It was interesting listening to local ABC radio's pro-vax discussion yesterday*, though it was a little amusing that the vaccine 'expert' wasn't sure to begin with whether diphtheria was a bacterial infection. However he was, of course, sure that vaccines are beneficial. He was also sure that there is a very influential northern NSW group who are stridently anti-vax and are somehow causing a spate of non-compliance in that area. And he was adamant that people who choose not to vaccinate against diseases like whooping cough risk spreading the disease to those who do.
It was certainly a strange interview, given the above logic. Surely vaccines work by protecting people against an illness? If vaccines work, then disease carriers could pose little threat. So do vaccines work, or don't they?
Never mind; it wasn't exactly an inquisitive session. In fact both the interviewer and interviwee were in complete accord on the incomprehensibility of anyone ever saying 'no' to a vaccine. They made no distinctions between types of vaccines or reasons for refusal, and given the absence of talkback to provide the opportunity for questions to be asked and heard, the session really came across (at least to this listener) as pro-vax advertorial.
I do say 'pro-vax' advisedly... You see, some people are genuinely pro-vax — that is, they actually earn a living by promoting vaccines. However nobody that I know of makes a living by advocating that people question or refuse vaccines. But even if there was something to gain by being anti-vax, people like me who actually have no strong opinion about global vaccine safety, but have serious questions about the Hep B jab (including age at administration, mercury dosage per bodyweight, blood-brain barrier vulnerability and so forth), still cop the same scathing attacks as people who, for whatever reason, see all vaccines as dangerous. To pro-vaxers, any form of debate is 'anti-vax'.
I'm on the fence with vaccines, or even rather pro. In cases like whooping cough, diphtheria and polio, I'd rather risk the chance of an adverse reaction than cop the disease. (Having said that, the radio 'expert' did mention that you can catch whooping cough as an adult after being vaccinated as a child. Hmmm.)
But you won't hear people like me on public radio, and you won't see my articles in print (though I've sent well worded opinion pieces to various newspapers), because we don't fit into an easily dismissed 'anti-vax' category. Lacking industry affiliation, we have no authority (because the only authority when it comes to medical science is the industry of medical science).
Without authority, all I can do is blog... And here I go again with a call for research — better, wider, unbiased — independent.
Something causes autism...
*92.5 FM, ABC Central Coast, Wednesday 4th May 2011... Time not noted.
Wednesday, May 4, 2011
Sunday, April 24, 2011
Questioning methionine in relation to autism...
It seems to me that a genuine hunt for whatever contributes to autism could do worse than sneaking a peak at artificial methionine.*
Methionine is one of the amino acids, a building block of tissue. Ever since the 1940s, it's been synthesised from such ingredients as propane to make a cheap supplement. However it wasn't in wide supply until the 1970s, when it suddenly became an increasingly widespread (and today practically ubiquitous) element of poultry feed. Notably, the use of chicken meat as a protein source has skyrocketed since the 1970s, as has autism.
Unfortunately artificial methionine is subtly different from the type naturally used for animal tissue -- that is, the artificial substance occurs in a mirror image of left and right handed molecules (or 'racemes'). The only form of methionine that can be used to make animal tissue is the left handed (or 'L') version. Thus an animal must convert the 50% that is right handed to L-methionine. This conversion is about 90% in chickens and from my reading approximately 30% in humans (that is, leaving a percentage unconverted).
It's unknown to my research if some of the right handed methionine stays in a chicken carcass and enters the human diet, but reasonable to presume it would. Given the low human conversion rate, this would surely produce elevated blood methionine.
Now here's the alarming part: elevated blood methionine is associated with dementia. The question is whether, by similar processes, it may be related to autism?
