Friday, April 6, 2012

You are walking on my kid...

The combination of autism, the internet and the times is becoming more interesting (in the Chinese proverb sense) all the time.

On one edge, are the service providers, advertising to a growing market that their approach is the key. Within that corner, there’s Early Intervention saying ‘do it now, or the window will close’, the biomed practitioners with deeply attractive recovery narratives, and peak bodies who offer comfort in watered down statistics and blue light campaigns.

On another, there’s the neurodiversity camp. Adults (principally) living with autism, presenting passionate, articulate arguments about the validity of life as an autistic person, often countering the ‘cure’ debate.

Over on another side, there’s the political lobby. An equally passionate, deeply confronting approach focussed on vaccine safety, environmental triggers, systemic societal issues, the exposition of shocking instances of abuse and neglect. These guys, in my mind, hold up a mirror for us (whether we want to look or not), and create a lot of very necessary controversy.

And there’s the parents, like me. All on our own journey, informed by our own experiences, what we read and what we observe around us. Some of us, more noisy than others. Most of us deeply disquieted by what we see, how we live, what we find. Some of us have a foot in one of the above camps, some have a foot in all camps, some have no affiliations at all. All of us (I'd speculate) have a deep desire to make the present and the future a little less crazy for our kids.

Some days, it is hard to know where to look.

After much personal wailing and gnashing of teeth, I might have come to some resolution here.

I'm thinking… the diversity of perspectives in autism world, is reflective of the diversity of autism. No two autistic kids are identical, so, it's unlikely reaching consensus on anything related to their lives is going to be easy.

So, I should look to Billy.

Look at him and see what he needs, as a human being. I should not limit myself, and therefore limit him, to one perspective or another. I have not joined a cult, I have a child with autism.

To the aforementioned four horsemen of the autism apocalypse, I say this (borrowed from Billy’s namesake WB Yeats, and his poem ‘Cloths of Heaven’).

I have spread my dreams under your feet;
Tread softly because you tread on my dreams.

Please be respectful of myself, my child and the validity of our journey. Please don't tell me how to parent. Please don't assume you are representing me or him. We have our own voices, and they may differ from yours.

It cannot be my place, or anyone else’s (ideally) to invalidate anyone’s path. We are all correct, and no-one is correct. In autism world, unless I am missing some vital memo, there is no correct. We have no absolute cause, we have no cure, we have a bunch of hypotheses (which has to be hopeful, not a cause for division).

Right now, I’m watching impressive people around me crash and burn with anger. I’m feeling it myself, and the pointlessness of my anger is disquieting. All this passion we are all feeling is based on what? Our fears, our hopes, our dreams; for our children, for each others children, for future children.

So, I’m taking WB’s advice to heart. I’m going to focus on treading softly. I do not want to crush my kids’ dreams, my dreams or anyone else’s dreams.

There might be a way to slow down the autism numbers in someone’s head, or a way to make school work better for ASD kids or… a hoverboard.

Who wants to crush that?

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Valerie's increasingly random ravings can be found at Jump on the Rollercoaster.