Sunday, December 27, 2009

whose genes do you blame?

We watch each other slyly, hubby and I. We note the family issues. Got a history in the cupboard of depression? Is that aunt acting weird? When you're told it's genetic, you spend a lot of time filing all the partner's misdemeanours away in the 'autism' box.

Especially males, poor creatures -- autism parents love to trot out the 'extreme male' theory, and laugh at hubby's probable autism. Oh gee, does your husband do that? Yes, mine does too! Autism! (Like an ugly baby, everyone chucking its chin, its faults making them even fonder.) At parent get-togethers everyone seems okay with the idea that males are on the spectrum. I wonder if this is just a female bonding kind of thing? Or are the males doing the same sort of slander elsewhere? You know, I kind of hope so, because the world would be a thoroughly depressing place if the 'extreme male' theory were true.

But even if I don't engage in 'my husband is autistic' feminine bonding, I can admit to having done worse. I've secretly blamed my partner for our girl's predicament. In fact, it was so secret, I didn't even consciously admit it to myself; I just resented him quietly, without thinking it through. If we hadn't bought that pesticide ridden house (he does love the old fashioned country charm). If only he'd bothered to find out he had a nephew with autism. If only he'd been better at eye contact (not sure what that would've got me, but the unconscious mind doesn't worry about logic). If only I'd known the symptoms of mild aspergers before I'd decided to have kids.

Of course, in the light of day I saw that it made no sense to single my partner out; practically everyone we knew displayed some signs of autism, to some degree. (Though this doesn't necessarily point to genes: everyone I know is vaccinated; most people use or accept pesticides.) Trouble is, if you have a child with autism, the difference is you collate these signs. They count toward the picture of its being genetic. Because of this weight of apparent evidence, it takes a pretty rational mind to spot the conundrum that, if autism is genetic, offspring shouldn't display far worse symptoms than the parents, and numbers shouldn't be escalating (a fact you have to go to the Department of Education to find out, since the Health bureaucrats are studiously not counting).

Fortunately it's fairly easy to step off the guilt bandwagon. Even if a syndrome is largely genetic, it makes no sense to blame the ancestors. More likely, their genes worked in certain environments that no longer apply now. Unfortunately the modern western environment is a neochemical cocktail, so we'd never know to what degree these 'genetic' syndromes might never have existed.

So even if the hubby of the piece is slightly aspergersy, don't blame him (even unconsciously) for what's probably in your genes too. It may be that our environments are simply too ubiquitously affected for most of us to cope without some degree of damage.

Genes or toxins, something causes autism.