Most interestingly, methionine seems to connect (at least to my reading) with every area found to be faulty in autism. Ordinarily, methionine is used to make tissue-building amino acids and also important sulphur compounds (such as those involved in heavy metals detoxing). Methionine requires vitamin B-12 to be converted into other compounds, and an excess of methionine can lead to B-12 shortage. Autistic children appear to have a problem detoxing heavy metals, have a B-12 shortage (or at least, like dementia, can be improved by high B-12 doses), and usually have improper sulphur levels. I haven't read whether autistic children have elevated methionine, but it would be very interesting indeed to find out.
Are these enough reasons to call for an examination of our most popular meat, and the feeding practices that have developed in the quest for cheap food?
Or is commercial science looking after us perfectly well, and it's just our genes that aren't behaving properly?
I know one thing: my genes have been around for thousands of years, while artificial methionine has been around for about as long as autism.
*For this post, all my citations will be on my other blog: see http://naturalchicken.blogspot.com/ and look to the post titled 'artificial methionine: is it safe?', usually sitting among the 'most popular' to the right.
Methionine is one of the amino acids, a building block of tissue. Ever since the 1940s, it's been synthesised from such ingredients as propane to make a cheap supplement. However it wasn't in wide supply until the 1970s, when it suddenly became an increasingly widespread (and today practically ubiquitous) element of poultry feed. Notably, the use of chicken meat as a protein source has skyrocketed since the 1970s, as has autism.
Unfortunately artificial methionine is subtly different from the type naturally used for animal tissue -- that is, the artificial substance occurs in a mirror image of left and right handed molecules (or 'racemes'). The only form of methionine that can be used to make animal tissue is the left handed (or 'L') version. Thus an animal must convert the 50% that is right handed to L-methionine. This conversion is about 90% in chickens and from my reading approximately 30% in humans (that is, leaving a percentage unconverted).
It's unknown to my research if some of the right handed methionine stays in a chicken carcass and enters the human diet, but reasonable to presume it would. Given the low human conversion rate, this would surely produce elevated blood methionine.
Now here's the alarming part: elevated blood methionine is associated with dementia. The question is whether, by similar processes, it may be related to autism?
Most interestingly, methionine seems to connect (at least to my reading) with every area found to be faulty in autism. Ordinarily, methionine is used to make tissue-building amino acids and also important sulphur compounds (such as those involved in heavy metals detoxing). Methionine requires vitamin B-12 to be converted into other compounds, and an excess of methionine can lead to B-12 shortage. Autistic children appear to have a problem detoxing heavy metals, have a B-12 shortage (or at least, like dementia, can be improved by high B-12 doses), and usually have improper sulphur levels. I haven't read whether autistic children have elevated methionine, but it would be very interesting indeed to find out.
Are these enough reasons to call for an examination of our most popular meat, and the feeding practices that have developed in the quest for cheap food?
Or is commercial science looking after us perfectly well, and it's just our genes that aren't behaving properly?
I know one thing: my genes have been around for thousands of years, while artificial methionine has been around for about as long as autism.
*For this post, all my citations will be on my other blog: see http://naturalchicken.blogspot.com/ and look to the post titled 'artificial methionine: is it safe?', usually sitting among the 'most popular' to the right.
Sunday, March 6, 2011
Flawed science versus anecdotes...
Years ago I tried to take up the issue of aluminium in a packaged rice milk with the local food safety body (the NSW Food Authority). In my letter I pointed out the coincidence between my daughter's serious regression and her ingestion of rice milk; her high hair aluminium load as revealed by laboratory testing; and the results of a test on all her water and drinking products which found the level of aluminium in the rice milk to be many orders of magnitude higher than mandated water safety levels. (I didn't bother adding that chelating to remove heavy metals appeared to bring an almost immediate and profound improvement.)
The Food Authority kindly replied that, because rice milk is considered a foodstuff, it is not covered by the same standards that protect water. In fact according to them, there are no aluminium standards set for foodstuffs. The representative from the Food Authority told me that even if my child became demonstrably and directly sick as a result of ingesting aluminium from a foodstuff, the company responsible could not be sued, because there is no standard to accuse them of being in breach of.
