Thinking about asking for a diagnosis

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This will be sort of rambling so the quick version is that I'm a woman in her late twenties who has been convinced for quite some time something isn't quite right. I believe that I may have AS but am unsure of where to go from here - and whether I want to. I'm sure a lot of people here have been where I am now so I thought I'd summarise my situation and see if anyone has any advice...

I was always quiet and withdrawn as a child. A lot of my behaviour and habits point to classic AS as far as I can see it now, but that wasn't even on peoples' radars where I grew up. I managed though, until High School. I hated school, and would often leave partway through the day without permission because I just couldn't handle it anymore. I spent hours on my own crying in the toilets because I didn't want to go to lessons and didn't know how to explain why. I always got great marks and was liked by teachers (with the inevitable school reports criticising my shyness and unwillingness to talk in class but offering no complaints on my actual accomplishments), so I couldn't work out why it felt so unbearable. People often wanted to be my friend, but I was utterly disinterested, smiling terrifiedly to their faces but refusing to talk to them or go anywhere with them.

Eventually I gave up and stopped going to school at all the moment I was legally old enough to quit. My parents tried to force me with explosive results and I eventually had what I can only describe as a massive breakdown. For four years I refused to leave my room except for essentials. I talked to nobody except my cat. At first I just cried all day, in between sleeping, but gradually I started reading (a passion since childhood) and taught myself many things.

I was awful to my parents. I bit them if they tried to touch me, and despite being literally dragged to a counsellor I refused to go after the first session. I couldn't explain why I couldn't go. I wanted to get better, but I wanted to die before I wanted to talk to someone about myself. I was taken to a doctor, but told that because I didn't have loss of appetite I wasn't suffering from depression and was just obstinate. The disbelief that I had a problem at all was a big blow to my confidence.

Eventually in between the reading I started thinking about my life, and slowly managed to build up layers of defenses to deal with the world by calculating every possibility and forming a strategy to deal with it minimally. One day, I left my room and started applying for jobs. My family was mystified. I eventually got work, and despite spending every lunchtime crying in the toilets or outside on a long walk, just like school, I persevered. I wanted to move out and control every aspect of my life myself. Very slowly I built a new life, found some very introverted friends - my first ever - and put my breakdown behind me. But inside, I was still the same.

After that I began to realise that this was a step past tolerable introversion. I had seen autism in documentaries and in real life and felt something of an affinity for the people who had it - a little hard to explain. It felt *right* despite not checking every box. Reading up over the years I found out more about AS, and that does fit my general symptoms uncannily perfectly.

I have some wonderfully understanding friends now, for the first time in my life, who give me space and take special care to avoid putting pressure on me socially. For example, instead of asking me something when I might be stressed, they will send me an e-mail or text to my phone so I can read it and respond despite being right there, and instead of meeting up with me they will talk to me over the internet where possible so I can time out whenever I feel panicked. My partner is wonderful and doesn't question my quirks at all, he just calmly deals with me. Truthfully with all of the years of convoluted planning and avoidance of "dangerous" situations I think I am coping very well now, and don't need a diagnosis for help at this stage. But the reason I am still considering it is personal. I want to know what happened. I want to know why I'm the way I am, and be able to talk with other people whose thoughts are on the same page as an equal, without feeling like I might be a pretender. I want personal validation that I'm a normal human being like the rest of you, just not NT - far more comforting than my lifelong hypothesis that I'm completely screwed up.

I still want to know why I had that breakdown. It was shrugged off utterly by that doctor before, but I am sure it's not right to lose a large chunk of my life like that and I want to know what happened. There was no trigger. I just stopped being able to cope. I manage now, but I want to understand to be able to avoid having to go through anything like that ever again if my careful forward planning ever lets me down.

I've had job interviews before where my psychological history has come up, and been able to muddle through them with some bluffing due to never having any formal diagnosis before. So I'm concerned that with this on my record I might find that I lose some of my freedom to pass myself as a NT person. That sounds a bit weird, perhaps. I go to great lengths in my daily life to act as naturally as I possibly can but still end up hurting people who don't understand my problems. My boss has an unspoken understanding of the situation and lets me opt out of meetings (I always do) without holding it against me. I won't be lucky enough to have this job forever, though.

But even if it shuts off some options in my career, the potential gains feel far greater. Nothing tangible save a greater understanding of myself and some answers for my poor family and friends to explain why certain things have happened the way they have. I suppose from my tone, I've already decided. I just think I should still post this here to see if anyone has anything to add from their own experiences...

Thank you, if you read this far.

