Wednesday, 11 February 2015

The World As A Puzzle

When I was young, I thought of the world as being like a giant jigsaw puzzle - the sort with about ten thousand pieces, which seems like just a jumble of fragments at first, hundreds of bits of blue, and lots of blurry brown and grey, and where on earth does that red bit go? But then you find this bit links up and then that bit, and then suddenly a whole part of the puzzle becomes clear, and you go, Oh! I see what it is now! I thought the world was like that, and if I could figure out enough of the 'pieces', suddenly I would understand the world, it would make sense at long last. Because it certainly didn't make sense to me at the time, in fact it seemed like a vast, swirling, chaotic mess, with rules that I could never figure out, and which I was constantly tripping over. I was terrified someone would realise how ignorant I was, and how much I was 'faking it', and so I thought if I could just figure the world out, I wouldn't have to anymore, I'd 'just know' all the things everyone else did.


It never did make sense, the puzzle remained a puzzle. These days, though I know a lot more about the world, and have put some small parts of the 'puzzle' together, the world still overall seems, well, puzzling. Only now I've realised it's actually a ginormous three-dimensional puzzle, crossed with a vicious game of snakes-and-ladders and a really, really, really complicated Rubik's cube. And the thing about the Rubik's cube, is that if you think you've nearly got it, you've in fact got it all wrong. Plus, the whole thing completely switches itself around every now and again, and introduces new pieces. Just to confuse you even more! Or so it seems anyway.


So in short, I've given up trying to figure it out. And I've realised that NTs don't necessarily understand the world as a whole better than I do. Once when I said to my mother something about "figuring out the world", she asked in astonishment, "can anyone figure it out?!" Even to her, it seemed, with her long experience of life and far greater understanding of people, it could still seem a very confusing place. And I wonder if that's so to other NTs as well - they know their 'pieces' of the world, their little corner or corners, but how much do they really understand of the bigger picture? They've probably never thought about it much, never had the urge I did, to try and make sense of it all.


The difference being, I suppose, that they do understand their corner of it, its social rules and so on, and have a general understanding of the rest, and of people in general, and that's enough for them to get along in the world. We aspies don't. We don't really have any corner that we understand, any milieu where we know the rules and so can relax; or for that matter much of an understanding of the broader social world. The result being that we stumble and bumble our way through life, trying to make sense of what doesn't actually make sense, not knowing or understanding what others consider so basic as to be not worth mentioning. And so perhaps we have a greater need or impetus to figure it out. I suspect that it's why so many aspies (the ones that aren't science/maths/tech geeks that is) go into the social sciences, to figure out both themselves and the strange creatures that share the planet with them.


How do you view the world?

Sunday, 8 February 2015

The Perfect Mother For An Aspie

Those of you who know me through Facebook will know that my mother passed away recently. It's been a great loss to me and my family, she was our gentle matriarch, our anchor, our centre and guiding light. But much of our grieving is a private thing, and it's not that I want to talk about, but rather about how she was as the mother of an aspie.

When I was a child, my mother, in an era when autism was barely heard of and Aspergers never heard of at all, seemed to recognise that I needed a little extra help with life, and it was just instinctive to her to give it. She guided, helped and supported me right all through my life, long before either of us knew about my Aspergers. Right up till the end, for instance, even after spending decades learning how to read people, I would still often turn to her to check on my perceptions, asking her things like "Did So-and-so seem __ to you?", and she'd say "no, I don't think so", or "Oh, yes, was she ever!", and so on. I'd ask her how to go about things, and she'd give me advice, in the calm, thoughtful manner that was typical of her.

In fact Mum was always very even-tempered, I rarely heard her raise her voice, except perhaps to call to someone in another room. She did get angry now and again - her lips would press tight and her eyes flash, signals even as a child I was able to recognise! But I don't think I ever saw her totally lose her cool. This composure helped me in turn, when I got agitated about 'little' things. Throughout my life, she was able to calm me down and prevent an incipient meltdown simply with a few quietly reassuring words and a pat on the shoulder or back, etc. She never assaulted my ears by yelling, and was always willing to adjust things to my sensory needs whenever reasonably possible.