This little excursion into the disastrous history of my child-raising has a point. For me, seeing what harm the ingestion of high levels of aluminium apparently did to my child, the matter of neurotoxins in foods commonly given to children (and especially to gut compromised children, such as autistic children, whose parents are trying a casein free diet) became something of an emergency. I desperately wanted to draw government attention to the possible problem and see something done to stop other children going through the devastating collapse my girl suffered. But alas, because of one small omission in the legislation, there was no hope of bringing change. The Food Authority person I spoke to was adamant that to bring changes to recommendations like aluminium levels in foodstuffs is an extremely unwieldy process, likely to take years (if ever it happens at all). And they don't start that kind of ball rolling for one person.
So what was I left with? A girl who had plumbed the depths of regression (functional blindness, anorexia, vegetativeness) and come back to a point about that of a twelve month old baby, still requiring round-the-clock care. Strong evidence that at least one of the main brain injurers was aluminium, but no way of acting on this to save other children. A set of experiences that could not be comprehended using known standards or legislated science.
I was left with an anecdote.
The trouble with anecdotalism on the net is that there are so many of us, and we come at our topic of interest from such widely different perspectives. We're unfocused, undisciplined and we don't interact a whole lot together, much as certain paid corporate stand-ins like to pretend that there's some kind of network. (I don't have time to network.) We have a lot of individual stories, and there are an awful lot of toxins (and possible reactions to them) to speak about. And of course experiences like my girl's haven't been backed up by scientific studies.
But if I can simplify what I see as the main hurdle in reducing future suffering — and isn't that the main reason to talk about autism? To try to help others not yet born into the nightmare? — it's that the pressures against true investigation and research are simply too powerful when compared to the pressures toward proper research. On the one side are corporate interests and governments connected to them. On the other is the pure, simple motor of suffering. And those of us dealing with the suffering on a regular basis are mostly busy handling that.
For this reason alone, I don't think it's fair for anyone to complain that poor 'proper' scientists are given no more intellectual weight than anecdotalists on the internet. Given the Food Authority's mandated silence on the topic of aluminium, and their caution to me that I mustn't ever make the claim that the levels of toxic metal in my child's foodstuff were 'high', 'dangerous', 'harmful' etc (or I might be sued by the company involved), it's clear to me that the science of food safety has a very pernicious blind spot. And if the science of food safety has a blind spot, what about the science of vaccines? Genetic modification? Pesticides?
What's the point of scientific authority if the science is blind?
Something causes autism.
The Food Authority kindly replied that, because rice milk is considered a foodstuff, it is not covered by the same standards that protect water. In fact according to them, there are no aluminium standards set for foodstuffs. The representative from the Food Authority told me that even if my child became demonstrably and directly sick as a result of ingesting aluminium from a foodstuff, the company responsible could not be sued, because there is no standard to accuse them of being in breach of.
This little excursion into the disastrous history of my child-raising has a point. For me, seeing what harm the ingestion of high levels of aluminium apparently did to my child, the matter of neurotoxins in foods commonly given to children (and especially to gut compromised children, such as autistic children, whose parents are trying a casein free diet) became something of an emergency. I desperately wanted to draw government attention to the possible problem and see something done to stop other children going through the devastating collapse my girl suffered. But alas, because of one small omission in the legislation, there was no hope of bringing change. The Food Authority person I spoke to was adamant that to bring changes to recommendations like aluminium levels in foodstuffs is an extremely unwieldy process, likely to take years (if ever it happens at all). And they don't start that kind of ball rolling for one person.
So what was I left with? A girl who had plumbed the depths of regression (functional blindness, anorexia, vegetativeness) and come back to a point about that of a twelve month old baby, still requiring round-the-clock care. Strong evidence that at least one of the main brain injurers was aluminium, but no way of acting on this to save other children. A set of experiences that could not be comprehended using known standards or legislated science.
I was left with an anecdote.
