Published on 12, July, 2020
I've come to a point in my life where, after looking back over it - at the things that have happened, the things I've done and not done, the things I've achieved and not achieved - I can begin to make a reasonable judgment about what's likely to happen with what's left. I have far more behind me than I have in front of me. My physical health is reasonably good for a man of my age. I could carry on for a fair number of years yet before things start to break down physically. But I know that, when they do, I won't want to endure them for very long. I don't want to end up on medications for life (I already have one that I have to take). I don't want to lose my independence, and need support. I don't want to be reliant upon others. When my time comes, I'll take my own action to obviate those things.
I have just over seven years to go now before I will be able to retire. It's unlikely, therefore, that my personal circumstances are likely to change very much. There isn't a great deal I can do to improve my financial situation. The hours I work aren't full-time, but they're as much as I feel able to manage given the current state of my psychological and emotional health. Recent events have shown that my mask is beginning to slip: that after a lifetime of trying to get by in a world which has rarely made much sense to me, I'm reaching the limits of my tolerances. I'm gradually burning out. I'm beginning to break down. Not physically yet... but the physical and psychological breakdowns will work in tandem with one another, of that I'm sure. I've already done myself some damage through drinking, which I've done increasingly heavily over the last ten years. I struggle with stopping it. I've had some periods before of not drinking - a week, two weeks, a month - but I've always gone back to it. Because it's really the only thing that relieves the anxiety I feel most of the time. An anxiety which I've carried with me for most of my life, from my earliest days at school. I have to weigh the damage it does to me against the 'benefits' of feeling temporarily relieved and happy - free of anxiety, able to laugh, able to enjoy myself.
So... what do I think I have ahead of me? Over seven more years of work, with the burn-out accelerating all the time. My financial position doesn't give me much room to change my circumstances in any definite or positive way. I cannot afford to move. I cannot afford to set money aside. There's nowhere else I can go. I have a job which gives me a good sense of satisfaction and life-purpose, but I'm finding the demands of it increasingly exhausting. I simply can't see myself being able to do it for another seven years. Meanwhile, given my age, my options are becoming more and more limited. If I end up having to leave this job through ill health before I can find something else, I face the benefits system, which many of us already struggle with. I had it once before, and it was certainly no fun. It's not the 'easy cop-out' that some of the tabloids like to portray it as. At my age, too - and given my limited skill set - finding something else, and something different, won't be easy.
My Asperger's diagnosis has a double edge. It enables me to make sense of my life. But it also enables me to see how my life has been 'limited' by it. I'm not saying that I wish to change the way I am - but I think it could all have been so much easier if I hadn't been born this way. The positives and negatives of it fly around in my head all day - like leaves in a whirlwind.
To many, I would sound ungrateful in saying this. Focus on the positives. I don't have money - but I also don't have debts. I'm in a location I'd like to leave - but I have a job and a roof over my head. I don't have friends or any close family - but I have this community, and I have my cat. Many people have far less than this, and are much more worse off. I should take reassurance from that. But it doesn't always work that way, does it.
I'm not saying anything that anyone else here doesn't already know. It's a common enough experience. But it helps, though, to write it down. Maybe it helps to share it, too.
Thanks for reading, if you have.
So right. Will respond more later. Things not bad so far. People glad to see me back and thankfully not asking too much . The woman in question said good morning - then added, 'Did you enjoy your time off?" Not sure how to take that.
What troubles me is that in the autistic community there are so many talented, insightful, intelligent, capable, empathic people who have effectively been excluded from the workforce.
Partly it is an environmental issue - many of us have experienced the hell of open plan offices and know how badly they affect our ability to function and maintain our well being. The requirement to be a good team player has become pretty much ubiquitous too. We're obvious targets for bullying, and all the policies and procedures in the world don't afford us any real protection.
Then of course there's the issue of how we are managed. Many of us have had jobs destroyed by toxic supervisors playing power games. I saved this quote from another thread but forgot to make a note of the author. I will attribute it when I can:
"I think that managers believe they know employee psychology and use this knowledge to manipulate their employees to their own interests, by pulling their strings. As long as people operate like puppets the puppet masters are happy.
