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.
31 Mar 2008
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;
The newspaper addressed some of the points my letter raised, but it began with a straw-man argument;
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".
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.)
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:
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.
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.
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.
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?
Seriously? You need to ask?
The court ruling stated;
The court paid compensation for the reasons given above, but not because she "got it [autism] from the inoculations."
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.
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.
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.
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
Jorafes!
Giraffes!
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?
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.
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
Jorafes!
Giraffes!
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;
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;
The case documents have been published on an anti-vaccination propaganda site.
www.ageofautism.com/2008/02/full-text-autis.html
The court ruling states;
To continue the Newcastle Sun article;
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;
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;
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.
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;
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;
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;
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.)
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.
www.ageofautism.com/2008/02/full-text-autis.html
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.)
- David Kirby and the government "concession that vaccines cause autism": The incredible shrinking causation claim
- The new strategy of the antivaccination movement: Autism is a "misdiagnosis" for mitochondrial disease
- Antivaccination propaganda about the Poling case: A Saturday morning link roundup
- Has the Government Conceded Vaccines Cause Autism? by Steve Novella
- Autism payout reignites vaccine controversy (New Scientist article)
- Vaccines, Autism and the Concession
- This Whole Mito Thing (My Final Vent...Hopefully!)
- Something is beginning to smell...
- Recent Vaccine-Autism Award Not the First by Arthur Allen
- It's Not Our Fault!!
- "Evidence of Mitochondrial Dysfunction In Autism
- Autism & Mitochondrial Disease
- Where's Her Mito Pin???
- Strange--Parents Don't Mention Mito!
- Chain of Events: The "Concession Case,"
- And It Begins...
- David Kirby Asks Now What?? I'll Tell You...
- Metaphors, Mitochondria, and the MMR
- The NYTimes misportrays the autism “debate”
- About This Autism Debate
- The Case of Hannah Poling
- What the Government Said and What It Didn't
- Autism, Mito, Vaccine Court, and the Polings
- 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?
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;
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;
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.
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!
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.)
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.)
29 Feb 2008
Mercury and autism; What link?!
An Irish anti-vaccination spokesperson has popped up in the letters page of the Irish Independent. He's hoping to cash in on their recent focus on autism to promote his own crank theories:
I dashed off a quick comment, working to keep it less than 1000 characters as mandated by their software.
1. Autistic people are neither 'brain damaged' nor necessarily, 'slow learners.'
2. The evidence shows that actual autism rates are not increasing.
3. The diagnostic criteria for autism were widened between 1976 and 2004, meaning more people are eligible for the autism label.
4. The proponents of a vaccine link to autism have no evidence to back this claim. Many large scientific studies have failed to make such a connection. The 'Archives of Disease in Childhood' Feb 2008 paper by Baird et al shows no evidence of an MMR-autism link.
5. Thiomersal is no longer used in childhood vaccines in Ireland, or in the USA. It has never been used in the MMR vaccine.
6. The ethyl mercury in thiomersal, is quickly excreted. (see Paediatrics, Feb 2008)
7. A 9 year old email of questionable veracity is of no relevance to these issues.
8. Mercury poisoning bears no resemblance to autism.
9. More children are getting preventable infectious diseases as vaccination rates decrease. Sadly, some die.
If space had allowed, I'm sure I'm sure I could have come up with more. But perhaps it's best I didn't get the opportunity to express what I really think of Mr Carroll's correspondence. It wouldn't have been too lady-like.
In respect of the report that certain TDs are demanding special education classes for autistic children, I recall that some years ago, the Irish Independent reported that the National Adult Literacy Agency claimed that more that 400,000 people in this country had some level of difficulty in reading and writing and that the problem is causing an amount of alarm.Included were an increasing number of brain-damaged autistic children euphemistically classed as "slow learners". Autism is still on the increase worldwide, and nobody is asking why. We should be concerned about prevention and not education and we no longer can ignore the pharmaceutical link to autism and other infant disorders since the dangers of mercury in infant vaccines
have been known for decades. In the US, where vaccination is compulsory, autism is now an epidemic with an increase of 1,354pc and $90bn (€59.4bn) annual health care costs.In 1976, one in 10,000 children were diagnosed with autism. By the year 2004 the figure was an one in 166.
Mercury is extremely dangerous to vulnerable infants. We need to bear in mind that when the Hep B and HiB vaccines were added to the recommended schedule of infant jabs the cumulative amount of mercury to which infants were exposed nearly tripled.
At the 2004 Autism One Conference in Chicago, Jeff Sell, the personal injury trial attorney on behalf of vaccine injury litigants, produced a copy of an email written on June 29, 1999 by a former scientist for the US Food and Drug Administration (FDA), Peter Patriarca, which stated:
"I will raise questions about FDA being 'asleep at the switch' for decades, by allowing a potentially hazardous compound to remain in many infant vaccines, and not forcing vaccine firms to exclude it from new products. I will also raise questions about various advisory bodies' aggressive recommendations for use.
"We must keep in mind that the dose of ethyl mercury was not generated by 'rocket science'; conversion of the percentage of Thimerosal to actual micrograms of mercury involves 9th-grade algebra."
