31 Mar 2008

Some decadent days

We went to my brother's house in Leitrim for Easter. Lady and Thomas played with their cousins, Lady mostly played up with 6 year old C. and Thomas with 4 year old E. They get on really well together. Duncan preferred to ride a trike around outside. He had a notion to buy a toy bow and arrow (or "boanarro" as he wrote on his first trial on Google) and didn't really accept my explanation that toy shops are closed on Easter Sunday. Well, copious quantities on chocolate helped settle everyone, and we adults enjoyed good food, a few drinks and much chat.

Lady and Thomas stayed for 3 extra nights with their cousins, which was, by all accounts, a very successful event. They went swimming in a super duper, waves and slides pool, then they all won medals in some children's races at a 10k race my SIL ran. The village they live in seems to be populated by a strange breed of Irish folk who all run. Well, there are worse vices than could inflict them.

It was odd having just one child. Gordon and I took Duncan into Belfast on the train. We visited the Disney store to buy his much wanted bow and arrow toy, then we ate at Nandos in the newly opened and very posh Victoria Square shopping centre. Duncan was marvellous. He had his shouty moments. He always does, but so what. He was as happy as a boy can be on the train. Watching him, we talked about how fantastic we think he is, and how glad we are to have him. Having autism enter our lives was unexpected, unwelcome at first (before I figured out that autism=Duncan, which is obviously all good) and something that shook us right up, leading us to make choices in nearly every aspect of our lives that we might otherwise not have made.
But mostly, Duncan is just so blinkin' adorable, with his big eyes, his big tooth, his curls and all his games.

Duncan too had a night away from home at my dad's apartment, leaving we adults home alone. We ate out that evening, and then to be even more decadent, went out again for breakfast. In the afternoon we all drove around to pick up the travellers, so had our wee family back together again.

Since then, I can't quite remember what we've done. Lady went to a holiday activity scheme at a leisure centre a few times with her friend from next door. The children's usual classes and activities were off for the school holidays, so even though we're home-educators, the children were in holiday mode and we were (even) more disorganised than usual.

I do remember yesterday though. It was our 12th wedding anniversary. I don't know how that's even possible seeing as I'm still 24... My dad and step-mum took the children for a few hours and Gordon and me went for lunch at the Mourne Seafood Bar in Belfast. Rather romantically, among the songs playing softly in the background, was what we choose for the first dance at our wedding party. (OK, pass the sick bucket!) More importantly, the food was fabulous, and it's somewhere we'll definitely be back to.

My youngest brother and his family had also come up to Dad's place, so we enjoyed seeing them for the first time since his baby's christening. Both Thomas and Duncan were delighted with baby D, sitting beside him stroking his little head, though Duncan was a bit worried about D's touch of cradle cap, saying he had to sort the 'creepy crawlies', referencing what I tell the boys when I'm checking them over for nits!

So it's back to normal today, or at least what passes for normal here.

20 Mar 2008

More on the Autism-MMR trash story

I wrote recently about a terrible newspaper article entitled "Court links MMR to autism."

Last Sunday's edition contained my letter of complaint about that article;
LAST Sunday, Phil Doherty wrote an article titled Court Links MMR to Autism.
The USA Vaccine Injury Compensation hearing did not link autism to the MMR. The child under discussion, Hannah Poling, has an extremely rare, genetically acquired, metabolic disorder affecting her mitochondria.
The court, which requires a much lower burden of proof than scientific or medical procedures, has agreed only that the vaccinations “significantly aggravated an underlying mitochondrial disorder” resulting in a brain disorder “with features of autism spectrum disorder”.
That is not the same as stating she “did develop the condition — autism — after a series of jabs”.
Mr Doherty wrote: “The vaccines reacted with a DNA defect in her body . . . a defect found in 38 per cent of those with autism.”
It is pure fiction to suggest that 38pc of autistic people have the same rare DNA defect as Ms Poling. The MMR jab has never included the mercury containing compound thiomersal, which was used as a preservative in some vaccines.
Inaccurate and irresponsible reporting such as this is frightening more parents into forgoing vaccinations for their children

The newspaper addressed some of the points my letter raised, but it began with a straw-man argument;
Sunday Sun says . . . are you saying that, even if a vaccine was described as aggravating an underlying condition, it has in no way contributed to it?
I did not say this.
If your article had accurately said that "a vaccine was described as aggravating an underlying condition," there would have been no reason to complain. But instead, the headline of your 9th March article was, "Court Links MMR to Autism" and further, Mr Doherty wrote that she "did develop the condition — autism — after a series of jabs".
Secondly, research into mitochondrial DNA disorders in the population, which says 38pc of autism patients have it, has been peer tested and published in respected medical journals.
This is not true.
Dr Poling, Hannah's father, has co-authored a paper called "Developmental Regression and Mitochondrial Dysfunction in a Child With Autism."

I presume this is the peer reviewed published paper you refer to? It is a case study on Poling's daughter. It is also a retrospective study of the levels of an enzyme, creatine kinese, in a group of autistic people, 38% of whom were shown to have elevated levels. The paper concluded that, "further metabolic evaluation is indicated in autistic patients."

