Saturday, November 13, 2010

I'm quite scared to do it...

But I think it's time to dip my toe into the vaccine waters.

That actually sounds really yucky. More that that, it frightens the hell out of me, because there's nothing like a vaccine debate to make people angry and alienated. The last thing I want to do is alienate anyone... (I promise I'll return to hilarious stories about poo and hippy school next time)... but...

A couple of disclaimers:
 - Vaccinate your kids or not, I'm not questioning you.
 - I have no problem with autism per se. If that's who you are, awesome, that's who you are. I do have an issue with avoidable autism (or avoidable health issues of any kind).
 - Clearly, I have a leaning toward the non-vaccinating camp given I have a kid with a medically diagnosed vaccine injury and autism, but I'm completely NOT of the mind that all vaccinations are wrong.
- I'm totally not trying to back anyone (or myself) into a corner. I'm just trying to think it through.

I just kinda, sorta, want to organise my thoughts on vaccinations and vaccines.
Not so I (or anyone else) feels guilty or more conflicted.
Not so I can slam doctors or big pharma.
Not so I can isolate blame or even responsibility.

I'd like to do this, because it would be brilliant to think that we were making some inroads into a future where we all feel comfortable about vaccinating our kids (or not) and while we're at it... maybe we could also think about our comfort level with the other environmental insults that seem to challenge our kids.

Cos, I'm not feeling very comfortable right now. In fact, my level of uncomfortable has risen from king-sized-bed-in-a-flash-hotel to nasty-too-tight-underwear-worn-on-a-very-hot-day over the last six years or so.

What I'd like to know is... are there people on this planet who do not have the capacity (on an immune or other biological level) to cope with vaccines (and pesticides and cleaning chemicals and dietary additives and medicines). If it makes you feel better, insert the word 'certain' in front of each of those beastie nouns.

It seems to me that a lot of the 'is there a relationship between vaccines and autism' discussion gets banjaxed because people get tied up in 'yes' or 'no' as an end (rather than a beginning) to the debate. If we take wanting to say the yes/no answer out of it, what are we left with?


OK, then... let's look at the 'spectrum of maybe' and see what we find.

On one end of the spectrum is the belief that autistic people do not (innately or in an acquired manner) methylate (process and detox) heavy metals and other toxins well within their bodies. This leads to all sorts of biological consequences, especially in relation to the gut/brain/immune connection. It impacts on motor skills, thinking skills, bodily functions... yada yada yada. Given the presence of heavy metals and other chemical agents in vaccines and the environment, and the timing and density of the current vax schedules... we may be making susceptible children more vulnerable.

Makes a lot of sense to me. I see an emerging bank of evidence (and a much bigger and more vehement tsunami of refusal of that evidence) and I still go, 'meh... makes a lot of sense.'

On the other hand, is the camp that says autism (or anything else) just is. It happens. Get over it. Children get an unlucky roll of the (probably genetic) dice, and there you have it. Autism. We have more kids being diagnosed because doctors are getting cleverer all the time. (you can tell this argument is starting to rankle with me, can't you?)

It does make some sense, but seems oddly minimalist in its approach. And this is why.

When I was a kid, I knew a couple of kids who could have been autistic. One was a walking grasshopper encyclopaedia and went on to work in one of Australia's leading animal research zoos. The other had CP and what seems (now) like autism along with it. I went to an average, lower middle class set of schools, full of big populations of average lower middle class kids. Two kids, in all that time. And I'm the sort of person who would have noticed. Trust me on that one.

Now? Ask a teacher how many ASD kids they see in their school population. Ask a friend whether they know any ASD kids. Ask me, and I accept my perspective is somewhat skewed by family and online boards and EI, but even so... I have three friends from school with ASD kids, two friends from university and two from my early professional life. That's seven kids on the spectrum. That sure beats the grasshopper expert and the kid with CP.

How does this all tie in with vaccines (and other environmental insults?)