PATRICK J CARROLL
I dashed off a quick comment, working to keep it less than 1000 characters as mandated by their software.
1. Autistic people are neither 'brain damaged' nor necessarily, 'slow learners.'
2. The evidence shows that actual autism rates are not increasing.
3. The diagnostic criteria for autism were widened between 1976 and 2004, meaning more people are eligible for the autism label.
4. The proponents of a vaccine link to autism have no evidence to back this claim. Many large scientific studies have failed to make such a connection. The 'Archives of Disease in Childhood' Feb 2008 paper by Baird et al shows no evidence of an MMR-autism link.
5. Thiomersal is no longer used in childhood vaccines in Ireland, or in the USA. It has never been used in the MMR vaccine.
6. The ethyl mercury in thiomersal, is quickly excreted. (see Paediatrics, Feb 2008)
7. A 9 year old email of questionable veracity is of no relevance to these issues.
8. Mercury poisoning bears no resemblance to autism.
9. More children are getting preventable infectious diseases as vaccination rates decrease. Sadly, some die.
If space had allowed, I'm sure I'm sure I could have come up with more. But perhaps it's best I didn't get the opportunity to express what I really think of Mr Carroll's correspondence. It wouldn't have been too lady-like.
Awards
Gordon's awards ceremony took place last night. The place was packed, and it was only when we were there that I realised how prestigious it all was. Our < sarcasm> beloved leader < /sarcasm> the First Minister and the Health Minister were in the audience. Gordon was one of only 3 people nominated in his category and I think there were 8 categories. So he was in among the elite in a crowd of about 300. He didn't get the award, not that he was much fussed. But we enjoyed the night out, more so since we're tight and it was free. The awards part wasn't too painful, only those introducing the categories gave a speech and these were succinct and informative, well apart from the woman who droned on about pain and the other who blethered about the danger of BMIs higher than 29, to an audience where at least half fit the bill. I mean, they're important topics but make your point and get off the stage.
Anyway, I was totally proud of Gordon for this local recognition after moving here only 3 years ago and starting his research efforts from scratch.
Somehow I think the Irish Bloggers bash will be a bit less stuffy and a bit more fun. There will hardly be any undercover armed bodyguards there, but you never know who any blogger really is and for all I know, there might be someone there who's a really important person. I'm heading down to Dublin tomorrow with my cousin Miche (hello woman!) and if I don't win, she's liable to tear a few strips of whoever beats me! We're staying in the hotel where the award ceremony is taking place, making it much easier to proudly stride/slink in embarrassment/stagger woozily away at the end of the night. We won't know a being there, well not at the start of the night anyway. So anyone reading this who'll be going, if you see 2 northern women looking a bit lost, ask us to join your gang.
Anyway, I was totally proud of Gordon for this local recognition after moving here only 3 years ago and starting his research efforts from scratch.
Somehow I think the Irish Bloggers bash will be a bit less stuffy and a bit more fun. There will hardly be any undercover armed bodyguards there, but you never know who any blogger really is and for all I know, there might be someone there who's a really important person. I'm heading down to Dublin tomorrow with my cousin Miche (hello woman!) and if I don't win, she's liable to tear a few strips of whoever beats me! We're staying in the hotel where the award ceremony is taking place, making it much easier to proudly stride/slink in embarrassment/stagger woozily away at the end of the night. We won't know a being there, well not at the start of the night anyway. So anyone reading this who'll be going, if you see 2 northern women looking a bit lost, ask us to join your gang.
27 Feb 2008
Wired on autism
Who'd have guessed, a (mostly) accurate, informative article about autism in the media!
The article in Wired, features Amanda Baggs and Michelle Dawson, so I shouldn't be too surprised; they're both incredible, knowledgeable and smart women who have done much to challenge the many myths about autism.
The first interview in the article is with Amanda, and describes how the increasing popularity of her YouTube video, caught the attention of the media;
How anyone could spout that "trapped" nonsense, especially after watching Amanda's videos, and reading just about anything she has written, is just astonishing, but somehow, some people manage it.
The journalist tells how he got the opinion of an (unfortunately unnamed) "world leading authority on autism" to view the video, and he commented that such a severely autistic person as she couldn't possibly have produced it unaided.
I think someone needs to read and learn some more.
The technological advancements over the past few years have benefited autistic people, perhaps even more than they have benefited everyone else;
Personally, the community available via the internet, has been invaluable to me, as a parent seeking advice, knowledge and like-minded people.
Amanda describes the growing autistic advocacy movement;
Oh I love it! How much better my son's future will be thanks to the hard work, research and activism of people like Amanda, Michelle, Ed, Autism Diva, Joel, Larry and so many others.
The new approach to autism research by some neuroscientists is described;
This is a much more interesting question.
Neuroscientist Thomas Zeffiro is quoted as saying;
The origins of the categorisation of autism by Kanner and Asperger are described, as well as their views on autistic intelligence;
Why were the observations of the first two autism researchers on the matter of intelligence, almost ignored?
