There's always something to learn...

On a little Google journey this afternoon, I found this paper.

You can download it for free, as a pdf, if you want to read it too. But the introduction is almost enough to make me feel a little less frantic about where we are in our understanding of the 'a' word.

That academics are urging us to consider that Kanner's original classification in 1944, might need a fresh look... that can't be bad. That they are also open to examining the biological nature of autism is, in my mind, a step in a useful direction.

It makes me feel less washed away by the power of the 'science' of those with the most marketing power. It gives me faith that some people are getting funding to consider issues beyond the ones that retain either the medical status quo or the best situation for big business.

One of the conversations I like having the least, is the one that follows when someone says, 'Haven't they debunked the whole vaccine/autism thing?' I'm always struggling, backpedalling, trying not to alienate the other person with my 'crazy hippy' thinking, but also keen to change their minds.

I try to say, proof is relative, it all depends on your hypothesis. I try pointing out that there's a lot at stake in anyone in any position of responsibility accepting that vaccines might have damaging effects on anyone, least of all children. I try asking them how they would feel if their child changed overnight, lost skills, slowed in their development, stopped connecting with them. I try. I try. I try.

But I can't prove anything. Really, I've come to believe no-one can. I've come to believe that it's science and not the law that is an ass.

Not so much the science itself, but the people surrounding it.

I feel sorry for Andrew Wakefield, because I believe he's on the right track. And it seems a bit like he made a couple of fundementally stupid mistakes. So now, all the work he's done is lost. I can't see that as a good thing... especially not for us - the families swimming down the river of the early 21st century autism.

I wonder why the autism community isn't listened to. I wonder what people are frightened about. Are they afraid if some of the voices in the arguments about autism are correct, their children might be at risk too? It makes me sad that we, as a family, are something people might fear.

It makes me sadder though, to see the autism community fight amongst itself. Who does the 'right' therapies? Who is a fake? Who could be so stupid as to try... (name an intervention)? Why would that group say (name a statement about anything to do with autism)? Why does that person have the ear of that doctor/politician?

Even though those involved would disagree for sure, in my opinion, that in-fighting detracts from the challenges families living with autism face every day.  Even though I've got strong opinions about what's real for us, and what's worked for us, I don't want anyone to think I'm judging or degrading their decisions. Or, more to the point, I'd rather they felt OK about telling me to pull my head in and respect their choices.

It's raw for all of us right now, and the feeling that we're somewhere close to a crest of a freaky river wave is never far from many of our minds.

I hope that 20 years from now, we'll all be slapping our heads saying 'Dowp! It was THAT!' I hope we will know why it's being reported in a Queensland newspaper that the autism prevalence rates are doubling every five years, and that 2% of the state's school population has a diagnosis on the autism spectrum (not the 1% that's accepted as the new shocking prevalence rate).

And I really believe that the only way we will get there is to keep reading, keep asking, keep studying, keep trying to find out what the hell is causing so many kids to fall at fundamental life hurdles.

So I'll read the Swinburne papers, I'll read Wakefield's new book, I'll read the news on Autism Speaks and anything else that comes my way. I'll talk to my friends and I'll talk to my foes. I'll just keep trying.

I know I'm not anyone. I'm not in a position of power or influence. But if I'm supposed to be keeping my kid safe and healthy, then it is my job to understand as much as I can about the condition with which he is living.

There must be something to learn.

Is there ever a time when autism isn't a factor?

Today we went back to the love of Billy's life - Dr Victoria.

We went back because the cough part of the croup just won't go away, and I (as you know by now) have a brain that spins off into 'could this be very serious' land very easily.

Turns out, even though he is coughing so hard he's making himself vomit... he's just fine. No asthma, no chest infection, no nothing except the same old sensory issues we should be used to by now.

He feels his throat tickle, he coughs. That makes his throat tickle, which makes him cough. Which makes his throat feel odd, and so... you can fill in the rest (but if you are struggling, it generally ends in vomit or gagging at the very least).

I can live with the fact that it cost me $60 to find out he's got a viral cough that may go on for 4-6 weeks (are you kidding me?) I can live with the fact that there's no lurking pneumonia (very good news). But what I struggle with is the fact that he could possibly be coughing himself stupid for a month, and there's nothing really that we can do to calm it down.