Thursday, December 3, 2009

playground antics

Ha! Victory!
Of sorts...
We've been having a major tussle with a school whose special class accepted Milli. Actually they didn't accept her at all.
An hour a day was all the teacher wanted with Milli in her class. Weeks later, after pressure from us, she put it up to three and a half hours, but there was no plan to increase this to a full day.
The trouble is, this teacher's class is very 'normal' (or normalised). What a pretty little classroom! Six children sit in a neat line and watch the teacher diligently for cues. They can read and write. They can speak. Not only does Milli not speak or seem to understand language (that is, conventionally seem — there is a lot of evidence that she understands a lot but can't indicate so), she enjoys ripping up paper and destroying ornaments.
But still, it's the job of these classes to cater for all degrees of disability... Or so the policy statements pretend.
This teacher made it abundantly clear how annoyed she was by Milli's presence. Everything was phrased as being 'for Milli's benefit', but the only accommodations made for Milli were quite grudging ones, accompanied by a clicked tongue.
I kept being asked if I was thinking of toilet training her at all? On the second or third day a form was thrust in front of me to sign applying for a different school — 'Don't worry about the details,' the teacher said hastily, 'I'll fill them in for you.' It was very much 'Here's your hat — what's your hurry?'
The teacher was occasionally quite frank about her view of things. She told me that if she extended extra support to Milli, her other children would lose out. While true, it wasn't until I got home that I realised the subtext: it's right to apply more care to less disabled children, because being closer to normal means that the extra effort will be rewarded.
It's hardly fair that the entry of my child should result in a net loss for others — I appreciate how other parents might feel. Yet at the same time this attitude seemed to leave Milli at the very bottom of a ladder that she couldn't possibly climb. How could she ever gain entry to this privileged realm?
At this point, a letter came in the mail responding to our application to the disability-dedicated school, refusing Milli a place.
At this point, I cracked.
I rang DADHC (aging, health and disability are melted together in the same fiscal pot) in tears. As usual, Milli's case worker was away and unlikely to return my call, so I ignored the request to leave a message and demanded to speak to a duty officer. I debated with her and myself whether it was time to give Milli up to DOCS (community services), in the hope that she might receive better care and tuition through some fostered arrangement (foster carers are quite well supported, as I understand it). I rang the education department letter-signer (the one who had notified us of the failure of our application to the disability school) and explained the situation — amazingly, he not only understood Milli's plight at once, but guessed the name of the teacher involved. He said he would follow it up. The DADHC worker had also said that she wouldn't let the matter drop. I'd heard that before, but it turned out both she and the education department fellow were the most effective people I could have approached.
All this took place on a Friday. By Monday morning the following had happened:
- the dedicated disability school offered her a place starting next year; and
- the local school agreed to take Milli's education seriously, and allow her in for a full day until the end of term.
So here we are... Two feet up on the ladder, and climbing.
Incidentally, while all the above was going on, Milli's eardrum burst, revealing a nasty underlying middle ear infection, which has now been treated. Heaven only knows how long she's been in pain, because she couldn't give us any indication of what was wrong.
For the moment, at least, things are not only stable but looking up. And now, at least, I have a schedule I might be able to work by — after all, families in our situation usually have mortgages and bills as well. But the overall degree of difficulty in our lives has just got a little bit less.
Something causes autism.

Friday, August 14, 2009

everyone has cancer

I was talking to one of my sisters about the recent deaths of a few of our relatives, and I was amazed to hear her say, 'I think cancer is something we'd all die of if we lived long enough,' or words to that effect. I guess that's one medical view: that cancer rates in modern times are just a fact of living longer.
The odd part is how much it reminds me of the 'everyone is autistic to some degree' argument, which posits autism as somehow part of the general human condition, with serious cases just the nth degree.
It's possible, isn't it? I mean, I don't want to argue with that view if it turns out to be a simple fact.
But here's the but. What if it isn't part of the human condition?
What if it is to do with generationally increasing levels of background toxins?
When I look at my shampoo bottle I see that it contains mutagens — chemical that have the ability to mutate genes. There are carcinogens in my spice rack, food cupboard, floor, cupboards and walls, and the highway in the distance sends a constant stream of airborne carcinogens as well. It's a bit like the autism question: if environmental agents have been accumulating for generations, how would we know what's genetic and what isn't?
Maybe it's time to stop accumulating those toxins, just to be on the safe side.
Something causes autism.

Thursday, August 13, 2009

wow, six years and counting

Six and a half years old... That's amazing, isn't it? Still in nappies, still no speech, but we love her to bits.

Her latest obsession is neck kisses. She'll back up to me and give me a little tilt of the head to know it's acceptable if I kiss her now. It's particularly pleasing for her if I combine the kiss with a chin tickle or sudden growling lunge to play chasings. Emotionally, she's incredibly switched on.

I still remember the day we decided to give her a birthday party even though 'she wouldn't understand'. (Remember, she'd been vegetative for a long time, and we worried that a birthday party would upset and confuse her.) She started crying and laughing at once when we all sang 'happy birthday', and then she tried to eat the whole cake. For months afterward I just had to start singing 'happy birthday' for her to start laughing hysterically.

Now she has birthday celebrations every year, and sometimes I give her an extra birthday just for the hell of it.

Doesn't quite make up for the losses, but it helps.

