Why would anyone stay undiagnosed??

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I just had this conversation with my doctor last night. She asked me why I wanted a "formal" diagnosis and what I hoped to gain from it.
For me, it is a very personal reason. As I told her I need to know that I'm not just the prick almost everyone thinks I am; that there has to be more to the past 40-ish years of people thinking I'm just not trying hard enough- the list could go on and on. Ultimately, it will help the last 40 years make just a bit more sense.
I recognize that outside of my personal reasons there is very little to be gained from a formal diagnosis. Nothing will really change except how I feel about myself.
I would imagine for many people that a diagnosis isn't worth the paper it eventually gets printed on. I can understand that. It's a personal choice.

ETA: And yes, it can be a very costly piece of paper. I am spending upwards of $500 to my psych doctor for the formal evaluation process including interview, standardized IQ, MMPI and other tests. I am borrowing some of that money from my parents and my partner is kicking in some as well.

I was given the quote of $2000 if I wanted to take the tests...

WOW! Search for another doctor! I was put into contact with a doctor who specializes in autism/Asperger's in adolescents and adults. Her day job is as a school counselor. At night she works with a group of doctors to help pay for her PhD. Her prices are lower than those of her peers. Check into alternatives. Or even check into nearby cities where the overall prices may be lower due to the fiscal demographics.

I suppose if I ever do go for the DX, if they want a blood sample I'll ask them what they want to test for. If they won't tell me, I guess I could tell them to come back with the syringe when they've got an answer. It's beginning to sound a little like one of those situations where I may need to be less placid and obliging that I care to be, but I know how to be stubborn.

I'm 22, and have managed well enough on my own. Which is to say very poorly.

To be honest, I don't think I'd be able to get a diagnosis were I to sit through the proper tests. I've steadily eliminated many of the "wierd" parts of me, and have worked through some difficulties on my own. I pass for normal, I don't stand out. I "stim" steadily throughout the day, but there's very few things that actually would stand out to anyone paying attention. School was a nightmare, but do I go to school anymore? No. No more misunderstanding concepts, no more of that junk to worry about. Taking things "literally" was the worst problem, and that's mostly gone. Not being able to "hear" anybody was a big problem (having perfect hearing, just not understanding the words spoken), but that's only an occasional problem. Social gaffes, well, that's what understanding friends are for. And now that I'm an adult, I don't have to wear things I don't want to, I don't have to eat on a schedule, and can pretty much control what comes at me, and the "flow" of my life. Anxiety is still a major problem, if I were to seek help, I'd go in that direction.

3rd through 8th grades were not learning experiences for me. 9th through 12th had me THINKING I had it under control. Which I didn't. Imagine walking in a fog. Actually, imagine downtown Tokyo, or the most foreign place ever imagined, were there's a system you have to stick to in order to survive.

The person who assessed me seemed to indicate that I neednt bother taking the tests. She thought I was an aspie after a brief interview.

What exactly are the benefits of being officially diagnosed as an adult? As far as I know, where I live you don't get anything just for having a diagnosis.

Why indeed? It's probably more consistent with reality to ask why would someone get a diagnosis when it will make little or no difference to their continued non-receipt of any care and support needed.

Indeed.

If you have the information, how could you not know?


I have recognised people with autistic spectrum disorders as being 'on-spectrum' before the information was explicated. I also know of a girl I went to school with who must have been on-spectrum (although I knew nothing about it then). Back then if she had a dx it would likely have been PPD-NOS or perhaps NLD.

ACTUALLY, you will notice that lately I have NOT posted between 8am and 5pm. WHY? So my boss will be less likely to suspect. In the US, it is ILLEGAL to release such info without a court order, so I am not so worried.

BTW I DID get in a car crash going to an ASPIE meeting! I DO meet a friend from time to time in indiana and SHE has AS also, and is NOT shy about it! I HAVE bought books on AS. I spoke knowledgeably to four people at work about AS, and showed interest in their kids diagnosis of AS. Frankly, I am almost surprised nobody asked me where I was!

So it isn't like I would deny it, etc...

A few reasons... diagnosis can affect insurance availability and rates as a pre-existing condition; there is an absolute lack of individuals in my area who have experience with ASDs, much less diagnostic work with adults - I would imagine that is occurs elsewhere as well; sheer cost of the appointments when one does not have insurance; for some, perhaps a distrust of the field due to previous bad experiences. I learned about it through my son's diagnosis, and the understanding gained has helped me immensely... and in my current situation, it isn't a viable option. I have pursued finding someone qualified to no avail, so until I relocate and have myself situated, the only one who can help me is me.


M.

getting diagnosed has opened up lots of help and councilling to me....plus i get a crap load more money off they government....

score?

as I have stated before...I like to just be able to tell people without feeling like I am lying.
I often wig out in public.
I want to tell the ladies I work with at the bank...'cause I always have such a hard time when I go there...

It is difficult to get a diagnosis once you are an adult, especially if you are a female. I know that i fit under the AS diagnoses criteria, but it is difficult, in my area, to find a Dr. who will evaluate anyone over 18 years old. kind of like it all goes away when you reach 18, NOT.

i like having my card which says "ATTENTION...THIS PERSON AS AN AUTISTIC SPECTRUM DISORDER"...i could probably punch a copper in the face and get away with it XD

I'm betting the biggest reason is that they don't actually need help from the government to live "independently". Well, I know I wouldn't bother with a diagnosis if I didn't have difficulties fitting into society (I'd be in the military).

And that's exactly what I hate about it.

Same here. And I could be buddies with these people for years before they told me that they were aspie. I suppose it takes one to know one.


I hate that. the whole not covering "pre-existing conditions" thing can jump off a bridge and die.


I also wish more people realized that it wasn't something that just affected kids or just boys. I'm also a female aspie. I got my diagnosis at 17.