Twilight

Nearly thirty years ago, during the winter when I was most severely ill with Chronic Fatigue Syndrome, I’d sometimes fall asleep in the afternoon and then wake up at sunset, and become extremely upset, terrified and crying. The overwhelming feeling was that not only the day but my entire life was slipping away into the dark, as if I was dying yet not dying at the same time. I wanted to write, to paint, to just get up and move, but I couldn’t. I couldn’t even read. I couldn’t do anything but lie there, not knowing if I would ever be able to do anything meaningful again. I wondered if my life was already over. If there is a hell, I imagine it to be like that.

Fast forward to now. While I’m not that low anymore, I’m not young anymore either, and ‘Chronic Fatigue’ means just that. There’s never any point where I’m not at least a little tired, and the question is always ‘how much can I push it, and for how long?’ Many people don’t understand the fragility that comes with chronic illness, how a sudden drop in energy can come on you like the blast of a cold wind, how you must carefully hoard your ‘spoons’, figuring out if you have the reserves to do a thing, or will it backfire on you. This has been my reality for so long I’ve forgotten how it was to feel otherwise, and can only marvel at other’s seemingly limitless energy.

And as I’ve grown older, my health conditions have multiplied. Arthritis, low thyroid, Type 2 diabetes, GERD, probable IBS, various inflammations and injuries… the list goes on. I also had Covid recently, which hasn’t helped. CFS however remains the condition that most profoundly affects me. It means that I have fewer energy reserves to battle with my other conditions, and at this point I don’t know if the slow deterioration I’ve been experiencing in recent years is due to my CFS getting worse, simple aging, or if something else is to blame.

Realistically, I know I have maybe twenty years left at most, and it’s anyone’s guess how many of those are likely to be productive ones. I feel the urging, every bit as much as I did back then, to do as much creative work as I can - before I lose the ability to do so again, permanently. This is a big reason why I no longer care about or waste energy on anything or anyone that gets in the way of me being my authentic self, as this is where my creative work originates. Yes, I have important people I care about, but beyond that…. Life’s too short. Literally.

I like to think I’m realistic about what I can achieve. The odds are against my becoming The Next Big Thing in fantasy fiction, for example, or writing ‘THE’ Book On Being Autistic, or even making a living out of writing, let alone getting rich. So I’m not fooling myself, but I need to Do Things anyway, because the alternative is dying feeling like I’ve missed the only chances I have left to achieve anything with the creative gifts I have. And that’s without the creative impulse itself driving me.

But that’s not my only motivation to ‘get busy’ with writing. I look back and want to weep sometimes, how much of my life has been wasted. If only I’d known everything then that I know now about myself, how different things could have been. If only I’d had the right supports, the right understanding, the acceptance that is still begrudged to so many neurodivergents, how different my life would have been. How much more I could have achieved, how many projects I could have completed, books I could have written, paintings I could have done… How I could have known how to look after my health better, let go of anxiety better, got out of toxic relationships earlier or not gotten into them at all, and most especially accepted my neuro-self better…

Pointless, I know, but I can’t help thinking that it could have been all so different.

Because my chronic weariness isn’t just physical, but a weariness of the SOUL. I’m so tired of a world which I constantly jar against, and which continually judges us and finds us wanting, while usually lacking all understanding of what it really means to be autistic. I’m tired of the implicit insistence that ‘neurotypical is best’, when neurotypicals have so many conspicuous lacks and faults themselves. Being NT is not the be-all and end-all of being human that too many still assume it is. It’s a seriously warped and crappy world they’ve created, and it feels like it’s getting worse by the day. When my time comes, I won’t be sorry to leave it, only to leave the people I care about. Yes, I’m angry, but it’s a tired, ancient anger, laced with sadness, with little hope of any resolution.

Anyway. Here I am, in the twilight of my life, and I‘m really not sure where to from here. I still want to make a difference however, and still feel I have something to contribute. Time will tell how much, and in what way. But it’s a primary motivation to carry on with my efforts to get at least *something* done.

Because while it’s too late for me - I’m a damaged soul - if there’s one thing that keeps me going, it’s a determination to try to make things at least a *little* better for those who come after us. If anything I write or do or say helps others not go through the kind of life I’ve had, or to imagine a better or at least different world, then it’s worth it. Because they deserve better. We all deserve, and deserved, better.

The Issues of Older Autistics

Recently one of my favourite bloggers decided to stop writing her autism blog. Her reasons are many, but one of them is that she feels the autism rights movement is too youth-orientated, and that as an older autistic woman she is unable to identify with the issues that currently preoccupy the movement.

Her reference is to the US situation, and I don’t feel autistic advocates here in New Zealand are quite so focussed on ‘youth issues’, yet in the wider ‘autism community’, it certainly seems to be like that. Children used to be, and to a large extent still are, the focus of parent-led groups, government agencies, the education system and the media. But now as the supposed ‘tsunami’ of autistics are coming into adolescence and young adulthood, the focus is also on such issues as transitioning to high school, or from there to university or polytech, social and relationships skills, how to conduct oneself at interviews, flatting etiquette, budgeting, etc.