Kismet

I'm in a similar situation in some respects; I have a reasonably safe job and an understanding boss, and don't need a diagnosis for anything other than peace of mind. I tick most of the AS boxes, and it's the first thing that actually covers everything (a lot more than the various iterations of depression / anxiety that I'm presently diagnosed with, ho-hum), so it'd be nice to have someone professional agree, but that's about as far as it goes. I don't have an especially good relationship with my GP, so I doubt I'll be asking for a referral any time soon. But yes, for what it's worth I think you should ask for a diagnosis.

*grin* First poster get-together.

I'm debating the getting of a diagnosis with myself too. A large part of why I want one is because of that "There was no trigger", as you experienced. One day I thought i was cruising along moderately fine and then suddenly I started messing up two big projects. I just couldn't finish them. Then i just stopped going outside (except when i HAD to get groceries, and that was typically a near run to and Through the store), a while later i stopped answering the IM's, the phone and ofcourse lost some of the tenuous friendships i managed to keep alive.

I just shut down for 2 years, I lost All of my interests and i've fallen into every substance-abuse trap there is short of the hard-drugs. I cleaned up, fixed myself up and eventually I got my interests back, but I still don't know why I shut down in the first place.

I've known I'm different for what feels like forever, and I struggled for a long time; and I think what saved me were the first people halfway through highschool that just accepted me; we played a cardgame every break, always at the same place, in the same arrangement. Looking back to that we just "got" eachother, without really knowing why (i still don't know, not even looking back. I'm sure I was the only aspie in that group of 4).

On the web I found an outlet to relax in; in the real world i tried to fit in to. In mud's / mmo's i created a character that i use the express the real me with. Oddly enough, where I think the real-world tolerates me, I know that the online world accepts (and even misses) me in online games.

The conflict for me about getting a diagnosis, lies in:
- I want to know what happened and Why.

Why I don't want a diagnosis:
- As long as i can remember I've been trying to fit in; because I'm contrary to the norm and the norm expects the norm. It's part of my life.
- I am who I am. In real-life I do my best to fit in and I like to think I've more or less succeeded; Job, House, Ex (2 gf's, not wife), Hobbies and a grudging acceptance of self.

The mother of the girl I was involved in last (8 years ago ) mentioned a while ago to the girl that i might have Asperger's Syndrome. As I've always known something was out of order, when the girl told me I checked it out because, well, you know. So, i checked up on it. After reading the first articles (wikipedia, hundreds of repetitions of DSM-IV), I've never fought an idea as much as that. To my mind, that was not me, No Way; I'm Not Autistic.

I let the matter drop for a while, due to another interesting topic coming into view, but got back to it two weeks ago. (The company i worked for was declared bankrupt). Sleep, wake up, get coffee, read/watch news, shower, do a search for Asperger.
One week ago I found the YMBAAI list, I've never laughed so much. So many of the lines there just "fit" with how I experience things.

BUT, do I really want the Asperger badge? People's tendencies to peg others down into predefined boxes is something i've always resisted. No-one is just a box, a box is too simplistic (resists going into the characteristic/people matrix-graph idea).

I'm just unsure if I've accepted who I am, or if I want yet another badge I have to fight/explain imprinted on my by a society (which i still don't get, and even when they know what an Aspie is they still won't "get"/"grok" me) that I so desperately want to be a part of.


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For everyone else; if i anywhere made no sense whatsoever: Hi! It'll probably happen again if you'll allow me.

Kismet, I'd like to thank you for your post. You've given me an opening to express myself that I couldn't have if you hadn't shared your experience. Like you perhaps, I just don't know and would love to read experiences of others (should they want to share) when faced with this one.

In my case, I was diagnosed later in life, I was oficially diagnosed a few weeks after I first heard about AS. I already knew I had it, it was so obvious, and the diagnosis worked as a re-affirmation of what I already knew, nothing more ...I would suggest you to try to get a diagnosis by a proffesional, but I don´t think it´s really neccesary ..just my 2 cents

While I dont have the ability to fix everything in your life, I can tell you that I understand where you come from. I have a somewhat similar experience, having been born 22 years ago, there was no explanation for people like me. My mother didnt try therapy with me, she just assumed that all my problems were my fault. According to my mother I am lazy, selfish, misanthropic, rude, and obstinate. So, I understand what it is like to have people assume the worst. I didnt have a break down at school (well, at least not a major one), and managed to get through, but I understand what you say about wanting to just give up. There was many times in school that I would just shut out the world, and try to avoid the human contact as much as I could.

I didnt think of myself as autistic because all the information I knew about them mentioned mental retardation as a criteria. But I did know that something about me was definitely not right. About 6 months ago I stumbled across asperger's syndrome on wikipedia, and it felt like I was reading my life story. Since then I have done a good bit of research, and while I dont have an official diagnosis, I do feel as though learning about AS has really helped me to have a better understanding of both myself, and others.