My mum was intelligent but never intellectual, she operated from the heart far more than the head. This was a much-needed counterweight to my tendency to go off too much into my head - and though I never thought about it consciously at the time, I'm sure she influenced my realisation, in my late 20s, that the best path for me was a balance of heart and head.

She helped me in practical ways too. When I first learnt to drive, for instance, I was very nervous of driving at higher speeds, and when we went on long trips together she'd wait till we got somewhere less busy and then get me to drive, giving me patient advice like "it's best if you keep an even speed", or "turn the wheel more gently". I remember one day she reached over and patted my hand, and said "relax your hands, Pen, you don't need to grip so hard," and I realised I was clutching the steering wheel like it was a life raft and I was drowning! Like many aspies, I have my difficulties with driving, but I definitely became less tense and more skilled as a driver, thanks to her quiet help.

She was also a role model for me in many ways. While, like many on the spectrum, I've always had trouble expressing (NOT feeling!) qualities such as empathy, a lot of what I have learnt to do is through following my mother's example. Her entire life was centered around caring for people and helping them, particularly family, but also anyone else in need she encountered. She would always lend a compassionate ear to other's woes, as long as she felt they were genuine. Her generosity was legendary, and I was a frequent recipient of it. Her paid work was always in one helping profession or another and she was involved in a long list of charities over the years. She never made a big deal out of it, or indeed about any of her values and beliefs, rather she simply lived them. I absorbed much of this, at first without consciously realising it. Like her, I believe in helping others, and in doing my bit to make the world a slightly better place, even if the way I do it is different.

She also modelled courage and determination. After years of enduring an increasingly unhappy marriage to my father, in her middle years she divorced him, a thing almost unheard of for women of her generation and background, and launched into a new career as a social worker, making new friends, travelling the world (my mother saw much more of the world than I have!) and having all sorts of adventures. She even went paragliding - at eighty!! Many a time I've thought "well, if my mother can do 'x' at her age, I can do such-and-such at mine!"

Mum was always willing to try something new, find out new things. I know that if she and I were fifty years younger today, or if the diagnoses and information that's there now was around when I was a child, that she would have been researching and reading everything she could on autism and Aspergers. As it was, if she saw a magazine article or TV program about autism, she would always point out them out to me, and ask what I thought of them. She read my blog whenever I showed it to her (the Internet was always something of a mystery to her, tech-savvy she was not!), and was really supportive and interested in the column about disability issues I recently started in the local paper. She sometimes asked me how I perceived something, or why I had difficulty with something. Though she sometimes had difficulty understanding me, she always tried to, she always kept an open mind.

Despite all this, in her final illness, Mum said to me that she'd sometimes felt "helpless", to know how best to help me with my AS. I said to her that she didn't need to have done anything, that simply being herself was enough. We were interrupted then, and I never got back to the subject, but I would have gone on to tell her just how grateful I was for her total acceptance of me as I am. She told me once that when I was a child, yes, I had my "funny little ways", but "that was just you, it was just how you were, all my children had different personalities, I never thought twice about it." So much so in fact that when I first told her I suspected I had AS, she pooh-poohed it, even laughed. But then, ever open to new ideas and listening to people, she stopped and asked me why I felt that way. So I explained, and she listened, and finally said, "well, it doesn't matter, you're still my daughter and I still love you." And gave me a huge hug! I wish that I'd been able to tell her just how much that meant to me.

My being "different" never seemed to bother her. She teased me sometimes, true, but it was always done with affection, and that total acceptance. One of the final things she said to us was "no judgement, don't judge people". I never saw her judging people because of race, gender, sexuality, religion, disability or whatever. Family meant everything to Mum, and she also gave me the gift of a loving, extended family, always fostering my connections to them, drawing me into the circle, even when my social skills were pretty minimal.

Perhaps most importantly of all, I felt safe with my mother. When I was a child, she provided clear structures and routines, with fairly simple rules and expectations, yet all of it practised with love and patience. And throughout my life, I knew that I'd always have a place to stay with her if I needed one. I will miss many, many things about my mother, from the companionable dinners eating fried rice in front of the TV (often followed by 'naughty' chocolate!) to her wicked sense of humour, from her gentle wisdom to the trips we took together, and much more, but I think possibly I will miss that feeling of safety most of all. I don't know that I'll ever have that again.