Something causes autism.

Sunday, August 2, 2009

when she came back

Driving past the airport today reminded me -- the day she came back.
For about six months our girl was AWOL. All she did all day was bang her hands on the walls and cry. One day I picked her up and looked into her eyes and there was nobody there. She'd stopped recognising me.
Not long after I started chelating her I took her with me to pick up my father from the airport. As I went to put her back in the car, she suddenly took my face in both hands, turned it toward her, looked into my eyes and laughed.
Chelation was labelled dangerous after a widely publicised child's death in the US. It seemed to work for us. Within two days of our child's first dose she began to eat and drink again. Two weeks later her strange lopsided walk miraculously became even. She began to use her left hand, which had more or less become inert, and to splash and play in the bath again.
Something causes autism. And something else might be able to treat it — but you have to do it yourself.

Funny old funny

She's a funny old funny.
Loves the weather lady -- walked up to the TV and kissed it.
Kissed me today -- big sloppy cheek one that was almost a bite.
Had a rumble on the couch, laughing her head off, enjoying tickles.
Nice moments.

Genes schmenes

A potted family history: notwithstanding the grandmother who yodelled at parties and one addicted to barbituates, our families weren't autistic. All worked, socialised, got on together more or less, and basically functioned.
The biggest mystery of autism isn't the MMR. Our girl never even had that jab. It's why families with no prior history of autism can have severely autistic offspring.
The Health Report's Norman Swan suggested that autism may be a compounded genetic syndrome where like likes like -- that is, slightly autistic-inclined people are attracted to other slightly autistic-inclined people, and together they make one whole autism. Twin studies certainly suggest a genetic link. But gene studies can't explain the apparent rate increase since the 1970s, as most genetic syndromes that inhibit procreation gradually decline out of a population. If it's genetic, why is it on the rise?
Whatever causes autism probably involves up to 30 genes, according to researchers. What's unacknowledged is that many genes rely on environmental circumstances for expression, and certain environmental toxins are gene-altering. The interplay between both makes gene research on its own a blinkered field.
Meanwhile, news reports talk of autism 'triggers', but the image of the loaded gun just waiting to go off is in all likelihood a furphy. Far more accurate would be the metaphor of gas in a coalmine, with our children the canaries. That gas may affect the canaries first, but it sure as hell isn't good for anyone else.
Something causes autism.

Real estate treat! Arsenic loaded pine!

I've been looking for a house to buy in a new area, and it's amazing how many homes have shored up their surroundings with aresenic/copper/chromium treated pine. In the area and price range I want, about one in three homes has extensive use of treated pine.
These houses have treated pine retaining walls; treated pine garden edging; treated pine decks; treated pine swing-sets; and/or treated pine pool surrounds. Some have all of the above. Our house had treated pine decking when we moved in. We thought nothing of it when we bought.
Is treated pine a factor in increasing autism rates? I don't know.
All I know is something causes autism.

Sunday, July 26, 2009

tetra packaged baby formula

Is it my imagination, or is the packaging of pre-made infant milk formula a disquieting thing to note?
Some time ago, after getting a high aluminium hair result for our girl, I took rice milk in a tetra pack to a water lab and had it tested. The lab technician assured me that even though the lab wasn't food accredited, he could test for aluminium and get a fairly accurate result. I wasn't expecting the package to be high in aluminium; the foil lining had a plastic coating, and the company who produced the rice milk had said that they used no aluminium cookware in processing.
After testing, the technician was clearly amazed. He told me he'd been able to see the aluminium on the filter medium; that it had been 'orders of magnitude' higher than any of our water samples and, in his view, 'hundreds of times' higher.
Coincidentally, our girl's greatest deterioration occurred during her period of being on rice milk, after we dropped cow's milk to avoid casein.
We continually revolutionise our environment. We're constantly changing packaging, ingredients, agricultural and household chemicals. Is anybody looking where we're going?
One in a hundred is a terrifying statistic. But far more terrifying is the prospect of the rate continuing to increase.
Something causes autism!