The paper does not say that 38% of the autistic population have "mitochondrial DNA disorders." Raised creatine kinese is not diagnostic of the rare condition of mitochondrial disease. It can be associated with mitochondrial dysfunction, but also can be linked to such conditions as inflammation of the heart muscle, stroke, muscular dystrophies and lung tissue death.
(Thanks to S.L. at Stop. Think. Autism. whose work here I've nicked for the above paragraph.)
We agree that the majority of child vaccinations are safe. However, even the Department of Health admits that a number of children will be damaged by inoculations. We never said Mercury was in the MMR vaccine in the UK . . . we said it was found in other vaccines in the UK.
The Polings were claiming that the mercury in thiomersal in Hannah's vaccines was what aggravated her condition. Yet your headline, and the line I quoted earlier, both attempted to implicate the MMR.

Since our story, we have received an emailed letter from Hannah's father, neurologist Dr Paul Poling, saying that his daughter does indeed have autism.
She may well have autism, but the US government's court documents state that she had "features of autism." Even if she is autistic, it doesn't follow that she was made autistic by the vaccines. Remember, this child has a rare, genetically acquired mitochondrial disease. Her father is on record saying that her mother has the same condition, though presumably to a much lesser degree.

Yesterday I received an email from Phil Doherty, author of the original, flawed article. His letter is said to be his personal opinion and not to represent the views of his employer:
I have been asked to respond on behalf of the Sunday Sun.
I would like to point out there are 4900 cases before the vaccine courts in the US from families claiming vaccines damaged their children. Whether these are the result of underlying Mitochondrial dysfunction or thiomasol or something else would be up to the law court and medical experts to establish.

Wrong again. As I have already informed these people, the Polings were for a while among the cohort of 4900 people in the Autism Omnibus hearings, who claim vaccines caused their child's autism. But the Polings dropped out of that group and pursued an individual claim, that vaccines aggravated a pre-existing condition. In fact, as Kathleen Seidel has shown, the Vaccine Injury Court have paid out before to children with a pre-existing physical condition who have been diagnosed with autism or related conditions after they sustained documented, verifiable vaccine injuries. It is only fair that compensation is paid in those very rare but sad times when a vaccine does result in one of the known, negative side effects.

The Autism Omnibus is trying to prove something different, that vaccines directly led to autism. In spite of the thousands of cases available to choose from, those selected to be heard as test cases last year, presumably the most convincing among the cohort, had very poor arguments easily refuted by scientists called by the US government's representatives. It is very unlikely they will win their cases.
According to Hannah Poling's doctors, her parents (one of which is a doctor) and other experts she has autism.
To say some one has features of autism is not-surprising disingenuous double-talk by the US government. As you will be well aware autism is not one disease as such but a set of symptoms that together are classed as being on the spectrum. As an expert I have spoken to this week put it - if you have features of autism you have autism whether those features are mild or severe.

The doctor who diagnosed her, not the US government, said she had 'features of autism.'
Perhaps she does have autism. I'd certainly consider her as autistic, politically. I'd love to see her and her parents tackle the ignorance and prejudice about autism, and help promote the rights of autistic people, starting by tacking the myth of vaccine poisoning.

The expert you spoke to isn't much of an expert. You wouldn't want to name him/her would you?
Actually, many people have features of autism but are not autistic. These issues are explored further here.
We never said in our article that mercury was present in the MMR jabs in the UK.
However - it is in two of the vaccines Hannah received and was used widely in US vaccines - including the earlier versions of the MMR.

In the US, anti-vaccers blame mercury for causing autism, and in the UK they blame the MMR.
Your headline and article were written in such a way as to lead readers to assume that the court had conceded that the MMR caused autism when it did no such thing. Since the MMR is the big bogeyman in this part of the world, thanks to some shoddy work by Wakefield, and years of credulous reporting by the media, you knew that emphasising the fact that she's had the MMR would catch people's attention here.

It might have helped you sell a few more newspapers, but at what cost to children's health?
Also, the MMR has never contained mercury, not even the earlier versions.
As for your assertions that there are no peer tested research on the issue of Mit dysfunction in autism sufferers. I suggest you refer to a study by Daniel Rosignol and Jeffrey Bradstreet. In their study you will find that some studies have found up to 43 per cent of autistic sufferers have mit dysfunctions and 35 per cent were found to have classical mit disease.

Thanks for the suggestion. I appreciate it when Senior Reporters with such an obvious aptitude for science offer advice on these matters.

I have read the article (pdf link). It has been expertly analysed by S.L.

The authors confuse mitochondrial dysfunction with mitochondrial disease, make unproven assumptions about (shudder) 'toxins' causation. They are DAN! practitioners whose preferred option for dealing with autism is the whacko DAN! protocol, an abusive, unregulated , experimental 'therapy' inflicted on many autistic children. It includes Chelation, yes really! That practise killed an autistic child, but these guys still promote it. They promote their own favourite, Hyperbaric oxygen therapy (HBOT). Reasonable people realise that this is crazy, outlandish and cruel.

Is that really who you go to for information about science?

You end your argument saying that just because Hannah has autism doesn't mean that she got it from the inoculations - why did the US Government pay out compensation then? We both know that unfortunately some children do get damaged by inoculations.

Seriously? You need to ask?
The court ruling stated;

In sum, DVIC has concluded that the facts of this case meet the statutory criteria for demonstrating that the vaccinations CHILD received on July 19, 2000, significantly aggravated an underlying mitochondrial disorder, which predisposed her to deficits in cellular energy metabolism, and manifested as a regressive encephalopathy with features of autism spectrum disorder. Therefore, respondent recommends that compensation be awarded to petitioners in accordance with 42 U.S.C. § 300aa-11(c)(1)(C)(ii).

