Friday, August 10, 2012

Moving the spotlight...

I spend a lot of time in autism world.

We live with it, we talk about it and we read about it. We devote an inordinate amount of time finding clean connection points between autism and everything else.

This week, autism took us into non-autism world, rather than the other way around.

And, like most things that happen, it got me thinking.

Billy and I were involved in a photo shoot for a prominent magazine here in Australia. The photos are to support an article written by another autism parent, exploring the question of why we all know so many more families with an autistic child than we did when we were kids.

The crew that came to take the photographs had very little experience of autism. They were respectful, curious and completely supportive of Billy.

Like any parent, I was concerned about how my boy would handle being photographed. I know how hard it is for us to get a photo of Billy looking at the camera (we take the, click 20 times for one 'successful' photo, approach). We totally get why that is, it's fine. No biggie.

Would the professionals get it, though?

Would he be able to understand their requests. I know how long it took us to adapt our way of speaking to maximise the possibility of successful communication. Again, we get it.

Would the professionals get it?

Would he be comfortable with four new people moving things around in his house? Would he just decide he wasn't doing it? Would the dog bark and ruin the whole thing for him?


Billy was a legend. Pure and simple.

He wasn't just comfortable, he was in his element. He loved the crew. He did what they asked. He worked with them, while I wasn't with him (I had the great luxury of having my hair and make up done, and being given wardrobe to choose from). He wore new strange clothes that had sticky, hanging labels in them and he wore them like a child model.

At the end of the shoot, the crew (who shoot with kids all the time) said he was one of the best 8 year olds they had ever worked with. They were expecting the usual objections, tantrums etc.

My sweet Dalai Lama autistic boy listened, complied and delivered. He was who he is, and he did what he could. As we have thought, many times before, he does a great job of advocating for what it is to be autistic.

I can't wait to see the final product in the magazine.

I'm really proud to be involved in an article like this. I hope it has the capacity to make real, tangible change in the way we talk about autism.

I think it's crucially important that we move beyond a narrative centered around acceptance of autism. I think acceptance is crucially important, but it's just one step on a long road.

While I find it extraordinary that anyone would choose to NOT accept autism, I have to respect the stories of autistic adults who feel incredibly strongly that it is, indeed, a problem.

But... so often, words like acceptance and awareness are used as blankets to stifle the ruthless kind of examination that, I believe, a condition like autism requires.

Without wanting to seem overly dramatic (I do write TV, after all), sometimes our adventures in autism world seem like the plot of a bad movie to me.

I'm watching and I'm screaming at the screen.

I'm thinking, 'Why don't they see (insert trend, pattern, blatant hipocracy)???'
Or I'm watching innocent minor characters wandering blindly into potential peril going, 'Stop! Think about this for a second!'
Or, worst of all, I'm seeing the dark side of seemingly reliable professionals and trying to find the language to make them bright again...

I've written a million times about the issues I think need more attention, autism wise -  the health implications, the need for an understanding of what autism actually is organically,  respectful medical management of the condition, clear responsible public health acknowledgement of the vulnerability of some children...

It honestly makes no sense to me to say that focusing on these things equals a lack of acceptance or hinders reliable awareness of autism or autistic people. It's like saying trying to understand epilepsy is undermining the legitimacy of living with it.

If I read one more 'autism is not a disease' thing on Facebook, I'm going to explode.

What's a disease? 

Well (ex-school debate team member reporting for duty), Merriam Webster says: a condition of the living animal or plant body or of one of its parts that impairs normal functioning and is typically manifested by distinguishing signs and symptoms.

Is autism that? Um, yes. says: a disordered or incorrectly functioning organ, part, structure, or system of the body resulting from the effect of genetic or developmental errors, infection, poisons, nutritional deficiency or imbalance, toxicity, or unfavorable environmental factors; illness; sickness; ailment.

Is that autism? Yup.

So, autism is a disease, by definition. What's wrong with accepting that? Is it because we think of disease as something we can prevent or cure?

