Autism...cannot be controlled

There’s something I have learned over the last three or four years about Autism and Aspergers and it won’t be what you think.

I have learnt more about me.

I have learnt more about who I am as a parent, adult, man, human, than I think I was ever prepared for.

I am constantly surprised by what I learn about me in the throes of my son’s autism.

I posted last year that I wasn’t a good parent sometimes, I’m not. No one is perfect all the time. Sometimes the stress of our own life just gets unbearable and, throw an autism tantrum into the mix, all you want to do it scream, yell, hide, run – have a tantrum yourself.

Often, that’s exactly what happens and your kid wears it.

But you know you can’t so you just deal with it, tomorrows a new day. What I wish I had of autism is the ability to not comprehend that when I have a tantrum, it’s not normal and I can forget about it just as quick as having it.

I have learned that my son will not abide by MY rules or way of life. He has to find that for himself. I can only guide him where I think he needs to go or try and highlight the errors of his ways. But isn’t that our job as a parent anyway, regardless?

When Zac is on a tangent, theres no talking about anything else. Do you know how many times I have asked him to stop and listen to MY question? Too many to count. What I have learned is “How dare I?” How dare I interrupt what is important to him. No, I have learned that I have to wait to get my question in.

Last night was a prime example. His friend Mitchell has a big Chipmunk (from Alvin and the Chipmunks) and he was talking about wanting one on the way home. And talking, and talking.

Renee tried to ask him a question about something else, completely outside his tangent.

She got no answer.

And this is how it is. I can’t make it change. Nor should I try.

But I can challenge, tha’ts the difference.

It’s probably the one thing I liked in the movie “Extremely Close and Incredibly Loud” that referred to the aspergers the lead character had. His father (Tom Hanks) devised a challenge where the boy had to walk through Central Park asking for clues to the existence of a sixth borough of New York. There’s a line that goes something like “He will have to ask every person he meets for help, the one thing he doesn't wnat to do its genius.”

And it is. The boy’s greatest inability was to interact socially, yet his father creates a challenge, to challenge the behaviour that most challenges him.

It’s genius.

I come from a Christian faith. Where my faith is at now-a-days, I’m not sure. What I have discovered is that autism challenges that faith, challenges my understanding of God. I don’t blame God, but I also don’t believe that Zac will be healed from it, like some have suggested, ever. E.V.E.R.

Zac has it. It can’t be taken away. It can’t be healed. It can’t be changed. I accept that. Perhaps the autism has even allowed me the opportunity to challenge my own belief, my own faith. I don’t know, but what I do know is that autism can be shaped and influenced, but not changed. Not taken away.

But I, ME, WE, can’t change it. We can’t take it away. No religion, belief system, psychology, ism, or therapy will ever take it away. I accept it. Many don’t. Many can’t.

And we wouldn't want to change it. 

Early intervention is about working with those who are skilled to do so. The occupational therapist that worked with Zac, worked wonders. This kid can use his imagination now in play scenarios, where 18 months ago he couldn’t imagine inanimate objects as something real; a faceless doll look-a-like was simply that.

What I think, with hindsight and perspective, is that as much as I have challenged Zac, he has challenged me. Although at the age of 4, when he was possibly at his worse, I would not have said that. No, there is no way I would have said, 1. That I was being challenged and 2. That I appreciated it. Quite frankly, I wanted to throttle Zac and myself when he had a meltdown. I wanted to run away and hide. I wanted Renee to deal with it all.

We hear stories of parents that involve their kids in programs that force changes in behaviour. This is my opinion, but I feel sometimes these are simply about the parents having control or exerting their control. Forcing a change. There are opinions on both sides of the fence regarding these programs and I haven’t experienced it first hand, but when I look at the pros and cons, the cons concern me.

Look, don’t get me wrong, my point is that as a parent, we have to relinquish some of the control when it comes to autism. It is just a reality we have to face that sometimes the autism is in control and it can’t be changed.

I have learned that to be a parent to a child on the spectrum, you will be challenged. All the rules you lived by as a child, the ones your own parents taught you – gone out the window. All the ways in which you want to raise your child, the way you said you would raise your child – gone. The rule book – non-existent.

My step-dad, Greggles, was a tough man when I was young, but like a good wine, has matured with age. Though the rules he lived by, sometimes shine through today – still. He hates it when you say “What?” instead of “Sorry” or “Excuse me”. Manners, he says. It’s all about the manners. Zac couldn’t give two hoots about that. It’s not important. He has manners where it counts. “Please”, “Thank you”, that’s what’s important. And he has those rules down pat.

The control I try to force in many aspects of my own life have slowly been chipped away. I don’t find that I care as much about certain things as I did once before. Things like the cleanliness of my house or that everything has a place (as my Nana taught me), have gone out the window. You can’t keep a house clean with an autistic kid...heck, any kid for that matter. So relent.

The autism which shapes my sons behaviour has shaped me in more ways than one and I am now trying allow it shape me more, so that I can be the best parent for Zac, but of course I will still challenge him, because thats what I do best!