The court paid compensation for the reasons given above, but not because she "got it [autism] from the inoculations."

We both agree that vaccinations are the best way of protecting the vast majority of children from the harm that these terrible disease can do to them.
However, we are a newspaper with a public duty to bring such issues to the forefront for debate.
This may not play very well with medics or the Government - but I'd like to point out that these same institutions have told people that medicines and other practices were safe when they blatantly were not (Thalidomide, vCJD etc - medical science moves all the time and new knowledge shifts our understanding).

You have a duty to report accurately on these issues, and not to misinform, either from ignorance or a deliberate mission to sensationalise and sell more papers.

And seriously, you're using the thalidomide story as an example of nasty scientists? This is one of the alternative medicine brigade's favourite lines! Surely you can do better than that. Drug testing practices have changed since the effects of thalidomide in pregnancy were discovered. Finding out what happens when drugs are used and publishing the results, that's what doctors and scientists do.

At this point in time we feel that entering into any further correspondence on this issue would not be to anyone's best interests.
Yours sincerely,

Phil Doherty
Senior Reporter
Sunday Sun

How honoured I am to have been written to by a Senior Reporter.

More what is probably the fullest and best explanation of this case and the attempted rebranding of autism, from 'mercury poisoning' to 'general toxins in vaccines and the atmosphere' to 'mito dysfunction' see this by the ever-excellent Orac.

18 Mar 2008

The Censure of Strangers

It was Paddy's Day, which I don't much care about any more to be honest, but the steam train in Downpatrick would be running for the first time this year, so we jumped in the car and drove down.

Since there was a parade in the town, we parked at the small station on the outskirts, and rode the train from there into town. We were just in time to board, paid our £20 return fare, (pretty steep for a pair of 6 minute journeys but it contributes to the upkeep and restoration of the museum) and took our seats for the journey. Duncan and Thomas stood by the open window all the way, blinking at the smoke a few times, and starting at the loud whistle.

In town, the parade was just about to start. Gordon stood with Thomas and Lady to watch, and I walked up and down the pavement behind the crowds with Duncan, stopping off to buy some sweets as soon as the packed shop cleared of customers. For part of the time, he rode on my back because I'd not been wise enough to take his buggy. He wasn't much interested in the parade, and was probably a bit stressed out by the loud speakers and crowds. After a while we retreated to a low stone wall set well back from the main throng, and there we happily waited for the others, while enjoying the now not-too-loud music and glimpses of parade components.

Then we made our error. The parade ended and like many, many others, we gathered on the small platform in the town railway station to take the train back to the country station where we had parked. We waited at one end of the platform where it was slightly less busy, but when the train pulled in, we were standing in front of a guards carriage that we couldn't board. Duncan was obviously panicked that we wouldn't get on the train and was desperately trying to push his way past the crowds waiting to get on the 3 small carriages, while I was just as desperately trying to hold him back and settle him down. Eventually we got on an already packed carriage. There was one seat and knowing Duncan wouldn't settle in an aisle seat anyway, I asked Gordon to sit there and take Thomas on his lap. A family of 4 was taking up a couple of seats (that would easily have sat 2 more people if they'd bunched up a bit) and I asked if they minded letting Duncan stand at the window between them to look out. Duncan was distressed by what had happened, and was shouting more than usual. On the way back, I was so very relieved that they journey was short. It was unpleasant. I tried my best to distract Duncan, stop him from shouting, and I had to prevent him getting past me to try to run up and down the aisle where a few other people were standing.

But what affected me more, was that which I can usually ignore; the censure of strangers. Always when we are out, I am aware that my almost 8 year old child is not performing to the accepted norms of a child his age. He often shouts and wails, gets upset when he doesn't get what he wants, or reacts in unexpected ways to situations. Just at the periphery of my senses, I am aware that some people are disapproving, via their looks and posture, but I refuse to acknowledge them. I do not look directly at them and deny them the opportunity to condemn us explicitly. I do not care what they think of my family, of my child.

Yesterday, as I was stopping Duncan from pushing past people on the platform and as he was shouting in the confined space of the train, it was harder to ignore, and a few times I let them catch my eye and show me what they think. I tried and mostly succeeded to maintain my usual composure, the stance that says, this might look bad to you, but we're just fine really, and anyway, screw you.

But I blamed Duncan. I was angry with him when he were walking to the car and I held his hand just too tight and told him off for having been a bad boy on the train. He said he was sorry, said "Don't call the police, Mummy is not angry, Mummy likes Duncan!"
I reassured him, at least a bit, and got in the car feeling thoroughly wrung out. As we drove home, I briefly cried quietly at the whole mixed up situation. I felt responsible for having put him in too difficult a situation, and I failed to handle it well enough.

The censure crossed the boundary on Friday too. We went with friends to W5, and were having a marvellous day. In the afternoon, Duncan was standing in front of his favourite bit, the camera with the blue screen where you can record yourself giving weather reports. I took my eye off him for about 2 minutes to talk with my friend's son about another exhibit just 2-3 metres from where Duncan stood. I was roused by a woman saying crossly, 'excuse me, is this your child' to see Duncan holding the arm of another slightly younger boy, in front of the camera. Duncan was trying to make him play with him, in what he intended as a rough and tumble way, but which had, not surprisingly been interpreted as fighting. The mum was angry, as I would if I though another child was trying to hurt my child. I immediately apologised and said 'he has autism, he was trying to play with him, I'm sorry, are you hurt?' (spoken to the boy). He said no, but that Duncan wanted to fight him. I assured them that he thought he could play with him like he does with his brother. The mum said, 'well OK, I thought he had something' the unspoken end of which was clearly, something wrong with him.