Irritable bowel? Don't you mean irritated?

A friend was telling me she went to the doctor the other day, and was told she has 'irritable bowel syndrome'.
I said, 'Don't you mean irritated bowel syndrome?'
'No,' she said, looking alarmed, 'he said irritable.'
'So it's not that something's irritating your bowel, it's that your bowel is just irritable? A cranky bowel? One of those never-satisfied-always-scowling bowels that just won't have a good time?'
'Something like that,' she said, cringing.
'So,' I said, 'did the doctor look into whether something might be causing the irritation? Like, some kind of environmental toxin, maybe? You know you've always worried about that treated pine pool surround.'
'No.' She looked scandalised, like I'd suggested tailgating the doctor home and scrawling messages on his letterbox. 'He said it's a mystery complaint, but fairly common. He seemed to know what he was talking about.'
Well, didn't he! Give it a label — even better, give it a label that blames the carrier — and it becomes a simple syndrome, even if the doctors can admit they don't know the cause. They're always happy to add, 'There are genetic tendencies.' In other words they know what it is, and they know naturopathic medicine can't help, and they know it's got something to do with your bad genes (and their good ones keeping them safe from it, presumably), but that's all they know. They know just enough to rule out anybody else trying to find out.
Sound familiar? It does to me. Autism is a mystery complaint, but they're happy to look at a child for no more than five minutes (the rest of the time they're trying to type their observations) and give a complete diagnosis. And once the diagnosis is there, your fate is sealed. You get early intervention and a mumbled suggestion to alter the child's diet if you want to.
Doctors aren't bad people. They do a good job at averaging. But it's time we stopped expecting them to research. They're just too busy getting through the day's influx of flu phobics and hamstrung footballers to think critically.
Something causes irritable bowels, and something causes autism, and if you didn't use your own brain, you'd probably blame yourself for all of it.

