Recently I had a long and wonderful lunch with a dear and close friend. We go back many years, although we’ve only regained contact in the last 4 or 5. During our long years without seeing or hearing from each other – as I discovered when we met up for the first time after that period – my friend had been widowed in excruciating circumstances, and had also had 2 children. Her eldest child is towards the extreme end of the autistic spectrum: he has no language, and communication with him is a constant and formidable challenge.
This post is, in one sense, not about autism at all. In common with, I suspect, the vast majority of people, autism is something that I’ve heard of, have some rudimentary knowledge of, know is an increasingly common diagnosis, and which has been brought to my attention over the last few years mostly in the context of the long and fractious contention over autism’s alleged connection with the MMR vaccine. That particular dispute may, in the minds of just about everyone except some parents of autistic children, have now been finally resolved, but its genesis is too easily put down to parental gullibility; parents want to be able to blame something for their misfortune, and have therefore clutched with an almost pathetic desperation on an unscientific and unproven myth. Thus the narrative goes.
The reality, I think, is rather different. There is perhaps one small grain of truth in it though, and that’s contained in that word, desperation. And I have to say that if I’d had to go through what my friend has gone, and is going, through desperate is exactly what I’d bloody well be. What I probably wouldn’t be, and what she is in spades, is resilient, courageous, determined, tenacious, committed, resourceful, beautiful and inspiring. She’s also, on occasion, angry, despairing, lonely, isolated, fearful, and very, very, very tired.
Much of what she endures cannot be mitigated, cannot be diluted with support, or money, or anything else. She knows that. But she also knows that many of the challenges she faces have nothing intrinsically to do with autism at all, just like this post. They are the thoughtless, careless consequences of unimaginative, under-resourced, ill-trained staff who simply don’t understand how difficult it is to cope with an autistic boy in his mid-teens, and who, doubtless unwittingly, make an already almost unbearable situation maddeningly worse.
Autism is characterised by, amongst so many other things, the fierce need for predictability. So to be phoned up to be told that a new carer is going to accompany her son to his special school tomorrow – someone he doesn’t know, won’t recognise, won’t be able to communicate with – is an unbelievably disruptive and aggravating experience. It requires, yet again, an explanation of the blindingly obvious to an agency that should not require such an explanation. It takes yet more energy. Yet more frustration. Yet more anger.
When her son was approaching school age, my friend had to spend months and years fighting for adequate provision. And then she had to do it all over again when he came to secondary school age. And when he reaches 19 and he can no longer go to his secondary school? Who knows.
But this constant fighting, constant anxiety, constant avoiding or negotiating of often unnecessary obstacles, is only a tiny part of the challenge she faces. The big, almost inexpressible, majority of that challenge is existential. It’s magnified in her case by the loneliness and loss that comes from being widowed. One thing she really doesn’t have time, or energy, for is to start on the intricate dance of meeting someone, of romance, of all that jazz. For sure that magnifies, but it doesn’t create the angst of being the parent to an autistic child. That comes from the tragedy of the condition’s imprisonment of one’s child; from its intractable and never-ending nature; from the pain of never being able to enter into one’s child’s world, or ever really understand what his world is like; from the anxiety of suddenly being the subject of unprovoked, hormone-fuelled assault.
I simply can’t adequately express my admiration for her fortitude, her courage, her unquenchable sense of humour, her seemingly bottomless well of resourcefulness and energy. And I can never fully appreciate her loneliness and her profound and ever-present – if always hidden – sadness.
She’s not alone, of course. And so this post is one small attempt to express something on behalf of all the mums and dads who daily have to face the challenge of their autistic children. It’s not all gloom, and there’s joy too. But most of us simply don’t have a clue. It’s time we got one. It’s time we campaigned for better services. It’s time we stood up for autism.