He's come so far in regulating himself, understanding when he's about to be overwhelmed, withdrawing and re-grouping... and then little gems like this just pop in for fun.

There's no point in saying it, but it's just not fair. There are worse issues for sure, but some days, I think people with autism must be the hardiest of the bunch.

Billy has a pretty rough trot some days. It's not always life threatening (though he's had that too...) but it's not often a summery walk in the park either.

At least they come one at a time...

The good news is, we seem to have exited poo hell.

Thanks to people much more patient than I (Daddy and Dr Victoria, my new favourite person), Billy has re-negged on his statement of last week that 'Billys NEVER ever have to poo'.

I believe the compulsive repeating of Charlie and Lola episodes may have something to do with the wording of his mantra. I like Charlie and Lola. I think it's funny (for the most part), very positive (almost always) and a little bit left of centre (never a bad thing in my book). But since it seems to have been linked to Billy's decision to cease pooing, I'm not as much of a C&L fan as before.

A bit of a doctor chat, a crazy hi-fibre diet and a some privacy for a growing boy and it's 'Sayonara, pits of stinky hell!!!' No more sacrifices to the underwear gods... woo hoo!!

But we have entered croup purgatory.

Heavy breathing, wheezing, seal coughing, the whole kit and caboodle.

He's got prednisone and Nurofen and chips, and so far so good.

The beautiful part of today, was the doctor visit. We love Dr Victoria. She's respectful and positive and she treats Billy like a human being.

I seriously could have left the room today, as she and Billy had the appointment all covered by themselves. He sat in the chair closest to her and opened the conversation with 'Well, Victoria, I have a problem.' She listened to him, asked amazingly positive and well worded questions and got everything she needed back. She was even allowed a glimpse at the throat - a privilege saved for a very select few on this planet.

I'm proud of him, and even more, I am impressed with Dr Victoria. It restores my faith in the future when I meet people like her.

As we left the doctor, Billy stopped at the receptionist's desk. He said, 'Excuse me, ladies', to get their attention, and when they looked at him, he added, 'I'm keeping my germs right here in my mouth. Don't worry!'

No scripts, no prompts, just little boy chat.

We walked out the door having left smiles on the faces of a collection of women who see a lot of charming six year olds.

Did I mention how proud I am of my little barking seal?

An oldie but a goldie

Sometimes you stumble upon something that articulates something that really resonates... for me, this is one.

In all the furore surrounding discrediting doctors and proving the 'no' case without acknowledging the realities of the 'yes'... this presents a hypothesis that makes sense to me. It makes sense in terms of our lives, but it also validates the range of experiences I hear, read and see as a member of the community of people living a life with autism in it.

It is reproduced with the permission of the author, David Kirby, and was originally published at The Huffington Post.

It's been nearly two years since the release of my book, "Evidence of Harm, Mercury in Vaccines and the Autism Epidemic - A Medical Controversy," and I continue to be vilified by critics who insist that mercury does not cause autism, that autism is a stable genetic condition, and that it cannot be an "epidemic."

I am going to declare a New Year's truce, and announce that my critics are 100 percent correct.

This year, I hope we can ALL agree on one thing: There is no autism epidemic.

Among my most spirited and articulate detractors is a group of adults with autism who belong to a movement that refers to itself as the "neurodiversity" community.

These adults argue passionately that autism is neither a disease nor a disorder, but rather a natural and special variation of the chance genetic imprint left upon human behavior. Most of them, I believe, have what science calls "Asperger's Syndrome," or very high functioning autism.

From their eloquent and well reasoned point of view, autism has no "cause," and it certainly requires no "cure." To suggest otherwise is to brand these adults with the stigma of disease and disability, which is patently absurd given their educational and intellectual achievements.

It's like saying that left-handers or gays are deviant and need treatment - something that reasonable people stopped doing years ago.

So maybe autism really is just an odd genetic peculiarity that yields atypical people whose own set of talents and gifts can lead to perfectly happy and fulfilled lives, with little or no dependence on others for their survival.