You might want to read a book called: aspergers from the inside out. It was written by an adult who found out he had AS in his 30s. It is written for other people who found about their AS in adulthood. And I feel it is full of good advice.

The biggest advice I can give is very simple:

First: You cannot change the past, and you cannot undue what has been done. But you can change what you do today. You need to put your past behind you. Not necessarily forget what has been done, but at least forgive the past, and move forward. If you sit around thinking about what you could have done differently, being mad yourself, or angry at around you for what they did in the past then you wont be able to move on.

Second: Accept the fact that normal is not necessarily better. Too often you hear people complain about what they are given. People will complain they are too short, too fat, not smart enough, bad at sports, autistic, etc. If you compare yourself to others then you will inevitably find somebody who is better then you in one area. The key to being content with your life is to accept who you are and not wish you were somebody else. If you dont like being social then thats just a part of who you are, not something wrong which needs to be fixed. Self improvement is a noble goal, and worth everybody's time. But changing who you are in order to fit societies expectations of normal wont work for you, and after you have another break down from the stress wont work for anybody.

As for getting a diagnosis, I am afraid I have no advice since I haven't done that myself yet. But please be aware that jobs are not allowed to look at your psychology information without your permission, so nobody will know you have AS unless you tell them. Getting a diagnosis in adulthood is done mostly for your own personal validation, to prove that you are not crazy. It may also be useful for explaining odd behavior in the unlikely event you have problems later. For example, trying to tell the airport security that you freaked out due to a loud noise will work better if they can call your psychologist and get conformation that you have AS. Otherwise you may not be believed, which can be problematic.

P.S. you may want to post this on the general forum if you want more responses.

I just read the other responses, and I would have to agree with sanndr. I know that I dont really fit in too well in reality, but playing online multi-player games is were I am able to be myself, and have friends without all the unpleasantness associated with social contact. All the communication is written, so I can 'talk' without having my words come out jumbled and incorrect, there is no facial expressions, or inflections in voices to interpret. And everybody gets on the game to have a good time, so the people are generally nicer. While most people view online games as a waste of time, its the best thing I have found to let me be myself and have friends who accept me.

If you ever pick up a game called FFXI, or eve-online, send me a PM and I will meet you in game.

Thank you for those thoughts. I have read every word several times now and am so glad people are being warm to me.

I am going to try to book an appointment to see my GP and find out where to go next. Now that I've got this far I want to see it through - whether to the end or to when I lose my confidence in it I don't know yet, but I'll do my best.

It is interesting that a few people mentioned online gaming. The online world has been like a lifeline to me ever since I discovered it, where I can experience being "around" people but take a step back and turn off my computer whenever it gets too stressful. I spent a long time recently trying to figure out how to get to know some new people on the internet, but even when I'd find groups of people with very similar interests somehow it felt too hard to try to make friends and I'd disappear from the community wordlessly. I used to play FFXI, but then I joined a linkshell and started to find I was dreading logging on, so I quit despite still liking the game itself a lot. Now I play another online game instead and am careful not to try to overestimate myself. I find it quite fun to party with strangers so long as I set it up to be short term and low on communications. I particularly like playing with people who don't speak the same language as I do aside from being able to give direct instructions - then they accept me to perform my assigned role but don't try to make friends (something I liked about FFXI too).

It feels easier talking to people who don't necessarily need my quirks explaining from scratch every time I say something awkward. Thank you.

Kismet

Michael John Carley, Asperger's from the Inside Out; Perigee Book (2008)
ISBN-13: 978-0-399-53397-6

Excellent, also provides a sort of self-help program for dilemmas you will face post-diagnosis; and a sort of program for self-help psycho-cleansing, I would call it, based on his experiences organizing AS-meetings.

He is the executive director of GRASP.

I aim to start a GRASP group in Netherland, but that will have to wait until I get my own living situation back up to a shade of normalcy.

MJC will not tell you what to do in such circumstances - the book will provide a good overview of the dilemmas you face, so you can make a better, clearer choice.

My personal view: if you want to be sure (you cannot) then get a dx. You owe it to yourself. If not getting this officially stamped on your forehead prevents you from finally having ALL THOSE WHYs answered and the liberation that understanding brings - I don't think there is even a choice.

If you're happy without, why bother.

I needed ANY diagnosis to get into the social welfare system; only self-identified on WP two weeks after going to the GP on the basis of hypothesized schixoid or schizotypal pd. AS, in my view, was the best of both worlds - a valid and true lable of disability AND a clean bill of health.