The trouble with anecdotalism on the net is that there are so many of us, and we come at our topic of interest from such widely different perspectives. We're unfocused, undisciplined and we don't interact a whole lot together, much as certain paid corporate stand-ins like to pretend that there's some kind of network. (I don't have time to network.) We have a lot of individual stories, and there are an awful lot of toxins (and possible reactions to them) to speak about. And of course experiences like my girl's haven't been backed up by scientific studies.
But if I can simplify what I see as the main hurdle in reducing future suffering — and isn't that the main reason to talk about autism? To try to help others not yet born into the nightmare? — it's that the pressures against true investigation and research are simply too powerful when compared to the pressures toward proper research. On the one side are corporate interests and governments connected to them. On the other is the pure, simple motor of suffering. And those of us dealing with the suffering on a regular basis are mostly busy handling that.
For this reason alone, I don't think it's fair for anyone to complain that poor 'proper' scientists are given no more intellectual weight than anecdotalists on the internet. Given the Food Authority's mandated silence on the topic of aluminium, and their caution to me that I mustn't ever make the claim that the levels of toxic metal in my child's foodstuff were 'high', 'dangerous', 'harmful' etc (or I might be sued by the company involved), it's clear to me that the science of food safety has a very pernicious blind spot. And if the science of food safety has a blind spot, what about the science of vaccines? Genetic modification? Pesticides?
What's the point of scientific authority if the science is blind?
Something causes autism.
Wednesday, February 9, 2011
Update on somethingcausesautism.com...
A few days ago I googled somethingcausesautism and hit a site that looked good. But when I clicked the 'causes' link I found only a page of sponsored links.
And unfortunately these sponsored links appeared exactly that... sponsored. Right down the list, peeping out as though an afterthought, was the word 'causes'. When I clicked on that I found nothing connected to environmental concerns, and indeed very little material inquiring about 'causes' at all, except one link proclaiming it to do with genes.
The latter page went on to talk about left and right handedness and human prehistory, as though all of prehistory has been an inevitable progression toward the one-in-a-hundred-and-something (or one-in-ten if you count ADHD) autism rate we have now. The forgotten facts of evolution are that genetic conditions reduce in a population unless they confer a survival benefit. The problems with infant autism — inattentiveness, social withdrawal, peculiarities of sense and motor function — are severe enough in modern society, but in a palaeolithic society they would surely have been lethal.
Even the wider research used to support a genetic link proves that there's no complete relationship between genes and autism — nearly 10% of identical twins don't share autism even when one has it. The author of the website opening with the plain view that autism is genetic should really do some baseline research.
Sponsors should stop trying to settle people's puzzling minds with dead ends and unconvincing 'science'. If they really want to settle people's minds, they should run (and make public) decent investigative research into autism and substances that might account for its symptoms, taken one-by-one as well as together (for instance demyelinisation, brain cell death, enzymatic oddities). A list of causal agents could then be compared to autistic population data to try to narrow down most likely culprits. Of course, I have a feeling mercury will still be high on the list. But the call for research shouldn't start with a bias. And it may be that pesticides also figure high.
You won't read anything like this if you stay on the sponsored path. It's a shame, because asking questions is the road to understanding. Alas, some sites (or rather paid advertisements) seem determined to block the road.
Happily, after a friend suggested it, this morning I purchased the domain www.somethingcausesautism.com and had it redirected here. At the very least people reading this blog might be inclined to question sponsored 'facts'... If not, then at least I've done no harm. After all, there's no such thing as reading too widely when it comes to a condition medical science admits is still fundamentally a mystery.
Something causes autism.
And unfortunately these sponsored links appeared exactly that... sponsored. Right down the list, peeping out as though an afterthought, was the word 'causes'. When I clicked on that I found nothing connected to environmental concerns, and indeed very little material inquiring about 'causes' at all, except one link proclaiming it to do with genes.
