A shot in the arm for self-diagnoser's (Good thing)

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Its only anecdotal, but here ya go

I initially came here after self-diagnosing myself. Ive seen the hostility towards self-diagnosed persons and though hardly surprising did feel it was carried a bit far by some.....

Not as a result of that, but for my own curiosity, I pursued diagnosis and have today recieved in the mail a final evaluation report from U of W autism center confirming a diagnosis of Asperger's Syndrome/Autistic Spectrum Disorder (The latter nominally added to deal with the upcoming possible repercussions of the coming DSM V).

I will also add that anyone in the Seattle area, or greater Western Washington, that has money issues but wants to pursue a Diagnosis anyway should give the U of W a call, they have an 80% coverage Scholarship for low income families. The thing holding me back from seeking a diagnosis originally was a lack of money (I was quoted anywhere from $2.5K-4K by many different places).

Aldran

Was it worth it? I thought about finding out for sure but since finding out about AS life has been a bit better anyway. Besides I would be more shocked if I didn't have it.

Yeah yeah self diagnosis related stuff is not easy.
If you self diagnose yourself and inable to get it to the level of affection that it would count officially.

Still you'll have eventually anxiety disorders related to the spectrum, and feel bad when they are treated the NT fake way.

Still people will ignore you or they will condemn you when you are strange.

And on top of that my family refuses to sort of deal with this properly and say to me there is nothing unless you get a proper diagnosis from so called "experts"
that really know much better what this whole thing is about, especially how it feels like

So if I fail to qualify to the standards then they'll never believe this and not even try to look into it.
Moreover if I would tell I didn't get the diagnosis they'll just think there is nothing, or something else what is unknown.
By that they'll miss their spectrum traits completely and continue wondering what that thing is why they are weird, with the solution being so near...

Great.

So what would I need a diagnosis for? Not for going into retirement and just lazily being at home, but for other things, like getting spectrum related support or convincing my family.

Just to believe you have it severely or not is simply not the truth. And that's bad because it can potentially be the cause that you won't be able to get the support you'd need.

I mean if you have a flew you'll get medicine if you'd want so, not only when this is so bad that you have 42 C fever or so.

And then there is the potential disappoint when you open up to a psychologist or psychiatrist and he/whe'll just respond: "No you don't have that"
The society is just so unaware of spectrum (disorders)

I didn't experience any hate here, though.

Everyone that has found his/her way here is one more that gets some understanding why he/she is the way he/she is. And especially for my age and older there are tons of people that know they are strange but they don't know why. Can't know why, because there wasn't any asperger yet in my childhood. And diagnose for adults is much more complicated (mostly retrospective if I understood right)

These self diagnosed get a lot of possible tips tricks and strategies. And they'll bring new aspects new experiences.

Now, tell me that you hate me. And that it'll get immediately better when I would have a diagnosis.
The only thing you could blame me off are rants, and there you are totally right

I think the hostility comes, not toward people that think they likely have it, but to those who say they 100% have it without professional diagnosis. Not everyone who thinks they are on the spectrum actually are. Many are, yes, but many have other things causing the autistic-like symptoms. The many times I've gone to the doctor's office thinking I have cancer (a huge fear of mine...), leaves the doctors flabbergasted that I would try to diagnose my symptoms without professional help. ASD is a complicated disorder, and the same thing applies. I was self-diagnosed for years, but I never said "I am autistic". If I said anything at all it would be, "I have reason to believe I am likely on the spectrum". I think the approach a potential ASDer here takes, will determine what type of "hostility" they receive. Just my opinion, though...

Well and you forget how different aspies are from one to one. Especially from female to male.
And from the level of affection.

If I'd match the criteria of a disorder in the AS, I don't know.
But I'd match probably at least some anxiety problem related disorder.
That this would also explain my problems with looking people into the face and such...
patterns, obsessions, thinking instead of feeling...
I don't know what else that could be.

Well, I want to get my feelings clear and recognise my mistakes. Find some insight

I wouldn't say I am autistic, just that I'd be on the spectrum, which isn't actually a difference.

