Negatives/Benefits of diagnosis?

Hey all,

I've posted in the past on these forums, and have been giving quite a bit more thought, lately, about AS. To kinda bring people up to speed a bit, there's a person who I feel I can identify well with, who has AS. The more I'm getting to know her, and the more we relate/talk, the more I'm realizing how similar we are. Since she's been diagnosed with AS in the past, I've been giving more thought about it myself. I've taken a few "online tests", which kinda put me borderline-ish (129 on the aspie-quiz, took another quiz to have it suggest AS as well), with some very strong traits. In a way, knowing her has made me question a bit more about my own tendencies...because I've always been curious why I don't seem to live the life others do. e.g., I'm 31, never really had many friends and even now have only a few close friends (that I sometimes talk to only a few times a week). I do tend to live by a schedule, as in..I hate being out after around 6 PM every night (so I go home the same time of night). I have my own interests that I really focus on. I believe I do express a fair amount of emotion, but then again that's my own perspective. I do find sarcasm very difficult to grasp, even now...really evident in my current job where people use sarcasm a lot. Sadly, most of the time they have to tell me they are only kidding (e.g. I ask for some of the candy my boss says, he says "no", and I believe him...he says he was kidding and I can have some kinda thing).

I am not really looking for a diagnosis or anything...not from these forums, but..I'm curious, why bother going and getting diagnosed at all? Part of me feels that at least, perhaps, it's confirmation about how I am, and how I have been my whole life. A lot of these traits just "make sense" now, where I've continuely tried to change myself to be more like others in the past. Yeah...I've really spent years, for example, trying to socialize better (reading books on nonverbals, having lunches 1-1 with people who can help me, trying to go out on group gatherings). Part of the feeling I have about diagnosis also makes me wonder "so what?", if I have it I have it, if I don't I don't...that maybe I'm just my own person and should be happy with myself and not worry about it.

That's where I could use some help with. For those who went in to get diagnosed, was it worthwhile? Big "weight" lifted off one's shoulders? Did it really matter in the end?

My only feeling is, perhaps, this'll explain a hell of a lot about my life, but then again does it matter?

It depends. Even with difficulties if you're reasonably happy in life there's really no need to have a diagnosis. Some people are just curious and want to know for sure (or as much as possible - professionals don't always get it right!), some feel relieved and somewhat unburdened, and perhaps for others there's also disability benefits or even just Aspie groups to attend to share in the experience(s) - anything that helps (those were popular enough in my old haunt but still, Aspie groups seem like an oxymoron!). There are plenty of forum users here that have never been officially diagnosed but are happy enough thinking they have it. As I've written before an old mod here was never diagnosed but felt better associating himself with it unofficially.

Personally speaking I had a difficult childhood, since Asperger's was not really recognised in schools until the age I left, and so it wasn't picked up on. I'm sure you can imagine. I'd finally had enough, sought help for 'stresses' and the like with my GP and the ball started rolling from there quite naturally. I certainly didn't need to go and have an actual diagnosis but I just wanted to KNOW there was a reason for it; that it wasn't just me and there were others in a similar situation. As a by-product it did also give me a slight safely cushion; that I (or others) could explain why I felt so uncomfortable, although it's a double-edged sword as it could easily become an excuse to act badly, or get out of things that were undesirable. Nobody should seek diagnosis for that; it really isn't healthy and the person in question will just go backwards in life.

Of course, some Aspies (or maybe-Aspies) don't want a diagnosis recorded, because they feel uncomfortable having it documented and reckon it may impact on other areas in their life. That's their prerogative and I understand it totally. Indeed, when I moved country (UK to USA) I was worried I'd done the wrong thing with diagnosis and it'd harm my chances. At the medical in London prior I had to mention it but thankfully it turned out to be a non-issue, but still, it makes you think.

The childhood thing is an interesting point. There was a time in my middle school, where the school felt I needed therapy for my social issues..and met with someone for a bit. My father really was unhappy about this and it didn't last long.

AS wasn't recognized when I was in school either.

Kinda talked to my father about AS a little, and he .. wasn't the most positively responsive about it.

That's where I could use some help with. For those who went in to get diagnosed, was it worthwhile? Big "weight" lifted off one's shoulders? Did it really matter in the end?

My only feeling is, perhaps, this'll explain a hell of a lot about my life, but then again does it matter?

This is something I wondered about in advance of going to be assessed (and I did receive a diagnosis as a result of it). For me, learning about AS and then realising that pretty much everything applied to me (especially as a child) meant that I HAD to know one way or the other. Does it matter? To me yes, but everyone is different, so it's a very personal and subjective thing.