The latter page went on to talk about left and right handedness and human prehistory, as though all of prehistory has been an inevitable progression toward the one-in-a-hundred-and-something (or one-in-ten if you count ADHD) autism rate we have now. The forgotten facts of evolution are that genetic conditions reduce in a population unless they confer a survival benefit. The problems with infant autism — inattentiveness, social withdrawal, peculiarities of sense and motor function — are severe enough in modern society, but in a palaeolithic society they would surely have been lethal.
Even the wider research used to support a genetic link proves that there's no complete relationship between genes and autism — nearly 10% of identical twins don't share autism even when one has it. The author of the website opening with the plain view that autism is genetic should really do some baseline research.
Sponsors should stop trying to settle people's puzzling minds with dead ends and unconvincing 'science'. If they really want to settle people's minds, they should run (and make public) decent investigative research into autism and substances that might account for its symptoms, taken one-by-one as well as together (for instance demyelinisation, brain cell death, enzymatic oddities). A list of causal agents could then be compared to autistic population data to try to narrow down most likely culprits. Of course, I have a feeling mercury will still be high on the list. But the call for research shouldn't start with a bias. And it may be that pesticides also figure high.
You won't read anything like this if you stay on the sponsored path. It's a shame, because asking questions is the road to understanding. Alas, some sites (or rather paid advertisements) seem determined to block the road.
Happily, after a friend suggested it, this morning I purchased the domain www.somethingcausesautism.com and had it redirected here. At the very least people reading this blog might be inclined to question sponsored 'facts'... If not, then at least I've done no harm. After all, there's no such thing as reading too widely when it comes to a condition medical science admits is still fundamentally a mystery.
Something causes autism.
Monday, February 7, 2011
Naphthalene warning because of a gene mutation: 'catastrophic brain injuries'...
We-hell.
Under 'Mothball warning sounded by experts', yesterday's Sydney Morning Herald (Fairfax, Feb 7, 2011, page 3, print) ran an article by Kelly Burke about naphthalene.
Describing one infant death and two others developing 'kernicterus, a debilitating disorder which [...] leads to profound brain damage in infants with a common gene defect' after exposure to naphthalene, the article makes terrifyingly clear the possible link between genetic mutations and environmental toxin sensitivity.
Indeed after reading the experts' view on naphthalene being so toxic it should be banned, it becomes clear that 'gene defect' may not be the right way to describe the mutation involved. As mentioned later in the article, that very same 'defect' is carried by 'as many as one in 20 people of Asian, African, Middle Eastern and Mediterranean descent' and confers protection from malaria.
The paediatricians don't say the 'gene defect' means those at risk of catastrophic brain injury from naphthalene should suck it up. Humanely, in my view, they instead advocate the withdrawal of naphthalene. It's tempting to compare this to what's happening (or not) with autism, where even as it's known that something environmental contributes, interest in locating and removing that factor seems nonexistent.
It's funny, isn't it? If your genes, however sturdy they may be in the face of other challenges, are susceptible to a particular toxin, they're labelled 'defective'. Yet toxins such as naphthalene and mercury are still powerfully lethal even in small doses to supposedly 'normal' people. If a toxin is this powerful, it seems to me that the 'defect' isn't in the gene that renders someone extra-susceptible to it, but in the overarching science that fails to ensure product safety across all genetic types.
Of course, banning a product is just one way to go. The other way is to accept that those poor 'defect' carriers (who would be great survivors of malaria) are allowed to die out. But the end point of that chain of decisions would surely be the accumulation of the toxin to a point where other gene-types become noticeably affected too.
Maybe with autism we've already reached that point?
Under 'Mothball warning sounded by experts', yesterday's Sydney Morning Herald (Fairfax, Feb 7, 2011, page 3, print) ran an article by Kelly Burke about naphthalene.
Describing one infant death and two others developing 'kernicterus, a debilitating disorder which [...] leads to profound brain damage in infants with a common gene defect' after exposure to naphthalene, the article makes terrifyingly clear the possible link between genetic mutations and environmental toxin sensitivity.