I wish I had prevented that whole thing. I talked to Duncan about it afterwards, trying to explain that he mustn't grab children; it can hurt them and make them sad. I must in future watch him more carefully when he's using that particular device, because he has watched the other children and they always bash into each other and jump about there, so he thinks that's what you're supposed to do.
I wish I hadn't immediately offered up the excuse, 'he has autism' but it was out before I'd stared to think properly.

I sometimes think that we have a little light around us, and outside that is the fog of people who don't know and don't care. Sometimes I suppose my light isn't bright enough and the fog spreads inside our protective bubble. What should I be more worried about, trying to change Duncan to make him more acceptable, or trying to give more people lights to hold with us? By that, I do not mean pity!!!

I do want Duncan to be the best he can. I would love to see him better able to control his impulses and the shouting. But a few more lights in the fog would be nice too.

13 Mar 2008

A day with autism

I have breakfast early with Gordon before he goes to work. As usual, Thomas is the first of the children to rise, but then, he's always first to fall asleep too. After I've opened their curtains and hassled them both a bit, Lady and Duncan manage to drag themselves out of bed at 8.30 or so. They have breakfast, then Thomas goes to play The Simpsons Wii game, which he desperately wants to finish; he's going well too. Lady heads upstairs to get dressed and tidy her room, then she has to feed her guinea pigs. Duncan settles in front of the PC to watch YouTube films (mostly Noddy) and to play Roller Coaster Tycoon. He's getting very good at it now, and designs all his own coasters rather than using the pre-set selections. While they're occupied, I tidy up and do a few chores. For the rest of the morning, the boys each do some reading with me, Lady works on some maths then does some work on the BBC schools website. In between, I check my mail, read a few blogs and the paper, and sort the laundry. I don't remember that there were any significant 'behaviours' (don't you just hate that word?) from any of us.

We have a quick snack before leaving the house just after 12 to go to the swimming pool, like every other Tuesday. I always try to park the car so there is no need to cross the car park to get to the leisure centre. Often when we arrive, the children in the school beside the car park, are in the playground on their lunch time break. Perhaps because of the noise they're making, Duncan may ask me to carry him. A few times he has been so distressed at this little transition, that I have had to carry him for a bit, but usually I can make a game out of racing to the door, and persuade him to walk or run.

Once inside the leisure centre, I pay for our swim, and the children look at the trophy cabinet, or if you're Duncan, at the jar of jelly beans beside the reception desk. Often, Duncan makes a lot of noise here, enjoying, perhaps, the echo effects of the large, sparse room. They all wait until I have paid, and as soon as I say lets go, they race down the stairs, full of enthusiasm.

Duncan wants to take the stairs going the other way to the fitness centre. He is upset and refusing to go the right way. I ask him if he wants to swim, and say that we need to get changed. He says 'no monsters' pointing to the changing rooms and I assure him that there are none. I playfully say that I scare the monsters away!
Another time, he was walking down these stairs, when he stopped beside a woman leaving, touched her carrier bag and, full of admiration, said it was a 'Disney bag.' She said no, and told him what shop it was from, and I said, 'it's a colourful bag, it's like a Disney bag.'

We always change in one of the 2 changing rooms for disabled users, allowing us to stay together in one room. In the pool, Duncan grabs a foam float, and walks up and down the shallow toddler pool, falling forward and drifting for a bit. He jumps in from the steps. He splashes and watches the patterns. He closes his eyes and jumps, laughs, shrieks and feels the water. He is loving it.

Thomas dons his orange goggles and swims with more determination than style, and Lady goes over water and under water, swimming, jumping and pirouetting. They mostly stay together, and I focus on watching Duncan, though he often sends me away if he wants more space.

Whenever there are other children around, I pay even more attention to what Duncan is doing. He is not usually interested in anyone else there, just myself and his siblings. He will walk right through a group of people if they're in his path. He doesn't bump or splash; he just carefully passes through. He doesn't have the same sense of personal distance that many have.

A boy, about 4 years old, is wearing Spider Man armbands. Duncan goes up and touches one. The boy's mum looks a bit annoyed. I am right beside Duncan, and say 'it's OK, he's wearing nice Spider Man armbands.' I'm not sure who I am talking to, the mum or Duncan. I try to smile at her but she avoids me.

When it's time to leave (because a school group comes in just after 1) Duncan takes my hand and we go to the changing room. Duncan shivers but will not take a shower. There's a shower in the disabled users' changing room, which is handy. I help Duncan get dressed while Lady and Thomas shower. On our way out, I return the locker key and the boys huddle round the jelly bean dispenser, fussing about who is going to turn the handle. The woman working on reception calls over to tell them they are very noisy. I am taken aback, and just look at her without saying anything. They get a few beans now, and I save some for when they're in the car.

Duncan decides to run to the car. I keep him in my sights. When he's getting close to the car park, I catch up with him and take his hand, fearful that he will run in front of a car. We all get safely into the car, everyone puts their own seat-belt on, and the remaining jelly beans are dispensed (after Thomas answers the sharing sum!)