looking back on the early years

She was normal at birth — that is, a hearing test showed no hearing problems, and she breathed well and looked around her with apparent interest. Out of fear for her future I allowed a doctor to give her the infant Hepatitis B vaccine containing mercury. We lived in a house that had been heavily sprayed by elderly stupids who had gut symptoms. But we didn't have any understanding of toxins and autism.
She could hold her head up from birth, and for the first 4 weeks was a happy, well fed baby. Then a respiratory infection brought home by our son from childcare seemed to develop into whooping cough, but each time I took her to hospital (both Wollongong and Bulli) they told me there was nothing wrong. I once held her in my arms while she coughed 42 times without taking an inward breath. Nobody believed me because she looked so healthy between coughing attacks. Once she really did whoop, unusual even in a case of whooping cough in a 2-3 month old baby. The hospital refused to let me stay there in the waiting room long enough for her to cough again so they could see it for themselves (the doctor said she wouldn't see her again, no matter what).
She had oral thrush for months, despite treatment. Nevertheless she was a fun baby; she laughed at everything. She enjoyed strange word sounds. In the mixture of unnoticed symptoms and basic 'thereness', she just seemed wonderful.
After the coughing illness, she began to wake every night and lie there laughing and playing for hours, then sleeping all day. We would lie awake listening to her, befuddled with lack of sleep, unable to comprehend.
At 5 months she started refusing breastmilk. She had to go on a bottle despite being only breastfed to that point (and me at home with her, so no interruptions). It was wholly her choice — one day she was breastfed; the next day she wanted nothing to do with it.
At nine months she had no interest in playing with children at childcare. She went around on her knees, not fully standing to walk until 14 months old. She held clutches of teddy bears in her arms and kissed and cooed over them, but wouldn't interact with other infants.
At 14 months the night giggling sounded insane.
At 18 months the childcare worker noticed that she didn't respond to her name. Things began to deteriorate very quickly from that point on. A hearing test couldn't be completed because the puppets scared her. She wouldn't drink out of bottles with pictures of animals on them, nor eat off a plate with a cartoon character. She wouldn't lie in a bed with character-decorated pillowslips.
After one look at her the paeditrician said 'autism'. We put her on a casein/gluten free diet, and her deterioration began to gallop. She stopped talking, though it's true that she'd never really acquired proper speech, only two-word couples like 'come out'. At age 2 she didn't talk at all, and I once saw her struggling to say 'come out', her face creased with confusion, so that all she could manage was 'muck out'. She stopped eating and drinking. For eighteen months it was all we could do to keep her above the starvation line. She went limp and floppy and screamed all the time. She grew back to her old clothes, to year 1 age and below. Her thighs were like sticks. Her ribs showed. We used to syringe liquid into her mouth and she'd scream and choke all the way through it. She went four days without food and drink.
We had her hair tested, revealing heavy aluminium, arsenic and other heavy metal loads. We had our water tested, and also her rice milk, which came in foil-lined packs. The rice milk was found to have massively higher aluminium levels (hundreds of times higher, according to the lab technician) than drinking water. The NSW Food Authority explained that I wasn't allowed to tell anyone packaged rice milk could be dangerous, or I would be sued. Naturally I'm not saying it now. And the arsenic and chromium-loaded deck can't be accused of causing dangerous arsenic and chromium absorption in a gut-lining-compromised infant because there's no 'safe' level set for arsenic or chromium loads showing up in hair.
Is this complex enough yet? Does it sound like something science, with its insistence on simplifying casuality through the deliberate elimination of variables, could understand?
After she'd gone 4 days without food or drink, I began to chelate her with alpha lipoic acid. The symptoms reduced markedly. She was able to coordinate her mouth to swallow liquids. Her limp went away. Whatever the science of chelation and heavy metals, she began to improve, and has not been seriously anorexic since.
When I look back, I can see that she was deteriorating within the first few weeks of life. When a baby says 'tickle' at four and a half months, any parent would feel proud. It's not counted as a sign of deterioration, and yet it probably is.
One medical writer's view on autism is that there may be a link between vaccinal inflammation, immune overreaction, and the subsequent infiltration of brain cells by environmental toxins. In other words, in this theory, the inflammatory response makes cells more permeable. Since vaccines create an inflammatory response for some time after injection, they may be more likely to allow toxins like pesticides to harm brain cells than an ordinary disease (which of course produces similar inflammation).
Well, it's an idea, isn't it?
But is anybody researching in this direction? It seems the research money is all being spent on gene hunting. Try telling that to parents whose own parents were unaffected, but whose child or children are still in nappies at age 5.
Something causes autism. But it's going to take a scientific paradigm shift to work it out.

Friday, July 17, 2009

Pesticide 'safe' according to industry funded authority

Despite being linked to birth and developmental abnormalities as well as deaths, the pesticide Endosulfan is okay for restricted use, according to the Australian Pesticides and Veterinary Medicines Authority's latest advice (as written up in today's Sydney Morning Herald in 'Pesticide "safe", says industry-funded body', News section, page 11, July 18-19 2009).

Endosulfan has been banned in over 60 countries, but India, Australia and the US still permit its use.

Something causes autism.

Thursday, July 2, 2009

Fruit and veg regularly exceed safe residue levels

In the Sydney Morning Herald of Friday July 3 2009, an article appeared, written by Consumer Affairs reporter Kelly Burke, under the heading: 'Consumers blind to toxic dangers at greengrocer' (page 3, News).

Opening with: 'Fruit and vegetables sold in NSW regularly exceed the permitted levels of chemical residues, yet consumers have no way of knowing how to identify and avoid potentially toxic produce', the article goes on to reveal that testing by industry body FreshTest found that 2.5 percent of produce contain excessive residue levels for various pesticides and herbicides, or contain traces of chemicals not approved for the crop.

The residues include Atrazine, which according to the article's box-out has been associated with 'Miscarriages, birth defects and developmental defects.'

Something causes autism.