Things I wish someone had told me about autism

The first few months of a ASD diagnosis are lonely ones. They are long and introspective; you and your spouse sink into a long dark night of the soul. You ask, how did I let this happen.

But of course, there's no reason to suspect that you did. There's no reason to suspect that you had any control. But you ask the questions anyway.

The reason you do it is because there are so few answers available now, and there were so few questions then. There were so few questions then because there were so few markers on the road, and the questions that could have been asked weren't asked. They weren't asked because you didn't even know what to ask.

There are certain questions that I wish I had asked and, even more important, there are certain things I wish I had known so that I would have known when to ask.

Your child doesn't have to be Rain Man to be autistic

Natalie looked us in the eye. She hugged and kissed us. She was happy. She would interact with us. That wasn't autism. When the warning signs first came, we thought that autism was something a whole lot worse: it meant ignoring people around you, constantly stimming back and forth like Rain Man; or, it meant becoming violent when someone touched you, like the autistic brother in Something About Mary. We thought it meant mental retardation like the father in I Am Sam. And Natalie was none of those things.

But autism can creep in on the back of a lamb, and some of the warning signs get drowned out by your relief that she isn't presenting all of the warning signs.

Everyone, yes, everyone may be wrong

It took three tries before our doctor would refer us to a paediatrician for our daughter.

"She's fine," he would tell us, "kids develop at different paces."

At daycare, they told us Natalie was just fine. We tried to pin them down on several occasions, with the same result.

"Yes," they would nod wistfully, " she doesn't play with kids that much. But that's nothing, really. We see it all the time. She's fine."

Remember that everyone wants to give you good news, and no one wants to give you bad news, and, if the warning signs are mixed, they will tend to err on the side of optimism. If you have a nagging feeling, listen to it instead.

It's not curable

It was nice having hope that one day we would all wake up and her autism would be a thing from long ago, but that's not the case. There are anecdotes of children who did such a thing, as if recovering from a cold. But I wish I had known then that it was a bad idea to live in that hope.

I wasted too much time looking for the silver bullet, and wasted too much energy anguishing over never finding it. All of this was at the expense of my daughter.

I wish I had understood from the start that treatment means structure and routine, and repeating the same steps every day. It meant understanding that this would be a lifetime of course correction. because then I would have begun teaching her those skills sooner.



No comments:

Post a comment