As a treat, we stop off for some chips, and eat them in the car. Duncan prefers the thin, crispy ones. Then I am required to go to the other nearby town, where Duncan lost a home-made Noddy book the day before in the Tesco shop. He had been very distressed by this, and I'd promised we'd go back when it was open to look for it. I ask in the shop if it had happened to be found, but explained it was unlikely as it would look like litter to anyone else. (They weren't to know how much time and effort a little boy had put into those words and pictures.) The woman on the till, remembers us from the previous day, I wonder how?! But, as I expect, they don't have it and Duncan is upset. This leads to lots of scripting, of angry film characters. I've learnt that the worst thing I can do is to ask him not to shout. Instead, I engage with what he's saying. For example, if he's shouting about Cruella de Vil, I ask about her, and he changes tone to tell me that she is nasty and wants to catch the puppies.

I ask if he wants to visit the charity shop to look for a video, so we do. He chooses a few Disney films, and finds a Noddy book! How lucky was that! Thomas is very pleased to discover a Doctor Who 2006 album. Charity shops are great.

We go home then, and in the afternoon, I help Duncan to make a new Noddy book. He writes out the story as before;

Noddy's Toyland Adventures
Noddy and the warm scarf

Won day it was a chilet
One day it was chilly.

No longer


Stop stop Mr Plod.

I can understand his concern over the loss of his earlier manuscript!

Anyway, I think that's enough.

I wanted to write this out, as it was a typical day, involving time out and about. When Gordon asked me later how our day had been, I was able to tell him, as I usually do, that we'd had a great day and to tell him all the funny little things they'd said, and the adventures we'd had. This is what our lives are like. It's nice, most of the time, though we have our down times too.

So I get irritated when I read articles like, Living with autism - the harsh reality faced by one mother, in a local Irish newspaper. The mum interviewed has had unnecessary obstacles to deal with, due to inadequate state health and education facilities. That is shameful, and I would back their claim to much better services.

But, and there's always a but, why is it, that the needs of the autistic people who are no longer children, never seem to be mentioned? And why do these interviews with parents always focus on the negative?

His behaviour has become aggressive and inappropriate, he had become more withdrawn and the temper tantrums have escalated to the point where it’s proving almost impossible for his family to cope.

“I’ve never seen this behaviour in him before. He’s very aggressive... the temper tantrums leave him inconsolable... he hits me and behaves in a way that isn’t age appropriate. He wants to stay at home the whole time, it’s impossible to get him out of the house because of his rituals and routines,” said a devastated Ann.

As you can imagine, this places enormous strain on normal family life making many of the things we take for granted like shopping, family visits, holidays or simply leaving the house impossible for Ann and her family.

“It’s very hard to cope with and very embarrassing and stressful when it happens in public,” said Ann, agreeing that because he looks like a normal child, people can be very unforgiving.

It's not her son's fault that people are 'unforgiving' and the public need to be educated to tackle these disablist attitudes.

Keith Duffy, Ireland's own 'autism advocate' celebrity, is in the media again this week. He describes the day he realised his daughter was autistic; "Afterwards as I drove home I cried like I hadn't cried in years. That was the worst ever day of my life."

His wife joins in, "I felt utterly cheated and I was very angry," says Lisa Duffy. "I had this beautiful boy [son Jordan, 11] and then I had this beautiful girl and I felt that this cannot be happening to us."

That line reminded me of the 'attitude of entitlement' explored in this post by Club 166.

Mr Duffy's daughter, as he has told us before, had bucket loads of ABA treatment. I listened to the linked radio interview, and he says she was at an ABA school from 9 to 3.30 every day, when she was only two years old. She's now at a mainstream school, which they describe as a 'miracle'.

I am fed up with these descriptions, but they seem to be accepted, no...expected in discussions about autism. All these parents follow the script, and reveal, in 'emotional, honest and affecting detail', how awful their children are, or how hard they are to deal with. I'm no super hero, I'm an ordinary good enough mum, a bit lazy, but fascinated by these creatures temporarily in my care and enjoying their company enormously. I don't have any special qualities that make it easier for 'someone like me' (as I have, irritatingly, been told before) to cope with a non typical child. Basically, I decided to have children, so I just have to take what I get and make the best of it, and there is a lot of good to be had.

10 Mar 2008

"Court Links MMR to Autism"? Well, no actually...

Oh dear. The latest source of nonsense and misinformation has reached this side of the Atlantic Ocean.

I noticed this headline yesterday, from a UK local newspaper (Newcastle's Sunday Sun), "Court links MMR to autism."

This little piece of fiction is attributed to Phil Doherty;

FAMILIES who blamed the MMR jab for their children’s autism may be vindicated by a landmark court case. The Government has denied a link between the immunisation and autism, but a US court ruled that a girl did develop the condition after a series of jabs.

No it did not. The child in question, Hannah Poling, was found to have an extremely rare, genetically acquired metabolic disorder affecting her mitochondria.

The case was heard by the USA Division of Vaccine Injury Compensation, which requires a much lower standard of evidence than scientific or medical procedures would require. This is so as to make it easier for plaintiffs seeking damages in those rare cases when it is more likely than not that there is a negative reaction to a vaccine, no matter what the specific injury is. As Hannah's father himself says;

Proving the link legally is quite different than proving it scientifically, Poling says. "When you are talking about the courtroom vs. science, the burden of proof is different," Poling tells WebMD.

"We showed there was a plausible mechanism, we showed that an injury occurred shortly after her vaccination. Her growth curve went flat for months."

