Sunday, June 6, 2010

A bit of healthy cynicism...

I've always thought having a critical mind was a good thing.

But over the last few days, I've started wondering... I know this will come as a surprise, but it's another autism issue that made me wonder.

A day or so ago, I read this article.

It's flagging the results of a study where they have discovered a particular chemical profile in the urine autistic kids and their siblings. It connects the gut function question with the genetic component of autism, and so, opens the question of whether that gut function can be corrected or repaired, thus decreasing the impact of potential autistic symptoms/behaviours/presentations.

I was really surprised to find that many parents seemed to think this was another in a long list of useless autism related studies. Some shared a tentative hope it might be genuine, but many picked phrases out of the article as proof it was stupid. Most often, people were flinching at the word 'cure' as it appears in the article. Fair enough, I guess... cure is always one of those things guaranteed to get the autism arguments flaring.

Still, I have to say, to me, this is article feels like great news. Not so much the specifics of the study, but the acknowledgement that autism has a biological basis, and that a profile is being built. It means the mystery of 'why my kid' or 'what did we do' doesn't have to continue to deepen. Especially not for the Billys of the future. It's a hell of a crap shoot, and a nasty game we're playing with our collective future, in my opinion.

If there's a chance that this study is even half useful, it's a step in the right direction.

What's my idea of the right direction?

It's a place where, in the pursuit of medical understanding of autism, people living with autism who want to be heard, are genuinely heard. Where parents of children with autism are respected. Where the reason 'stuff just happens' isn't given and accepted when a parent raises an eyebrow as an autism diagnosis is delivered.

It's one of the toughest parts of this journey, in my opinion. The fact that the medical profession have so little to offer. More than that, they seem to want to diffuse any discussion on questions surrounding autism, if those questions come from the mouths of parents. If you start a sentence with the word 'why' in the company of a doctor, they seem to get a funny sheen across their top lip, and throw out a few words ending in istic, oma or itis... They either stop making eye contact with you (hell, we're used to that) or they start staring you down, playing eyeball chicken, until you stop talking and start shrugging along with them.

I don't know an autism parent who isn't a bit beaten around by their experiences with doctors. It makes me sad that I felt such affinity with Temple Grandin's mother (played beautifully by Julia Ormond in the HBO movie) when the doctor tried to avoid sharing the little he knew of autism in the 1960s. She steeled her eyes and reminded him she graduated from Harvard and could handle the information. He gave her so little, and even now 40 or so years on, we're not getting much more.

So now, as parents, many of us have become conditioned to roll our eyes and ignore the dudes behind the desks. We're like annoying teenagers, thinking we know so much more than our parents and teachers.

And so it makes sense, I guess that studies get published and people roll their eyes.

I really hope this is real news. I hope that all the agitating and arguing and sacrifice and scapegoating will come to something. For us, and for the families five years on and ten years on and twenty years on.

We're a privileged section of the community, who have taken a big deep breath as we've faced a nasty fork in the road. We're also growing in numbers, at an almost embarrassing rate. We didn't choose to be here, but we are here. In our numbers we've found support and friendship, but we're yet to achieve any real respect from the people with our children's individual and collective futures in their professional hands.

I hope that sometime soon we can stop rolling our eyes and exhale. Even a little.

4 comments:

Lisa said...

Ah, eventually, but I reckon I might be a bit blue in the face before I get to exhale.

Maybe the medical profession get embarrassed, because *they* have no answers to give.

I still want to make *all* the researchers - bio, psych, neuro - share their thinking, rather than each following their own narrow path and denigrating those on other paths.

But I'm not holding my breath any more.

Fiona said...

Valerie,
I'm with you 100%.
I too was excited by this research and hope that the connection is proven to be "real".
I have kept quiet on this article so far as I just don't have the strength to get into arguments about it with other ASD parents right now.
Thanky ou SO much for bringing it to my attention,
I truly appreciate it.
:) Fiona

carriemumof2withasd said...

I agree with you totaly on this.

I felt it was a great article and for some one to finally say there is a link between the gut and Autism makes me so excited for the future Autistics.

My 2 have always had issues with their gut and I have spent countless hours reading about diet and gluten and other gut related issues with these children. Not to mention the money i have spent trying to help them with their gut problems.

Thanks for bringing this to our attention.

I posted this article on my face book group Parents of children with Autism so more parents can read it and have hope for their children.

Thanks Valerie I hope all is well with you and your family ;)

Liv said...

Val,

my boy's teacher actually brought a little snippet in the daily telegraph relating to this, to me the other day and I went online trying to find the full article. Thanks for finding it - Im glad to have read it in full!!

I think its another avenue we at least need to consider... no matter how 'beaten around' we are from all this info at our fingertips!

Livian