Why would anyone stay undiagnosed??

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Looking through this site there appears to be a large percentage of people saying they have AS but haven’t been diagnosed with it.

Why would anyone who has AS not be willing to get a proper diagnosis which in turn would allow them to receive the care and supported needed.

What little care and support there is that is especially for adults.

If the glove fits wear it and I am 100% AS and on many occasions I wish I weren’t
but now i am willing to accept the help available my life is more manageable

Have you been Diagnosed with AS by a professional consultant psychiatrist???
If not can you tell me why not?

What for? There is not much help anyway and I can manage my life quite well without any "social worker" or whatever telling me to get out and make friends.
Most likely the effort to get diagnosed would waste more time than the result is worth. I don't need help, since there is not much I would like to change. And I know myself, what I would have to do if I wanted to.

This may depend on the place where you live and your personal situation (high functioning, depressive, suicidal...). For me it works at it is.

undiagnosed
why?
because i found what aspergers was about four months ago and im not sure weather to get diagnosed.
is a diagnosis really going to help me?
i dont know what support there is for AS in Australia and cannot find much on the web. That which i can find seems to be aimed at children.
Also, i dont know how much its going to cost and how long it will take. I dont want to waste money on something that wont help me nor spend time on it; I have a very busy life.

[quote="PilotPirx"]I can manage my life quite well without any "social worker" or whatever

As you do not need any help then maybe you havent got AS,
Just because I have it doesn't make me qualified to say if you or you dont but your in the same boat on that one as we both dont know

Not having a diagnosis does not mean being unwilling. It means simply not choosing to. Or in some cases, not being able to. Both of which are distinct from not being willing to.

And, seems to me you answer the question in your 3rd paragraph with your 4th paragraph.


As for me personally, well, first, I'm not one of those who claim to have it. Personally, I've no need for a particular label. It's enough for me that learning about autism and Asperger's has helped me to understand things about myself and about some of the people I know.

If you have AS and you are getting along happy in life and all is well which i was for 34 years then you would be totally unaware what AS is or what it means, if/when your life becomes unmanagable and you are at rock bottom you start looking for help. if at the end of the journey you find out you have AS then you start to read up on it and find out what it means etc.
I cant understand how someone would know untill told by someone who knows

at the end of a very long search i thought i had ADD this was due to the fact my girlfriend at the time had it. i was wrong but it took me to the right people

it really ripped my life apart so i would tell anyone be careful if you are going to find out as you may not like what you find

I can only give you MY take. I found out about AS AFTER I was 40. I have a nice job. What "care and support" could they give me? They certainly couldn't turn back time. They couldn't get me any REAL friends. They probably wouldn't help me get a nice wife. I am set in my ways, and probably won't change my personality. MOST other problems are either not concerns now, or are hidden. As for sound and light sensitivities? NOBODY CARES!?!?!?!?!? The best I can do is avoid the lights, and try to keep my ears plugged.

I went to a psychologist AND a psychiatrist because of AS related issues. I was even given tests that are similar to ones for AS. So WHY wasn't I diagnosed? Well, it WAS over a decade before AS was even known about in the US. Unfortunate, but true.

Anyway, my boss wouldn't understand, even though he always knew I was odd. My insurance might not pay for it. Would it HURT my insurance?

BTW if they found a way to categorize AS people(ability and disability profile), I would probably do it in a SHOT! It would probably get me the respect in the job I should have, and help to get people to take my complaints more seriously. Most other things are apparently VERY obvious to people. Alas, they don't.

Bottom line on one hand I have not dealt with the news that well though on the other i have picked myself up and moved forward as fast as i can

i wouldnt be labelling myself with AS unless i was faced with serveral evaulations that i trusted and i could no longer deny it

but thats me

I'm diagnosed but I can think of several good reasons for staying undiagnosed.

Reason #1

To get a diagnosis, there must be a specialist who is educated enough in Asperger's to make a diagnosis even if the person is an adult and (thus) presents differently than the typical AS child.

Reason #2

Many specialists who would be able to diagnose many will have to be paid the person themselves. ASD testing is as expensive in adults as it is in children.

Reason #3

It is hard to actually make it to the diagnosis. It usually requires the ability to research for an address, making phone calls to make an appointment and going to that place. Even if it's not hard for some people with AS it certainly is hard for others (because they have AS).

Reason #4

Private insurance is next to impossible to get with an ASD diagnosis. Insurance that one already had before may be lost due to the diagnosis.

Reason #5

Appropriate treatment (which is ASD therapy, not psychotherapy usually) may not be available in that area. Cannot be paid. Cannot be accessed due to either age restrictions or because it's an AS or PDD-NOS diagnosis and not a classical/autistic disorder diagnosis.

How would an official diagnosis be any betRAWR than a community?

I'm undiagnosed solely because I don't want it as a label on my health record. Not to mention it's definitely not worth the time, money & effort. Having any & all signs/characteristics of an aspie & having AUTISM autism in the family is proof enough for me.

Research, a community, & seldomly 100mg of Diphenhydramine if I'm having an extremely hard time getting to sleep. What else could I ask for?

Psychiatrists aren't the only people who can make a diagnosis, psychologists and pediatricians can too.

As for why haven't I sought an official diagnosis, well I happen to have fairly adequately camouflaged myself in NT society, and that is the way I want it to stay for now. I don't need or want any 'care and support' unless it comes from Aspie mentors.

here in the UK its true to say that insurance will not cover AS because if you have it you were born with it and it cannot be cured as such. so you get help for depression which can cover almost anything. plus most doctors know nothing of As so they will think your nuts anyway and tell you, you have this and that etc.

Its true that when i was a child i was just labelled as naughty and there was no help for us

point to make though

A few people are saying they have no need to label their self with AS but surly just by signing up to a site which is
the online resource and comm for autism and aspergers
you are doing exactly that??

This is like the Obama flag-pin argument. Just because he doesn't wear a flag-pin doesn't mean he hates America.

Last edited by atari2600a on 17 Oct 2008, 7:22 am, edited 1 time in total.

I imagine that having a diagnosis on record could keep you from getting certain jobs (particularly ones which require complete mental health - not saying it's right, but it's more likely to be misunderstood than not). If you're coping well enough and don't need any assistance, the negatives begin to outweigh the positives.

i have been diagnosed

this is a simple question which has a complicated answer, i cant be bothered explaining but each un-diagnosed person might have their own unique reason why not, i do not wish to explain the complexities as i would be talking in a more hypothetical manner than a logical way to get people to understand, the variations of each persons circumstances are high

I have no problem at all with labelling myself as an Aspie. I am 100% positive that I am an Aspie. I don't need an official diagnosis to tell me that, and I certainly don't need an official label that can be used against me by certain ignorant or unscrupulous people, especially in my workplace.