And I am 100% of the opinion that self diagnosis is a very important tool and I am happy for everybody that finds a self-explanation in that.
Nothing is worse than when you just wonder why all things in life just pass by and you never get a true share in it.
You wouldn't know what to do without that relation to AS, you would find other people to be mean to you. You'd have no explanation why always you are the last to come.
You cannot start dealing with the problems, if you can't identify them. Here you can

Now, to make up some group of "real aspies" and separate the self-diagnosed from it is just like typical non-reflected NT behaviour who are proud by status
or even proud that they are something that others are not.

Being someone on the spectrum I think is cool, but not because of the status just because of the positive traits.

And, remember, that aspies can be so different that they are perceived completely differently, even by aspies.
It is a spectrum (I think most agree on that). And from that kind of viewpoint there is no real border where ever.

A diagnosis based on severity doesn't thus really make sense. It starts even with the simple question: What is still a disorder and what not?

If you'd get an official diagnosis that wouldn't change a thing, because you are still you. And your opinion is nothing more worth because you have now the official permission to carry the name.

Since we are one school shooting or "famous murder case" away from new laws, in the land of "somebody somewhere did something so let's pass more laws for everybody", the less lists you are on the better. There are a lot of people living behind locked doors afraid of everything and once "aspergers = <insert negative label here>" there will be people at desks looking to make it look like they are out to save everybody.

Oh but, without an official diagnosis, I can't get checks and help, right?

I don't want help, and I don't want welfare checks.

Since when there is a register for asperger with access for officials or others? I mean how would they find it out who is and who isn't?

And yeah you can get if you'll just pay everything yourself. Really small moneys

If you are in a therapy, then I think it is good if you'd get a treatment that would take your AS into account.
Now, how are you going to find somebody that would accept you as being on spectrum without an official diagnosis?

I'd conclude to have an official diagnosis does not have really disadvantages, it just opens up possibilities in case.
But the self-diagnostics are a really important aspect and there is nothing wrong with it

In the world we live in, if any specific information about you is on record, anywhere, it wouldn't be that hard to collect it and create such a register.

Heck, Nazi Germany was the first "Information Age" society, using primitive Hollerith punch card technology, and they were pretty effective at compiling registers of Jews. In France, where a Resistance member sabotaged the punch cards before they were put to use, 25% of the Jews died - in Holland, where the punch cards were used, 75% died. (Yes, these are rough figures, but you get the point.)

With the technology we have now, it is much easier to assemble information. Any information. Heck, if you simply come here and identify yourself as self-diagnosed, it wouldn't be at all hard for someone to harvest that information. And if you have a record in the healthcare system anywhere, that's a lot easier to lay hands on. (And privacy laws cannot stop the people who write the laws - they can always write themselves an exception.)

Whatever your opinion on what will happen, the possibility is there. Sure, technology can be used for good things, too. It's a tool. But when companies can learn so much about you just by what you buy (there was an article I read about how Target figured out a girl was pregnant before her parents knew - and she never told them), the ability is there for the government to make whatever "registers" they choose.

This way of looking at it has bothered me for a long time. If you think you have cancer, the doctor can do physical tests to find out for sure whether you do or not. They can check your blood and scan your body and SEE whether the cancer is there or not, no room for doubt - and you can't do those tests yourself. If you go for a diagnosis of asperger syndrome, the doctor has a list of symptoms, asks you a bunch of questions, and then takes a guess at whether you "qualify" as being on the spectrum depending on your answers. Those doctors don't have any more information about autism than can be found on the internet by anyone. Any intelligent person can look at the list of symptoms and diagnositic criteria and decide for themselves whether they qualify. Sure, many people might be on the borderline, but I think for most of us, once we learned what it is, what the "symptoms" are, and what it feels like (from other autistic people, NOT from doctors who are almost always NT), it was glaringly obvious that we had found our explanation.