For an aspie of my generation - indeed, any generation - she was the best mum ever. I wish that all autistics could have a mother like mine.

Monday, 15 December 2014

Things I Detest - A Totally Random List

Muzak. You can't call it music.

CHRISTMAS muzak. As if the regular sort isn't bad enough.

Phone salespeople - I hang up on them now.

Religious doorknockers. I sometimes feel like saying to them, "how about we make an agreement - I don't come to your door, pushing my views on you, and you don't come to mine, pushing yours on me. Deal?"

TV shows such as Survivor, The Block or Big Brother, because I don't get the emotional games played, I think it's all BS anyway, and don't give a rodent's posterior who wins. (I must confess to sometimes watching a bit of Masterchef, because the food looks delicious!)

Sitcoms, especially American ones, as they're based on people making idiots of themselves, and I've had way too much of that in my own life.

Cricket. One notch above watching paint dry. Make that half a notch.

Asparagus. Blech.

Stuffed marrow. Ditto. My mother used to cook it for us when I was a kid - until the day I said it looked like cooked snot. Funny, none of the rest of the family wanted to eat it either after that...

Things that are fiddly to open - whether it's a jar of peanut butter or a new packet of tissues or whatever. Not being especially co-ordinated or strong, I just get so damn annoyed with them, I could throw them across a room.

The Briscoes lady. She irritates me, she and all her white, middle-class, oh-so-healthy-looking sisters in ads, who somehow manage to produce big, white-toothed smiles and talk at the same time. They look like ventriloquists' dummies.

How it's always the most irritating songs that stick in your head. Why can't it be one of the nice ones?

Doing dishes. The most boring job on earth.

Music being played - LOUDLY - on people's cellphones in the street. I've blogged about this before, but it still irritates the crap out of me. Get some earphones, people.

Harvey Norman ads - they're always YELLING AT ME ABOUT ALL THE WONDERFUL SAVINGS I'M GOING TO MAKE IF I SHOP AT THEIR STORE HURRY NOW!!! I don't give several rodents' behinds what your specials are, Mr Norman. Just turn down the volume on your ads, because I'm less than impressed.

...and I will probably add to this list at some point. In fact, it's inevitable. Sigh.

Friday, 28 November 2014

A website for aspies

I don't normally plug other people's websites - there are far too many out there for me to read and/or recommend - however this site is related to a group I'm in on Facebook, and the moderator asked me to check it out. It looks pretty good to me, so here's a link to it, which is also in my 'websites of interest' list, down the right side of my blog.

Life Is Like A Game Of Solitaire

I realised something recently about the computer game Solitaire, which I play quite often, how it's in many ways a reflection of life, or my life to be exact, as I've lived it to date.

For instance, there are the 'games' I just couldn't win, and was foolish even to try. I was always doomed to fail them. But I didn't know that to start with, and so I crashed over and over again, until I learnt, painfully, the hard way - because I had no-one to guide me, no-one to point out that I couldn't possibly win them - which games to never even start.

Then there are the games I thought, even after learning about the first sort, that I could still win at, they seemed hopeful, until by about halfway through the game, I realised that they were just as unwinnable as the first, at which point I had a choice to either go on to certain defeat, or to cut my losses and walk away. "This counts as another loss in your statistics..."

Oh yes, the little message that pops up when you've lost a game - "do you want to start a new game? ...To redo this game? ...To continue playing this game? ...This counts as a loss in your statistics", etc. Whatever your choice, the message is clear - "Loser, loser!" The world has told me that too, in a complex variety of ways, over and over again. I don't need reminding.

There are also games I think I'm finally winning, yes, yes, nearly there, I've got it, my God I've actually got it... and then... BANG. I haven't. Chalk up yet another loss, and walk away. Try again with a new game, a new day, a new life...

 Sometimes, I think I know what I did wrong, and I'm all "oh, if only I'd done this, or that, chosen this or that 'card' instead of the other", going over and over the 'game', but I never know for sure, except by going back and repeating everything, and that's a loser choice in itself, and often not possible anyway. And sometimes I couldn't spot my mistakes at all. Sometimes, it only seemed like the harder I tried, the worse things got, and the more I lost. And I felt stupid, for 'doing it all wrong', for not being able to see the 'right' choices to make, like 'everybody else' did automatically, or so it seemed to me.

