As I hear the car door close heavily behind me, I take a deep breath and steel myself as I walk down the path to the after school facility where my 8 year old son spends his afternoons. I hold my breath as I enter the building and hope I won’t be approached by any of the staff reporting an ‘incident’. I see my boy, and I smile expectantly, the triumph of hope over experience, that today my smile will be returned and he will tell me cheerfully that he has had a good day. More often than not this does not happen. Generally he is angry, frustrated, upset or just plain cranky. Sometimes my smile persists, sometimes my shoulders sink to meet his, and we slink back to the car in sullen silence.
It’s World Autism Awareness Week. My son was diagnosed as being on the Autism Spectrum (and also with ADHD) three years ago. Am I more ‘ aware ‘ of Autism than I was three years ago? Most certainly. Do I understand it more? Not really. It’s an ever changing thing. The manifestation of my son’s Autism is always in flux. Sometimes it almost seems to disappear to nothing, so much so that I have wonder if he was misdiagnosed. Then it comes crashing back in through the door, and it’s all I can see.
This is what it looks like. This is just our story. No one else’s will be the same.
Mostly, for him, autism is a pervasive low mood, lethargy, a need to be alone, bursts of anger, an inability to cope with life’s mild irritants. When he’s hurt, or upset, he doesn’t want to be comforted. It’s taken me time to learn to walk away when he is crying, even though that goes against what I want to do for him as his mother. His sister is a loud and non-stop chatter of a four year old. He finds her noise and exuberance difficult to handle. He lashes out her. We try and quieten her, in order to calm him. I hate having to do that.
I have stopped writing about my son and autism. I felt it was unfair on him, given that so much of what I was feeling about it was negative. I feel I’m not supposed to say that. I’m supposed to say that his Autism is a gift. It’s not. I don’t like it. I wish he didn’t have it. I love him. I wouldn’t change him. I don’t know where he stops and the autism starts. Does it matter?
I wish things were easier for him. I wish things were easier for us. Why am I saying this? I don’t know. I read so many things from parents of children with autism talking about what a journey the diagnosis has been and how much their children are teaching them. What I have learned is that I’m not a good enough parent for this. My parenting skills don’t stretch this far. Many mams seem to write about it so positively, which is of course , fine. We must all tell our own truths. But my truth, at the moment, is that it’s shit. We’ve been going through a tricky few months, after a period of relative calm, so in a few months’ time I might write a different post. But not for now.
So this is for you, if you’re reading articles this week, and not recognising your family’s story. The spectrum is not a line. It’s not a journey with an end, anymore than anything else in life is. Autism, sometimes, for some people, is shit and can make family life fairly unbearable. So you’re not alone. And it can get better, but then it will probably get worse again – but I guess that’s just life, Autism or no Autism.