To prove something scientifically, rather than legally, he points out, only a 5% possibility (or one in 20 chance) that something happens by chance is allowable.

The case documents have been published on an anti-vaccination propaganda site.

The court ruling states;
In sum, DVIC has concluded that the facts of this case meet the statutory criteria for demonstrating that the vaccinations CHILD received on July 19, 2000, significantly aggravated an underlying mitochondrial disorder, which predisposed her to deficits in cellular energy metabolism, and manifested as a regressive encephalopathy with features of autism spectrum disorder.

These show that the court have agreed only that the vaccinations “significantly aggravated an underlying mitochondrial disorder” resulting in a brain disorder “with features of autism spectrum disorder.” That is not the same. Mr Phil Doherty, as stating she "did develop the condition [autism] after a series of jabs."

Moreover, the ruling mentions that she has "features of autism spectrum disorder." It is not confirmed anywhere that she has a diagnosis of autism, which requires that many different aspects of the diagnostic criteria, be met. Many people have "features" of autism but are not autistic.

To continue the Newcastle Sun article;

The vaccines reacted with a DNA defect in her body . . . a defect found in 38 per cent of those with autism.

Excuse me, but WTF?
Where on earth is he getting this figure from? This one, flawed sentence, is the only reference to Hannah's underlying mitochondrial disorder, in the whole dodgy article. I would exhort Mr Doherty to learn from the great university in his city, who have a helpful section on their website about mitochondrial disease. They might be able to help him with his statistics.

Ah well, lets take a look at the rest of this astonishing article;

The ruling was made last November but “sealed” — or not made public — until a compensation figure was agreed. However, details of it have been leaked to the Sunday Sun, and we understand there are a further 4900 similar cases to be heard in the US.

Oops! Who'd a thought, it's another mistake. This documents has not been leaked to just this newspaper as if they got some great scoop. The document has been published in several places online.

There are not 4900 similar cases to be heard. This family had been part of the Autism Omnibus hearings, a large cohort of people who feel that their children's autism had been caused in one of 3 ways; by the MMR vaccine, by the thiomersal that used to be in some vaccines, or via a combination of these two. However, the Pollings removed themselves from the Omnibus. They are not in any way, representative of the rest of those claimants. They were unable to show that thiomersal caused autism in their child, so they settled for the more likely scenario, vaccinations may have aggravated the pre-existing mito disease leading to brain damage and some autism like features.

I'd like to continue examining the Sun article;

It’s thought the disorder in the girl was triggered by the existence of mercury, used to make the vaccines more efficient.

I almost pity him.
The MMR has never included the mercury containing compound thiomersal, so the headline's way wrong. Also, thiomersal was used as a preservative in the vaccines.

Mercury has now been removed from child vaccines in the UK but many parents whose child developed autism when it was in use will feel the case backs up their suspicions.

UK parents have had their day in court. £15 million of tax payer's money went on Legal Aid fees to lawyers and "expert" witnesses, in an effort to link autism with vaccination. It failed, and the children received nothing.
This effort was also entirely unrelated to mercury.

Paul Shattock, regular speaker at the DAN! conferences is quoted;

“No one has ever claimed vaccines caused all autism, which can have many different routes, but around seven per cent of parents say their child was developing normally until they were immunised. “There is now a link to vindicate their view and this has been proven in court.”

One wonders if Mr Shattock is aware of the child's mito diesease.

There's a bit of a history of Andrew Wakefield, and his MMR baloney, then there's this;

After the ruling, the US Government said it wasn’t the vaccines which caused her autism, but a DNA defect in those who were inoculated which was triggered by the jab. According to research, just 0.2 per cent of the general population have the defect, compared to at least 38pc of autism patients.

I can't actually understand this. What DNA in "those who were innoculated" is he talking about? And again, there's the strange and obviously wrong figure of a condition (the mito disease) affecting just 0.2% of the general population but somehow rising to 38% of autisic people?!
Actually, although Mr Doherty hasn't been open enough to source these numbers, I am aware that they come from David "autism is mercury poisoning, no it's environmental toxicity, no it's general toxins in vaccines, no it a misdiagnosis for mito disease, no it's [fill the gaps as time progresses and new theories emerge]" Kirby. The figures have been masterfully deconstructed by SL on the Left Brain/Right Brian blog here.

Mt Doherty then quotes a Jabs ("a support group for vaccine-damaged children"; no, it's a frighteningly off base anti-vaccination propaganda group) who was thinks it is "vital the Department of Health put in a screening programme for this defect before children are given jabs."

Just to refer people back to Newcastle University's Mitochondrial Disease site, where the process for diagnosing this disease is outlined, and involves analysis of samples of blood, urine, cerebrospinal fluid, (via a lumbar puncture) and muscle (via a muscle biopsy). The condition is rare, and can be very serious, even fatal. It is a whole lot more worrisome than autism, and more research is required to understand it and help the people affected.

Finally there is a short injection of sense in a quote from a Department of Health spokesperson;

MMR is the safest and most effective way of protecting children from measles, mumps and rubella. This issue relates to one child with an extremely rare metabolic genetic condition. In the US, rates of autism have continued to rise since mercury was removed from its vaccines. This case has no relevance therefore for vaccination in the UK.

Inaccurate and irresponsible reporting such as this, is frightening more parents into forgoing vaccinations for their children. Already in the UK, the number of measles cases has risen 30% and at least one child has died of this disease.

