Every specialty problem requires a specialist. The problem is that these people won't even accept the opinion of a specialist. Read this very thread and you will see people that admit to doctor shopping in order to find one that will agree with them. How many patients go into a doctors visit dead set on having a specific ailment? Generally you let the doctor determine whats wrong. That's why they are doctors.

3) You make the mental health industry sound like a bunch of morons. Again because someone isn't given the treatment they want the doctor is doing something wrong. You mention doctors ruling out a diagnosis simply because the patient suggested it. As if any doctor would truly do that. It is more like the patient suffers from paranoia.

There is no double standard on my part. I am not "undiagnosising" anyone. I am saying that self diagnosis is not acceptable as proof someone has a disorder of any kind. And yes I mentioned Temple Grandin as an example of someone that truly has autism. She was officially and properly diagnosed. I mentioned her because I knew you would know who she is.

I find it very disturbing that so many defend a self diagnosis simply because the individual spent a lot of time researching the disorder. Did this individual go to medical school? Do they have experience treating patients? The answer is no. But of course that doesn't really matter to you since you make the entire mental health industry out to be ignorant fools who can't ever properly diagnose someone. Instead the only people that can diagnose aspergers are "aspies".

You said that "most who claim they suffer from aspergers are self diagnosed," not that "most people in this thread are self-DX." As to that issue, this is a thread specifically asking self-diagnosed people how they would feel/what they would do if a doctor disagreed with their self DX. It is reasonable for most of the posters in it to be self-diagnosed. And yes, many said they were Aspies - self-diagnosed Aspies.



Really? Straight up irresponsible regardless of the reason? So, you are saying that it is impossible for the patient to ever be right, and the doctor wrong? As I said originally, "Most who take exception with their diagnosis have gotten said diagnosis from a doctor who does not specialize in ASDs." If one believes they have something which requires a specialist, but has that concern dismissed by a non-specialist, it makes perfect sense to defend that self-diagnosis. I would argue that NOT doing so would be irresponsible.



No, it was not. In your first post, you questioned why someone who suspected having this disorder would not seek a professional diagnosis. I gave several valid reasons for not doing so. I did not imply that those reasons, in any way, validated the individual's conclusion.



And I agreed that, outside of some sort of exceptional circumstance, doctor-shopping is a bad thing.



Every example I cited has been claimed as a real experience by multiple people on this board. I was not present for the incidents, so it is possible that they are lies or exaggerations. As often as I have seen such incidents related, however, I am unwilling to summarily dismiss all of them as fabrications.

And now I have fed you twice. You'll get no more from me.

About a year before my diagnosis, I read a book about ADD, which seemed do describe exactly my problems. I had also problems with organising and paying attention in a conversation. The doctor and all my familiy said it wasn't ADD, but I believed it for a long time because it was the only explanation I had for my differences. (I hadn't heard about autism then) It turned out that I hadn't ADD, and my symptoms were all caused by my Aspergers.
I don't deny that many self-dx are correct, but there is also the possibility that you missed sommething.

I didn't read everything on these 7 pages, so this is in response to the first post.

Here are my thoughts on the matter:

When I was a kid, I was taken to doctors, a numerous amount of psychologists and psychriatrists all in a desperate attempt for my parents to figure out what was wrong with me, why I acted the way I did, why I said some of the things I said, why I always melted down over what seemed like nothing, etc. None of the doctors, to the best of my knowledge, ever mentioned Autism or Aspergers. I began going to these people before AS was recognized in this country (before 1994); however, I did go after that date, and still no answers. It wasn't until my current counsellor suggested it just before Christmas 2010 (at the age of 26) that someone FINALLY said "Aspergers" to me. I went to get a diagnosis, and voila, everything made sense (after reading about it my mom said that it explains EVERYTHING that they were concerned about when I was a kid.)

The point of that story is to show that doctors really do get it wrong sometimes, or they overlook things, etc.

On the other hand, sometimes doctors and psychologists get it right. I am NOT saying this is you; however, sometimes people get so hung up on a label, they think they've finally found the answers, and they can't see after awhile that that label really might not belong to them. That person might have incorporated it into their identity for years (I did with AS, before my diagnosis) and have become insistant that this is who they are. Sometimes these people are wrong and there really is a better explanation.

If you are unhappy with what the doctor said, maybe you should contact a psychologist and go in SPECIFICALLY for an Aspergers assessment (I called specifically for that and that alone---they looked for other things too and I was actually diagnosed with comorbid anxiety, but they were also looking specifically for Asperger/autistic traits). And indeed, they found them. I know someone else who went specifically for an Aspergers assessment, and they did not get the diagnosis. If you go in with that concern in particular, they won't be overlooking it, because that is what you are going to see them about. Don't say "I think I have this", say something like, "I know there is something a bit different about me, and I have been doing a lot of research lately, and I am just wondering if Aspergers syndrome might apply to me". Then they know what they are looking for and they will control the interview and assessment in a way that will let them see if it is there or not. If you do that, and the doctors say "no, but you have this _____" then it might be time to let go of the AS label for a little, and reflect inward a bit in light of this new label and see if you can realize how it might really apply to you.

