Why would anyone stay undiagnosed??

Post Reply New Topic

I haven't had the time, not to mention I hate doctors. Still my wife really wants me to. . .

I've got a diagnosis, but considering my AS is strong enough to qualify as a disability, that makes sense.

But let's look at a guy whose main problems happened when he was a kid... and now he's thirty years old and got a job and maybe a family; and his main problems now are trying to figure out why he feels different from everybody else. Why get a diagnosis if you don't NEED services, if the main point of figuring out why you were such a weird kid and eccentric adult is to know yourself better, to communicate better with a spouse, to learn how to manage stress? If you can do that on your own, why get a diagnosis--and would you even be diagnosable, considering that your AS no longer causes significant dysfunction.

Social skills can be learned even by autistic people, kind of like a dyslexic person learning to read. And many people who aren't very strongly autistic--like high-functioning Aspies--learn them on their own to the point that they no longer need services as adults. Oh, it would have been much better if they'd been diagnosed as children and explicitly taught how to cope; but for these people, the sink-or-swim approach, however traumatic, worked--even though it probably took longer to learn than it would have if they'd had any clue how they were different and why.

People with undiagnosed AS--borderline AS, or Asperger's with a gift for imitating NTs, or AS with sympathetic (and possibly equally eccentric) parents teaching them how to deal with the world--can grow up undiagnosed and, by the time they figure out they have Asperger's, no longer need any outside help.

And if you don't need help, why ask for a diagnosis? It's expensive, you have to talk to uppity psychologists, and you wouldn't benefit much from it. In the situation where you're pretty sure you're an Aspie but you don't need any outside help (that can't be provided by friends, family, and the work you can do on your own), I don't think there's any point to getting a diagnosis unless it's extremely important to you to know "for sure". For many people, it's enough to say, "I'm probably an Aspie because I have this particular childhood history and these particular traits; so I'll use the things diagnosed Aspies know about themselves to help me figure out my own challenges."

Percentage wise I must have met someone with AS while out and about but to this day I have never knowingly met anyone with AS.
So I am sure I wouldn’t be able to tell if someone had AS or not
I truly believe only a truly qualified professional who’s field of expertise is adult behavioural problems could tell.
(Hind sight is 20 20 vision, with hindsight we would all know)

Right up to the end I didn’t know I had AS the closet I came was thinking I had ADHD

For me, I was on a mission for years to find out why I constantly got into trouble, why I couldn’t hold together a relationship and I wanted the answer to so many other unanswered questions

Number one being who am I?

I can truly say I was lost but now I am found, but as I have said before pre diagnosis ignorance was bliss though my life was unmanageable towards the end

I'm undiagnosed, still officially in the "not sure if I have it or not" category, though since doing the online questionnaires and reading lots of WP posts, it looks pretty clear that I'm on the spectrum. And in the UK, I believe I could have an official test for free. So why aren't I pestering my GP for a referral?

Once diagnosed positive, I can no longer hide my condition easily from employers and authorities in general. It's a one-way switch, and these authorities don't necessarily have my best interests at heart, and are not necessarily competent.

I've no idea how it would affect my driving rights or insurance (clean license but haven't driven for many years, and a car is on my wish list). Don't wanna be paying top dollar for the rest of my life if I don't have to.

Confession time: They'd do blood tests and I can't guarantee my blood would be entirely free of THC without going through a couple of months of dope-celibacy, which is a boring way to live. And then they'd change the date of the appointment so I had to do it all again. Not that they'd be likely to test for that, but if they did, I'd probably never hear the last of it. My doctor is already trying to use my tobacco smoking as an excuse for ignoring me. NHS is a great free service, the mark of a civilised society, but they're cash-strapped and I suspect they keep their bills down by keeping as many patients away from treatment as they possibly can, by fair means or foul. It's very Machiavellian of me, but I like to have all the bases covered. And I can do without being busted, not that it's at all likely, but again, etc. etc.

I've no idea what "therapies" the shrinks would want me to try. I don't want some lame, one-size-fits-all piece of junk therapy thrown at me just so the government can save money and keep their beautiful low-tax economy that works so well (sarcasm).