If that's the case, then autism has always been with us at some steady, but largely overlooked rate. Growing awareness and better diagnostics have certainly helped us identify and count more people with the condition, who might have been mislabeled as "quirky" or "nerdy" a decade ago.

But if that's autism, then the kids that I have met suffer from some other condition entirely. When I talk about "curing" autism, I am not talking about curing the "neurodiverse."

I am talking about kids who begin talking and then, suddenly, never say another word.

I'm talking about kids who may never learn to read, write, tie their shoes or fall in love.

I'm talking about kids who sometimes wail in torture at three in the morning because something inside them hurts like a burning coal, but they can't say what or where it is.

I'm talking about kids who can barely keep food in their inflamed, distressed guts, and when they do, it winds up in rivers of diarrhea or swirls of feces spread on a favorite carpet or pet (no one said this kind of "autism" was pretty).

I'm talking about kids who escape from their home in a blaze of alarms, only to be found hours later, freezing, alone and wandering the Interstate.

I'm talking about kids who have bitten their mother so hard and so often, they are on a first name basis at the emergency room.

I'm talking about kids who spin like fireworks until they fall and crack their heads, kids who will play with a pencil but not with their sister, kids who stare at nothing and scream at everything and don't even realize it when their dad comes home from work.

These are the kids I want to see cured. And I don't believe they have "autism."

Scientists tell us that 1-in-104 American boys are currently diagnosed with some form of autism spectrum disorder. But the mildest, "high functioning" forms of autism have seemingly little in common with the most severe or even moderate cases.

My hunch (and yes, that is all it is) is that most of these kids do not have "autism" at all, and it's probably time we started calling it something else.

American kids are in huge trouble. One in six has a learning disability. Asthma, diabetes, allergies and arthritis are ravaging their bodies in growing numbers. And little of this is due to "better diagnostics" or "greater awareness."

It can only be attributed to radical changes in our environment over the last 10-20 years. There is something, or more likely some things in our modern air, water, food and drugs that are making genetically susceptible children sick, and we need to find out what they are.

Mercury remains a logical candidate for contributing to "autism spectrum disorders," either alone or in combination with other environmental insults. Mercury exposure can kill brain cells. It can cause loss of speech and eye contact, digestive and immune dysfunction, social withdrawal and anxiety, and repetitive and self-injurious behaviors.

So maybe we should leave the autistics in peace and focus on these environmentally toxic kids and what it is that ails them.

Maybe what these kids have is not autism, but something like, say, "Environmentally-acquired Neuroimmune Disorder," which we could call E.N.D. (Great slogan: "Let's End E.N.D.).

Maybe that would explain why a recent CDC-funded study of the San Francisco Bay Area showed that kids with "autism" were 50% more likely to be born in neighborhoods with high levels of airborne toxins, especially mercury. If a second study underway in Baltimore yields similar data, it will be that much harder to defend the "better diagnosis" argument, (other studies have shown an association between autism rates and proximity to coal-fired power plants).

So maybe what we have here is just a semantic failure to communicate. Columbus thought he had met "Indians," and we only recently began to use the term "Native American."

Columbus was not in the Indies, mercury doesn't cause autism, and there is no autism epidemic.

Sad part is, this was published in 2007... 

Must write.. must write...

Who knew I was one of those people who needs to write, in the same way as I need to eat or shower...?

It's been a big week of writing and reading, and sharing and being so unbelievably amazed at the generosity of people.

I've been gathering stories from other mothers, who share the experience of parenting an autistic child. And the more I gather, the more they offer. The more women who write, the more they want to write. Amazingly, the more their friends and associates and co-passengers on the 'a' word boat want to write.

I've never been someone who writes a journal. I've always secretly thought people (especially girls) who fill in their diaries were a bit weak. There's a nasty secret I've been carrying around for 30 years or so. I thought the whole 'Oh how I love... whoever' or 'blah-blah is a meanie' was a complete waste of physical, mental and creative energy.

But then I started this blog, and then I 'met' other bloggers and then... I started collecting the words of other woman who share some of my experience. Not about lurve or dreams or secrets... about life. The big stuff. At least the stuff that I think is big.

What a snob I am. I am truly a judgmental fool.