By the way, when I went in for my assessment, I did NOT pull out a list of characterisitics. I let THEM control the environment, THEM to control the questions, and I answered in a completely unrehearsed way so that they could see the real me in action.0

That is my advice, and I hope things seem a bit brighter soon.

I think there are several reasons why some people feel that self-diagnosis is sufficient. Speaking only for myself, being officially diagnosed at this point in my life could potentially be counter-productive. Not only is there not much help out there for a post-diagnosis adult, but being tagged with an Aspergers label could quite possibly jeopardize my employment. In my case, it's actually in my advantage to maintain plausible deniability.

It is what it is as they say ... the template for Aspergers fits perfectly over my life. But at this point in my existence, I have a nice house in the suburbs, three wonderful kids, a beautiful wife and a stable job that pays the bills with enough left over for the pursuit of family fun and my own special interests. There is simply no logical reason at this time to pursue an official diagnosis. Perhaps there is a chance that my self-diagnosis is wrong but no one is being hurt by it. I have not even talked about it with anyone but my wife nor do I have any plans to do so. It's an intensely personal issue not only for myself but for anyone on the spectrum.

For me, I think it was very much the opposite. When I first looked into AS I was very skeptical. Then I started to look at the facts. It is extremely obvious that I have it. And if I don't, then what do I have? Usually, the simplest explanation is often the correct one, and AS is by far the simplest.

And my reasoning for not getting an official diagnosis? Because it doesn't matter. There is very little help, if any. I have no intentions of telling anyone of my AS anyway, official or not. And not to mention looking for someone who even knows what AS is well enough to diagnose it is neither easy, nor cheap.

I'm not sure my self diagnosis is correct, but even if I were to get an official diagnosis, who is to say that is absolutely 100% correct? I've found out so much about AS if I were to get a diagnosis it would obviously be skewed in the first place, because I know what someone with AS would say.

But, to answer the question, I would also question the diagnosis if it was not AS. At least, not without actual concrete evidence. Going to get an AS diagnosis and being told it's something else makes little sense without some reason. I haven't found that reason, and I doubt an expert on the subject would either.

I actually first thought I had it three years ago, but I didn't do anything about it then (or really think through what it meant). It came up again last winter when I was dealing with the stress of applying for disability benefits as well as daily overload and regular shutdowns, and it was much harder for me to act like nothing was going on.

I still had a lot of skepticism when I investigated, and I did a lot of research to rule out the possibility and kept failing. I mean, when for the first time in my life I see people describing experiences and cognition that actually make sense to me, it's hard to dismiss that. It's hard to dismiss how much of what I read applied to me. The DSM criteria didn't really help to explain anything.

And hey, my therapist agrees that I have it. If most people go through what I did when they think they have it? And I think they do since many have described the same process (anbuend described it a few posts back), I'm inclined to believe them.

What about you makes you think you have it? You have named a laundry list of things that most people shoot for. Nice house, three kids, a beautiful wife, a good job and extra money in the bank. Seems like you have what every "normal" person shoots for. So why are you comfortable believing you have aspergers especially since you have never discussed it with a professional?

What does it matter to you?

Because it disgusts me. I'm literally disgusted by self diagnosed aspies. And if you were legitimately diagnosed it should disgust you too. Those who incorrectly self diagnose only hurt those who truly have the disorder. Those that incorrectly self diagnose help to create a false image of people that suffer from aspergers. It is very possible that people are not accepting of those with aspergers because so many creeps have decided to diagnose themselves with AS to have an excuse for their poor behavior. And this is what the layperson often sees.

This is just my 12th post, NotCrazy. If you want to know a bit about my symptoms, simply go into my profile and search through my other posts, where I talk about some of my issues. It will take you but a few minutes. For whatever reason, the tone of your posts suggests that you're in a box where you think any form of autism is debilitating. Not true. On a factual level as it relates to this discussion, it is irrelevant whether or not I am autistic ... the point is there are many, many people on the autistic spectrum who have learned how to cope and function in a world that isn't necessarily suited to their strengths.

Personally, I'm a little curious as to why you're here. You've picked "NotCrazy" as a screen name and felt the need to tell us you're normal is your opening sentence. Perhaps you too are searching for answers. Just a thought. Cheers.

Really. You sound way too invested in this.

Also, I am only a few weeks away from my official diagnosis. My family, PCP, and therapist all agree I have it. It's just a matter of seeing a psych, not that I should have to justify whether I am autistic enough, so whatever.

Perhaps we should all get matching tattoos on our foreheads, or we could sew big letter A's on our clothes.

People who are "disgusted" by others who don't meet their standards are unfortunate. While I am certain there are some folks who wish to identify within a community even when they aren't actually a part of a community, I imagine that this one isn't the first one most of us would choose straight out of the gate as it were. I wonder if this disgusted person who isn't crazy is aware of the myriad of self-identified adult Autistic people who have written books and made a career out of advocating and speaking for the community who have "no diagnosis" other than peer identification. Hmm.