While I respect that others disagree, I believe prevention of, or a cure for autism would be a brilliant thing - not for a desire for 'normal' but for a lack of debilitation. 

Living with autism is not a bag of apples, a lot of the time, and very little of that lack of apples has to do with a lack of acceptance (in our world at least). It has to do with struggle - with motor skills, with processing skills, with communication, with ill health that is connected to autism (gastrointestinal, immune, seizures).

I don't see many campaigns to shut down the search for a cure for MS or lupus. I don't imagine it would be considered appropriate to shut down the campaigns designed to promote a lifestyle that would prevent people developing Type 2 diabetes.

If people love being autistic, that's awesome. If people don't want their autism to be cured, that's excellent. What isn't excellent is that somehow, accepting that autistic people absolutely have an absolute right to their views about autism, means that the rest of us have no right to any view at all.

We work incredibly hard to ensure Billy is aware of and positive about, being autistic. He's smack bang in the middle of a generation increasingly full of autistic people, which would make his life easier if he actually had the capacity to give a crap about whether people around him were the same as him or not. Oddly, autism denies him that ability. And yes, I understand many autistic people do have that capacity.

We work even harder to keep Billy alive and functioning, and more and more of our friends are finding themselves doing the same. We are not unlucky, this is autism. It's the same autism that makes the high functioning role models we make movies about and the autism that prevents spoken language and the autism that allows constant self-injurious behaviour and the autism that makes social struggles, and also the autism that makes a few of the NASA scientist who landed a Mars rover.

Right now, as a society, I reckon we are doing a great job of NOT preventing autism, which I guess is great for the people who think it's not a disease.

Despite ever increasing numbers, and ever diversifying presentations, and ever more obviously sick children among autistic numbers, we are not being encouraged to change our lifestyles or public health policies. Instead, every step of any road to change is ambushed by economics, vested interests and the odd idea that acceptance is the opposite of care.

Acceptance and awareness are wonderful things. They are incredibly important to me. That's why we chose to pursue a complaint against Billy's school all the way to the Australian Human Rights Commission. Not just to 'win' but to set a precedent, to have a blatant infringement of his rights recorded publicly.

I don't know any autism parents who would not fight, as we did, for their child. In fact, all I know is autism parents who do fight, every single day for their children at school, at home, with doctors, in sports teams. They fight for acceptance, and they increase awareness, along side their children and other autistic people.

But in my mind, acceptance cannot replace scrutiny or examination or clarity. It makes no sense to me that the status quo should remain. I can't imagine a society having observed kids being born with spina bifida, actively not thinking it should throw everything it has at working out why? As it happens, we worked it out, we reduced the incidence, and it didn't make people with spina bifida any less accepted.

Acceptance is Phase One, in a long, long, long campaign. It's not an either/or.

So... for Billy and I to play a small role in shifting the narrative, in non-autism world, past (often erroneous) 'this is what autism looks like' frameworks, and onto 'why is there autism?' makes me proud.

Also, a little fearful of the photos of me wearing actual designer clothes and actual make up. I fear that might push social change in a whole other direction...


Judy Pippen said...

Thanks Valerie- I really listened to this and I learnt something from your passionate insights

Anonymous said...

You've beautifully articulated my frustrations with public discourse about autism. Can we shift focus from the (nonsensical) debate about whether or not the numbers are rising, and actually focus on prevention, cure, and real treatment options? It is way past time to move past awareness and acceptance. If you still require awareness, you must not leave your living room very often.

Michelle said...

Congratulations on the news article and the photo shoot! Make sure you put it on FB! I'm glad Billy was a super-star! Perhaps his comfort in from of the camera is a sign of a future male super-model!

Rachel Welch said...

I really liked the article, and your narrative in it. Billy looks like a really lovely kid. The article has led me to your blog which I am finding very helpful in sorting out my thoughts about autism in our family. Number one child has a diagnosis, just this year (although we've suspected since he was 11 months old). Two year old number two child is on the referral path with key charateristics so finding your blog right at this moment in our autism journey is wonderful. Thanks for the effort.