Because this week, I've seen the magic that can be unleashed in the words of women - from the lives of women who have faced one of the nastiest fear beasts there is... learning your child has a disability.

Wow...

It cuts to the core of why I'm doing what I'm doing. It slaps me in the face with my life experience, my life choices and my accumulated life skills. It makes me think a lot about how and why I have arrived at this point in my life.

Where was the point where I thought I could pull off this writing lark? What made me think it was worth pursuing? Why didn't I stop and go get a job in a bank (apart from the unfortunate armed hold-up at the video shop workplace of my teenage years)?

There have been some cracker moments in my writing life.

When a shy outcast kid in a primary school stood up in the audience of a play I'd written by adapting his prose into performance and said, 'I liked my bit the best' and got a round of applause from his peers.

Or when a play I had written was performed at the site of the Port Arthur Massacre, and brought parents to tears when they saw their children laugh for the first time since horrific tragedy invaded their lives.

Or when I saw words I had written being interpreted in song by children whose voices came through their hands...

I've been truly fortunate.

And this week, again, I was humbled by the ability and opportunity I have managed to assume. It's not about the writing, per se. It's about the permission to speak. It's about having a moment to share and to shine. It's about trusting your gut.

This week, I have shared in the hilarious and the hideous. I have laughed and cried and been angered and left dumbfounded and been ultimately inspired...

So, thanks all you women who know who you are. The world will be a better place for your courage and your conviction. That much I know. The trust that you have laced in me is humbling, but the strength that exists in you is even more so.

In the words of someone more wise than I... You Rock.

A few last things.

1. My friend Jenni is a wife and mother, and a teacher and an autistic person. This week she showed me that autistic people need only to have the world understand and need them to succeed.  It is our (the NT and the NT-ish among us) responsibility to open our minds and our practical perceptions. Jenni has gifts that her autism both informs and transcends. She is a human being of great talent and drive. She and I achieved something incredible this week. In doing so, she showed me that autism doesn't impede achievement, if it can be respected, affirmed and embraced. She showed me that skill, talent and passion conquers all. The rest is mere details.

2. Holy dooley, there are some amazing things to learn when you amass the experience of a bunch of people in the same position in life. I hope to heaven it gets into print, and I hope people read it. There is so much to learn about autism, and I believe very much that there is a lot to learn from this collection of stories.

3. He-who-thinks-blogs-are-stupid is an amazing human being. I know I'm nuts. I know I'm unpredictable. I know I throw curve balls all the time. I am unspeakably fortunate to have a back up, sidekick, partner, guide like him.

This has been a hell of a week. Who knows what might happen next week?

It will have to involve a real-eo, tru-leo big pet dragon to top what I've experienced already.

I have a deadline...

I am procrastinating, by ruminating... and I have something to say (funny that...)

I'm working on a project at the moment, which involves lots of people in a similar position to me in terms of autism and parenting. I'm going through lots of heartfelt statements, detailing their lived experience and it's inspiring.

But it's also seriously sad.

It's sad because it seems like the world has very little faith in women and children. What's going to follow is a mass of generalisations and anecdotal, unsubstantiated statements but trust me... unlike Tony Abbott (our Opposition Leader for the overseas folk among you), I'm not making it up right now.

Again and again, I'm reading about mothers who faced derision and judgement when first voiced fear about their children's development. Some of it comes from within the family, and I can forgive some of that. No-one wants a massive issue in their family, and the first reaction is often denial. The nasty, unhelpful judgement comes from the doctors and the teachers.

It makes me wonder what's going on in the heads of some 'caring' professionals that they would dismiss a mother's concerns about their child. What would motivate you to question a woman who spills her heavy heart about her child? What are you thinking she is thinking? And what are you thinking the effect of your cynicism will be... that she'll stop asking...?

Sadly, may women do stop asking. Hideously, their kids can end up struggling through parts of their life, not understanding themselves and not being understood. Being thought of as stupid, or naughty, or bad...

If you don't stop asking, it gets expensive. Doctors visits, new referrals to different doctors, travelling, googling, struggling to understand. Hopefully, eventually someone gives some information that leads to understanding.

