Wrong Asperger's Self-Diagnosis

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Speaking for my self, I walk like a duck and talk like a duck. I am not brave enough to see if I float like one, yet. I am assuming I am a duck.

It depends on what you want out of a diagnosis. I wanted practical answers to problems that have vexed me my whole life. The spectrum gives me a framework to understand myself and peoples reactions to me. It also gives me a way to approach social interactions that might just work for me. I have to slow the encounter down otherwise I misread cues and it blows up in my face.

So "Self-Diagnosis" has given me answers, and more importantly answers that work. It has also allowed me to predict things about myself that I never knew - but that work.

My advice is to try it on for a while and see if it fits. There is no commitment and you can return the diagnosis - free of charge - should you become dissatisfied for any reason. Official diagnosis' are only "NEEDED" for the bean counters and lawyers. (Realizing of course that there are people who need the vindication and or official benefits.)

Some of the trouble I have talking about this to some of the NT's in my life (and I think that this is some of the problem people have with "self" diagnosed aspies) is that they try to "empathize" with what I experience. My mother will tell me that she has trouble talking to people too, and that it is difficult for everybody..... NO IT IS NOT! I want to scream at her to shut up - because she HAS NOT gone through what I have gone through.

When I talk about it I am looking for answers. When people empathize, that is actually a refusal to give me what I need which is context. I know I have a problem that you don't, I need to know where I stand in relation to someone who is "normal" so that I have a foggy clue as to how to bridge the gap. It also minimizes the pain that I have gone through because it implies that I just need to "practice" more and everything will be fine.

I didn't go through 12 years of almost constant ridicule because I didn't "practice" enough. Like somehow standing in front of a mirror like a parrot, talking to my reflection would improve things.

What I did that helped was to talk about very specific things - like anxiety levels and then ask for them to rate their anxiety 0 - 10. 10 being a complete nervous breakdown. 0 being more zen than the Buddha himself. This worked because it allows them to empathize while giving me the context I need.

Hope this helps.

electrifiedspam:

What a great and succinct explanation! Looks like you've taken a lot of time figuring out how to describe the experience. I can identify with everything you said, and you did it so well, using so few specifics of your own unique experience that I bet a lot of others will identify with it as well.

Thanks for sharing!

I thought I had AS when I was 14 and ignored it, as the article seemed to indicate that Aspies are not very bright up there, and I was a good student. But when I was 17 a teacher told me I had it as her son, a doctor diagnosed himself as one. My symptoms are more severe than his as he has had girlfriends and girls go oooh! ah! over his photo. For non-relatives her son and I do have an astounding facial resemblance.

I don't really have to imagine it OP, since I've pretty much lived that so I can tell you how I feel. Frustrated and irate.

I first came across Aspergers many years ago, probably around 2002 or so. It was around a time in life where i knew something wasn't right with me, that i was different, I wasn't matching up with my peers in life and just wanted find something to answer it. I know I had come across Aspergers while looking into other psychological issues and it felt like the best fit for me. Albeit I did not know a lot of the details about AS then but it gave me enough of a suspicion to warrant seeking out a psychologist to look into it for me.

Well I got my psychologist and I told him about my suspicions and he basically just threw the whole idea out the window because I had "read it on the internet". He didn't even bother to test me on anything for ASDs. I got out it a diagnosis of GAD and was sent to speech therapy. And you know, at the time, I took his word for it. I was just socially anxious...

Well you know what? I went to that speech therapist and I did improve on my speech. However... when it came to doing certain things... like making stuff up to talk to someone about, I was still faced with incredible difficulty. Something about it didn't logically process well to me, as if I just couldn't make up a lie and go along with it or I couldn't just do something without a real logical reason to do so. The speech therapist now thought there was something more with me than just anxiety.

But I went with it... But my life really didn't change despite the diagnosis and speech therapy. Sure I could talk better, but I still didn't get people and I was still perceived as weird and reclusive with my interests.

It was many more years before I came across Aspergers again and by then, there was a lot more information out there about it. It still fitted, I even felt even more sure about it than before.
I was pissed at what that psychologist did with me. I believe he wasted my time and money. If he at least did the tests, asked the right questions, interviewed my parents, or sent me to someone who knew better about these things... I'm convinced he didn't really know, or didn't know how to recognize it in adults. My brother for christ sakes is PDD-NOS and I can see the autistic trait in my relatives in my mother's side of the family. So of course, there's a real chance I'm on the spectrum somewhere.

If I ever go back to another psychologist, therapist or whatever, I want someone who is at least familiar about ASDs in adults. I'm not going to settle for anything less.

I'd probably feel really depressed. I've never felt like I fit in anywhere. Aspergers is the one thing that gives me any explanation for why I am the way I am. If I lost that I'd be alone again.