But when it comes to spectrumites they cannot pull their strings, they do not understand their psychology, so their power is undermined, and they get frustrated and angry and see it as rebellion and non-compliance. Workplaces are more than just work, they are theatres of power, where managers play out their power games and since spectrumites don't play along they have to be expelled. By getting rid of a spectrumite they win and satisfy their need for power and to be on top."
This all sounds terribly negative. Of course there are still autism friendly jobs and working environments, but I struggle to find any in the list of vacancies. In career theory if you want to succeed you have to 'stay on the bus' - in other words stick with a job until you can move with strategic advantage. We usually ricochet from job to job for reasons associated with being autistic, resigning or being forced out in other ways.
The cv we end up with arouses suspicion. We put a positive spin on constart turmoil even though we know the awful truth. The facts often speak for themselves - a steady decline in income, disintegration of full-time professional roles, a shift into part-time and casual low-paid work with limited autonomy and scope to use our specialist skills.
Effectively autistic people are being designed out of the workforce, having never been properly included in the first place. I applaud recent efforts to recruit and support autistic people in the IT and tech sectors, but this needs to go much further. Available work needs to reflect the full range of interests within our community, and we shouldn't have to be segregated, we have the right to work in the mainstream.
I feel much better for having written this. Autistic people are subject to so much misunderstanding and mistreatment at work. I knew it before but I see it even more clearly now. It makes me terribly sad, but it also makes me angry. The best way of channeling that anger is to fight for change.
I understand, Robert. I've managed to stave off debt - just - though it got close a few years back, after my divorce. I moved out and was paying half the mortgage, plus my own rent, on minimum wage. It took 14 months to sell the house. Any longer than that and I'd have gone under. I had a bit of money from the house sale. But then I had my breakdown in 2010 and was off work for over 2 years. I couldn't claim ESA, so spent most of that money just managing monthly expenses because I wasn't working. I'm lucky now in that my rent is so cheap. Really lucky. I have a landlord in a million. If it was even £50 a month more, I'd not be able to cover it with what I earn. My monthly income just about covers it all, with a bit over.
I lost about 5 years of NI contributions which I didn't repay, so I've got to work for at least another 3 years to qualify for my pension. At the moment, I'm just really scared about what might happen at work. If it goes wrong, I'll have no option but to leave. I'll just go sick until the get rid of me. So much is balancing on this.
I know what you've had to go through with your recent work experience. I thought the whole way you were treated was absolutely appalling. Care is such an unpredictable area of work to go into. Very stressful apart from anything else. I think I'm reaching the end with it, after 14 years. I'm trying to keep myself together mentally. But... it just depends...
Four months ago, I felt as settled as I had for years. Now, I just don't know any more.
I feel a bit the same about retirement. If I get to that age, I can't think I'll be working.
Take care, mate. I hope things can turn for you soon.
I am a similar age to you.
But unlike you I have debts, long gaps in my employment, mental breakdowns and several gaps of years of NI contributions missing.
I am not sure what retirement will bring or if I will live that long.
Thanks, Sunflower. Went to bed early in the end. Got a bit of sleep. Wired now, though. Just want to get this day started, then over with.
I was thinking earlier you really should be spending your time writing. You have an extraordinary gift.
Enjoy your film - I watched The Good Girl earlier - bitter sweet.
Yes, this is interesting. I'm relatively 'comfortable' - though certainly not comfortably off. And it does all feel precarious. The least thing could set off a chain reaction that brings it all tumbling down. That's almost what happened at work, and I still won't know for a while until it's over yet. If, when I go back, I don't feel comfortable and can't manage it... then I don't know what's going to happen. I'll try to look for something else, but it won't be easy. It was all just going along so well - until this thing happened. And that's thrown it all out of kilter. If it comes to it, I won't leave. I'll just go sick and not go back until they 'let me go' - as happened when I had my last major breakdown in 2010. But then it's back into the benefits thing, which is always a nightmare. I don't want that, if I can help it. I'll do my best to keep away from that. But then exhaustion with the work I do may catch up with me, anyway. Then there's always the possibility that my landlord will decide to sell the property. Then I'm at the mercy of social housing, and going wherever they put me.