Also featured in the Wired article, is Laurent Mottron, a psychiatrist working in Montreal and who said;
I found this section most interesting;
The article continues with a brief profile of Michelle Dawson, and her unconventional route into autism research, and her recent first authorship of a study called "The Level and Nature of Autistic Intelligence." This work compared two types of test used to assess intelligence and:
As such, it must be recognised that this is an inappropriate tool to use with people who have difficulty with verbal communication. Dawson is paraphrased as saying;
Indeed. It can be hoped that other autism researchers follow her lead, and that it becomes common practice to use the obviously more suitable Raven test in the future.
Obviously, the usual journalistic balance is achieved by quoting those who disagree with this direction;
Volkmar's remark is nonsensical and misguided. No-one is suggesting such a thing. More accurate research can only benefit autistic people. Knowing how my son's brain works, will help me know how to target his education better, to suit his skills and difficulties. Knowing that many, or most autistic people are much more intelligent than supposed, means there is a moral imperative to help them to find better ways of communicating, since that is usually the primary difficulty. How much effort has really been spent on trying to teach the autistic people languishing in group homes, how to type, use picture symbols, sign language, or other forms of augmentative communication. I would say this work is the absolute opposite of what Volkmar claims; it's more like, "Here, have a wheelchair, you can become mobile."
The Wired article continues;
This is great news and can only benefit people like my son.
(Amanda would like people to know that "treated with respect" was a quote from D.J. Savarese, and another misleading part of the interview is mentioned in her latest blog post.)
The article in Wired, features Amanda Baggs and Michelle Dawson, so I shouldn't be too surprised; they're both incredible, knowledgeable and smart women who have done much to challenge the many myths about autism.
The first interview in the article is with Amanda, and describes how the increasing popularity of her YouTube video, caught the attention of the media;
By 300,000, the TV people came calling, hearts warmed by the story of a young woman's fiery spirit and the rare glimpse into what has long been regarded as the solitary imprisonment of the autistic mind. "I've said a million times that I'm not trapped in my own world,'" Baggs says. "Yet what do most of these news stories lead with? Saying exactly that."
(my emphasis)
How anyone could spout that "trapped" nonsense, especially after watching Amanda's videos, and reading just about anything she has written, is just astonishing, but somehow, some people manage it.
The journalist tells how he got the opinion of an (unfortunately unnamed) "world leading authority on autism" to view the video, and he commented that such a severely autistic person as she couldn't possibly have produced it unaided.
I think someone needs to read and learn some more.
The technological advancements over the past few years have benefited autistic people, perhaps even more than they have benefited everyone else;
Baggs is part of an increasingly visible and highly networked community of autistics. Over the past decade, this group has benefited enormously from the Internet as well as innovations like type-to-speech software. Baggs may never have considered herself trapped in her own world, but thanks to technology, she can communicate with the same speed and specificity as someone using spoken language.
Personally, the community available via the internet, has been invaluable to me, as a parent seeking advice, knowledge and like-minded people.
Amanda describes the growing autistic advocacy movement;
"I remember in '99," she says, "seeing a number of gay pride Web sites. I envied how many there were and wished there was something like that for autism. Now there is." The message: We're here. We're weird. Get used to it.
(my emphasis)
Oh I love it! How much better my son's future will be thanks to the hard work, research and activism of people like Amanda, Michelle, Ed, Autism Diva, Joel, Larry and so many others.
The new approach to autism research by some neuroscientists is described;
[Autism] shouldn't be thought of as a disease to be eradicated. It may be that the autistic brain is not defective but simply different — an example of the variety of human development. These researchers assert that the focus on finding a cure for autism — the disease model — has kept science from asking fundamental questions about how autistic brains function.
This is a much more interesting question.
Neuroscientist Thomas Zeffiro is quoted as saying;
If Amanda Baggs had walked into my clinic five years ago, I would have said she was a low-functioning autistic with significant cognitive impairment. And I would have been totally wrong.
The origins of the categorisation of autism by Kanner and Asperger are described, as well as their views on autistic intelligence;
Kanner spoke of an array of mental skills, "islets of ability" — vocabulary, memory, and problem-solving that "bespeak good intelligence." Asperger, too, was struck by "a particular originality of thought and experience." Yet over the years, those islets attracted scientific interest only when they were amazing — savant-level capabilities in areas such as music, mathematics, and drawing. For the millions of people with autism who weren't savants, the general view was that their condition was tragic, their brainpower lacking.and later
In 1943, Kanner wrote that while many of the children he examined "were at one time or another looked upon as feebleminded, they are all unquestionably endowed with good cognitive potentialities."
Why were the observations of the first two autism researchers on the matter of intelligence, almost ignored?
Also featured in the Wired article, is Laurent Mottron, a psychiatrist working in Montreal and who said;
"I wanted to go as far as I could to show that their perception — their brains — are totally different." Not damaged. Not dysfunctional. Just different.Mottron has focused on the enhanced visual, spatial, and auditory skills of many autistic people when compared to neurotypicals, whereas most other researchers ignore what they term these "anomalous peaks of ability," to focus on the better funded questions like what is wrong, what causes it and how do we cure it.
I found this section most interesting;
Mottron draws a parallel with homosexuality. Until 1974, psychiatry's bible, the Diagnostic and Statistical Manual of Mental Disorders, described being gay as a mental illness. Someday, Mottron says, we'll look back on today's ideas about autism with the same sense of shame that we now feel when talking about psychology's pre-1974 views on sexuality. "We want to break the idea that autism should definitely be suppressed," he says.
