Maybe you are new to the concept of autism? We’re pretty new too. A couple of decades ago, my knowledge was limited to the film “Rainman,” which I enjoyed at the time as a piece of light entertainment on a Thursday evening. I had the odd deep thought at the time, mainly limited to the exploitation of people less fortunate than myself, but that was about it. It wasn’t that I had any more or less prejudice than the rest of the audience, it was merely that it was a subject off my radar as it had no direct impact on my life.
Things are different now. Two average girls and two autistic boys and a weekend. We are a couple of old crocks incapable of taking care of ourselves, let alone three active small children in need of entertainment, supervision and guidance. It is a helpful reminder that old people like us shouldn't breed, at least not unless each child comes with an emergency battery pack for the parent.
Perhaps you still have your inner child? I'm hunting mine down as we speak, but it's hard work. When I was a child, I just played, nobody taught me how to do it; I was a child therefore I played, that was the reason I was there, to play and grow up, not much else.
If you take the play part away from the equation, you are left with just the growing up bit. Whilst they do grow and get bigger they are merely getting larger not expanding their skill set and not getting any closer to being in the category of 'normal' or what might pass for 'normal' if you're not looking too closely. Afterall my expectations are realistic, we're aiming at blending in, that's all with a hefty dollop or two more of the happy quotient.
However, you can't blend in, if you can't play and have no sense or humour, or alternatively, a sense of humour that is unique and not enjoyed by anyone else. Your own jokes may make you happy, but if they don't match with anyone else on the planet, then there is not going to enjoy a resounding echo of laughter, and we'd like that reciprocation part of the puzzle, if we have the choice.
So lets take an everyday holiday kind of an example, a Labour Day kind of example. We will go out and play, not labour. A picnic in the wilds should be a doddle. [translation = easy] It would be easier on the beach, or by a river, any kind of water, but we're taking a more challenging example here.
So you arrive in the great out of doors. [translation = we skip over the hideous “transition” in the car] The boot of the car [translation = trunk] is over flowing with entertain as well as a whole slew of oddities to accommodation several small people’s special needs. The nail clippers are no dead weight, as long as I don’t forget to pack them, but the assorted tasilmen and plethora of clothing gives the appearance of a camping expedition.
What are you going to do? Well I'm going to sit back and read my book, whilst my children play before they come gamboling back for a picnic lunch. Or at least this would be my plan in my own personal ideal world. That’s what my mum did, that’s what all mums did in those days. Their job was to provide the treat, the opportunity to drive out into the countryside on a jaunt. Our job was to play. Unfortunately I am in a different world, a predominantly autistic one, so reading, either for myself or for them, isn't an option.
So what can we do? Well we could play tag. We could, but no-one wants to.
'Why?” is the universal response. The answer, because it is 'fun' doesn't translate either. O.k. so we dig for the inner child, put on our best happy face and start to play tag, but nobody runs anywhere, which makes it too easy to catch everybody, which doesn't model the reinforcing positive outcome of 'fun.'
Never mind, how about we climb a tree instead, sort of naughty but nice, and to hell with the environment. Again we reach the question 'why?” Indeed, why would one climb a tree? Because it's 'fun,' has the same doomed conclusion as before. We model tree climbing but no-one even observes our efforts. Making monkey noises from half way up the tree, merely draws the attention of strangers, who wonder why we are damaging a perfectly harmless tree and neglecting our children. Never mind, more fun to be had.
How about we roll down the hill and see who gets there first? “Why?” I'm so glad you asked me that, because it is 'fun.' We don't even have to race and avoid that whole nightmare of winning and losing, we’ll just do it for the proprioceptive input, go mad, why not? Apart from the obvious problem of having your body in close and personal contact with something as scratchy as the grass, there is a definite lack of enthusiasm from all quarters, apart from the adult population.
Never mind, there's a nice breeze, howabout we fly that kite, one of spouse's favourite occupations. “Why?” well yes we've done that bit and we've come to expect failure but we carry on regardless, even though jaws are beginning to ache from all the effort of this 'having fun' malarkey. Nevermind! Lets take the sedate option, afterall I'm beginning to flag a bit.
Lets throw caution to the wind, ignore Mother Nature and make daisy chains, no you don't have to make them yourself with your fine motor challenges, instead you can just pick the daisies and bring them to me. No? O.k. you can just sit and watch, whilst I make one before your eyes, it’s almost like magic. Yes I know that they're not daisies, I know that they’re California poppies, which is a bonus because orange is your favourite colour. Yes I already know that despite the speech delay you are able to pronounce 'protected species' but you're banned from saying it. You're bored to tears? This isn't doing it for you?
O.k. tell you what howabout we take reeds and blow through them to make whistling noises? No? O.k how about farting noises, you can make some great farting noises. All children think that farting noises are hilarious. Not you? Why? No? O.k. what else can we do?
Lets hunt for ants in the grass. Not ants? O.k howabout we look for any small insect life, any kind? How about you pretend to be interested just to make me happy? Sorry that one just slipped out. So, where are we?
Lets lie back, kick off our shoes, watch the clouds and see if there are any pictures in them? Of course, yes I was forgetting that you need your shoes to stay on. Can't see anything in the clouds? What about the train? Not into trains any more, sorry I was forgetting.
It begins to get to you after a while, you begin to doubt your sanity. Why do we do these particularly pointless things? Where exactly is the pleasure in doing them?
A huge chunk of them, is the enjoyment of sharing with someone else, the joint attention, not the actual activity itself, and that is why it is so futile and painful.
What about some of those mind boggling boring finger games, like round and round the garden, that you grew out of, at four perhaps five. Then you'd find that you'd go round to visit your grandparents, when you were much older and sophisticated. Your grandparents start to play finger games with you. You knew you were too old for such childish things, but you'd play along, just to see your grandparents smile and be happy, because you loved them, even if they were completely out touch with the reality of a nine year old. You'd be magnanimous, enjoy the physical contact, pretend to be a kid for a while.
It reminds me of a particularly shameful moment of my life when I was forced against my will and despite my better judgment, to buy a book which would tell me how to amuse children in small confined spaces, which at that time seemed to be largely waiting rooms. I was confident that if I could learn a hundred more games that I would be able to entertain them during the seemingly endless age, between first doubt and a diagnoses. Thereafter I would have no need to entertain copious numbers of children in small places. As it turned out, the book was a complete rip off, as I had already suspected. I already knew the majority of the 'games.' It was all a big con designed to pray on the vulnerable, the incompetent parent, oh shame on the publishing industry!
The real trouble was that I had bought the wrong book or the wrong category of book. I didn't need a book about what to play, what I needed, was a book to give me a key to access my children, something to help me break through. I could have all the games in the world but if I couldn't connect, they were useless. I needed a connection book. I didn't find a connection book until much later, but I acquired the principal tools needed, only one of which was perseverance.
I look across at spouse who has flagged, or more accurately, given up. He flies his kite, on his own personal hillock, alone. The Batman kites flutters way up high in the sky on a long, long, long piece of tatty string. Pity I didn’t pack the scissors? There again, there’s always those nail clippers!