 Often, I would eventually stop caring, and then it didn't hurt so much, only I would then find I was just going through the motions, and not really engaged with the game at all, and my 'win rate' went down even lower.

And sometimes, finally, eventually, after much time and effort and concentration, I even win a game - only to realise, after a temporary exultation or relief, that I've been so caught up in the damn thing, trying to 'get it right', that I've actually ended up wasting huge chunks of my time and energy on something that wasn't really worth it, and that I would have been far better off employing said energy etc to some more beneficial goal.

With Solitaire, my losses rank far higher than my winning games - I'm slightly embarrassed to admit I only win about 6%, which is probably about my winning average in life as well. Sometimes life just sucks, or is it me...

Someone once said to me that 'theoretically' it's possible to win every game of Solitaire. I immediately forgot the 'theoretical' part, and took this as meaning that somehow "everybody else" "just knew" the rules, and how to win at the 'game', and only I was too stupid to figure it out. Once again, too like my life for comfort. I now realise that wasn't what was meant, but still, it's hard to shake off. It's hard to be positive about life, oops I meant Solitaire.

I think I need to try a new game.

Why We Need Mentors

I've called this "Why We Need Mentors", but it could just have easily been titled "What Happened To My Life?"

I began my adult life with a whole bunch of expectations, most of which involved assuming my life would be like other people's - marriage, motherhood, mortgages, the white-picket-fence-with-2.5-kids life in the 'burbs' thing... I didn't truly know how people got all that. It seemed to 'just happen' for them, and so I presumed it would for me too.

Well, some of it did. I did get married and become a mother, though younger than I'd thought I would. My marriage however was an abject failure - I made a lousy choice of mate, who proved not a good provider or all that stable, and we were never able to buy our own home. And then I started reading feminist stuff, eventually leaving the marriage and coming out.

 Still, all that meant was that I reframed my expectations. Instead of a man, I assumed I would find a long-term female partner, I'd get my degree, get off the benefit, and we'd settle down in happy domesticity, a sort of lesbian version of the white picket fence thing.

It didn't happen. Instead I had a string of short-term failures interspersed with long periods of celibacy, where I tried to figure out "what I did wrong", and how to do it differently next time. Then I'd launch myself out into the mating market again, thinking I'd solved all my problems, only to find - BANG. Another failure, and I'd reel back into celibacy again.

Friendships were another area I consistently failed in. They imploded, or drifted apart, or just never got off the ground properly in the first place. I couldn't understand it. I thought I was being friendly, helpful, nice, etc, why did no-one want to know me? Why was it such a struggle to connect with others?

I was attending university on and off during these years, but at times I struggled there too. Academically, I was doing okay, getting mostly As and Bs, but there was a lot of social stuff that I just didn't 'get'. I was putting a lot of pressure on myself at this time to be 'normal', and eventually, that pressure resulted in my health collapsing under the strain.

It would take another ten years before I would be diagnosed with Chronic Fatigue Syndrome, but the pattern was clear from the beginning - any severe stress, and my health took a nosedive. I began to use it as a reason to not do certain things, but only because I couldn't articulate my deeper, more long-standing reasons, which no-one would have accepted or understood at that time anyway. I still kept believing that my life would, at some magic point, straighten out, that everything would fall into place and come right. It never did.

I ended up leaving the city and living in the country for many years, while I tried to heal. During that time I finally managed a long-term relationship - only it wasn't exactly as happy as I'd dreamt it would be... I tried so hard to 'fix' it, draining my health, my vitality, the last of my youth, hope, romanticism and emotional energy in the process. I finally left only when I felt I had nothing more to give. And only then did I come to understand, way too late, that I'd been the victim of sustained emotional abuse.