If I self-diagnosed, but it turns out I wasn't an aspie afterall, I wouldn't say "but professionals know nothing about my AS! etc etc" I would just be glad that I don't have a neurological disorder and it's probably just something psychological or I'm just a typical nerd or whatever.

I was actualy told by a phsyciatrist "It might be Aspergers".

IF the professionals were correct, so would I. The problem is though, there are just too many professionals stating opinions, who do not know as much as they would like you to believe.

You're right, it is neurological. And if the "professional" happens to be wrong, and you do have it, well then what?

All I am saying is that it pays to do one's own research, and NEVER assume that professionals know more than you do, based only on the fact that they have degrees.

Make them prove it.

A simple, I don't think you have AS, is sadly enough for many to simply quit looking into it. I know one individual, who is a fairly close family member, who was diagnosed many years ago, yet because several doctors have told him they don't believe he has it, he put off looking into it seriously for years.

Now, he is finally beginning to look into it and take it seriously. The dx happened when he was about thirteen. He's twenty seven now.

My point wasn't that "professionals don't know." My point is that MANY do not, yet will express opinions when they shouldn't, and that we shouldn't let that stop us from considering it.

Always ask the question, "What DO you think it is?"

I used to think, in my own case, "It's probably just something psychological, and I'm just a nerd." I now know it's been much more than just that. And I would NEVER have known had I simply given up based on off handed comments and several attempts to dx that never considered Asperger's. I didn't just give up. I kept reading about ANYTHING that sounded familiar. Most conditions did not fit. Even many that seemed to at first, I eventually realized didn't fit. It was only after years and years that one day I read about AS. I continued to study it for the next ten years off an on. The more I read the more it fit!

I don't know what sucks more. Having a neurological condition and believing your just a nerd, or not having it, and believing you do. I don't pretend to know. I just know that if I DO have it, I don't want it dismissed.

The National Autistic Society in UK suggest that bringing your research of Autism and your connections with it into the matter when going to see your doctor for the first time.

I would think completely the opposite. I know when I know something and have never been wrong. That isn't to say I am always right. Just that when I specifically study something and combine my study with large amounts of evidence spanning decades and I end up having a definite opinion I am always right. I am riddled with flaws but I can combine information and spot complicated patterns. I can read several books from leading researchers and combine the information with the facts about my life. Some modern books on AS are an embarrassing read as they can contain so many common picked upon traits. They can cause you to re think every comment you shrugged off, every school report you used excuses for, every job that didn't quite fit, every frustrating ability that wasn't fully utilised and every mistake you ever made. At some point when you have remembered the x thousandth time in your life when you behaved in a manner a book describes as Aspie, asked x number of people who've seen you in certain situations what they saw in you at the time and they practically tell you like for like accounts of Aspie experiences you have read in Aspie biographies, you have to be confident that you have crossed the line between "that sounds a bit like me" and "that is me".

The one thing professionals agree on with adult AS is that it can be very difficult for them to detect. An AS person could have had their traits well hidden or re worked by their life. An AS person cannot effectively convey the amount of information they have about their AS life to another. This personal information is what a specialist has to rely on with an adult. Communicating information can be one of the greatest difficulties of a person with AS. In this case you would be relying on a chain that contains the weakest link. The quality of training and qualifications based on AS is not high and it is largely upto the professional themselves to mould themselves into experts. You have to also be sure that they convey enough information that shows how and why they came to the conclusions they did. In some ways it is a two way test.

The UK has complete apathy in adult AS diagnosis. It is one of the fringe areas in the NHS that has been cut back to the bone.

If it turns out "you're just a bit of a nerd", you haven't looked enough at the common associated AS traits. The only real questions should be "is it enough traits to be completely AS or a not otherwise specified?" and "does that really matter when the information you find is equally useful?"

Now THERE is the most relevant question of all!

For every day life, it probably doesn't.

But when it comes to gaining the assistance you might need, it matters GREATLY. Whether it is to get your insurance company to fulfill their obligations, convince the schools to do what they are legally obliged to do, or gain public assistance if that is what you need, it matters VERY VERY MUCH!

No "official" dx, usually means, "Sorry, there's nothing we can do."

It's just a label. If someone tells me I don't have it, AND explains why AND explains why in a way that doesn't demonstrate ignorance on their part then I'm fine with it. I spent years researching various mental impairments and seeing if one applies to me, and none ever did until I started researching AS and the reason I never looked into AS because it wasn't ever described. I went back and looked at all my psych texts and all they mention is LFA and don't even explain LFA accurately. So if there's something else that applies to me that I missed or don't know about then it's not like it changes anything about who I am, it's just a different word to describe it.

Celoneth, I couldn't agree with you more. It is just a label.

