A couple of years ago, my family and I took part in a study conducted by a Phd student of Cambridge University looking at whether parents of more than one autistic child were more likely to display autistic traits/tendencies themselves. We have three sons, all diagnosed with autistic spectrum disorders, now in their teens/early twenties so we were prime candidates. It was all very interesting, the guy came to our house with his very nice Scandinavian assistant and conducted a whole range of tests on our cognitive function and personality traits and asked a load of questions designed to tease out how we would behave in a variety of situations.
Off they went and we thought no more of it until a couple of weeks ago when we were emailed with the findings. I had wondered for a long time if I had a touch of the Aspergers as well, which wouldn't be surprising since I had managed to produce three of them, but apparently the sample of 62 families showed no greater incidence of autistic traits than any other members of the population. This is not to say that I don't have them, I did an independent test that showed that I do have some traits but plenty of neurotypical traits as well, so inconclusive.
What the study did reveal, however, which came as no surprise whatsoever to me, is that people with more than one austistic child are much more likely to experience anxiety and depression! I could have told him that straight off the bat without him going to the trouble of interviewing 61 other families. The stress of looking after my three when they were young was immense, I had to have eyes in the back of my head 24 /7 just to keep them safe because they took so long to learn not to do the kind of things that NT kids pick up pretty quickly. Even now we have our moments, my fifteen year old nearly ran across the road in front of a van a couple of months ago through not paying attention. I nearly had a heart attack on the spot.
They have learned, but it has been a long and painful process, and I have lost my own good health somewhere along the way due to the stresses of the role. Much as I love them dearly and am proud of how they themselves have struggled long and hard to overcome and manage their disabilities, the stresses are ongoing even now. They struggle to cope with the social aspects of their lives in their own different ways. The middle son's daily life is one long existential crisis that I somehow have to try and keep on an even keel, the youngest has a bunch of phobias that interfere with all our lives, including pheasants, frogs, the dark, moths, and old people. He runs away from us while we are out, he runs away from anyone who comes into our home, he runs away from people he knows while we are out and about. He used to hide under the checkout if he saw his teacher at the supermarket, because she was in the wrong place and he couldn't handle that. That was a bit of an improvement over throwing himself on the floor full length and having a tantrum. You can cope with that in a two year old, but when the child is ten (or more!), it's got to be all about the bad parenting. Hasn't it? I would never judge anyone for their children's bad behaviour now, knowing what I know.
A lot of the stress can come from trying to cope with other people's disbelief and disapproval. Autistic children usually look perfectly normal, and it's surprising how many people think that makes them normal. It really doesn't. Telling an autistic child to behave is like telling a blind person to see. They just can't do it. They don't even fully understand what you mean. Their social brains are not wired correctly, that's what makes them autistic. They have their own rules, which are very different to everyone else's. They struggle to cope with change (and that means EVERYTHING, from the clothes they are wearing to their route to school to the arrangement of the food on their plate. And don't even get me started on the food issues). They have rail track minds, and can't be diverted from their chosen path. They won't believe what they are told, they have to find out themselves. They are very literal in their interpretation of what people say, and they have very little common sense. They are either superclean or superdirty. Two of mine are superclean, the other's reasoning goes 'I'm going to die in the end anyway, so why bother?' There's nihilism for you. They have obsessive interests, which can be bizarre. One of my friend's son's is obsessed with traffic lights.
My eldest son was obsessed with trains when he was young, we used to spend every Saturday driving up and down the country to look at railway stations in the vain hope of seeing a train go by. We would hang around on windy platforms until the one train of the afternoon had done it's thing, it often took an hour or more. But it was ok, because the other two were obsessed with animals, so we would wait until we had seen the train, then head for the nearest zoo.
Now, it's all computer games, natch. Trains and zoos finally left behind and I can spend my Saturdays hiding in the garden shed while they do whatever it is they do with Football Manager, Final Fantasy or Pokemon. It's rarely calm in our house, we have dramas every day, and I'm sure other parents of autistic kids can relate to this. It's a tough journey in many ways, but deeply rewarding too, when some little progress towards independence and socialisation is made. Some people seem to think that parents of disabled kids are saints, but they don't seem to realise that you don't ask for the job, it just happens to you and you have to roll with it and make the best of the situation. I've met loads of really interesting and supportive people on my journey as a parent of autistic kids, some of them have become friends for life, so it's far from all bad news. I couldn't have survived it without their dad, my mother (sadly no longer with us), and the good friends who gave invaluable support, mostly just by being there for me and taking my mind off the worst bits.
My children are amazing, wonderful, beautiful and I'm more proud of them than I can say. So in spite of the stratospheric levels of anxiety and stress, and even the depression (which I seem to have overcome anyway), I absolutely wouldn't be without them.
Listening to: The boiler firing up
Reading: The Salmon of Knowledge
Watching: polymer clay tuts
Playing: with polymer clay
Drinking: blueberry tea