I took stock - no partner, few if any friends, no job, no money, no possessions worth a damn, my health a wreck - where did I go next? Eventually I moved away to be closer to my family and start anew. Life since then has had a few ups and downs, but I still find myself, in my late fifties, poorer than I've ever been. I have no permanent job and little chance of one, my health is still not the best and in some ways is getting worse with ageing (eg the onset of arthritis), I've never owned my own home and am never likely to, short of a miracle. My family are supportive and help when and as they can, but still, life could be better. A lot better.

As for relationships - well. I picked all the wrong people, it's true, but then I could also say that none of the 'right' ones ever picked me. Suffice to say it's an area I'm not willing to venture into again, for a whole host of complicated reasons, of which being 'burnt' too often is only a part. In terms of connecting to others, the best thing that's happened for me in the last few years is not relationships but the aspie friendships I've made - they're one of the highlights of my life now.

But overall, my life has been, in many ways, a train wreck. Very few of my dreams and expectations have ever been met or realised - I've never owned my own home, never had a relationship that was worth the effort involved, never had a career (except for my writing of course, but I've yet to work out how to make that pay), I didn't even manage to finish my university degree. I rate raising my daughter as my biggest achievement - and don't get me wrong, I would still rate it that way no matter what else I'd done - I just wish I'd been able to achieve a whole bunch of other stuff too.

So what has all this to do with mentors?

It's this - when things have gone right in my life, it's always with the help, guidance and support of others. A typical instance is my getting to uni - for a while, I was friends with a woman who'd done several degrees, and who 'knew the ropes'. I quizzed her endlessly, and she very patiently showed me how to enrol, told me all about degrees, courses, prerequisites etc - we later drifted apart but I'll always be grateful to her for her assistance. It's very likely that I wouldn't have gotten to uni at all without her help. It was typical of a consistent pattern - if people were willing to patiently explain things to me, and guide me through new things, my life went much, much better. Other times, I got through life changes only with the practical help of family and friends. When I was lacking such support, that's when my life would go haywire. The inevitable result was a good deal of anguish and stress.

Maybe some of all this would have happened anyway, aspie or not, mentors or not, - I would still have come out for instance. But there's no doubt in my mind my life would have gone a lot better, if only people had realised just how ignorant and in need of help I really was, and given me a lot more guidance.

Many other aspies seem to be the same, I've heard many lament how they can't make or keep friends or relationships or jobs or stay in education, how their lives are going to ruin, they're homeless or unemployed or whatever, because they just don't know how best to get by in the world, they lack the practical knowledge or skills or social skills to rescue themselves - and no-one is helping them.
WE ALL NEED MENTORS. Everyone of us on the spectrum needs mentoring, sometimes throughout our lives. It doesn't have to be a big, formal thing - though that can help those who don't have families etc to step in and do this role - but it is a very real need, even when the individual is well into adulthood and seemingly independent.

Now, I understand that most people live busy lives and they can't always spare the time - even if they understand the need - to mentor someone. But whenever anyone, be it a private individual or a member of an agency or organisation, can fulfil this role, I would plead with them to do so, as the lives of the autistics they touch can only be better off for it. Because with the right practical help and patient support, we can achieve great things.

Monday, 20 October 2014

On Making Mistakes

I've been thinking lately about how we aspies absolutely hate to make mistakes. It can be anything from a social blunder to driving down the wrong street to making a slip-up at work - the type of the mistake doesn't seem to matter as much as that we've made an error at all. It triggers our anxiety and autistic shame, and we can get very upset, even have meltdowns, or angst for hours, days or even weeks over something that an NT either wouldn't fret over, or wouldn't do so for long. We just can't seem to let mistakes go.

I have struggled with this issue myself for most of my life, and have won only a partial victory over it, and so when I see other aspies/auties doing it, eg in my Facebook autistic groups, I feel a strong empathy for their pain and confusion. So I'm going to try to analyse why we react so badly to making mistakes. Bear in mind this is not a definitive or 'final' list, more of an attempt to open discussion, sort of like lancing open an infected wound so that it can begin to heal.

So here's why I think we react so badly. I've listed them separately, but of course they are often entangled and influencing each other hugely.

1) Fear. We have usually learnt to fear other's (often forceful) negative reactions to our mistakes - their criticism, disapproval, anger, hostility, jeering, or even outright abuse. So when we make a mistake, we cringe in shame and perfectly understandable dread. It's possible that this could even be the biggest reason for our dislike of mistakes, or at least the one that first makes us aware of them.