Unfortunately the "label game" is sometimes what some of us are forced to play when the "NT" way simply doesn't work for us. It's not our fault, and there is a very real and almost tangible difference with how we think and process. Some of us need to insist that the world around us accept us the way we are, and work with how we are, instead of insisting we conform.

If it takes wearing a label to get them to do that, so be it!

I wish we lived in a world where that is never necessary, but as my grandfather used to say, "Wish in one hand and **** in the other, and see which one fills up first."

It's not me, or any of us, i think, that really cares about a label at all. It's the systems we have to deal with on a daily basis that do, and the lack of cooperation from them, due to lack of a label, can make life far more difficult than it needs to or should be.

I spent my entire life vacillating between telling everybody, "Look, I can't help some of how I act, it's just the way I am," and trying like the dickens to adapt and be like everyone else. After nearly FIFTY years, it's time to hang all that up. It's time to say, "Look man! This IS who I am, and I CANNOT help a lot of it. I've changed as much as I can."

Trouble is, that's when the NT world then asks, "Oh really? Why is that? What's wrong with you?"

Because to them, without that "label" we're just non-conformist, arrogant jerks who are sticks in the mud, and manipulate to get our own way.

I wish like HELL labels didn't matter.

But they do. To those we somehow have to get along with.

First I'd like to admit upfront that I am what you would call a "normal" person.

After a friend told me he had aspergers I started researching it to find out what it was. Over the past few years of researching it I have to say I'm not sold on it. There may be legitimate cases of aspergers(Temple Grandin) but from everything I can find most who claim they suffer from aspergers are self diagnosed. As if that isn't bad enough I find this website and specifically this thread. I am shocked and disturbed by the lengths some will go to get officially diagnosed.

1) Most in this thread admit to being self diagnosed having never seen a professional. This is stupid for a number of reasons. If you believe you suffer from a mental disorder you can't possibly expect that you have the ability to see and evaluate things clearly.

2) Others have seen professionals but a diagnoses of aspergers was never given. The individual claims the doctor is wrong or an idiot and stands firm on their self diagnosis. You think you are more educated and experienced than the doctor because you read WebMD and Wikipedia.

3) Many admit to going to new doctors until they find one that will confirm their self diagnosis. You would think that one would be happy to find out that several doctors all agree you don't have a major mental disorder but for some reason they push on demanding that someone diagnose them. At this point the individual just wants an excuse for their behavior. You wouldn't see someone demand they be diagnosed and treated for cancer if a few doctors all said they didn't have it.

This is all very disturbing and if anything these individuals do suffer from a mental illness but it sure isn't aspergers. It is probably more like narcissism or egomania.

I should know better, but I'll feed you. Just this once. BTW, I love the way your username insults pretty much everybody here by implying that we're all crazy. Nice. Very classy.

I'm really not sure where you came up with the idea that "most" who claim to have Asperger's are self diagnosed. My experience has been that folks without a formal diagnosis are pretty honest about it, and don't say, "I am an Aspie." They seem to be much more likely to say, "I think I'm an Aspie," or something along those lines.

To your bullet points:

1: ASDs are not "mental" or psychological disorders. They are neurological in origin. Autistics (which includes aspies. I thought I'd point that out, since your "research" appears to have been quite cursory and may not have uncovered that fact) use a different approach to analyzing and solving problems. This is NOT the same as being unable to see and evaluate things clearly. In fact, people with ASDs are often very, very methodical and detail oriented in their approach to problem solving. As to why one would choose to not seek a diagnosis, there are many reasons. Expense, distance to a qualified diagnostician, lack of services for adults after diagnosis, etc.

2. Most who take exception with their diagnosis have gotten said diagnosis from a doctor who does not specialize in ASDs. Even in professional circles, it is recognized that ASDs can be difficult to diagnose in adults, and experts in the field strongly advise that an evaluation needs to be done by someone who specializes in the field. In many cases of self-diagnosis, the subject has read a LOT more than just webmd and wikipedia and does, in fact, know more about the condition than a doctor who doesn't work with it on a regular basis.

3. There are many horror stories on here about people who were denied a diagnosis for reasons which have nothing to do with any diagnostic criteria. Many others have been given an alphabet soup of multiple diagnoses which each describe one aspect of their issues, which - looked at together - form a perfect picture of AS. Still others describe experiences of having a doctor rule out the patient's suggestion that they might have an ASD simply because the patient suggested it. These, and similar issues, are surprisingly common. While I agree that doctor-shopping for the purpose of getting a specific diagnosis is (excepting exceptional circumstances) a very bad idea, getting a second (or third) opinion if you distrust the first one can be a valid choice.

Last edited by another_1 on 02 Apr 2011, 12:08 pm, edited 1 time in total.

I'd go back to being alone with my art lol. It's not so bad and I've spent 35 years not fitting in so I'm getting used to it lol.

As for getting over whatever problem is affecting me...well good luck to me lol.