The article continues with a brief profile of Michelle Dawson, and her unconventional route into autism research, and her recent first authorship of a study called "The Level and Nature of Autistic Intelligence." This work compared two types of test used to assess intelligence and:
suggests the Wechsler scores give only a glimpse of the autistics' intelligence, whereas the Raven — the gold standard of fluid intelligence testing — reveals the true, or at least truer, level of general intelligence.The Wechsler Scale is described as one which;
assesses crystallized skills like acquired vocabulary, making correct change, or knowing that milk goes in the fridge and cereal in the cupboard — learned information that most people intuit or recall almost automatically.
As such, it must be recognised that this is an inappropriate tool to use with people who have difficulty with verbal communication. Dawson is paraphrased as saying;
you wouldn't give a blind person a test heavily dependent on vision and interpret their poor score as an accurate measure of intelligence.
Indeed. It can be hoped that other autism researchers follow her lead, and that it becomes common practice to use the obviously more suitable Raven test in the future.
Obviously, the usual journalistic balance is achieved by quoting those who disagree with this direction;
In the vast majority of journal articles, autism is referred to as a disorder, and the majority of neuro-psychiatric experts will tell you that the description fits — something is wrong with the autistic brain. UCSF's Merzenich, who agrees that conventional intelligence-testing tools are misleading, still doesn't think the difference model makes sense. Many autistics are probably smarter than we think, he says. But there's little question that more severe autism is characterized by what Merzenich terms "grossly abnormal" brain development that can lead to a "catastrophic end state." Denying this reality, he says, is misguided. Yale's Volkmar likens it to telling a physically disabled person: "You don't need a wheelchair. Walk!"
Volkmar's remark is nonsensical and misguided. No-one is suggesting such a thing. More accurate research can only benefit autistic people. Knowing how my son's brain works, will help me know how to target his education better, to suit his skills and difficulties. Knowing that many, or most autistic people are much more intelligent than supposed, means there is a moral imperative to help them to find better ways of communicating, since that is usually the primary difficulty. How much effort has really been spent on trying to teach the autistic people languishing in group homes, how to type, use picture symbols, sign language, or other forms of augmentative communication. I would say this work is the absolute opposite of what Volkmar claims; it's more like, "Here, have a wheelchair, you can become mobile."
The Wired article continues;
Should autism be treated? Yes, says Baggs, it should be treated with respect. "People aren't interested in us functioning with the brains we have," she says, because autism is considered to be outside the range of normal variability. "I don't fit the stereotype of autism. But who does?" she asks, hammering especially hard on the keyboard. "The definition of autism is so fluid and changing every few years." What's exciting, she says, is that Mottron and other scientists have "found universal strengths where others usually look for universal deficits." Neuro-cognitive science, she says, is finally catching up to what she and many other adults with autism have been saying all along.
This is great news and can only benefit people like my son.
(Amanda would like people to know that "treated with respect" was a quote from D.J. Savarese, and another misleading part of the interview is mentioned in her latest blog post.)
25 Feb 2008
His own vision
On Sunday morning, we went to the animal rescue centre to walk a dog, something we've done a few times now and which Lady in particular, just loves to do. Duncan wasn't in the mood. He was irritable and insisted on being carried, so I had to walk him back to the car while Gordon carried on with the other 2. It probably didn't help that he was dressed in shorts. He had utterly refused to wear long trousers. He's going through a Noddy phase, so besides the shorts he had on an orange top and a Santa hat; the closest approximation to a Noddy hat in the dressing up box.
So he sat in the car listening to High School Musical songs on my MP3 player. He likes Get'cha Head in the Game best. I think he's going to be using this device more and more, as a nice way of blocking out excess information and keeping, (altie term alert) centred.
He didn't want to get out of the car when we got home, so I stayed with him for a while and he let me know how angry he was with all his 'baddest' characters. I reminded him that I'm Kala (the kind gorilla who rescued baby Tarzan in the Disney film, a role he assigned to me) and I sang "You'll be in my heart" to him. He climbed into my lap and calmed right down, ready to go back inside to play Roller Coaster Tycoon 3.
Later Lady and Thomas and I walked to the beach to attend a dog show, Scrufts, especially for mixed breed dogs. It was a cold but clear day, and the green in front of the sea is such a pleasant spot. Hundreds of gorgeous dogs were around, and no dirt! See, dog owners can do right. The compere was pantomime dame type character whom I've never seen before, but apparently is a local celebrity.
We enjoyed the sheep dog display, with ducks. It was good until some ejit's unleashed mutt ran into the ring scattering the ducks and trying to pin one down.
Anyway we were cold and hungry so we bought ice-creams (naturally) and went home.
In the afternoon, I was helping Duncan with his RCT3 game. I noticed that he had laid a load of paths to make the words "Disney home video"! He had placed a water ride next to it, this apparently was the sea for the Little Mermaid. He had placed entertainers on the letter paths, all dressed up and representing, to him, various Little Mermaid characters.