There's lots more to be said on points raised earlier in the thread, and I plan to respond (if still relevant), but not just now... (You may PM me to remind me if I haven't been back in let's say a week, max.)

Believe me in one thing (and believe this from one dx'ed much later than you ducklings) the more patient you are with all this and yourself, the richer will be this time of bewildering and amazing discovery.

You have all the time in the world - use some of it & simply enjoy.

Executive Dysfunction? I'll waste My time - You waste yours!

(I'm considering that for the signature.)

Exactly

Many people have told me to stop gaming, stop wasting my time in games where you can't get/create real friendships and that i should get out more. I've never really manage to imprint or explain to them why it's so important to me. The strongest experience for me was when someone who was struggling in RL had his computer die on him and he couldn't replace it. Several people just sent him their spare-parts to get him back online. It's been one of the few times that I've felt that sense of "belonging" that seems to come naturally to others.

I'm still working on getting to terms with myself about AS and I'm very pleased (happy/giddy/bewildered? i dunno ) to have found this place with it's insights, information and you people.

Thank you

nice..., touching, i've been there, sort of...

giddy is good, good choice of word, good feeling, giggly at times

Thanks for the perspectives everyone

I am going to see my GP for the referral request in a couple of weeks. I tried approaching the subject with my mother yesterday because I'd read that some people prefer that you take a person who has known you all your life with you to the evaluation but she told me off for even considering it. She didn't even think about it - just said I wasn't like people with AS she'd seen on TV etc, so I couldn't possibly be one. She told me that I'm just introverted; I should be happy I had got over my breakdown and to leave it like that.

But I don't like accepting things without knowing. I suppose her inability to grasp this aspect of my personality and my inability to let things go when I still have lingering questions is a big part of why we've always struggled to be close.

I'd rather go to an analysis (if I'm granted one) on my own anyway but her flat refusal to accept I have a problem when I live every day torn up inside frustrated me. I'll go it alone again this time. It seems that there's still a big stigma over the possibility people think a little differently to "normal" - how disappointing.

Kismet

I'm really sorry to hear that; that just plain sucks. Even though there are quite a few reasons why she really said no, any no is not what you're after or what you need when you explain a problem. I'd offer you a hug if i could.


After she said no and told you that you weren't anything like AS, did you ask her to explain to you how she feels/thinks people like AS should be? If she's way off on how you see it, you describe it as you heard her, and then how you see it.

For example; if she's ony seen AS when they're having a meltdown or (slightly) embarassing stimming, she might not recognize that in you. If anything can be said by most TV, it's to either shock you or try to "move" you. Additionally, you can create the vision of a spectrum or range of AS as you'd describe the various types of black.

Black goes not only from full to faded (like how strongly you are AS in a perceivably way), but black also can go from blue to really dark blue to near black and will quite often be mistaken for black which could be matched one aspect of AS that you have and where you think you fall; same with purple for another aspect of AS. Keep in mind though; how you view yourself will not be entirely objective, as you've only got your own mind to really compare with (I learned today that where I think I am, doesn't match with how a good friend sees me, but that's another topic entirely). But it could be a start to go from.

If you didn't use the "tell-back" method, you could try that one. If you already did the "tell-back", you know how she sees it in more detail and could tailor the example above to what you know you're difficulties are.

I hope the above could work for you, as honestly; I'm kinda scared of getting the same reaction. Most of my folk's attention went to my brother, who's dyslexic in a pretty bad way and that my clumsiness was just that aspect of dyslexia that i got. And that I'd be just fine being me, even if a bit clumsy. My brother's doing fine in all aspects of life (outgoing/flat/friends/gf/happy where he is now), his only real problem now is managing his funds.

Ironically, funds I'm great at, I have a flat (messy as it is ), but suck at the other stuff and barely managing to stay afloat mentally.

I got some anti-nervosity stuff, because this idea is in my head now, and it won't go away until acted upon, so I'll probably need it

Don't be to upset with your mother. It is amazing how people, spouses, friends and relatives will happily 'accept' us if we're just strange, eccentric or even very weird but become standoffish if we're actually described as having a 'disorder'. Regular people, especially those close to us often go into denial or feel embarassed or even guilty about our 'condition' if and when it's 'official'. This is just something you have to aceept and work through over time, sometimes a very long time.
As to the Doctor:
If you do not immediately feel comfortable with your scheduled professional find another one. A good psych will not be offended if you say that you don't feel comfortable going through an interview. I would drive 3000 miles if necessary to find a doctor I felt comfortable with. I was extremely, I mean super extremely lucky, in finding a doctor who was also autistic and I wasn't diagnosed until I was 59. As we get older it is much much harder to seek advice which is why so many older adults go all the way through life without a real diagnosis.
Good luck on your endeavors.