Wednesday, April 7, 2010

Am I crazy or passionate or obsessed or what?

Sometimes I think I've gotta get some distance from all this autism stuff. Or maybe perspective is a better word.

Let me take you on a little mental journey (a mental little journey), and you can decide for yourself.

Last night, I read something on Facebook that made me furious. Not someone's request for hammers for their farm, or the fact that someone had joined a group praising the qualities of a bowl of fruit or anything... it was a link to an article about autism. Someone in Australia had posted it on the Autism Mothers page.

I've got a lot of time for Autism Mothers. I have a huge amount of respect for Polly Tommey, and for Autism File magazine. I'm deeply impressed with the work she and her colleagues have done in providing accurate, dynamic information about autism to the world.

So my expectations are high.

Anyway, the link was titled 'Autism in Australia' and it linked to an article from a community newspaper in Queensland (one of the States of Australia). It told a family's story, giving details of their situation and their two autistic children. It also made reference to the autism diagnosis rate - 1 in 160.


See, I'm flipping out just thinking about it again. The dx rate is now set in the US at 1 in 91, 1 in 58 boys. In Australia, it was established last year at 1 in 100. It's a huge deal, as the rate... the scientifically established, government mandated rate is changing rapidly and profoundly. And it has done over a very short space of time.

Now, I (clearly) have my opinions (me? opinions? am I kidding me?) about why those rates have risen. But I'm willing to accept everyone's ideas about why. Right now, I don't care why. I just care.

Doctors don't seem to know crap, and more than that, they actively resist engaging in discussion about autism as a medical condition. To them, it seems, autism is a set of behaviours.

Teachers (unless you are very lucky, and I will say, I am) are struggling with understanding, accommodating, accepting the ever changing information about ASD kids.

The general populace are swinging between sympathy, ignorance and that horrible self-righteous kind of judgement that old ladies on busses are famous for...

I'm raving again.

I posted after the article on FB, 'why are the statistics wrong?' The responses that came back shocked me. Soft, stupid (in my opinion) statements about how any awareness is good awareness, and that those were the most common statistics on the internet, therefore they were the best ones to use.


Are you kidding me? I'm not even going to start on the accuracy of the internet, nor checking your sources, or perhaps even double checking your freaking facts...

What concerns me is the 'oh we should be grateful for the meagre crumbs from the master's table' attitude.

That attitude is why our children are misunderstood and judged by their peers and their elders. That attitude is why doctors insist we vaccinate our children even when they have already acknowledged vaccine injury (and I'm talking about my child and my doctors here). That attitude is why the diagnosis rate is rising... because people are not paying enough attention to 'why'?

I accept that we, as ASD parents are on the coal face of something significant (as sick as that makes me feel). I accept that the only chance for change is for all of us to 'work together'. I accept that someone has to try and turn this ship around and slow down something that must be able to be slowed.

I do not accept that we should do that by slacking off on the details.

We live it, alongside our kids. We feel the hits when children call our kids 'weird'. We struggle to restrain  the loves of our lives when they are freaking out over a simple medical procedure or the sound of a fire alarm. We dream, just like everyone else, of a future where our kids can 'be' who they are.

I don't hate autism. I hate ignorance, I hate denial and I hate that there aren't enough services available for the diagnosed kids we have now.

Actually, I hate that I read something on Facebook and it made my head explode.

Time to give Billy a giant scruffling... that will make us both smile.


Ro said...

I get cross at the flippant "oh be happy we paid your pet charity any attention at all" attitude when I try to correct stats or misconceptions, ignorance is infectious!

Mich9 said...

"I don't hate autism. I hate ignorance."
--Well said, Valerie. A truer statement cannot be found.

"We feel the hits when children call our kids 'weird'"
--Ugh. That will always feel like a punch in the stomach to me. :(

CindyPDX said...

I "almost" don't blame the teachers and Dr's here in the US -- almost...but I do blame the MEDIA.

Not sure how it is in Australia, but the US media doesn't have a clue either.. er rather, choose NOT to WANT to have a clue regarding Autism because MANY of their commercials / ads that run on their channels are from their BIGGEST customer: BIG PHARMA companies. Whether on local free channels or on paid national channels via satellite or cable, they all play tons of commercials with many pushing drugs or vaccines in almost every ad.

My husband is from the UK and could NOT believe the amount of commercials we have here and the types of commercials we see. Apparently, it's not like that there.
Another example is how the media handles high profile court cases is very different here in the US compared to the UK. Here, the media blabs about a high profile case on and on, before, during and after the trial-just about giving judgment before the case even gets a verdict (by then, the jury pool is tainted) and the public is swayed to the media's opinion rather than the facts and evidence given in the case.

PBS is about the ONLY channel that is not bought by Big Pharmas- it runs on public donations. I believe every US state has a PBS channel. Here in Oregon it's called OPB. Speaking of PBS/OPB, on April 27th they are playing "The Vaccine War" presented by Frontline. I believe you'll be able to watch it online after the show airs.
What it's about found here on Connecticut's PBS station:

I plan to watch and record this especially since they do NOT run ads during the show! :)

Not sure if you can see these, but see other FRONTLINE shows online here:

or check the main page here:

Keep up the awesome work Valerie!