For more, and better explanations of the Poling vaccine injury case, see these posts; (the start of this list has been shamelessly nicked from Orac.)
  1. David Kirby and the government "concession that vaccines cause autism": The incredible shrinking causation claim
  2. The new strategy of the antivaccination movement: Autism is a "misdiagnosis" for mitochondrial disease
  3. Antivaccination propaganda about the Poling case: A Saturday morning link roundup
  4. Has the Government Conceded Vaccines Cause Autism? by Steve Novella
  5. Autism payout reignites vaccine controversy (New Scientist article)
  6. Vaccines, Autism and the Concession
  7. This Whole Mito Thing (My Final Vent...Hopefully!)
  8. Something is beginning to smell...
  9. Recent Vaccine-Autism Award Not the First by Arthur Allen
  10. It's Not Our Fault!!
  11. "Evidence of Mitochondrial Dysfunction In Autism
  12. Autism & Mitochondrial Disease
  13. Where's Her Mito Pin???
  14. Strange--Parents Don't Mention Mito!
  15. Chain of Events: The "Concession Case,"
  16. And It Begins...
  17. David Kirby Asks Now What?? I'll Tell You...
  18. Metaphors, Mitochondria, and the MMR
  19. The NYTimes misportrays the autism “debate”
  20. About This Autism Debate
  21. The Case of Hannah Poling
  22. What the Government Said and What It Didn't
  23. Autism, Mito, Vaccine Court, and the Polings
  24. Concessions, the post where a picture says it all.

6 Mar 2008

Somethings help, some not so much.

I've written here before no doubt, about the time around Duncan's diagnosis. When he was almost two, I thought he was just at the far end of the range for what was 'normal' in children starting to speak whereas Lady had been at the high end. I knew he was smart; he could figure stuff out, especially it it involved him eating something sweet. He was very fast to crawl and walk and he smiled at the normal age, though not as often as his sister. But he mostly ignored us, unless he wanted something. He didn't respond to his name, but he looked round if you said something like 'Thomas video.' He couldn't point to any of his body parts, he didn't seem interested in most of the silly games I'd been able to engage Lady in. I wasn't too worried, and told myself he was just developing at his own pace.

But anyway, after a few months when I couldn't really see much change in his abilities, well except his amazing money-like abilities in climbing and balancing, I was concerned and looked up the word autism on Google. This was a word that had been hovering in my mind for a while. After 10 minutes online, I knew this was it.

We started the process of doctor visits, speech therapy, assessments and services which wasn't to be honest, all that onerous. I was upset and worried about it all. I didn't know what would become of my precious and at times, baffling boy. I still don't, but I don't know what will become of the other two either.

Oh how I wish that something like the Autism Hub existed then. But it didn't and I had to work through the different emotions and reactions and options available. I could rail against the diagnosis, resolving to 'fix' my son and find the reasons why we were lumbered with this fate. Or I could opt to accept it, and resolve instead to raise my child and teach him in a way that best suits him, to find out more about autism from the real experts, people who themselves are autistic, and do a little to work against the extreme prejudice and ignorance around disability, especially autism.

But while it was all new and I wasn't sure what to do, I went to a support group for disabled children and their families. I felt a bit out of place, like most people do when they're the new person meeting a group who all seem to know each other well. The children there had various disabilities and. The mums appeared so competent and calm. One sorted her daughters feeding tube out as easily as I might have tied my child's shoe laces. Another joked that her son thought he was the son of god, given her reaction when the doctors informed her he had Down Syndrome, 'Oh Jesus!'

My child looked like he was just an ordinary two year old, albeit a naughty and destructive one whose mum had to stick very close and pull him down from the shelves more than once, and who could whip up a tantrum that left other toddlers in the dust.

I met a woman I knew from Lady's school. Her son had cerebral palsy and she was surprised to see me there. She'd not known me as the mother of a disabled child, but then, neither had I. She asked what disability my child had. While I told her, she watched Duncan for a while and then said, 'he seems very mild to me. I have a friend and her son is really autistic. He just sits around all day doing (something or other unusual but I don't remember what).' But then she brightened up and said, 'my friend's son got much worse as he got older!'
Wow, thanks missus. You really made my day there.

Well I persevered with the group, and it was one of the best things I did to help me in those early days. It's something I'd love to see here, and it's one of my secret dreams to help set up something similar in this region.

But when I think back on that woman's insensitive remark I can now smile because Duncan has developed to be this funny, talented, intriguing, exasperating, loving and clever boy.

I'd like to know from any of the parents of disabled children reading this, what was the most helpful thing to you in those early days, and what was the dumbest thing you encountered?

5 Mar 2008

An ode to Lady

My daughter is nine years old. She is the most considerate and thoughtful of children. She adores her brothers, though she gets fed up with them when they bug her at times. It seems that Thomas causes this reaction more than Duncan, but mainly because they spend so much time together.

As the oldest of three, and the big sister to a disabled brother, she has more responsibilities on her strong, young shoulders than many children. I rely on her to help me gather the clan to go out places, find the right shoes, fetch the car keys, keep an eye on Thomas while I concentrate on Duncan, that sort of thing.

She has had a deep, intense bond with Duncan, ever since he was born and she was just under two years old and unable to pronounce his name properly. She has always just accepted him as he is. She has explained him simply to many of her friends who have come around and been puzzled at the odd behaviour of her little brother. She has never exhibited embarrassment or unease around him, nor has she taken on any aspects of the "poor deprived sibling" mantle, often mentioned in discussions about disabled children.