Kids definitely get more shots now than they used to. I should google the numbers but I don't think the numbers are the whole issue.

Here's my theory. For what its worth. And I'm 100% certain I'm not coming up with anything revolutionary.

Generations of people have lived with an increasing amount of untested or undertested combinations of toxins. These toxins have been coming at us from all angles - in our food, in our water, in the medicines we take, in the vaccines we receive,  in the substances we use to clean and deodorise our bodies and houses, in the plastic we use to wrap, store and heat our food.

We've trusted in 'them'. The decision makers. The seekers of evidence, who have tested all these substances and deemed them safe. How many times (in my head) did I think, 'Man, I feel odd after using that hospital grade viscous bleach to clean my bathroom... but they wouldn't let me use it if it wasn't safe.' Seriously, I thought that. A lot. But then I will admit, I feel 'odd' a lot (on account of being decidedly odd).

Minor diversion. I'm back now.

These chemicals have been (perhaps) tested separately but not in combination, perhaps tested under one circumstance (unheated) but not in another (oh, say... heated), perhaps suitable for use in one context (as an industrial cleaner) but not another (as a shampoo ingredient)... and they've been in constant, even increasing use over many generations. They are surely accumulating in our systems.

Now add this accumulation, in a chicken or egg style fashion, to an increasing genetic susceptibility to things like autism, ADHD, allergies, auto-immune conditions, asthma, epilepsy... and you get an increased change (surely) of creating increasing actual susceptibility in subsequent generations.

So, if we continue to treat emerging generations in the same way as we have treated those that have come before... the susceptibility is going to make newborns with cracks in their health.

And it is exactly those those newborns who deserve special consideration (and they are not receiving it, at least not here in Australia where they receive 25 vaccines over four visits before 6 months of age,  in various combinations).

You can probably tell I haven't gone past high school biology. I do not have an evidence based brain, for sure. But, as Scruffy's vet told me this week, I have a very good eye for relevant detail (which was handy as the walking stomach of a dog continued to vomit from unknown causes).

I swing from wanting to stand on the top of a grassy knoll waving a flag saying 'perhaps you should drive an alternate route today', and thinking I am a complete nut job. But here's my plan (crazy as it may sound).

Why can't we have a test  (either prenatally or just post birth)? A test to see how newborns immune systems are functioning. I don't know what we need to know, though I'm sure there are plenty of people who do know. But if we knew, we could make decisions about these precious newborns that might protect them the sorts of environmental (external) insults that may link with a possible genetic (pre-existing) susceptibility and cause... something like autism.

We test. We think. We act.

Feels (to me) like it beats the status quo - We assume. We ignore. We blame.

I hate feeling powerless. I hate feeling out of control. I really hate not being considered. I know I am not the only parent who thinks their child's health is being ignored. I am not the only parent who saw a child struggle with immunisations. I am not the only parent who suspects their child is worse off, having had decisions made about their health that were out of their control.

I don't blame anyone (though I do wish I'd spoken louder in various situations), but if there's a chance to reduce the numbers of kids with autism (ADHD, allergies, etc etc) shouldn't we try? At the moment, we seem to be telling the vocal parents to be quiet (because we are not doctors and therefore do not know) and then scrambling ever dwindling resources to 'cope' with all these diagnosed kids.

If you have a child with autism (no matter how 'mild'), or you are someone who feels empathy with kids, you will know that it's impossible to think that parents in the past didn't notice that their kids were autistic. If you have a child with any kind of special needs, you will have seen that blank look in the faces of the medical profession when you ask them questions they can't answer. Something is going on...

Oh, how I wish we could stand together, respectfully, as a community and acknowledge each others strengths. Even more important, we could acknowledge that we share this autism experience - we don't own it or control it, but we need to work together to understand it.

Or not... we could just think of fluffy bunnies and Renee Zellwegger movies.

I am seriously nervous about posting this, and would hope that even if it makes you feel like spitting all your teeth out one by one, that you still keep one thing in mind.