He is such an independent thinker. The same trait that leads to difficulty, when he doesn't get his way with things he wants to have and do, also leads to these ideas and ways of adapting games, toys, furniture or whatever to fit his vision. He knows exactly what he wants to achieve and how, and it bugs him when the rest of us, who have the power sometimes, don't just do what he wants us to!
Lastly, I was amused and pleased at his revelation last night after he'd been to the loo. "Thin chips," he said, referencing the frozen fries he'd eaten earlier, "turn into poo...in the stomach."
This is good. He was saying it mostly to himself, but it shows me, what I may have underestimated, that he is continuing to make links, take in information and learn about the wider world.
I credit Lady for having imparted this crucial information. They have a "lift the flap" human body book and greatly enjoy the page on digestion. When I told her about Duncan's announcement, she laughed and said it was because she'd shown him the book and its page about the "regime of eating a pear." I think she meant "process" but at least she's trying out her extended vocabulary!
So he sat in the car listening to High School Musical songs on my MP3 player. He likes Get'cha Head in the Game best. I think he's going to be using this device more and more, as a nice way of blocking out excess information and keeping, (altie term alert) centred.
He didn't want to get out of the car when we got home, so I stayed with him for a while and he let me know how angry he was with all his 'baddest' characters. I reminded him that I'm Kala (the kind gorilla who rescued baby Tarzan in the Disney film, a role he assigned to me) and I sang "You'll be in my heart" to him. He climbed into my lap and calmed right down, ready to go back inside to play Roller Coaster Tycoon 3.
Later Lady and Thomas and I walked to the beach to attend a dog show, Scrufts, especially for mixed breed dogs. It was a cold but clear day, and the green in front of the sea is such a pleasant spot. Hundreds of gorgeous dogs were around, and no dirt! See, dog owners can do right. The compere was pantomime dame type character whom I've never seen before, but apparently is a local celebrity.
We enjoyed the sheep dog display, with ducks. It was good until some ejit's unleashed mutt ran into the ring scattering the ducks and trying to pin one down.
Anyway we were cold and hungry so we bought ice-creams (naturally) and went home.
In the afternoon, I was helping Duncan with his RCT3 game. I noticed that he had laid a load of paths to make the words "Disney home video"! He had placed a water ride next to it, this apparently was the sea for the Little Mermaid. He had placed entertainers on the letter paths, all dressed up and representing, to him, various Little Mermaid characters.
He is such an independent thinker. The same trait that leads to difficulty, when he doesn't get his way with things he wants to have and do, also leads to these ideas and ways of adapting games, toys, furniture or whatever to fit his vision. He knows exactly what he wants to achieve and how, and it bugs him when the rest of us, who have the power sometimes, don't just do what he wants us to!
Lastly, I was amused and pleased at his revelation last night after he'd been to the loo. "Thin chips," he said, referencing the frozen fries he'd eaten earlier, "turn into poo...in the stomach."
This is good. He was saying it mostly to himself, but it shows me, what I may have underestimated, that he is continuing to make links, take in information and learn about the wider world.
I credit Lady for having imparted this crucial information. They have a "lift the flap" human body book and greatly enjoy the page on digestion. When I told her about Duncan's announcement, she laughed and said it was because she'd shown him the book and its page about the "regime of eating a pear." I think she meant "process" but at least she's trying out her extended vocabulary!
22 Feb 2008
What do I know
The Irish media's coverage of ABA continues.
Last Sunday, there was an opinion piece entitled "Disgraceful system that has failed or children." Writer Marc Coleman states that "What is happening with autism calls on our resources of outrage." But just a few lines later he writes, "Thank God, I have no experience of autism in my immediate family: in Ireland that would be some cross to bear."
Is anyone else outraged at this disgusting statement? How dare he say people like my son are a cross to bear.
He then tells the story of a friend of his who rang him to apologise that he wouldn't be able to attend his wedding, as the friend's child was about to start treatment that same day. This child didn't have cancer or an illness that meant "treatment" couldn't be postponed for a day, no, the child was autistic.
Coleman then totes up the cost of autism on Irish society, the burden these people place on the economy, basing his figure on a UK study. He comes up with the figure of €100m a year; the cost of institutionalising a child with autism for the rest of their life. Because, he thinks, that's the only alternative to ABA.
Humph.
He then says;
A success rate of 50%!!!
What foolishness.
In the Irish Examiner, I read that Michael Ringrose of People with Disabilities Ireland says,
I wonder if there are any autistic people on the board of that organisation.
Yesterday's leader in the Irish Independent is supportive of the demands for ABA.
I responded to the online edition, pointing out that not all parents think this way, and that you can have both love and logic. I also briefly outlined how scant the evidence is for ABA, and wrote, "the study people kept referring to as the best evidence, is 21 years old, had major design flaws, and involved the use of harsh aversives; slapping and shouting at the children. Yet people keep quoting this study as evidence for ABA! (The 50% "cure" claim originated with this.)"
I had to keep the comment to under 1000 characters, which didn't seem to apply to some subsequent commenters!
The next commenter got annoyed at what I said, especially the bit about the 21 year old study. But it is true, most of the media stories I have read do make the credulous statement that there's a 50% success rate" or 50% of children are"recovered" using early, intensive ABA, so it is crucial to point out the flaws in this study. This post in the blog Natural Variation, an excellent autism blog, does just that.
