Valerie Foley

Archive for May, 2013|Monthly archive page

Putting the big girl’s undies on…

In Action, Parent issues on May 26, 2013 at 7:34 am


I’m inspired by the news coming out of Autism One in Chicago, and the MINDD International Forum here in Sydney.

I’m bored with people playing victim and bully and attention seeker and insta-theory genius.

I’m interested in action, change and getting stuff done.

I’m going to wear this ring – to remind myself I am serious.

What if we’ve got it all wrong…

In Parent issues, Perceptions on May 8, 2013 at 12:08 pm

We are wrapping up a spectacular holiday in the Snowy Mountains. It’s 6 or so hours drive from home, stunningly beautiful and the home of Australia’s highest peak, Mt Kosciuszko.

Billy, contrary to autism related expectations, is a stellar traveler. He loves an adventure, the newer the better. The one caveat is that he is with us. This time, we got to bring the dog, which made it extra perfect.

Apart from being dumbfounded by the lack of McDonalds (all the superfood in the world hasn’t dulled the love of McDonalds chips), Billy is in heaven. He is hiking, looking for animals, identifying wildlife poo, appreciating the art of a good fire and generally loving life.

In these moments, I am reminded (loudly) why we live the way we do.

I am not ashamed to say, despite the contemporary love of connected parent bashing, we have refocused our lives to fit our son. We do what it right for him first. In a parallel universe, we would be quite the obnoxious family.

We do not live a strange life, by any stretch of the imagination, but we do not do things that antagonise Billy, just because that’s what ‘people’ do. He has an issue with sound, so we minimise the effects of the sounds that hurt him. He is overwhelmed by the company of more than a couple of folk at a time, so we home school and mete out his social hours at his request. He has a passion for learning about animals, so we spend our leisure time in the company of the finned, the furred and the feathered.

We do this for a couple of reasons.

The most important, is that it makes us all happy. It also seems exactly the same as what the families with talented sports kids or eisteddfod participants or chess aficionados do – just with animals and quiet and just a few chosen friends. Finally, and seeming like it might compete with the happy reason for importance – all our instincts scream that this is the best thing we can do as Billy’s parents.

A surprising number of people take the time to tell us helpful things like ‘he has to learn sometime’, and ‘you are not helping him fit in’ and the odd ‘you will live to regret this’… and to them we say, thanks for coming, here’s your coat.

Because here’s the thing.

No matter how many ‘different, not less’ platitudes we want to throw around, it seems entirely wrong to forget that different means… different. No matter how much I might have wanted it, Billy is not on anything resembling a ‘normal’ trajectory. He is literally, figuratively and neurologically on his own path.

So why are we encouraged, so rigorously, to force him onto ours?

It’s not about health and well being, that’s for sure. It might be about about a perverse finger crossing exercise that we, as parents of children with developmental disabilities, are encouraged to engage in – the idea that if we attend enough funded playgroups, the condition will magically disappear.

Realistically, though, if the ‘learn to be normal’ strategy is about anything at all, it’s about effectively minimising the need to pay attention to the root cause, the prevention and the treatment of ‘autism’. Maybe with a bit of, ‘it’s best to fit in’ thrown over the top for seasoning.

From the first days of Early Intervention, we were encouraged to teach Billy that his behaviour and preferences needed to be more like his NT peers. He needed to ‘learn’ to play with other children, he needed to be deprived of the things he chose and instead be provided with ‘appropriate’ toys. His speech was wrong, his body made the wrong choices and his brain… well, lets not even go there.

We called bullshit very early on.

Maybe it’s because I have a lot of siblings, maybe it’s because I studied education, maybe I was hugged an inappropriate amount as a child… but seriously, what is right about telling your two-year old they are wrong?

He wasn’t wrong. He was different. And the odd thing was (and the reason why we jumped on the Temple Grandin aphorism bandwagon so enthusiastically at first), different didn’t seem wrong to us.

Different simply seemed different to what we expected, and different has never seemed difficult. It just seems like our son. We don’t feel the need to normalise either him, or his condition. We also don’t accept that his difference is a random roll of the dice, or that it’s untreatable.

People choose to interpret the time and effort we pour into improving our son’s health and functioning in a number of ways, but really, it’s simple. To us, epilepsy is something that needs treatment. So is transverse myelitis. So is chronic GI inflammation. So is self limiting food, reacting violently to high pitched sound, and zenning oneself to sleep in crowded situations.

There’s a sliding scale of fixable, and a sliding scale of what we know anything about yet, and a sliding scale of what people are willing to write off because of parts one and two of this sliding scale. We’re all learning how to handle this, because twenty years ago it was rare.

But here’s the thing.

Billy should be who he is. How normal (or not) that is, means absolutely nothing. Billy should also be the healthiest and most well he can be. Ignoring that would make me worthy of the report to child protective services that a ‘kindly’ teacher treated me to.