Indeed after reading the experts' view on naphthalene being so toxic it should be banned, it becomes clear that 'gene defect' may not be the right way to describe the mutation involved. As mentioned later in the article, that very same 'defect' is carried by 'as many as one in 20 people of Asian, African, Middle Eastern and Mediterranean descent' and confers protection from malaria.
The paediatricians don't say the 'gene defect' means those at risk of catastrophic brain injury from naphthalene should suck it up. Humanely, in my view, they instead advocate the withdrawal of naphthalene. It's tempting to compare this to what's happening (or not) with autism, where even as it's known that something environmental contributes, interest in locating and removing that factor seems nonexistent.
It's funny, isn't it? If your genes, however sturdy they may be in the face of other challenges, are susceptible to a particular toxin, they're labelled 'defective'. Yet toxins such as naphthalene and mercury are still powerfully lethal even in small doses to supposedly 'normal' people. If a toxin is this powerful, it seems to me that the 'defect' isn't in the gene that renders someone extra-susceptible to it, but in the overarching science that fails to ensure product safety across all genetic types.
Of course, banning a product is just one way to go. The other way is to accept that those poor 'defect' carriers (who would be great survivors of malaria) are allowed to die out. But the end point of that chain of decisions would surely be the accumulation of the toxin to a point where other gene-types become noticeably affected too.
Maybe with autism we've already reached that point?
Monday, January 24, 2011
ADHD figures up to one in ten... Is it my imagination or is that high?
Yesterday's Sydney Morning Herald (paper edition) carried a front page story titled: 'Males fuel rise of the Ritalin generation' by Amy Corderoy. (See SMH, Fairfax, Monday January 24, 2011, page 1-2.)
The article's Dr Scott, who studied Ritilin use, was quoted as saying: 'About five to 10 percent of the population has ADHD'. He went on to note that girls were often undiagnosed (presumably because they may have the passive sort, often called ADD, which can easily be overlooked as daydreaming, forgetfulness and so forth).
The ten percent diagnostic figure seems to match my limited personal experience teaching in schools. If the department responsible won't give out autism prevalence statistics because of privacy concerns, the education institutions are where its prevalence is arguably most obvious. In most of the handful of classes I taught in, the teachers seemed at a loss to account for the high numbers of children with attention issues. I'm not talking about children who fidget and daydream. These were children who snatched others' books, ran about the room, dived under desks covering their ears against unpleasant noises, failed to form letters properly, ignored instructions, interrupted, disrupted others and seldom completed tasks no matter how rigorously they were brought to attention.
ADHD is usually considered as separate to ASD (or autism spectrum disorders). However Diane Kennedy argues convincingly that ADHD is an ASD (see The ADHD Autism Connectionhttp://www.amazon.co.uk/ADHD-Autism-Connection-Diagnoses-Effective-Treatments/dp/1578564980), and treatments such as the gluten/casein free diet and even chelation have often been described as working for both. The book I used to chelate my girl described the disorders as linked, and also recommended similar treatments for both (see Children with Starving Brains http://www.amazon.com/gp/product/images/188364710X/ref=dp_image_0?ie=UTF8&n=283155&s=books).
One in ten is a terrifying figure if true. Of course, even more terrifying is the prospect that it might be increasing in prevalence. Unfortunately given the absence of a centralised ASD/ADHD counting system (our government leaves it to the States to do their own individual work), nobody is in an ideal position to either notice or recognise a trend.
If you're not already worried, maybe it's time you went into a schoolroom.
Meanwhile, something causes autism.
The article's Dr Scott, who studied Ritilin use, was quoted as saying: 'About five to 10 percent of the population has ADHD'. He went on to note that girls were often undiagnosed (presumably because they may have the passive sort, often called ADD, which can easily be overlooked as daydreaming, forgetfulness and so forth).