Our kids... my son, just like most kids, was conceived and born in pure love and hope. He lit up our lives from the moment we met him . And he still does.

But, every single day, he begs, through tears, for us to make sure the dog doesn't bark, because the sound feels like someone punching him. He has a massively high IQ and yet struggles to complete a simple first grade worksheet. He can talk up a storm, but doesn't have the muscle strength to eat meat. He hasn't got a chance in hell of sitting at a desk for more than five minutes at a time, unless YouTube is on that desk and he has control of it. And we are, undoubtedly, the lucky ones.

If there was a way, even a possibility, that you could spare your child an anxiety attack over a lamb cutlet, you would, right? And surely, if there was a way you could spare future generations of kids from going through hours of uncontrollable tantrums... you would, wouldn't you?

There's a roll of the dice, and there's ever diminishing odds... I know which one I'd choose.

OK, go spit out your teeth now. Who do I think I am?


jess said...

To me', the saddest byproduct of the way this topic is so often handled is that it makes it so hard for thoughtful, reasonable people like you to talk honestly and openly about it. I understand completely - truly - why it's so damn scary to wade into these treacherous waters, but it kills me' that it has to be this way.

I think this is absolutely true ...

"... a lot of the 'is there a relationship between vaccines and autism' discussion gets banjaxed because people get tied up in 'yes' or 'no' as an end (rather than a beginning) to the debate."

Not to mention that banjaxed is now my new favorite word. ;)

Anonymous said...

Oh my.....when is your book coming out?

Seriously, I nodded and smiled and teared up all the way through that most fabulous, thought provoking and inspiring post!

You certainly haven't gotten me offside. You know how I feel about all this....

Bravo, Valerie,

My teeth will all be staying in my mouth!,,

Kelli said...

This is a wonderful thoughtful post. Its amazing that you managed to take all the thoughts in my head and summarize them in a way that helped me understand my own feelings. :)

Anonymous said...

Val, you are amazing! We are not all crazy in this line of thinking. At all. The problem is that it goes against everything we are taught and supposed to do. You are just supposed to listen to your child's doctor and know that he has the child's best interest and health. But today? it's not that easy. We cannot continue to play vaccination roulette with this generation.

Lisa said...

I find the term 'risk management' deeply offensive.

The bean-counters crunch their numbers, and decide that if 85% of customers are happy, a company can afford to have complaints from, or lose, the other 15%. In a business that's offensive (especially if you are in the 15%).

The concept has permeated to such an extent, that the medical profession can argue that if the percentage of humans damaged by vaccine is less than the number of people damaged by the disease - then that is OK.

Oh, I understand the math. I can even understand the high-end approach. It's just that each number refers to real, actual, people.

But is that the best they can do - shrug and say 'oh well, you win some, you lose some'?

C+ Could do better. Needs to try harder.

Disclosure: my kids are vaccinated, and I also find offensive the woman who, many years ago, bragged at a playgroup that her children were not vaccinated, as I sat opposite, cradling my 6 week old, unprotected, child. Maybe there is something in the Chinese custom of mother and newborn not leaving the house and not having visitors for a (to Western thinking) ridiculous number of weeks.

Anonymous said...

"I also find offensive the woman who, many years ago, bragged at a playgroup that her children were not vaccinated, as I sat opposite, cradling my 6 week old, unprotected, child."

I remember having my vaccinated baby in playgroup, and the other mothers being afraid to have their unvaccinated babies near mine because mine was vaccinated. I wasn't afraid of them, but I did feel a little uncomfortable that they were uncomfortable. I knew they knew a lot about health though, so I knew they didn't vaccinate for a reason. I just didn't know the reason yet. Supposedly according to the doctors vaccines are to support good health of the child vaccinated?

Rebekah said...

this should go in the book, val. can you still add stuff?

Missy said...

I wrote a post very similar to this a while back.
I too believe that it has something to do with the immune system of babies when they are given their vaccinations.
It is in interesting thought that you do not hear a lot about.