To the undiagnosed aspies: Is diagnosis important to you?

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Before I got a diagnosis I never heard of aspergers syndrome and when my princes trust instructor asked my social worker to get me "checked" I instantly refused because I didn't know what it was and it sounded horrible. but then I agreed and got referred free from my GP and there was a free spot in the clinic or w/e it was within 6 weeks and I went twice and got diagnosed with aspergers. Its just a label and nothing will change whether you get an official diagnosis or not. I've researched what it is since then and i can't disagree

If your in the UK just make an appointment to a local GP and take the relevant information and they'll refer you free to a place where you can get it confirmed or not (you have to wait for a space which took 6 weeks for me). people moan about the NHS but it just always means money is not a problem

Diagnosis is very important to me. I don't know how people can stand not knowing one way or the other; the seemingly endless void between the psychiatrist first telling me about AS and the actual date of my assessment is the most intense period I've had in my life so far. Having that confirmation, if I get it, will allow me to sit down and look at my life with an actual, recognised framework rather than vague suspicions. I can't read self-help books yet because I feel like a fraud. I even feel uncomfortable attending support groups or accepting ASD-tailored help. Having a diagnosis will not only give me access to the kind of support I need; it will make me feel like I deserve to accept it.

I have just recently started to strongly believe that I have Asperger's. Since I have had that form of epiphany, things have started falling into place, everything is making more sense. My first reaction was that I was not exactly over the moon about it, because all of a sudden I had the label of a syndrome attached to my identity.
Now though, I am actually rather pleased that there is finally an explanation for my "strange" behaviours and reactions, and I find myself going back to how I felt before, which was knowing that I was different and being happy about it. At a very high cost of not belonging with the masses, at least I am not a sheep in this society.
In effect, I would only care to be officially labeled if that would help me get some kind of disability allowance that I could use while I can't find a job.

I self-diagnosed about two years ago. I looked up AS because a child I know was being considered for that diagnosis and I didn't really know what it was. The only other time I had come across it was in Augustine Burroughs book, Running With Scissors, in which he describes his brother getting an AS diagnosis (the now famous Aspie John Elder Roberson). Anyway, he's a male, train spotter type Aspie and that description did not resonate with me. It was not until I looked further after the boy I know was being assessed for it. Once I read a full description, especially how it affects women, BOOM, I saw myself and understood so many things about my life: why normal type friendship has been hard to impossible for me, my obsessions with certain research topics, my love of listening or playing the same pieces of music over and over, my oblivion to popular culture, hate of gossip, sloppy dress style, poor facial recognition, on and on.

It also made other members of my family make sense and helped me forgive them for their difficult personality traits that I had been taking personally.

Although I have no doubt I, and my family, are Aspies, I do want and seek a formal diagnosis. I prefer to think of it as "recognition" rather than diagnosis since I refuse to see my peculiarities as a disease and see many of my traits as positive - especially a complete disinclination to be cruel, a non-judgmental attitude towards differences in people and a love of the truth. But I am a very empirical thinker, and as such, seek independent validation.
Also, I am applying for disability for PTSD and the AS is a major contribution to why I can not just go out and get a job.

Hm - I just made a comment in this thread that seems to also serve to answer this thread's question.

It was very important to me to have a diagnosis. I wanted a professional's opinion, as well as to see the results of extensive testing. I also found out, from a family member, that it was strongly suggested that I be tested as a child. My father, who was later diagnosed, had declined, stating that such things did not exist. He learned how wrong he was when two of my cousins were diagnosed with lower functioning autism.

I did not feel comfortable self-diagnosing. While I'm aware of what's going on with me, I know that wiki-diagnosing is all too common. I don't just mean with wikipedia, but with other sites and quizzes as well.I know it is too easy to sway a test result when one wants to fit something. I also believe many people have some traits because of the common lifestyle we have today. More and more individuals are spending time on the computer, rather than interacting face to face. I believe this is detrimental to social skills, even for a neuro-typical, especially if they're naturally introverted.