It really angers me that people assume that "qualified" doctors somehow have the magical ability to detect asperger syndrome. I had to regularly visit various therapists, psychologists, and psychiatrists from the time I was 5 years old until I was 19 to deal with depression, family issues, and other problems that they could never give me an explanation for. Not one of them ever even mentioned autism. I insisted to each and every one them that something wasn't right, gave them detailed descriptions of my experiences, and was told repeatedly that I was a hypochondriac and I was just "a bit different" because I was "highly intelligent" and a "late bloomer" and was looking for a diagnosis to give me an excuse not to deal with it and learn to fit in. I was left to suffer in silence. I thought I must be completely insane for most of my life, including those critical adolescent years. When I finally discovered AS (when I was 24) I felt a huge weight lifted. It was the most obvious thing in the world.

A year ago I persuaded the parents of a clearly autistic boy in my preschool to let us bring in a professional psychologist to informally diagnose him and push them to get him some assistance. While she was there I gave her a list of my "symptoms" (which I had given to countless doctors growing up) and asked her how she would diagnose someone academically successful who reported all that. She said it was a fairly straightfoward case of asperger syndrome, easily diagnosed, and the child could easily get some assistance.

Doctors don't know any more than we do. In fact, they know less, because they only know what it *looks* like, not what it feels like. Many of us, especially girls, can "fake it" really well (hold in stimming, force eye contact, etc.), and learn to do it as second nature (by parents and teachers who push us to act "normally" and the like). Many doctors, even those who specialize in autism, immediately dismiss someone because they lack certain "characteristic" signs like avoiding eye contact. I don't give a damn what any "professional" has to say. They lost their right to diagnose me when they let me suffer through my entire childhood with ho nope of an explanation, assistance, or even sympathy.

Well said. It's one of the reasons I fear a professional diagnosis. I am not in need of services from the government, so a Dx is more of a personal gratification thing than anything else. With the new healthcare law in the US, everything will be required to be in a central government database, which can then be used for whatever means that a law is passed to allow it to be used for. Gun control? Well, let's look at the database of every American who has ever had a mental health issue of some sort that makes them not entirely normal, and let's tell them they cannot own firearms. Rationed care? Well, autistic people really can't have a good quality of life, so there is no reason to give them expensive, life saving procedures. When they get really ill, it's better just to let them die and stop being a burden on the government. Some autistic people have bad sensory and distraction issues that make it impossible for them to drive, so let's just purge the roads of people who have an ASD and take away the driver's licenses of anyone on the list. There are all sorts of scenarios you can run through that are negative and against being put into a database.

Last edited by outofplace on 25 Oct 2012, 1:58 pm, edited 1 time in total.

Indeed. I agree with this 100%. This just goes to show how little so-called "experts" really know and how much that stupid piece of paper they get from college is really worth.

Nice comment.
And a good example.

The illusion they'd think you'd grow out of AS.
(The illusion that you'll manage well because you did it already.)
The difficulties with diagnosing AS with adults.

The idea that people that are affected never can get clear things that they are suffering from.
A disorder can be maybe cured. AS(D) can't. It shouldn't be called disorder then?

http://www.macmillandictionary.com/dictionary/british/disorder

I honesty can't comprehend the thought process that goes: "I suspect I have this condition that describes me perfectly and explains all the troubles I've ever had, but how can I be sure? I know! I'll beg audience with the Magic Expert who has read about it in books! Surely they can provide me with a satisfying piece of paper!"

Poseurs will not have to worry about being 'discriminated against' by people with real diagnoses once DSM-V goes into effect. There will be no more Aspies after that -- real or imaginary. Instead, we'll all be Autistics, and everyone who comes out as one will be a prime target for people who like to throw the "R-word" around.

Personally, I'd rather wear the label of a "Slightly Eccentric NT" or "Grumpy Old Man" than "R****d" anyway.

This. So much this. Especially since when you do go in for official diagnosis, they base their opinion primarily on your self-diagnosis and then charge you thousands of dollars.

Did you know that the punch cards used in the holocaust were developed by IBM? Shocking. Also, it is worth considering the Rosenhan experiment http://en.wikipedia.org/wiki/Rosenhan_experiment and the other related experiments in regard to diagnosis/misdiagnosis.