As a result of the realisation and assessment, I spent nearly 6 months in a state of horrible introspection, but I have come out the other side (I think/hope) feeling as if I know myself much better, and that some of my peculiarities are there for a reason. The clincher for me was making sense of my childhood and all the anxieties that went with it ... too much to go into here, but suffice to say that now, in my early 40s (I lied in my early post - goodness knows why ... I think I was afraid of making myself easily identifiable), for the first time in my life I have a feeling of acceptance of all that has come before - I am actually starting to begin to like myself too. For me that is priceless

it's such a difficult question. i think i'm too at that point of wanting to know for sure or whether the diagnosis itself is so important to me. right now, i'm a little worried about expense, because i have so many upcoming expenses and i'm not sure i can handle it.

i think on the one hand, there is the peace of knowing one way or the other. on the other---what does the specific diagnosis matter if you know what specific issues need to be addressed and what you can live comfortably with and what you can't? for instance, if you know that you have difficulty reading social cues and feel anxious around people as a result, does it matter if the resource you find specifically demands that you have asperger's or not? (if therapy x works for helping with compensation skills and addressing anxiety, then does it matter whether it's specified for someone with a particular neuro-type?)

the best thing i'm finding is to keep reading and seeing what fits. it helps me to clarify what i need, what i don't need, what i appreciate about my specific set of traits, what i don't.

i recently had a discussion with a therapist who doesn't work specifically with asperger's (or non-verbal learning disability, which i have a difficult time now denying that i have and which is similar). i brought her a video of a woman (nalo hopkins) describing her nld, and the difficulty with social cues and sensory issues, and my therapist was very open to helping me find some compensatory things to help. and i was listened to, but first i had to know specifically what i wanted to communicate: that i have this trait, that i have that one, and that they're most likely specifically due to 'wiring,' not past trauma. (there is enough of that to work on, there isn't any point in getting the issues confused.)

so i think if you know what your strengths and challenges are, it may be possible to work with them without diagnosis, as long as you don't slip in and out of a place of doubting your own perceptions.

Thanks for the replies.

It gave me a lot to think about. There was one comment i really found interesting:

as long as you don't slip in and out of a place of doubting your own perceptions.

This is a very interesting idea from my POV. I think, part of my history doesn't want to answer, but more ignore the question. Part of me also recognizes how much I've spent in my life trying to change and fit in with what I determine at a time to being a problem. For example, about 4 years ago I realized how much of a problem I have with social issues that I tried to "improve". About a year ago I started questioning if I'm really happy with doing that. Part of me really feels that, perhaps, I spent so much time trying to generate a false self. Especially in the idea of progression up the "social ladder". e.g. about 6 months ago I came really close to getting a job where...I wouldn't have enjoyed it, but decided to try for it because it was somehow the "right" thing to do, but not any way I can actually justify.

So...doubting my perceptions. Honestly, at times I do. I guess that's why I'm really starting to question how I've built up myself and if maybe I've been trying to fight against who I've been because I always need to improve.

maybe you could read books and materials by people with asperger's and see what fits for you and what doesn't. (or of course, forums and groups. i tend naturally to mention books first, because i'm a book junkie.) if by improving socially, you think you've left behind parts of yourself that you value, then it could be a problem. if not, and it makes your life richer, then it's an improvement. that's my thought.

there's a book called 'journal of best practices' by a man with asperger's. his name is david finch (not the comic book artist, david finch). i think he writes a lot about what you're talking about. on the one hand, some of his compensatory mechanisms buried who he was. for instance, he took a job that had to do with sales, and he took the job largely because he felt it was the right step for his career at that time, not because it was something that naturally fit him (just as you said.) he came up with a 'salesman persona' in order to survive, and brought the persona home. it produced difficulties, because it didn't fit with the situation.

but then again, living only with what fits naturally and is comfortable can in some cases lead to stagnation. (i know this, because that's where i am ) so possibly it's a matter of weighing whether in the end, the choice is more fulfilling or not.

on the other hand, he felt he needed to learn to 'speak nt,' because his marriage was suffering without it. he talks about the skills he learned to help him communicate in an nt setting without stepping on toes. this is helping with a relationship he finds important and which he values.

i don't think there's anything wrong with developing compensatory skills, as long as they fit who your values and enrich the situation.

i doubt myself a lot, because i've been taught not to trust my perceptions---so sometimes i go into denial that i'm of a different neuro-type from the norm, even though, even as a child, i understood that i processed the world differently. i just didn't have the terms to express this.

i think it's important to keep sight of this. for some people, a diagnosis helps. for others, they can consistently know that they are asperger's (or nld, or hfa, or pdd-nos, etc.), without the diagnosis. deciding which way works better, or fits, could be a big part of things.