Valerie Foley

Archive for July, 2013|Monthly archive page

Be afraid… be very afraid…

In Action, Medical, Parent issues, Perceptions on July 29, 2013 at 4:46 am

In May this year, I wrote a letter to Disability Reform Minister Jenny Macklin.

My letter was in response to her assertion in this article that following Early Intervention 50% of children with autism will be ‘educationally normal’ (whatever that means).

Today, I got a response.

I’ll insert it here as a series of pictures, because I don’t have the tech skill to do anything else.

All I will say is if you have a newly diagnosed child in Australia, be very very afraid.

The people in charge are not even remotely up to speed on what autism actually means.

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One response… (though there could be so many).

Does anyone know anyone with a child diagnosed with autism whose needs disappeared after EI? Because it seems like the government is relying on there being quite a few of these stories, and I don’t know one.

And (I lied about the one response thing)…

With all your careful tiptoeing around first person language and care to assure me you are empowering people, Kate Costello, could I suggest you do not refer to the early medical care of my child as an ‘investment’. It kind of gives away the idea that you aren’t really valuing him as an individual. At all.

Off to buy a lottery ticket.

The Epidemic Is Wearing No Clothes…

In Action, Perceptions on July 6, 2013 at 10:05 am

This article was originally published in the July 2013 issue of Autism World Magazine.

When my child was paralysed from the waist down with an auto-immune disease, people told me it was a gift. When he needed adult doses of laxatives to maintain bowel function at 6-years-old, they said ‘that’s going to set him up for his University years.’ When he shook uncontrollably and foamed at the mouth while he slept, people said ‘it’s just quirks.’

Actually, they didn’t. No-one would.

Maybe they wouldn’t because I would have punched them in the mouth (and I am not a naturally violent person). Maybe they wouldn’t because it would have made no sense.

And yet, the condition that umbrellas all those events, autism, is considered lightweight; nothing to worry about; nothing but a natural evolution of human brain engineering.

Just like the naked King in the kid’s story, a respectable and placatory fiction is paraded in the faces of autism parents  – autism is not an epidemic.

Although anywhere between one and three per cent of the world’s child population now carry an autism diagnosis we are told autism is not a problem;

Although this rapidly increasing cohort of children have a massive range of compromise in communication, learning abilities, social functioning and life skills, we are told autism is not a cause for alarm;

Although children live with debilitating, gastrointestinal conditions, auto-immune illness, seizures and food/drug intolerances, we are told autism is just a harmless quirk;

Although children die after wandering from the safety of home or school;

Although children die at the hands of desperate, derailed or ill-equipped carers;

Although children die at an increasing rate;

Autism is not an epidemic.

It’s almost as ridiculous as my pretend illness conversations, except it is actually happening.

As many of us have said many times before, if autism was diabetes, we’d be launching international preventative campaigns. If autism was cancer, we’d be making heart wrenching music-laden slo-mo news features about protecting vulnerable babies. We would want to know why it’s happening and how we can stop it.

Measure it by CDC acknowledged diagnosis (1975: 1 in 5000 2013: 1 in 50)

Measure it by deaths (four autistic children drowned in the last two months in the USA alone)

Measure it by economic impact ($3.2m is what’s needed to fund an autistic person’s lifetime care according to the Autism Society of America, with a predicted 500 per cent increase by 2030)

Autism is on the increase, and its impact is widening exponentially.

We are undeniably in the grip of an epidemic.

Of course, it makes much more sense to push such thoughts to the back of your head. A lot of us don’t take kindly to having our lives described as a catastrophe. It’s confronting to think we might have made poor decisions. It’s really scary to think we might have been ill-advised by professionals we are bred to trust.

Let’s think about it this way.

Many of our children are not coping with childhood. We’re happy to bleat on about the inadequacies of the systems that provide them with therapy, health and education. We force them through those systems because we are told that’s what we should do, and we are somehow assured the strategies employed will work.

They are not working in any way, shape or form.

Kids are struggling with basic life, learning and health. More children are diagnosed every year. The ranks are growing every year.

I’d like every reader to nominate 10 kids who have, through educational strategies, lost their autism diagnosis, attend school without support and live life with zero supports, accommodations or quirks.

What’s that? You can’t? No, neither can I. The only people who can are service providers and politicians. Funny that.

Here’s some of the anti-‘Houston, we have a problem’ spin they spin for us:

–   it’s insulting to use ‘disease language’ when autistic people are happy just the way they are.

To which I say, this simplistic nonsense allows every doctor my seriously ill child sees to say “It’s just autism, Mum.” So, it’s insulting to him (also autistic) to deny him the medical care  he requires. Are his rights any less than the rights of an adult self-advocate? Of course not. As sibling advocate Natalie Palumbo said in her 1 in 88 video “If you can argue against a cure, you don’t need one.”

Also, I’m not in the habit of looking down on sick people. I don’t know anyone who is.

–   it’s all better diagnosis, these kids have been around forever and they’ve been ignored, pushed through the system anyway or institutionalised.

To which I say, really? Where are all the autistic adults, to match the autistic children they must have been? Where are the teachers who ‘pushed’ these kids through despite challenges that confound contemporary, well-trained and skilled teachers. Where the hell are the gifted doctors who are suddenly able to display sensitivity and insight that very, very few of us see and all of us need right now.

Also, name me 10 autistic kids you knew when you were 10. OK, I’ll make it easier, name me 10 autistic kids you know now.

–   it’s all about changing diagnostic criteria.

To which I say, okay, so the steep rise should have happened in 1994 and in the years immediately following, and then levelled off, but it didn’t.

Also, the issue of changing diagnostic criteria will hit us soon, with the DSM-5 cutting out all the Aspies under three. Still with the same massive additional needs, but no diagnosis, so poof, the epidemic is gone. If the changing criteria logic works, then what was the aim in expanding the criteria in 1994? Creating work for therapists?

–   it’s genetic.

Purely genetic conditions do not accelerate from 1 in 5000 to 1 in 50 in one generation. Medical conditions do.

Actually, this spin is insulting my intelligence, and it should be insulting yours.

Most of you are parents who saw your child or a child you love struggling so you sought help. Are we honestly saying that parents in the past simply ignored their kids’ struggles and went on drinking highballs?

They didn’t ignore it because we all know, it’s impossible to ignore.

If you need a framework that’s less histrionic than mine, Google ‘Nature Magazine’ and ‘Karen Weintraub’ and ‘November 2011.’

If you need to get over the semantics, Google the definitions of the word ‘disease’ and the word ‘epidemic.’

We are surfing a wave of epidemic, and the only reason we think we aren’t is because we don’t want to be.

Denying the autism epidemic is giving approval to governments, doctors, educators and service providers to NOT respect your child’s needs.

It is saying it is completely okay for more children, maybe more children in your own family, to have autism.

It is saying you are happy to foot the bill – the $3.2 million per 1 in at least 50 of the world’s population, for their lifetime of care and support.

If you are happy for these things to occur, then perhaps you should join the parade. I believe there’s a fine ermine cloak on display.

If you would like to purchase Autism World Magazine, subscribe to the digital download via this page http://www.autismoz.com/purchase-2/ or if you have an iPad download the free app then purchase/subscribe from within the app.