The shrinks might mess the test up, or I might mess it up by trying too hard to be NT on the day (I spend most of my life pretending to be NT, so it's something of a habit). I don't know how I'd react to an NT verdict. "hey guys, I've got Aspergers, I know the doc says I haven't but what do they know?" - I've got enough trouble with my doctor insinuating I'm a hypochondriac without giving him something that would look very much like real evidence that I was.

But one of these days, I just might go for a DX, especially if war breaks out in my workplace - I beat the bullies last time but I'm running out of ammunition. And don't let me put anybody else off going for a DX. I know I'm a hardened cynic and that the world is probably much lot nicer than I give it credit for being.

Tough Diamond they have no right to test you for drugs or anything that you didn't agree to so don't worry about that.

Side note:-
I opened another discussion in the adult forum

Drug Problem, These are a few of my favourite things


As I was informed the people with AS are 50% more likely to have substance dependence or abuse substances
I have Polysubstance Dependence which is another diagnosis I cant deny.
Though looking at the replies its far from 50% and in fact I would now question it all together. I am trying to kick the problem but till now it keeps coming back to bite me

To get help I had no choice but to put my hands up to my drug use, it was so obvious anyway it turns out and only I thought it was a secret. Substance abuse makes my AS 10 x worse so to enable me to work on my primary problem I had to fix my secondary first

Thanks for this I thought there must be a privacy law or something that stops them.

http://www.nhsdirect.nhs.uk/articles/ar ... ectionId=7

What aroused my suspicions was the last paragraph on that Web page:

It made me wonder what they wanted to test blood for

probably to rule out some conditions that have similar symptomps to AS but might be diagnosed through a blood test- whatever they might be, maybe some tropical fevers...?

I had a professional who specializes in Asperger's interview me and give me her opinion that I am an aspie. That is as close as I am gonna get to a diagnosis, and I might as well take it, and say that I am diagnosed. The lady said that I could. She said that If she had had any doubts, she would have reccommended the tests...which are really expensive.....

My life is pretty good, but I have alot of difficulties with a lot of things, and have had my whole life....

I am glad that I am diagnosed, because I could not call myself an aspie before..there was that shadow of a doubt...I have too many things in common with the spectrum to not be on it (and it runs in my family)...but didn't know where I fit...So i guessed that maybe it was PDD-NOS....so I am glad to know that I am most likely an aspie...

I'm having a blood sample taken, because they study the genetics of PDDs where I was diagnosed last. But it not used in diagnosis. If the blood test was for this purpose you would have been told about it. More likely the blood test was for a general health check as part of you diagnosis.

Since I am on a journey of self-discovery, whether or not I would actually receive a diagnosis of AS is irrelevant to me. On this site I've found traits that I have in common with others; I am gaining insight into myself and, at the same time, learning valuable coping skills. At 38, I think this is pretty much what I need.

There is little support for adults if any at all here, and due to my nationality none that I would qualify for. There is therefore absolutely no care or support that I would get, and thus no practical benefits. The downsides of getting diagnosed:

-In many people's minds, it's going to be 'diagnosed AS = certified lunatic/idiot/freak/defective/weirdo/creep', not least in the minds of employers and peers. Unless I win the lottery, as long as I need to eat to live this isn't something I can just ignore.
-Difficulty getting health insurance. Not an issue while I'm in Britain, but I have to think longer term than that.

I am getting tired of this hastle

Last edited by LiendaBalla on 17 Oct 2008, 11:01 am, edited 1 time in total.

^^^^^ That too.

Well if they are gonna think that, they are gonna think that anyway.

I imagine that a primary stumbling block would be the cost of psychological counseling and referrals one would need to finally reach a diagnosis. I have family members (a cousin and an aunt) who would like to get checked out for AS (or other possible issues) but their insurance doesn't cover this kind of care. I had MedicAid at the time I sought these services and the gov't footed the bill, but for a lot of people, this isn't an option. Some people make too much money on paper to qualify for government-sponsored health care and can't afford to buy insurance, either, so they're kind of stuck in between a rock and a hard place, so to speak.