One of the comments is from a Mr Mickey Keenan.
From all the SHOUTING, and weird statements, I will assume this is not Dr Mickey Keenan, University of Ulster lecturer and ABA specialist.
I'm a lay person, just a mum. I am interested in how autism is reported because the attitudes depicted and disseminated by the media directly and indirectly affect my autistic son. I hate to see the negative language used in some of these stories, the fear of difference and lack of understanding, the assumption that autistic children are so very strange, that they need a wholly separate way of teaching them, one which would never be used with typically developing children. I get upset at the hype and misrepresentation of the scientific basis for ABA, just as I do when people say vaccines cause autism.
It's upsetting that there doesn't seem to be anyone speaking about these things in Ireland. Perhaps everyone else agrees with the idea of ABA funded for all the children whose parents want it, no matter that the reasoning they're using in demanding this is so flawed. But whatever, what I say is not going to change anything.
Last Sunday, there was an opinion piece entitled "Disgraceful system that has failed or children." Writer Marc Coleman states that "What is happening with autism calls on our resources of outrage." But just a few lines later he writes, "Thank God, I have no experience of autism in my immediate family: in Ireland that would be some cross to bear."
Is anyone else outraged at this disgusting statement? How dare he say people like my son are a cross to bear.
He then tells the story of a friend of his who rang him to apologise that he wouldn't be able to attend his wedding, as the friend's child was about to start treatment that same day. This child didn't have cancer or an illness that meant "treatment" couldn't be postponed for a day, no, the child was autistic.
Coleman then totes up the cost of autism on Irish society, the burden these people place on the economy, basing his figure on a UK study. He comes up with the figure of €100m a year; the cost of institutionalising a child with autism for the rest of their life. Because, he thinks, that's the only alternative to ABA.
Humph.
He then says;
With a success rate of 50 per cent, the return on investment of an extra €50,000 for four years of Applied Behavioural Analysis leads to savings per child to the exchequer of €1.4m. And even if that figure is an overestimate, with around 6,000 children estimated to have autism, the return to the exchequer over our lifetime will be significant.OfOf course this is how a clever, worked-out and integrated approach to policy making would work, an approach with a heart, a brain and an ability to combine both. Yes Applied Behavioural Analysis is needed.
A success rate of 50%!!!
What foolishness.
In the Irish Examiner, I read that Michael Ringrose of People with Disabilities Ireland says,
What seems to be accepted by all sides is that the ABA teaching method is appropriate for certain children with autism. What is needed now is to make sure the appropriate system for each child is diagnosed in the first instance but crucially, that it is available to each child, not in a limited way as the current education system dictates but as the child needs it.
I wonder if there are any autistic people on the board of that organisation.
Yesterday's leader in the Irish Independent is supportive of the demands for ABA.
Parents believe ABA is by far the best treatment and this view is backed by many experts, including a prominent member of a task force that advised the Department of Education on autism. The department and the minister reject the exclusive use of ABA and favour a combination of methods. Ms Hanafin says that this view is endorsed by a consensus in the international autism community.
Can both sides be correct? The parents who report phenomenal improvements in their children's condition as a direct result of intensive ABA treatment, or the minister who insists she is simply applying best international practice?
Earlier this week, in these pages, the minister made her case in a reasoned and logical manner. Sadly, for her, many parents of autistic children see this only in terms of love, not logic.
I responded to the online edition, pointing out that not all parents think this way, and that you can have both love and logic. I also briefly outlined how scant the evidence is for ABA, and wrote, "the study people kept referring to as the best evidence, is 21 years old, had major design flaws, and involved the use of harsh aversives; slapping and shouting at the children. Yet people keep quoting this study as evidence for ABA! (The 50% "cure" claim originated with this.)"
I had to keep the comment to under 1000 characters, which didn't seem to apply to some subsequent commenters!
The next commenter got annoyed at what I said, especially the bit about the 21 year old study. But it is true, most of the media stories I have read do make the credulous statement that there's a 50% success rate" or 50% of children are"recovered" using early, intensive ABA, so it is crucial to point out the flaws in this study. This post in the blog Natural Variation, an excellent autism blog, does just that.
One of the comments is from a Mr Mickey Keenan.
What the minister has never understood is that ABA is NOT a METHOD any more than Medicine is a METHOD. Medical SCIENCE and Applied Behaviour Analysis are distinct SCIENCES. Until she gets this right, the minister can't even begin to address funding issues for training in ABA let alone funding for schools. You can't create more ABA schools if you don't have more trained behaviour analysts to work in them.
So, minister, are you right, or are the professionals right? Is ABA simple another METHOD, or is it a SCIENCE? Once you acknowledge that it is a science then you have to concede that it is possible for one 'METHOD' to apply to all children. That "METHOD" is called the SCIENTIFIC METHOD. I sincerely hope you are not saying that you can envisage something other than the scientific method being best for the children.
From all the SHOUTING, and weird statements, I will assume this is not Dr Mickey Keenan, University of Ulster lecturer and ABA specialist.
