Just got diagnosed. Now it's official!

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I haven't posted here in a while, which is a good thing, as I only post when unhappy. (Except today, but there are some great people here and it seems rude not to report my news.) Life is going well, so I may have to change my "trapped in hell" user name. of course, I've thought that before, but things have been pretty good now for over two months, so here's hoping...

If it's of interest, this is how my diagnosis went.

background:
I live in a remote part of Scotland, so the good news is it was free, but the bad news is I had to wait a long time.

early childhood and life before suspecting (I'm now 44)
My parents were convinced that I was always normal, but I think I was just good at faking stuff and they provided an unusually supportive environment. I was raised in an all-consuming religion where all major decisions were made for you. Not in a sinister way, but I sleepwalked into a marriage for 19 years, and I won't really know until the day I die if it was a good thing. Same for being raised in that church. I can see strong arguments on both sides. I just know that there was no connection between my wife and me, and I seemed to make her miserable. But that could have been the church - a strong case can be made that the church both created and destroyed that marriage (because it created impossible expectations, then I left then the marriage ended). Who knows? I think autism is well names: "aut" as in automatic, autonomous, alone.

2004: I think it was about 2004 that my then wife, a nurse, read a medical article about aspergers and said "this explains everything." Over the next few years I started to see my life through that lens, and it certainly explained an awful lot.

2010 or thereabouts: I was in a situation with the government benefits people were they didn't give me much sympathy (I was very good at looking highly in control and efficient). It stuck me that a formal diagnosis would let them tick the box that says "give this man a bit more understanding." E.g. how can I be very good as "A" yet claim to struggle at "B." So I saw the doctor, he got me an appointment with the mental health team, and many months later I had a 1 hour (2 hours?) interview with a psychiatrist. But he was not an autism specialist and at the time there were none in the north of Scotland, so nothing happened. Off topic, this kind of thing really bugs me. What is the point in having a health service is there are huge cracks through which most people fall? The only adults who get diagnosed are those who do self diagnosis and then push and push. I suspect that nine out of ten people with aspergers are undiagnosed. The system does not work in nine tenths of cases, yet takes our money anyway. End of rant.

2011: I was signed off work with stress (the first time in my life that happened) so pushed for another appointment, this time I had to know: yes or no? This time the psychiatrist was far more optimistic. A specialist had just been trained for the north of Scotland, so now they could help!

2012: they must have lost my appointment, but after I chased it up they made another one. Finally I had two days of interviews, with both parents present (a good job I was living at home at the time!). What surprised me was that the interviews were exactly the same kind of thing you could do online: just lost of standard questions. Give that nine out of ten people are not served by the present system, I think they would save a lot of money by putting the tests online. Yes, I know that body language and stuff is important, but the system completely misses almost all the people it's designed to help! It also acts as a disincentive for government, as more specialists equals more ongoing costs to them. I would rather have a system that worked only a little bit for everyone, rather than one that utterly fails nine out of ten while being very nice for the tiny minority

A month or two after the last meeting I got a call on my mobile, call number withheld. I pretty much only ever call my family on it, and nobody else knows the number, so I had half a mind not to answer. This seems an ironic way to inform someone they are autistic. But the lady was very nice, I have no complaints, and I now have it in writing. Or at least she said it would be there. I have received the letter but haven't read it and probably won't. I don't like reading letters unless I have to. Which I suspect is one more hint that her diagnosis is right.

All of this has coincided with my leaving my parents' house (where I lived since the divorce), no longer worrying about my kids (they are all now well on the way to much better jobs than I ever had), and downsizing my life. I have a very pleasant shelf stacking job, am in the process of divesting myself of the stressful programming "hobby" I've been working on for the past 15 years, and I'm generally downsizing my life. I now spend all my time doing just what I want - mainly studying economics (for personal interest, not for any career, I've had enough with universities).

The best thing over the last year is becoming part of "the system." Now that I have a basic job and my own place I get benefits and stuff, and I have always lived very cheaply so this suits me perfectly. I am very grateful to live in Britain and not in America (or Greece or China etc.). Even though Britain's system is still hugely wasteful and counter-productive (hence my interest in economics), the others are mostly worse as far as I can tell. At least for the majority. If you have money then n doubt you see it differently.

overview:
I don't know how to feel about the diagnosis, because I know that if I had given different answers they would have given me a "no, you are normal" response. So I totally support all those self diagnosed folks. I don't know if an NT person could fake it with an inexperienced specialist, but I don't agree that only an official diagnosis counts. But an official diagnosis is certainly helpful. Having the diagnosis helps me tick the right boxes with the welfare state, and it makes my life easier to understand, and will hopefully help me to make better decisions, so I'm glad I did it.

Anyway, that's my story for what it's worth. Yeah, it's a long post, but this is an autism board so what do you expect?

Thanks for sharing. I think more or less the same about self-dx, but as you said, it's good to have a professional opinion to confirm your self-dx.

Thanks for this. I'm glad you got to a diagnosis and can move forward.

I was diagnosed a year ago, but haven't worked for a couple of years due to other health problems. However, I haven't claimed anything, I've stayed at home looking after the kids.

I'm just curious as to what boxes a diagnosis ticks with state welfare. Are you able to claim something with a DX that you couldn't as an 'ordinary person'?

Hopefully you can take from the diagnosis whatever it is you need- comfort, confirmation, understanding.
It must be hard being diagnosed at such a late age, wish you all the best of luck

I don't get any special benefits. I probably get less than most people, but I used to get zero, so this is a huge step upwards for me. Why less than most people? I'm not good at working the system (for example, they just reduced my housing benefit for basically random reasons that they don't disclose, and I don't claim income support etc. despite a very low income. I just find the whole benefits system either morally troubling or exhausting. I do have a friend who's an expert benefit-getter, and she urges me to claim all kinds of things, but it feels wrong to me. I don't need it, I have what I need already. Any system that rewards people who don't need stuff, with money they did not earn, is a bad system IMO.

By box ticking, I mean examples like these:
1.
I was once unemployed, then they decided I made myself unemployed so gave me no benefits. I disagreed with their decision, and I think if I could tick the box "mental illness" they would have been more understanding.
2.
I had a psycho boss who other people could cope with but I could not. it really helps to be able to say "I have aspergers and that is why I am taking this so bad." That may have been the difference between keeping my job and losing it (because I have their sympathy instead of their hatred, and they are scared of the publicity iof they fire somebody in those circumstances)
3.
I had to apply for a sickness benefit over the phone at one point. The man at the other end had absolutely zero interest in me, and simply wanted to tick boxes as quickly as possible. I wanted him to understand why I could not answer "yes or no" to a lot of ambiguous questions. At least he can now tick the box that says "mental illness" or whatever silly thing they call it, and that is my insurance against being rejected on some stupid reason. If you rely on benefits then being classified as sick is a good thing, paradoxically.
4.
Perhaps the biggest advantage is in my personal decisions.. I have a high IQ and high abilities in many areas, so it was extremely frustrating to be stacking shelves. Yet when I got better jobs they didn't turn out well. But now I am at peace with stacking shelves. I understand how it fits me. I have a pleasant time with pleasant people for a few hours each day in a dysfunctional supermarket, then I go home and dissect the Economist magazine and work on my project for saving the world through tax reform. It's mental box that I can tick: It's OK to be very good in one area and very bad in another. This is where I fit. For the first time in my life I no longer worry about my future.