The ten percent diagnostic figure seems to match my limited personal experience teaching in schools. If the department responsible won't give out autism prevalence statistics because of privacy concerns, the education institutions are where its prevalence is arguably most obvious. In most of the handful of classes I taught in, the teachers seemed at a loss to account for the high numbers of children with attention issues. I'm not talking about children who fidget and daydream. These were children who snatched others' books, ran about the room, dived under desks covering their ears against unpleasant noises, failed to form letters properly, ignored instructions, interrupted, disrupted others and seldom completed tasks no matter how rigorously they were brought to attention.
ADHD is usually considered as separate to ASD (or autism spectrum disorders). However Diane Kennedy argues convincingly that ADHD is an ASD (see The ADHD Autism Connectionhttp://www.amazon.co.uk/ADHD-Autism-Connection-Diagnoses-Effective-Treatments/dp/1578564980), and treatments such as the gluten/casein free diet and even chelation have often been described as working for both. The book I used to chelate my girl described the disorders as linked, and also recommended similar treatments for both (see Children with Starving Brains http://www.amazon.com/gp/product/images/188364710X/ref=dp_image_0?ie=UTF8&n=283155&s=books).
One in ten is a terrifying figure if true. Of course, even more terrifying is the prospect that it might be increasing in prevalence. Unfortunately given the absence of a centralised ASD/ADHD counting system (our government leaves it to the States to do their own individual work), nobody is in an ideal position to either notice or recognise a trend.
If you're not already worried, maybe it's time you went into a schoolroom.
Meanwhile, something causes autism.
Friday, January 14, 2011
Rett syndrome: you're on your own until the cops come...
One of the most distressing news items I've read in a while.
http://www.abc.net.au/news/stories/2011/01/14/3112932.htm
The mother failed to resuscitate her drowned girl. Having spoken of euthanasia and murder-suicide, she now finds herself being investigated by the coroner to ascertain whether murder charges should be laid.
Rett girls have such severe swallowing problems that they often inhale liquids (and hence literally nearly drown with every meal). They lose purposeful hand function, communication, speech and often walking ability. And worst of all is the constant screaming as the anorexic Rett girl's brain continues to fail. Screaming doesn't mean only confusion or unhappiness. It surely means unbearable pain.
What kind of parent would *not* consider whether their child would be better off dead than live a life with Rett syndrome? At age 2, the worst is yet to come. Given the lack of help and resources in those early years (with the huge queues for help for all the autism spectrum disorders, Rett is just another waiting list entry), thoughts of euthanasia must come to everyone. The difference with this woman is that she spoke these thoughts aloud.
And so did I. To my partner, not to DOCS. Naturally enough, my partner reacted with horror and disgust. But he missed the point.
I didn't speak these thoughts aloud because I intended to act on them. In fact, I expressed them for the opposite reason: to make sure I *didn't*. Euthanasia was an impossible solution to an unbearable problem. Expressing it was simply expressing the impossibility of the predicament we and our girl were in.
It's a weird world if you're a carer. We've realised the hard way that what we do on a daily basis is virtually ignored by society (or even actively frowned on, such as when our child makes strange noises in public), yet if we make one slip, we'll know from cases like this one that we'll be studied forensically.
Meanwhile, looking back I can say that death couldn't possibly have been more painful for my girl than what she went through, and she went through it for many months. With death by drowning, it only happens once. With Rett girls' swallowing difficulties, drowning happens, or nearly happens, at every meal, to the point where they simply refuse to eat or drink at all.
What kind of world would ask a mother to resuscitate a child to that kind of existence? Especially when conventional medicine has nothing to give in terms of treatment?
I don't know what I'd have done if my girl had fallen into the pool and drowned. If it happened today, I'd dive right in and give her mouth-to-mouth, no matter what. She enjoys being alive; she loves us; she's not in pain. Looking after her, however difficult, can be a joy. But if it had happened when she was going through her eighteen month long period of pain, anorexia, screaming, night-fits, head-banging, hand-banging, not drinking at all?
