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.

Things I'm excited about...

It's kind of chicken or egg...

I have a little boy who loves a screen. But it's not just about wanting to chase funny looking creatures around virtual worlds (though that is a lot of fun for him). It's about something much more zen. And much more valuable (ultimately).

He loves screens because they do not ask anything confusing of him, and if they do, he's allowed to sort out his confusion in his own way and in his own time. He loves screens because they are full of things he is interested in. He loves screens because he can manipulate them, play with them, master them without needing to decode another human being's communication.

And because he loves them, I love them too.

Actually, I love them anyway and I loved them first... but that's another blog entry.

Most parents are lamenting their children's love of the DS, the TV, the computer, the Wii, the PS2 or 3... not us.

Sure he may spend a little too much time on there in the future... but there's something much more important happening right now, IMO. It's a moment in his-story, in Billy's story.

I'm taking it with both hands. It's a teachable moment, for us and for society.

Simple statistics - If we're talking 1 in 58 boys now, and two years ago it was 1 in 250, then it could be (unless something completely bizarre happens, and lets face it there are bigger problems out there in society's mind) 1 in 20 or less in a few years time. That's a lot of kids (people) who struggle with learning from people. A lot of people who seek the safe zone of screens to extend their cognitive skills, life skills, social skills (will I go on...?)

Let's think about this. If you want to keep on fearing the technology, go right ahead. I understand. But if you don't... man, there's a huge and growing market for innovative, credible product.

I don't have the skills, but I know there are people who do. I'm excited for those people, and I'm excited for Billy... boy, are we in a great position to innovate!

Did the geeks make the Aspies, did the Aspies make the geeks? Will the geeks help the Aspies, or will the Aspies help the geeks? It's like a Shakespearean drama... unfolding around our autistic kids... and I, for one, am really keen to be a part of the action.

I'm guessing Billy will be too, but right now he's searching for videos of Giant Salamanders on YouTube.

Found one...

They say, 'be careful what you wish for...'

Stinking 'they'. Who the hell are 'they' anyway?

So, I get to school to pick Billy up today, and overall it's been quite a good day. There have been ups and downs and he's understood most of them.

He has been crashing down people's lego creations (known at hippy school as 'bases'), and people are seriously annoyed at him. He got that. He also understood and accepted the consequences.

I can see the base crashing has a number of interesting elements to it. Bases are the number one cause of tension at hippy school, and so they should be. They are made of lego, so they are colourful and fragile. They are the product of a lot of thought, planning and (often) collaboration. When Billy crashes them, he stuffs up all of that thought, planning and collaboration. It's flat out annoying.

For Billy, it's a huge sensory release (I feel crash, I see crash, I hear crash). The desire for that crash is often related to a game he has been playing alone (today, it was a Percy's Chocolate Crunch game, with a green lego piece playing Percy and someone's base inadvertenty playing the chocolate factory). There's also the fact that by crashing a base, he gets the conversation and interaction he craves, without having to do any hard work to make it happen. No decoding language, no reading faces, no inventing novel words... just immediate attention (mostly of the adult variety, as the kids are over him by that point). Job done, Billy style.

The teachers think there's an element of naughtiness here too, and maybe there is. We don't see it at home much, but then we don't see much challenging behaviour. I'm willing to provisionally accept their reading of the situation...

So, consequences attached, Billy was banned from base corner, and the day progressed. He'd chosen animals to study in preparation for a trip to the zoo. In fact, he chose two. And he'd had a brilliant conversation with one of his younger classmates about frogs. Turns out both of them love frogs, and know 'all the frogs in the whole wide universe'.

Then, as we walked out the front gate and past the front fence of the school, three older boys from Billy's class called out to him, stopping him in his tracks.

'Hey Billy', they called in loud, slow voices accompanied by exaggerated, bright eyed facial expressions (you know the sort you are tempted to use with tiny babies or people with dementia), 'Do... you... have... a... house?'

'Yes, of course.' said Billy, to a chorus of giggles and smirks.

I was standing right there. Right next to them. Probably not the smartest choice these patronising little ingrates have made. I gave them the Mummy death stare, until one said... 'what...?'

Through angry tears, I said, 'You guys need to think very carefully about why you ask Billy questions like that...' and glared some more, until they shrank away.

Things were spinning through my head, as I grasped Billy's hand too tightly, walking back to the car. I'm thinking, Billy's so much nicer and smarter and... and.. and. But it doesn't matter what Billy is, to a lot of kids. Hell, it doesn't matter to a lot of adults. Because the thing they will struggle with, right up front, is the fact that he's different. And, different conjures up a lot of instinctual stuff in people.

Right now, I'd like to hurt those boys. I understand I cannot. But here, in a nutshell is exactly what I fear. These kids are six, maybe seven. And they already desire the power that comes from a cheap shot. They already relish the role of predator, and see my son as prey. It's primal, and it stinks.

I'll talk to the teachers. I'll talk to the kids. I've talked to Billy already. I've given him some words to consider as reactions ('I think that's a silly question' and 'Please don't disrespect me') but really, I'm pushing shit uphill. Or perhaps it's the whole moving a mountain one teaspoon at a time thing...

Am I allowed to flick teaspoons of soil into the eyes of little children? Even 'accidentally'...?

Here's a big fear, right here...

Let me begin by saying (as I may have before) I'm irish. I'm a catastrophiser. I was already carrying around a too-active mind, and a leaning toward the dark side before the 'a' word entered my life.

That's my disclaimer. I should just put this at the top of every post.

Today, I was driving home from the school drop off. Billy, slightly bizarrely, was thrilled to be back at school. He was immediately engulfed by wrestling boys, and was very happy to be there. They're working on animals, in preparation for a big trip to the zoo at the end of the term. So, he was happy - socially and cognitively. He was happy, and so I was happy... it's all good. He's safe, the world's a good place.

Then, they played this amazing song by Kate Miller Heidke on the radio.

It's a story from her life, she says. It's called Caught in the Crowd, and it tells of her reaction to a specific bullying in her school life. The description of the kid - the bullying victim, is the thing that got to me. He sounds a lot like he was autistic. He sounds a lot like Billy could be... at high school.

I don't want to write a failed future for my son. I truly do not believe that anything he does could be construed as a fail. He has such integrity. The way he lives in the moment, makes it (at least at this point in his life) very difficult for him to do anything but be himself.

But the world is an arse of a place sometimes. The pack is a dangerous entity. There is protection in being one of the crowd, and there is bravado in that protection. It is that unreal, immature bubble, that allows young people do horrible things. Especially when there is an easy target around - one who does not share a common understanding of simple teenage things like friendship and peer pressure.

I know he's very young right now, but at this point, I cannot see us sending Billy to a mainstream high school. I have no doubt that he can handle the school part. I do not believe it is fair to force him to handle the social part. It seems like sending a soldier into battle with fake weapons.

There must be another way of learning about the ins and outs of social transactions, without having to go through it on the coalface. We might not know how, yet, but given the generalities of what we know about how ASD people learn best... it can't be a huge leap to work it out.

This, to me, is one of the things we should be investing our research time and energy into... as this generation of ASD people grow into an adult world unused to such a big autistic population.

Just another thing to turn the mind to on a rainy afternoon.

But maybe not today, because today he's happy wrestling with his friends.