Valerie Foley

We need to talk about ‘autism’…

In Action, Parent issues, Perceptions on March 3, 2013 at 2:10 am

April’s a coming…

If we needed any proof at all that autism is a contemporary epidemic, we just need to look at the ever growing divisions between autism parents.

I think I can safely say, very few of us had any of this in mind when we gave birth.

In recent days, I’ve had conversations with other mid-range veterans about the need for a thinking space where people who are past the initial shock, the initial grief, and the initial ‘hooray for autism’ phases can communicate openly with each other.

It’s not that those things aren’t important for people to go through, in whatever sequence makes sense to them. It’s that once you are past them (if you get past them), your tolerance for their passivity and lack of inertia (and general tone, if I’m brutally honest) starts to atrophy.

It may be because you are facing increasing amounts of serious medical crisis (as opposed to accepting that all these pesky ‘symptoms’ are ‘autism’).

It might be because life is all of a sudden getting really real (in contrast to the ‘they might grow out of it’ mentality we are all lulled into… newsflash, btw, they probably won’t and it seriouses-up fast when they don’t).

It may be because in your own temperament, within your person, as a product of your upbringing, in the wake of a lack of hugging, (insert your own reason)… you are simply not a change agent or a fan of change agent type activity.

Doesn’t matter why, to me.

These things just are, and that’s what makes human diversity.

Moreover, in autism there are people who can talk and people who can’t. People who can live independently and people who can’t. People who need regular hospital care and people who don’t. It’s a spectrum disorder.

So the idea that those who need less, actively campaign against those who need more, is not just insane, it’s got a really ugly feel to it.

In other social movements, the stay in the same placers tend to stay in the same place, and the move forwarders tend to move forwards. Makes sense. In autism, the stay in the same placers seem to need to slow down the forward momentum, and I’m buggered if I understand why. Because if you are happy with the status quo, wouldn’t you just um, live it?

We all have different stories that inform our perspectives. It’s hard for all of us.

But some of us aren’t happy with it staying hard, and so we fight for the change we think is necessary. That change is generally the right to chose a more appropriate path, medically and socially, for our kids.

I reached a point where ‘hooray for autism’ was not enough. In fact, it was embarrassing. Actually, it has become something that drives me senselessly around the house looking for sharp objects and something non-living to use them on. But that’s just me.

The point that turned me was my son’s health. It was the frightening co-incidences in diagnoses and conditions among the cohort of autistic kids he has grown with. It was the growing realisation of the medical reality of this condition, despite years of convincing myself otherwise. It was, scariest of all, the startlingly blankly similar reactions in a growing legion of doctors who had no answers for us.

Actually, I lie. They had one answer, ‘It’s just autism.’

I would read stories about really sick kids, from autism parents elsewhere, and I’d think, ‘Wow, that must be awful.’ I’d seen similar patterns of crisis in overseas stories and thought, ‘Gosh, I’m so grateful that’s not what we are dealing with.’ And in the back of my head, I’m thinking, I hope that problem with pooping isn’t more serious than they say… I hope that ‘freak’ auto immune attack that paralysed him wasn’t related to anything else… I hope those staring spells and tremors don’t mean anything.

It was, and it is and they do.

If they (the nagging fears) don’t mean anything bigger for your child (or you don’t have them at all), then I think you are very very fortunate. And I’m very happy for you.

But here’s the important thing.

Your personal experience contributes to the massive growing pool of autism experience. It is not indicative of everyone who shares the experience of autism. The reality of your experience does not negate the integrity or validity of anyone else’s experience.

And yet, by virtue of the diagnosis our children share, we spend a massive amount of time acting as though we share the same experience.

Even more insanely, (and maybe because doing less is generally more attractive than doing more), we use mindless inspirational posters to throw shade over the seriousness of the condition. We place ‘love’ and ‘acceptance’ on one side of the scale and the demand for medical respect for sick children on the other.

So here’s what I’d like to see us talk about in April.

Count your blessings if autism is something to celebrate in your lives.

Then, open your mind to the fact that it shouldn’t be. Stick with this. Listen, even if your guts are churning. You don’t have to change your mind. It’s your mind.

All of us love our children. All of us accept our children. These things are not in question.

Here is what is in question, for me.

Is autism a random act of fate, genetic or otherwise? Or, is it something we all play a role in, like say diabetes, allergies, asthma, cancer? Yup, I went there. Cancer and autism in the same sentence. I question whether our choices, lifestyle, medical advice played a role in causing and exacerbating this condition in our son, and I question whether our societal choices play a role in causing and exacerbating this condition in a generation of kids. I don’t have all the answers, but I gain a lot from the search for them.

Does that make me love and accept my child any less?

I’m actually not going to answer my own stupid question, because it’s so damned ridiculous. What I will happily admit is that I was sucked in mightily by a passive acceptance manifesto for way to long. I promoted the ‘there’s nothing wrong with Billy and everything wrong with the world that judges him’ for a long time. And in that time, my son got sicker and sicker. If you want to follow that journey in painful (and sometimes witty) relief, download it for free here.

But that’s my journey, and everyone’s journey is different.

How is it I can say that, and yet others feel happy telling me my son’s story is (somehow, mysteriously and illogically) a random unfortunate series of events, and I am inventing logical connections because I have Munchausens or some other invented condition and so do all my crazy imaginary friends..?

As April approaches, I am bracing myself for a barrage of nonsense.

I am happy to report that my chosen perspective on autism advocacy is being presented now more than ever before on the information super highway. I am inspired and affirmed by the rigor and passion of the Thinking Mom’s Revolution. I am informed and challenged by Age of Autism. I am calmed and educated by Autism One. If there’s a fence, I choose to stand on their side. Do I agree with everything they say? No. Do I agree with everything anyone says? No. Does it stop me confidently standing on this side? No way.

If you identify on the other side, the ‘I wouldn’t trade my autistic kid for anything’ (whatever that means) side, it’s all good. I know you have a lot on your plate, and it’s not easy, and I’m guessing there’s a lot of comfort and focus in your side (as there is in mine).

Enjoy it.

And then, back off my turf.

It is hard enough to convince the actual doctors we see in our actual days that autism is not a good enough explanation for our son’s medical issues, or that adult doses of medication is not a good enough long term solution. We need change in this realm. If you do not, awesome, it’s no skin off your nose if I fight for it, so leave me to it.

Leave us to it. You have what you need. We are not competing.

It is hard enough to convince teachers and educational administrators that children with autism who are mainstreamed need complex and expensive support in the classroom. There is no other appropriate place for many of these kids, and they have to be in some kind of educational setting because that’s the law. So enjoy the fact that you need less, and support the fight for the kids who need more.

Or, even less confronting, just let the people who have to fight fight, and you do what you do.

The nonsense idea that just because your experience of autism means you see no need for change, then no-one’s experience of autism reflects that need, is just… immature. Politically and socially immature.

There is so much to question, so much to consider, so much to try… so much that can be done.

As much as I’d like to sit back and hum along to Simon & Garfunkel next month, I’ve got work to do.

  1. I’ve never been in the hooray phase but then I’ve never been much of an embracer.

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