It's not always about women being ignored, though. Often there's a pile of denial involved too.

Occasionally,  I hear a parent, quite offended and self righteous because someone dared suggest there might be something spectrum related going on with their child. The tone is almost always the same - like there are teams of crazy autism seekers around the place, picking out perfectly innocent children and labelling them... Like there's something to be gained in calling as many kids as possible autistic.

So... what am I trying to say today? Apart from, I have a deadline and am procrastinating...?

I'm trying to say...

Dear... people, 


It's hard to contemplate the fact that a child might have challenges.  Especially if that child is yours, or closely related to you. 


So, listen carefully and compassionately when people voice their concerns to you. Chances are, they are not attention seeking or making it up. And if they are, they are in need of support anyway.


Watch their children without judgement, too, if you can. See how they navigate their way through their day, how they use their bodies, how they react to their peers. Listen to what they say, even if it's not yet words. Look in their eyes, if they will let you. 


You are not helping by doubting. Nor are you helping by brushing off concerns. 


Just listen, reflect back what you hear, offer your shoulder, don't be afraid of anyone's tears... you have nothing to lose.


And there's a lot at stake. 


Cheers, Valerie  

I'll just pop out and mail this to... the world. That should add to the procrastination nicely!

Eat my words...

So... I spent the day at hippy school today, and it was me that learned a lot.

There were a couple of Billy triumphs (I'll get to those in a minute), but the humbling learning came from the three boys who I had assumed had been trying to humiliate Billy a couple of days ago. We sat down (the boys, Billy, his teacher and I) and had a chat about what had happened.

I won't go into details, but it seems like they weren't targeting Billy at all. I misunderstood. They were genuinely asking kids the question 'do you have a house?' and gathered quite a range of responses (houses, hotels, apartments, flats, two houses...)

Big Mama lion swiped her claws a little too fast. And for that I apologise. Though now that I write this, I'm not sure if I apologised to the boys. Ah crap.

Hippy school is truly confronting, and exacting and inspiring... it's no easy task to be a human being in that environment, and that's what makes the lows and the highs so meaningful.

I stay at school on Fridays and help any kids who want to make films. They set out with video cameras and put togehter all sorts of audio-visual things. There are overly serious news stories, stop frame animations starring C3PO and whacky interviews with chairs and trees.

Billy, amazingly, is not stuck to my side at all. He has his friends to wrestle with and chase. He has his teacher to request 'scruffles' from, and he has choices to make - because it is Free Friday, after all.

Today, he completed a project on Green Iguanas. I write this like it happens all the time. This is totally the first time I have seen him complete a project. It had coloured cardboard and pictures and text he had typed up and cut and pasted. It has a few iguana skin looking decorations on it... it was a project alright, and it's up on the wall in his classroom right now.

You have got to love a school that values the expression over the motor skills. His fine motor skills are not good (although the beautiful beaded necklace he made in the craft room in the afternoon totally makes a liar out of me), and writing is a processing struggle. He spells beautifully (with appropriate 6 year old mistakes like 'vegertibels'), has a great memory and a lovely imagination, but pulling all of that together and making pencil marks on paper at the same time... waaaay too hard. So he types. And he gets the project done.

We do work on the writing, and we will always work on the writing. But the confidence that comes from being able to process your ideas into something that can be shared and understood by others... that's something that drilling handwriting skills just can't achieve.

Kudos too, to the wonderful kids in Billy's class who shared a non-patronising smile as they patched together the word 'IGUANA' from the bendy, big, badly placed letters on the poster heading. It's not patronising because they see the level of information in the project and genuinely go, 'Cool...' and because they have lived experience of how hard he has worked to get those letters looking like they do. One very special child turned to me today, as Billy was writing his name at the bottom of the Green Iguana Poster and said, 'That is the neatest writing I have ever seen!'

So... lessons learned at school this week are many and varied.

1. Stay calm and remember that it might not be as bad as you think.
2. Good teachers are amazing, and work like freaking trojans for their money.
3. Children are not always stinky, evil or nasty.
4. Green Iguanas look like dinosaurs.
5. Necklaces made by small children are always the coolest things. Ever.

Man, am I glad it's the weekend.