Her views on her brother's autism were published on the NAS "Think differently about autism" site, though that section has since been removed. As far as I could tell, hers was one of the few "insights into autism" which wasn't entirely negative. It was however, entirely honest.

As well as straightforwardly explaining his differences to her friends, Lady has always been of so much help whenever the children have been looked after by other people. Our main babysitters have been my sister, dad and Gordon's mum. Each time, Lady has been on hand to offer advice and to interpret for her brother. This weekend, while I was in Dublin, Gordon's mum looked after the children for the afternoon and evening until Gordon returned from a day-trip abroad. Lady sorted out all Duncan's meals for him, and helped settle him at night. He opted to sleep at the bottom of her bed like a little puppy, wanting to be close to his wonderful big sister.

I'm so proud of that girl.

Here's what she wrote about Mother's Day;

It was Mothers day yesterday and it was fun. My Mum's name is Sharon and she is thirty six and is very funny. If my room is not tidy she will go mad. When I was five I'd think she was going to morf [morph] into a monster but she didn't. I love to go shopping with my Mum and I love to play with her too. On Mothers day I gave my Mum a card which was home made and I gave her some flowers. I will sometimes give her some chocolate or some fudge. I love my Mum a lot.

3 Mar 2008

I'd just like to thank...

What follows is my acceptance speech, the director's cut.

I would like to thank;
  • My children, who are the most wonderful 3 juvenile human beings on earth and without whom I might still be a physicist (gulp) instead of spending my days with them and loving it.
  • The Blog Awards organiser, Damien Mulley and all his minions, for their splendid work.
  • The judges; man they must have waded through some rough material.
  • The sponsor of my award, iQ Content (I'm hoping that's the right link), and the sponsors of the other prizes, Hosting365 and Bubble Brothers for the champagne and Moviestar.ie for the DVD player.
  • All my bog buddies, the people who read this and the special, delightful people who comment.
  • The cranks, quacks and the credulous media who report them, for giving me lots of material for ranty posts. I'd happily forgo this aspect of blogging though for more of the scarce positive stories.
  • The wonderful autistic writers from whom I've learned so much. They're on my sidebar.
  • Debby for getting me started with this blogginess.
  • Gordon for putting up with my laptop time.
  • Gordon's mum for babysitting on Saturday night, and Miche for being the best possible company at the bloggies.
  • Alan for making the lovely award pic taking pride of place on my sidebar.

That's it. It's more coherent than the actual speech. The other attendees can be glad I didn't bore the bogies out of them with all this at the time though.

And just for fun, there are some photos here and here.

2 Mar 2008


I won at the Irish Blog Awards! Yes!
This thing you're now reading, is officially the Best Specialist Blog in the Irish blogosphere. Don't ask me what I'm a specialist in...
I'm guessing it's something to do with the autism stuff. But anyway, I'm a winner.

I'm just going to take a minute to gloat.

That's better.

SO last night, the Irish Blog Awards were held in a Dublin hotel. I went down from Belfast on the train with my cousin Miche. Though I really didn't expect to win, I was sure it'd be a good night out and a chance to meet a few cyber buddies.

It was very well organised, and we were pleased to see that proceeds from the entrance charge went to an epilepsy charity. We took our seats feeling a bit out of place at first. It seemed that many other people there already knew one another. I wondered how I'd ever know who was who, not knowing what anyone looks like. The only way to tell was to gawk closely at the name badges perched on chests and since the place was packed with close to 400 people, that wasn't going to be easy.

It was all hosted by a proper radio DJ and blogger, Rick O'Shea, and each category was introduced by George W. Bush in a series of witty video things. Each winner received a really nice cut glass trophy, champagne and a DVD player. Not a bad haul of booty! Eventually I got chatting to a few people sitting near me, 73Man and the Dublin Community bloggers, and got them to promise to cheer for my blog when it was called out, as I was a bit worried that no-one there would know it, leaving only me and Miche clapping. I'm shallow enough to worry about such things. But when my time came, they did me proud, and amazingly and fantastically, this actually won.

I gave a very garbled speech, thanking my children for providing me with lots of material together with the media for writing so much rubbish about autism. I don't think it came out the way I meant it to... I forgot to pose for my photo with the sponsor of my category, iQ Content, and had to go back up. Ah well.

At least then, the few people there who do read my ramblings knew what I look like, and Heidi and Bock were both nice enough to come say hello and be ever so lovely about my win.

I have to say, as a person who has never won anything, never been singled out for particular praise, winning an award for writing this, is such a wonderful, delightful thing. I love blogging, especially so today!

As the night went on, I got chatting to more bloggers and everyone was so lovely and enthusiastic. I got to meet Hangar Queen, and Maman Poulet, and I was able to question Twenty Major about his naughty language and thank the organiser Damien Mulley, for going to so much effort to make us northerners feel at home, (the stage was decked in red, white and blue bunting, and looked like parts of Belfast in July, though the intended effect was a USA presidential rally).

Miche and me sat with the Dublin blogger crowd, a smart move as it turned out, as they were great company. It was especially nice to hang out with Red Mum who, it turns out, is herself a Belfast woman. We even had a bit of a dance since it all ended with a disco.

In the end, I staggered both proudly and a wee bit woozily to bed.

(The full list of Blog Award winners can be seen here.)