I'm a lay person, just a mum. I am interested in how autism is reported because the attitudes depicted and disseminated by the media directly and indirectly affect my autistic son. I hate to see the negative language used in some of these stories, the fear of difference and lack of understanding, the assumption that autistic children are so very strange, that they need a wholly separate way of teaching them, one which would never be used with typically developing children. I get upset at the hype and misrepresentation of the scientific basis for ABA, just as I do when people say vaccines cause autism.
It's upsetting that there doesn't seem to be anyone speaking about these things in Ireland. Perhaps everyone else agrees with the idea of ABA funded for all the children whose parents want it, no matter that the reasoning they're using in demanding this is so flawed. But whatever, what I say is not going to change anything.
Words and ideas
Last night, Gordon returned from a work trip to Cairo. He'd been looking forward to visiting Africa for the first time. Lady and Thomas read up on Ancient Egypt while he was gone and Lady wrote about how the pyramids were built, how mummies were made and why. Like most children that age, she liked the gross details, like how the brains of bodies to be mummified, were fished out through the nose. Gordon was lucky enough to see the pyramids and Great Sphinx at Giza
When he got home, he was greeted as a hero by Lady and Thomas who bombed down the stairs and jumped on him. Duncan continued playing Roller Coaster Tycoon 3 on his PC. He always takes a while to get used to his dad's return, even when Gordon has just been to work for the day. But when he was ready, he came over too and demanded to go upstairs to play various rough and tumble games they have invented.
I was listening to Duncan yesterday as he played with Gordon. His language has progressed so much recently. He can verbalise more complicated ideas and concepts. He uses more descriptive words. A few days ago, I was in town with the boys while Lady was at gymnastics class. Duncan asked to go "look at the toy trains." He knew I wasn't going to buy one and was making it clear that he understood this. In the toy shop, he picked up a toy rifle, held it up as if to shoot, and looked at me saying, "It's a gun, it's a toy one. It doesn't make fire." I asked who uses a gun, and he told me it was Clayton (the baddie in Disney's Tarzan), that Clayton is a "bad guy" who shoots the tree, which he does. He wanted me to buy the gun, but I had no money and anyway, I'm not happy with the idea of toy guns. Toy swords, fine, but I'm enough of a wishy washy liberal to feel creeped out at the idea of toy guns, Ah well, it's not that big a deal, and he didn't exactly push it so I can forget it for now. Though, he did pretend the long plastic vacuum cleaner attachment was Clayton's gun yesterday!
I was thinking about Duncan's developing communicative skills. He has always been able to communicate, even if it was taking me by the hand and putting my hand on what he wanted, or by wailing or shouting until I got or did the right thing, or by smiling and turning to me when he was happy and wanted more of whatever we were doing or playing, or running away when he didn't want to do something. But the subtle ideas he is now able to convey, help us all. He also communicates via his pictures and typed titles, and he has started to type things in turn with me, though he's more interested in writing about his characters and logos than asking or answering questions! He is less frustrated that we're not missing his meaning, I'm happier that I can understand him better, and make myself understood better. He might not be happy with everything I say, but what 7 year old thinks his mum always knows best.
When he got home, he was greeted as a hero by Lady and Thomas who bombed down the stairs and jumped on him. Duncan continued playing Roller Coaster Tycoon 3 on his PC. He always takes a while to get used to his dad's return, even when Gordon has just been to work for the day. But when he was ready, he came over too and demanded to go upstairs to play various rough and tumble games they have invented.
I was listening to Duncan yesterday as he played with Gordon. His language has progressed so much recently. He can verbalise more complicated ideas and concepts. He uses more descriptive words. A few days ago, I was in town with the boys while Lady was at gymnastics class. Duncan asked to go "look at the toy trains." He knew I wasn't going to buy one and was making it clear that he understood this. In the toy shop, he picked up a toy rifle, held it up as if to shoot, and looked at me saying, "It's a gun, it's a toy one. It doesn't make fire." I asked who uses a gun, and he told me it was Clayton (the baddie in Disney's Tarzan), that Clayton is a "bad guy" who shoots the tree, which he does. He wanted me to buy the gun, but I had no money and anyway, I'm not happy with the idea of toy guns. Toy swords, fine, but I'm enough of a wishy washy liberal to feel creeped out at the idea of toy guns, Ah well, it's not that big a deal, and he didn't exactly push it so I can forget it for now. Though, he did pretend the long plastic vacuum cleaner attachment was Clayton's gun yesterday!
I was thinking about Duncan's developing communicative skills. He has always been able to communicate, even if it was taking me by the hand and putting my hand on what he wanted, or by wailing or shouting until I got or did the right thing, or by smiling and turning to me when he was happy and wanted more of whatever we were doing or playing, or running away when he didn't want to do something. But the subtle ideas he is now able to convey, help us all. He also communicates via his pictures and typed titles, and he has started to type things in turn with me, though he's more interested in writing about his characters and logos than asking or answering questions! He is less frustrated that we're not missing his meaning, I'm happier that I can understand him better, and make myself understood better. He might not be happy with everything I say, but what 7 year old thinks his mum always knows best.