And yet, the majority of autism related doctors will happily tell us that autism has nothing to do with health, and health has nothing to do with autism. A proportion of the adult autistic community will say the same, because equating illness with their condition is somehow a slight on their integrity. Because, I often look at sick people as weaker than me… less useful, less worthy. That’s just the kind of person I am.

Gosh, I hope the irony plays out in that last sentence, but quite frankly, if it doesn’t… stop reading.

I think the way we approach autism intervention is wrong. I think the way we handle autism in our education and health sectors is deeply flawed. I think we have framed autistic people as busted NT people, and I think that is ridiculously stupid. As stupid as calling systemic ill-health normal.

The same parental instinct that said, ‘No, my son dislikes the noise of children so he will not be forced into circle time, thanks’ also says, ‘This is a very serious condition (or set of conditions) he lives with and no amount of acceptance will cure it or him. I would much prefer a rigorous application of science, thanks.’

It’s happening. It’s increasing. It’s not getting easier for anyone.

I watch as the media, the government, the sadly preoccupied with renovating the dominant paradigm try to derail the revolution that’s required to solve the disaster that is the autism epidemic, and I see the same faces that told us to teach our disabled child that he was wrong.

I look at the areas of life that I think need serious analysis if we have any hope of slowing the autism diagnosis rate – education, child health (including vaccination), general health, environment, nutrition, industry, economics, lifestyle… and I see the same faces – those who have a vested interest in not fixing it.

It takes one ‘news’ story, about one study, on one aspect of what needs a pile of critical thought, and the great uninvolved suddenly know everything about autism. They know that vaccines are unrelated. They know that ABA is the key. They know that biomed is malarkey.

It seems to have escaped their attention that the media has also taught them everything they need to know about Jennifer Aniston’s pregnancy, Kim Kardashian’s integrity and John Travolta’s sexuality.

The lack of rigor applied to the dissemination of information about autism by the public in general, is depressing but unsurprising. Who wants to think that basic tenets of life like food, medicine and chemical usage needs drastic change? I sure didn’t, until they all came and blew a giant hole in my family.

But I know this like I know I don’t care if Jennifer Aniston never procreates… if we don’t change, the results will be catastrophic. I know this because I am an average person, of average means, who has no idea how her only child will survive on his own in one of the strongest economies in the Western world.

Write off this generation of kids if it makes you feel less confronted, but know that if autism hasn’t hit your family now, it will. Without change, the trend is terrifying. Just because we don’t know exactly which change should happen first, doesn’t make the necessity for it any less.

We know a bunch of things that can have a positive effect, and if I was Queen of the World, I would encourage people to sharpen their skills at identifying the kinds of people who tell them not to try any of them.

Why do doctors tell you diet won’t help? Why do teachers encourage you to medicate your child? Why is a behavioural diagnosis a catch all for a whole bunch of medical issues, acute or chronic that would be cause for major concern in children without that diagnosis?

Because it’s too hard, maybe? Because the change required to even begin to address it is immense? Because we caused it in the first place and there’s too much money riding on the processes that keep it going?

We are doing this wrong.

It makes me as sad as seeing junk food companies running fundraising programs in the same schools supposedly intending to combat childhood obesity with lunchbox guidelines. The vested interests and economic drivers far outweigh soft concepts like well being, caution or anecdotal experience.

Are we that stupid? Are we just programmed to not think critically anymore? Or have we lulled ourselves into such a sense of information security that we need to have something heartbreaking happen in our lives before we start wondering if maybe plastic wrapped white bread and peanut butter with six ingredients might not be good for us.

As my family prepares to head back to normal life, as abnormal as it is, I look at my calm little man. He’s dreaming of wallabies and wombats after getting an unprecedented peek into their actual habitat. He’s planning our next adventure, unaware of the sea of specialist appointments he has to attend between now and then.

He is happy.

Is he capable of being ‘normal’? Probably not. If he was capable, would the extreme cost of being ‘normal’ be worth it? Absolutely not.

In the pursuit of wellness for Billy, I will push the doctors. I will challenge the teachers. I will question the policy makers. I will not, however, twist my son into a socially acceptable shape in the name of therapy, education or success.

Will I do everything I can to make him the healthiest boy possible? You bet I will.

That same framework is, in my mind at least, what we need to do as a society in our approach to autism. Accept and respect the autistic people we have, of course we should… it’s not even a question. Keep going, like we are now,  thinking that no change is required, and that it’s OK for the diagnosis rate to rise exponentially. We can’t. We just can’t.

If that’s all we’ve got, we have definitely got it all wrong.

There’s a big difference between accepting an individual with autism, and accepting that autism is inevitable. One I am all over. The other is as insane as trawling the internet for Jennifer Aniston’s ultrasound pictures.