No, I can't answer that.
All I know is something causes autism. And given that not all Rett girls show the gene associated with it, and that Rett syndrome (like all the autisms) appears to be increasing from one in 15,000 to being the leading cause of severe intellectual disability in girls, I think it's fair to ask whether something similar contributes to Rett syndrome?
Addition: I just wanted to add that one of the hardest things with our girl has been to keep her away from water. She loves water; she'll do anything to get to it, and doesn't recognise the danger if it's deep. All it takes is one carelessly closed door...
In fact, any danger-zone seems an instant drawcard to her! I once had to rush out in my night-dress because my son admitted that he'd let her outside twenty minutes earlier... There she was, being carried around from door to door by a distressed-looking ute driver. She'd been found running circles on the highway!
http://www.abc.net.au/news/stories/2011/01/14/3112932.htm
The mother failed to resuscitate her drowned girl. Having spoken of euthanasia and murder-suicide, she now finds herself being investigated by the coroner to ascertain whether murder charges should be laid.
Rett girls have such severe swallowing problems that they often inhale liquids (and hence literally nearly drown with every meal). They lose purposeful hand function, communication, speech and often walking ability. And worst of all is the constant screaming as the anorexic Rett girl's brain continues to fail. Screaming doesn't mean only confusion or unhappiness. It surely means unbearable pain.
What kind of parent would *not* consider whether their child would be better off dead than live a life with Rett syndrome? At age 2, the worst is yet to come. Given the lack of help and resources in those early years (with the huge queues for help for all the autism spectrum disorders, Rett is just another waiting list entry), thoughts of euthanasia must come to everyone. The difference with this woman is that she spoke these thoughts aloud.
And so did I. To my partner, not to DOCS. Naturally enough, my partner reacted with horror and disgust. But he missed the point.
I didn't speak these thoughts aloud because I intended to act on them. In fact, I expressed them for the opposite reason: to make sure I *didn't*. Euthanasia was an impossible solution to an unbearable problem. Expressing it was simply expressing the impossibility of the predicament we and our girl were in.
It's a weird world if you're a carer. We've realised the hard way that what we do on a daily basis is virtually ignored by society (or even actively frowned on, such as when our child makes strange noises in public), yet if we make one slip, we'll know from cases like this one that we'll be studied forensically.
Meanwhile, looking back I can say that death couldn't possibly have been more painful for my girl than what she went through, and she went through it for many months. With death by drowning, it only happens once. With Rett girls' swallowing difficulties, drowning happens, or nearly happens, at every meal, to the point where they simply refuse to eat or drink at all.
What kind of world would ask a mother to resuscitate a child to that kind of existence? Especially when conventional medicine has nothing to give in terms of treatment?
I don't know what I'd have done if my girl had fallen into the pool and drowned. If it happened today, I'd dive right in and give her mouth-to-mouth, no matter what. She enjoys being alive; she loves us; she's not in pain. Looking after her, however difficult, can be a joy. But if it had happened when she was going through her eighteen month long period of pain, anorexia, screaming, night-fits, head-banging, hand-banging, not drinking at all?
No, I can't answer that.
All I know is something causes autism. And given that not all Rett girls show the gene associated with it, and that Rett syndrome (like all the autisms) appears to be increasing from one in 15,000 to being the leading cause of severe intellectual disability in girls, I think it's fair to ask whether something similar contributes to Rett syndrome?
Addition: I just wanted to add that one of the hardest things with our girl has been to keep her away from water. She loves water; she'll do anything to get to it, and doesn't recognise the danger if it's deep. All it takes is one carelessly closed door...
In fact, any danger-zone seems an instant drawcard to her! I once had to rush out in my night-dress because my son admitted that he'd let her outside twenty minutes earlier... There she was, being carried around from door to door by a distressed-looking ute driver. She'd been found running circles on the highway!
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