18 Feb 2008
In which we drive and enjoy a party
For much of Saturday, we were all in the car traversing the country in a south westerly direction. It was a beautiful, crisp day and somehow, amazingly, everybody was on great form despite the long journey. The clan was gathering to attend my nephew's christening. We arrived at the church about 10 minutes late, but after having travelled for over 150 miles, much of it on windy, narrow roads, that wasn't too bad...for us.
Duncan expressed his desire to go directly to my aunt P's house (she has a nice cuckoo clock and his favourite little dog) about 100 times as we drove. I'd told him that we would go there another day (she lives about 100 miles from our destination), or later, or soon, though he tried hard to pin me down to giving him a more accurate and desirable response.
As I'd expected, he wasn't best pleased when we stopped the car beside a big old church. I went in with Lady and Thomas, leaving Duncan with Gordon in the car. Duncan wanted to come inside to see me shortly after. He came in with his Gameboy, its volume set slightly too loud. He objected when I told him to turn it down, saying loudly 'I'm a bad Hopper' (Bugs Life reference) and 'I'm Cruella de Vil'. I'd expected that the service would only last for about 10 or 15 minutes longer. The priest had other ideas, and was treating the ceremony as a re-education opportunity for all (though it's doubtful how successful this was). He informed the congregation that we'd be there for 40 minutes yet. Yikes! Gordon wisely opted to take our noisy and uninterested boy out again and they went off for a walk. The other two enjoyed waving at their cousins, and eventually we were released to the comfort of the small hotel across the street, for a buffet meal, drinks, chat and for the children, loads of play.
It was a great afternoon. Duncan couldn't stop thinking and asking about the cuckoo clock he had on his mind and looked all over the hotel for one. But he was still out with everyone else, getting more familiar with and to his extended family. He played with Lady for a while, and my sister took him out for a walk, and my dad as always, played with him often. I was holding the baby for a while with Duncan sitting next to me, kissing and and stroking him so gently. I asked if he wanted to sing to baby D. and suggested a possible song. Duncan however opted to sing You'll be in my heart, from Disney's Tarzan. It is, after all, sung to a baby.
Gordon and I really enjoyed the crack (or craic...just for you Miche) of hanging out with the family. They teased me about my blog award nomination; a nomination for 'scowling' (meaning scolding), they called it. Trust your siblings not to let you get conceited!
Lady did her usual Pied Piper thing with all the younger cousins. She had them all playing schools at one stage, (cause she's such an expert on those!) which evolved into a 'Harry Potter' game. They hung out in a small lounge (the Gryffindor common room) drinking lemonade out of bottles, like I used to as a child, on the rare occasion we went to a hotel.
Oh and I need to brag on Gordon's behalf too. He's been nominated for a Northern Ireland Healthcare Award, which is, let's face it, just a bit more prestigious than an Irish Blog Award nomination.
Duncan expressed his desire to go directly to my aunt P's house (she has a nice cuckoo clock and his favourite little dog) about 100 times as we drove. I'd told him that we would go there another day (she lives about 100 miles from our destination), or later, or soon, though he tried hard to pin me down to giving him a more accurate and desirable response.
As I'd expected, he wasn't best pleased when we stopped the car beside a big old church. I went in with Lady and Thomas, leaving Duncan with Gordon in the car. Duncan wanted to come inside to see me shortly after. He came in with his Gameboy, its volume set slightly too loud. He objected when I told him to turn it down, saying loudly 'I'm a bad Hopper' (Bugs Life reference) and 'I'm Cruella de Vil'. I'd expected that the service would only last for about 10 or 15 minutes longer. The priest had other ideas, and was treating the ceremony as a re-education opportunity for all (though it's doubtful how successful this was). He informed the congregation that we'd be there for 40 minutes yet. Yikes! Gordon wisely opted to take our noisy and uninterested boy out again and they went off for a walk. The other two enjoyed waving at their cousins, and eventually we were released to the comfort of the small hotel across the street, for a buffet meal, drinks, chat and for the children, loads of play.
It was a great afternoon. Duncan couldn't stop thinking and asking about the cuckoo clock he had on his mind and looked all over the hotel for one. But he was still out with everyone else, getting more familiar with and to his extended family. He played with Lady for a while, and my sister took him out for a walk, and my dad as always, played with him often. I was holding the baby for a while with Duncan sitting next to me, kissing and and stroking him so gently. I asked if he wanted to sing to baby D. and suggested a possible song. Duncan however opted to sing You'll be in my heart, from Disney's Tarzan. It is, after all, sung to a baby.
Gordon and I really enjoyed the crack (or craic...just for you Miche) of hanging out with the family. They teased me about my blog award nomination; a nomination for 'scowling' (meaning scolding), they called it. Trust your siblings not to let you get conceited!
Lady did her usual Pied Piper thing with all the younger cousins. She had them all playing schools at one stage, (cause she's such an expert on those!) which evolved into a 'Harry Potter' game. They hung out in a small lounge (the Gryffindor common room) drinking lemonade out of bottles, like I used to as a child, on the rare occasion we went to a hotel.
Oh and I need to brag on Gordon's behalf too. He's been nominated for a Northern Ireland Healthcare Award, which is, let's face it, just a bit more prestigious than an Irish Blog Award nomination.
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