A while back, someone sent me a link to an article that said that mother’s of kids with autism have the same type of stress as combat veterans. This is not news, but it’s nice to have this kind of twisted validation. I showed it to my husband, and he laughed and said “No kidding, we live with an IED.” Exactly. It’s the perfect illustration of what living with autism is like – you live under the same roof as an Improvised Explosive Device. Just walking past – even a conversation with another person – can cause a freakout. It’s like those phantom light switches that don’t turn anything on – some unsuspecting soul in China flips a switch and your child ignites.
To be fair, there are also parallels with living with teenagers, but with teens you can bet that eventually they will just give up and go to their room, or – better yet – stop speaking to you. With just about any typical child, you can win the occasional argument, but that is not true with autistic people – if you decide that you are going to win they raise the stakes so high you have to rewrite the concept of what winning means- for you. In our family we have dubbed this the Pizza Kid rationale. Several years ago an autistic teen left his grandparent’s house and hid in the woods for five days because they had refused to have pizza for dinner. Five days. He was never lost – he watched people look for him while he hid, and finally, finally got hungry enough that he didn’t have the strength to elude them any more. You have to admire him for refusing to lose, but when it’s your own family, and for their own safety, you still can’t let them gain control. So you barter – it’s really the only thing that works with anyone, but you have to be much more transparent in your motives because to people with autism it’s not about winning – it’s about keeping their world the way they need it to be. Perhaps what is most unnerving of all is the randomness of it – the improvised part – what is crucial to them one day might not matter in the least on the next. They need to control everything if they are going to survive, and you are the one who can provide the order they crave, or disrupt it. So it has to boil down to life via contract – I will trade you this for that. And even then there are times when they are so freaked out by the vagaries of life – bickering siblings, changes in schedule, bad weather – that they can’t even cut a deal, and the house of cards collapses – BOOM!
But there is a silver lining to this thundercloud. You learn a lot about yourself and a lot about what motivates people of all abilities. You learn the power of your own fear and the power of someone else’s, and that managing fear – yours, their, everyone else’s – is what 99% of your struggles with autism amount to. If you can find ways to keep either one of you from being afraid, of the world, of uncertainty, of each other, eventually, hopefully, you can put the flack jackets away.
The day after I drafted this essay the New York Times ran a front page story about a boy with high functioning autism who rode the subway for eleven days because he didn’t want anyone to yell at him. This is not a closed topic.