So, I sought out a professional that was experienced in diagnosing adults. I also had the added benefit of finding out my areas of strength and weakness from the test results.

I strongly considered getting an official diagnosis, but I did everything unofficial because I didn't want a label in my records that would lead medical people to discount me and my health issues any more than they have. Every test there is says I'm an aspie - they just show different "levels" of it due to how a question was put (like, if I spent 15 years learning how to not flinch when people touch me, does that mean I don't mind it anymore, or that I mind it but I've learned a skill set that allows me to fake not minding it). It only takes a little bit of something for my body to react (like half a Tylenol works for me, while everyone else takes 2, and 1 cup of coffee will wire me for lights for a day and a half), but its been hard to get doctors to acknowledge that. I thought they might if I got an official aspie label, but I've seen no evidence to it. In fact, they just seemed to use that as an excuse to not really listen to their aspie patient(s).

So until I find a reason for every corporate health insurance and government database on the planet to have another tag to stick on my forehead, I'm not officially "telling".

That being said, figuring out what I "am" was hugely helpful in my life. I'm 50 now, and I wish I had known about it when I was a kid (though back then no one considered or knew of it). Would have saved me a lot of grief and a lot of pain at home and in school.

I'm not terribly worried about getting a diagnosis, but it'd be nice to know for sure. Once I'm insured again, I'll likely pursue an evaluation out of curiosity more than anything else (granted that's still possible... I don't understand all the implications of the DSM-V yet, and haven't had time to research it).

I only recently came to the conclusion that AS was one of a handful of classifications that might fit me -- my psychiatrist in Florida had suggested a number of times that I should get evaluated and I figured it could wait, or shrugged it off each time. Conversely, a friend of mine had AS and we used to talk a lot, and she was one of only a few people who actually understood me, and I her, so some recent introspection led me to research the disorder and find that, indeed, a lot of the symptoms and characteristics resonate with me. And now I'm here, lurking and reading mostly.

I'm not absolutely positive I have it, but I'm pretty sure there's something "wrong" with me, so I would like to get an appointment with a psychiatrist. And if I did get a diagnosis to explain why I feel so distant, it would probably help me dealing with being so distant.

what caused me to come to the conclusion - i was diagnosed by a fellow aspie. said he knew right away from my closed body language and that confused, faraway, lost look in my eyes.
i believed him because i've been pacing back and forth and flapping my fingers ever since age six, because i was extremely hyper in my youth, because i can't make friends to save my life, because i have terrible motor skills, can't read expressions, and my mother said i didn't recognize my own father at age one, just because he grew a beard. i still have a horrible time remembering people. i've tried several quizes online and they all said i'm aspie. and i've been concentrating on the shape of the words instead their meaning as a child, noise anxiety and more...
is diagnosis important to me - very much, just can't afford it right now. can't wait, though, and will get one soon as i can. because i thought i was a freak all my life and didn't understand why i did the things i did, why i felt the way i did, why i was always an outcast. this explained everything and changed my self esteem completely and now i see myself in a different light. wish someone would've told me when i was a kid.
if i find out i don't have it i'll be back to where i started, even worse. if there's no explanation then i'm lost in a world that doesn't make sense and i don't know who i am.

I'm revisiting this thread after a year, and my answers have changed a bit. I now think that the time, effort, and expense to find someone in this area who is qualified to evaluate adults is more than I'm willing to put in. The truth is that there is not much that a diagnosis will get me. The criteria are not determined objectively, but are simply a list of symptoms that are selected by a committee. Different experts interpret things differently. The proposed DSM-V will change, and narrow the requirements, so that I may no longer qualify. For now, I will simply accept my self diagnosis. I know that there is something that is different about me. It's very obvious. If I have or do not have a label, nothing will change. I won't suddenly develop social skills. I won't suddenly develop a connection to the people around me. If they can ever come up with an objective test, or if they find something that elevates a syndrome to something more specific, I may change my mind.