Now I don’t want anyone getting me wrong. I’m not saying that young people on the spectrum don’t have major issues that need dealing with. Quite the contrary. But the issues of older people on the spectrum are largely being overlooked and unaddressed, in fact not even acknowledged. The prevailing thought (if any thought is given to us at all) seems to be “well they’ve managed up till now, so they must be all right”. Not so.

Some time ago, another autism blogger of the ‘older’ generation was saying how a friend had referred to her as ‘the last of the wild autistics’. By this she meant those of us who grew up in an era when there wasn’t even the diagnosis out there to find. Who experienced decades of adult life lost in a kind of howling wilderness, being misunderstood, rejected, reviled, pushed into at least pretending ‘normality’, and generally dumped on for being ‘different’. Who agonised and stumbled and bumbled their way through that wilderness somehow, learning a lot along the way, but paying a dreadful cost for it. And now we find ourselves in a peculiar situation, one that may never be repeated. We’re too old for, and usually don’t need, the kind of help being offered to younger autistics. But that doesn’t mean we don’t have other problems. The following is an attempt at listing what I see as the issues facing older autistics.

1) Emotional ‘Baggage’. We may have gained at least some social skills and awareness, but we all carry scars from having learnt them the hard way. Decades of ill-treatment, for instance, and/or of not recognising that we are being ill-treated till it’s too late, have often left us so hyper-sensitive, we see insults and rejections even when they aren’t there – or rather, we’re so unsure whether they’re there or not, we angst over it endlessly – sometimes for years afterwards. Which adds layer upon layer of confusion, bewilderment, shame, embarrassment, anger, resentment, self-hatred and low self-esteem to the pain we already feel. Some of us have become semi-recluses because of this. Others just go through life with a ‘chip on the shoulder’, which others don’t understand, blaming the individual, when in fact it’s the decades of undiagnosed autism that is the problem.

2) Health Issues. Like NTs of our age group, we are ageing, becoming infirm, developing health issues. Unlike them, we struggle to communicate to doctors and nurses our special needs, how we are hyper- or hypo-sensitive to pain or touch, for instance. Or how we just can’t eat certain foods, no matter how many times we are told it’s essential for our health to have them, or that the tests say we ‘don’t have an allergy’. Or our trouble with auditory processing issues, which for at least some of us seem to worsen as we get older, or how our ‘co-morbids’ complicate our lives. And our health issues are often worse than people our age, due to the severe levels of stress (and poverty) we’ve experienced. And then there’s the thought of what will happen to us if we reach a point where we can’t look after ourselves anymore. My own personal nightmare is the thought of being forced into some old folk’s home – where I would have no room to paint or write, and no solitude to do it in, and would be expected to interact with others all day, every day. It makes me shudder even to write about it.

3) Employment Issues. Employment is a big issue for many older autistics. We may have learnt how to conduct ourselves at a job interview, but chances are our employment history is chaotic, spotty or almost non-existent, we may have trouble getting on with our bosses or co-workers (often due to that unresolved emotional baggage I mentioned above); or perhaps our educational history is as confused or lacking as our work history. We may feel we could do a particular job, but don’t have the ‘right’ qualifications, and it’s too late to spend years more getting them. We are often poor, marginalised, un- or under-employed, and lack hope of ever getting out of that situation. Or we’re employed, but have struggled through years of feeling lost, and overwhelmed by the social demands of the job. This latter has lead to early ‘retirement’ for some, and/or major health issues.

4) Family Issues. Some older autistics have good connections to their family (I count myself as one of the lucky ones, in this respect). Many, however, are alienated from their families, who didn’t understand that their behaviour was due to undiagnosed autism, and not to the individual simply being a jerk, an arrogant bitch, or a deliberate pain in the posterior. Or family members are hostile, hypercritical, judgemental, and unsupportive. The result for an ageing autistic is that they are often left to deal with life on their own. When you add in that this group is likely to have few or no friends, to possibly not be part of any social network like a church, to be poor, and to have health issues related to their decades of undiagnosed autism, the prognosis for a comfortable ‘senior citizen’ phase of their life looks very poor indeed. These are the sort of people who stand a high risk of not being found till several months after they die, alone, in their tiny, substandard living accommodations.

5) Relationship Issues. The same things that happen with families of origin, are likely to happen with marriages and/or children. Our history of adult relationships can be messy, confused, patchy, non-existent, and/or we’ve left a trail of angry, confused people behind us. Some have been, or still are, victims of abuse in those relationships. Some are even alienated from, or have only distant relationships with, their own children and/or grandchildren. Some of us have given up on the whole business of sexual relationships or marriage, it’s just too much hard work. Which is our right, but once again leaves us alone, and without support, as we age and become more infirm.

This is only a rudimentary attempt at defining what older autistics need, and not intended to be the ‘final word’ on the subject. I hope that others will develop and continue the discussion. What I do know is that we don’t need – or want - our hands held, or patted “there, there dear”, and we’re past the stage of needing social skills classes or ‘transitions’. What we want is what anyone else in special circumstances wants – recognition, understanding, respect, support and practical assistance. The exact shape of the latter has yet to be defined, and will probably differ from one older autistic to another anyway. What is important however, is that we should not be disregarded, just because it looks as though we are ‘managing’.