Hard News by Russell Brown


I Am: An authentic autism family experience

Watching this week's episode of TVNZ's new I Am strand, I Am Living With Aspergers, the story of David RS Greer and his family, pushed a lot of buttons for me.

To be clear, neither of our ASD sons has ever had contact with the police or the justice system, and certainly not in the way David did – although I know the statistics and that possibility is never lost on me.

But we, too, were forced to withdraw our younger son from school, and to find a way to keep clear of truancy services. We too were blamed as parents. We too had to repeatedly face down ignorant people in the system. We too sometimes cowered, awaiting the next violent, inexplicable meltdown. We too got through the tough times by being a loving family.

And we too came to understand that what our son did came down to a single fact: his experience of the world was profoundly different to ours.

Like David, our son couldn't cope with the human noise of a crowded classroom. He was excused assembly because the singing was unbearable, and a couple of times he took steps to extend his blissful silence: the class would come back from assembly to discover that he'd locked them out and was smiling happily inside. From his point of view it was a rational, resourceful response. I rather admired him for it.

A psychologist in the progamme explained that David's childhood meltdowns seemed to appear so suddenly because they were always just below a threshold of constant stress and anxiety. I remember that: I'd touch my son's skin and it would be hot. Hour after hour, day after day, stimuli he couldn't cope with had him in constant fight or flight mode. Can you imagine living that way?

That seems a long time ago and things are better now. They do get better. And in large part, that was down to our son learning to manage himself and his immediate environment. He knows he'll have to engage more with the world eventually, although not quite how yet. We'll get there. But for now the child who could be so hard to live with is intelligent and courteous, and he has a rich life online.

We're both pleased at how well his new thing, collecting and precisely painting Warhammer figurines, is working out – especially that it's not screen-based. And his no-filter experience of the world always has its benefits. Could you play a video game on one monitor and watch a movie on the other, at the same time? He does it as a matter of course. (He's also very handy for telling us when our water filters need replacing and deciphering ambiguous sounds.)

So yes, I'd recommend watching  I Am Living With Aspergers. Its rendering of an autism family experience is authentic, and I appreciated the details, like explaining that although it's not wrong or offensive to say "Aspergers", these days we generally talk about Autism Spectrum Disorder. I could have done without the wibble at the end about how we're all on the spectrum. It's true to some extent, but saying someone has multiple "quirks" instead of the one or two most of us do doesn't get near the profoundness of difference involved.

I think it's important to note that David Greer, who is highly intelligent and has learned to adapt his behaviour to social expectations, still has trouble keeping a job, in part because of stigma about who he is. Our older son, I am happy to say, recently began a job that for the first time, at age 27, feels like a real one. The difference in him, in his confidence and sense of identity, has been remarkable.

There's still a way to go. It feels like we've been parents a long time, and there's a way to go yet. We do get weary, and I still worry about the future, or feel like we've failed sometimes. But things do get better.

You can watch I Am Living with Aspergers here on TVNZ On Demand.

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