2) Orderliness. We live in a confusing, overwhelming, constantly changing world, and so we need to create our own order, those routines and habits that help us manage our lives. A mistake (eg forgetting to set an alarm clock) can disrupt this order, make us feel like everything's falling apart, and send us into a tailspin as a consequence.

3) Perfectionism. Any perfect pattern or order, whether we create it or not, is soothing to our often jangled nervous system. We like to have things fixed in place, and an error disturbs that perfection. We get upset when others disturb the perfection we've created, but perhaps we get even more disturbed when we do it, because we feel we should "know better". We can hold ourselves to even higher standards than we do others.

4) Low self-esteem. This is common amongst autistics, caused by a lifetime of criticism and other bad experiences. We often have to "try twice as hard to feel half as good", and so any mistake, however small, can cause us to beat ourselves up emotionally as a result. It's sad, but true, that sometimes we even self-criticise worse than others have done to us.

5) Catastrophising. You all know what I mean by catastrophising, I'm sure - that horrible negative spiral of thoughts we can get into, where we make 'one little mistake', and before we know it, we're imagining our whole world unravelling, our lives ruined... And afterwards, when we realise that our worst-case-scenario thinking was totally unfounded, it makes us feel (yet more) stupid and ashamed. I'm really not sure if catastrophising is a cause or a consequence of our loathing of making mistakes, maybe both, but I do think that a fear of triggering it would make us hate mistakes even more.

6) Perseveration. We have a tendency to go over and over events endlessly and at times obsessively in our minds, unable to let them go, and when we do that about our mistakes, it almost always leads to that catastrophising. And reinforces the low self-esteem, the self-bashing, the desire for perfection, etc, etc...

So what can we do about it? How do we stop doing this to ourselves? Perhaps we might never be able to entirely stop, but we don't have to suffer in silence forever either. I can only offer a few points that have helped me, I'm sure others will have other methods, this is, as I said, hopefully the beginning of discussion, not the end.

a) Accept that we can't prevent ALL mistakes. We are human, and therefore will blunder sometimes. Socially, we will blunder more than most. It's important to remember NTs make mistakes too - and because their memories don't seem to sear into their consciousness the way ours do, they also forget (and forgive) much quicker than we do, ie make a mistake one week and they'll have forgotten about it by the next.

b) Share with other autistics. Sharing with NTs usually only gets us more upset, because we end up feeling stupid and ashamed for feeling that way in the first place. But other autistics understand where we're coming from, and can offer solid advice and support. I've often felt much better after sharing with other aspies, and I've noticed other aspies seem to as well.

c) Get support in learning what we CAN prevent. What support you have will of course vary, but use every means possible, including any supportive NTs, to 'fill in the blanks' of your knowledge of the world. You'll be less likely to make mistakes if you're less ignorant of a whole bunch of stuff, including social rules and what's considered 'proper workplace behaviour'.

d) Stop with the negative self-messages. Stop the spiral of angst and self-hatred, preferably before it gets properly started. Meditation has helped me a lot over the years to get out of the "Oh God I'm so stupid" thinking and into a more rational space, a lot faster and quicker. For some, medication may be necessary to cope with their anxieties, but it's important to remember all medications have side-effects, and sometimes become less effective over time.

e) Have a Plan B. This is essential for when we make mistakes in our daily routines or travel. If we miss the bus to work for instance, perhaps we could catch another, or a train, or get someone to drive us... there's always another way to get our routines back on track. So always have a Plan B - and if need be, Plans C, D, E and F as well!

f) Dump your toxic connections. Wherever possible, dump those negative people, especially the downright abusive types and the just-don't-understand-or-want-to-understand-autism types. Yes, even if they are family. When you're trying to repair your self-esteem, you don't need anyone tearing you down again. Be ruthless. Press the dump button on them.

g) Above all - forgive yourself for making mistakes. I know this is easier to say than do, but if we can perseverate over our mistakes, then we can turn that to perseverating over not perseverating! We need to stop beating ourselves up for our mistakes - they usually aren't worth it, and we deserve better than all that angst. You're worth that, each and every one of you.