Having said that, I much prefer to rent. When I was married, I had a decent civil service job, a car, a suit and tie, a mortgage.... and it all felt wrong! It felt like, in some ways, I'd succumbed to expectations. I felt trapped. It was a relief for me to get out of all that and get back to renting. It's always felt safer because I've never felt stable enough, in any way, to feel confident of always being able to sustain my position. If I'd had a mortgage when I had that breakdown, I'd have been stuffed, because I didn't work for over two years. Even when I felt ready to return to work again, it took months for me to find a job. I had a bit of cash from the equity of the house sale, but I spent much of that just keeping myself going without an income.
Yeah... just a little bit of financial independence. Or not even independence. Just enough to give me a bit of scope for movement - to another location, a nicer flat, etc. I'd love, of course, to be able to make money out of what I really want to do with my life - write - but I can't see that happening in the near future, if at all. I personally know of a couple of people it happened to, and they both went from being part-time employed to being millionaires - not quite overnight, but pretty quickly. They realised the dream. But there's only a very small number of them that do. I think I read a while back that the average income of published novelists in this country - from J K Rowling-in-it on down - is £11,000 a year. Less than minimum wage brings me on a 30-hour week.
And yes... I certainly know that 'go to sleep and not wake up' thing. Although I wouldn't actively do anything about it unless things really did collapse around me, the idea is always there. There's a paper here that makes for startling reading...
Suicidal ideation and suicide plans or attempts in adults with Asperger's syndrome attending a specialist diagnostic clinic: a clinical cohort study
And on that cheerful note... I think it's time to switch off and watch a film. Strangely, I always find disaster movies or documentaries reassuring at times. They make me think 'Oh well... could always be worse!'
I have a lot of sympathy with this. I often feel I'm trapped in a circumstance that I can't find a good way out of as much as I would like to. But we're sort-of comfortable - even if it feels all somewhat precarious. Certainly I've reached the point a few times where I've thought "If I could just go to sleep now and not wake up I'd take that choice." If I had the option of living my life again, knowing what I know now, I'm not sure I'd chose that option.
The work thing is difficult for me. Missing a trick I didn't buy a house when I probably could have done, so unless I can come up with something magic, am probably stuck with renting. Realistically I'm not sure that retiring is ever going to be an option. In some respects that not an issue, because not having something to do would drive me nuts, but it would be nice to be able to chose what I do . It was also be nice to have just enough financial independence to be able to pick and chose work as it appeals to me.
I've been wondering though if we're at the start of the whole LGBT thing however many years ago. Maybe our job on the planet is to do what we can so that future generations have an easier time of things?
I know what you mean. Like the labour of Sysiphus. You roll that stone up to the top of the hill... only to watch it roll all the way back down again!
I feel that my life is like a rowing boat that has sprung a leak
I'm bailing the water out as fast as I can but the boat keeps on filling up
I'm bailing away faster and faster but I'm growing tired
I am thinking I want to lie back and go to sleep
but that would be admitting defeat so I keep going...……….
It's a tough one isn't it. Part of me wants to run away from the things that do me harm as fast as my little legs will carry me. Part of me says that if I give up now, the hard slog to get this far will be pointless.
I completely understand how you feel. And the guilt of knowing that others are probably worse off and we are "complaining". I know that, there are people who have to decide whether to pay rent or to eat. But then there are people like us who have to decide whether to keep at it until we have a complete burnout/breakdown, or whether to get out but then have to faces the consequences of doing so. Hobson's choice.
It does help to write it down, I think, if only to say it out loud to people who know where you're coming from.
I cried when I read your post
I can relate to how you feel
I'm a bit younger than you at 53 and feel the same