Autism Biomed Bullshit Booming in Ireland

I didn't expect that the promoters of uncontrolled and unethical experimentation on autistic children would be allowed to sell their services on RTE TV. Thanks to Suzy (who alerted me to all this stuff) I was able to catch the Morning Edition show of 21 March (segment starts at 57 minutes) when USA-based Great Plains Laboratory boss William Shaw was interviewed as an "expert in biomedical interventions" along with Karen O'Connor, boss of home-grown organisation The Child Development Centre. Shaw wasn't challenged despite claiming that they had "reversed" autism in many children with their treatments. The RTE reporter provided no balance or probing of these claims- just bovine acceptance. William Shaw's lab is one of those places where quacks send samples of urine and blood to be tested for the terrifying toxins that proper doctors and real hospitals can't find because they aren't using dodgy testing systems. The Child Development Centre provides some proper therapies like speech and language therapy and occupational therapy as well as rubbish like biomedical and craniosacral therapy and its shiny website contains a page full of jolly testimonials. There's no price list but I bet it all comes with a high price tag. 

The TV show, as always with these things, showed a mum telling the miraculous story of her son's escape from the clutches of autism (tendencies) via music, biomedical therapy and craniosacral therapy. "Two years later," claims the reporter, "he's really reaching his true potential." Two years is a long time, and autism is developmental delay not developmental stasis. The Child Development Centre is being credited with all that slow, natural progress the child made in this lovely infomercial courtesy of RTE. 

Today FM also promoted the Child Development Centre and their conference in an interview as bland as that on RTE. A mother describes how her perfect son was all of a sudden diagnosed with autism and "turned to a stone" but then they went to a herbalist and the Child Development Centre and were able to "bring him back" and now "he's not lost any more." He never was lost.

Hey Irish media, how about when you have a story on autism or some other condition, you seek out a person who has that condition. If you want an expert on autism, talk to an autistic.

Neither was I expecting to read a circa 2007 article on quack autism cures in the Irish Times a few days ago. Dear Maud this one is truly terrible. It (again) features the mother of an autistic kid who claims that following a particular regime rid her child of teh autisms. This time it's the services of Natasha Campbell McBride's and her GAPS diet that are being promoted and Geoff has written a wonderful post detailing just a few of her outrageous claims and dubious and potentially dangerous practices.

This article follows the tried and tested Autism Article^TM template as described below.

Don't stray from the template- sure who wants to know about the reality of life with autism!

It really astonishes me just how closely Adrienne Murphy sticks to the template I wrote in 2008!

But it's 2014 and we should not have to keep having these discussions. I'm tired of dismantling specious claims by unscrupulous hacks. Autism is nothing like that described by Murphy in the Irish Times. Autism is a genetically-based human neurological variant and NOT "the result of a complex intermeshing of degenerative diseases and comorbidities, largely created and exacerbated by environmental factors."

Autistic children are NOT "fully recovering" after biomedical treatment. Autism is not a disease though some people may have medical conditions as well as autism for which they must obviously receive proper medical treatment.

Murphy describes herself as "a lay expert" in autism yet fails to understand the most basic explanation for rising diagnoses.

Yet there's a final insult in the closing lines of the article: "Adrienne Murphy will be joking about autism as one of the performers in Stand Up For Humanity! Activists do Stand -Up Comedy for Charity."
After the disablism and inaccuracies of her article, I think it's for the best that I'm too far away from Dublin tonight to attend.

I CAN'T Wait

Duncan had another appointment with the dentist this morning. Lady and Thomas have both started school now (more on that later- but it's going well) so it was just the two of us. The 1st time we were at that dentist it was a huge struggle to get him in the building. He stood outside crying for ages while I tried to reason with him. We made it into the waiting room where The Tweenies was playing on a tv, henceforth that room was known as "The Tweenies Room." Duncan utterly refused to leave the room so the dentist came to him and after Thomas modelled the procedure, Duncan consented to allow the dentist a brief glimpse inside his mouth right there. On the next visit he made it to the examination room but not onto the chair, though he did enjoy moving the stuffed dinosaur with the big teeth up and down on the chair. Then the dentist got another kick look but didn't see much. Today however Duncan was an absolute star. We entered the Tweenies Room and he dashed about a bit checking out the books and wall posters, seemed pleased that there was no smoking allowed, then got ready to leave again. An old woman and a younger man, probably her son, arrived. The man might well have been autistic himself. Duncan was restless and I said several times, "we will wait."
"I can't wait!"
"Look at the door, read the sign. This is a waiting room."
He read it and seemed a bit happier to do what the sign said, for a while at least. He got ready to move again and I said, "wait for a little while. The dentist will be ready soon."
Duncan replied softly, "I don't want to wait. Listen to me, pal!"

I just asked him about the book he had picked up. The woman most have had very acute hearing as she snorted a bit then said, "oh, that's a strange thing to say."
Now was thinking that her sticking her nose in was strange, but reasoned that she might not have known better and said, "it's a phrase he picked up from a video. He doesn't know what it means." (I regret saying that with him right beside me now.)
"Well one thing I will say, in my day we respected our parents."
"That's nice. He respects me and I respect him too."

We were called to the dentist then. I suppose I should be glad she only felt it was her right to comment on my son's words and wasn't tempted to stick a pen into his or my eye unlike the wish expressed by a "home-schooling" mother I read about on Liz's blog. This "christian" (I won't capitalise the word, this woman doesn't deserve it) clearly hasn't heard about "suffer the little children." It's hard to believe she could possibly be so ignorant about autism as she obviously is for unless she's living as part of an able-bodied people only cult, she surely knows of other non-school educated families with autistic children; there's loads of us out there!

But forget her, my boy did well today, Lady and Thomas are settling and happy in their new school, I'm off to Galway for the weekend. It's going to be just fine.

New Moon, headbanging and thinking for oneself

Duncan continues to take great pleasure in producing various pictures of Chuckie from the Rugrats. Is it perseveration? Do I care? Each picture is different in at least some small way. I think they're cute and funny and witty.

Thomas doesn't like to draw. He'd rather do maths or count the money in his Tardis money box. (I don't mean it's bigger on the inside, it's just shaped like a Tardis.) We've been doing some P4 stuff on Education City (free trial) and he's acing it all. Lady has used that site too and they both quite like it so I might subscribe. Does anyone have a code they want to share?

He's also decided he wants to try school after we return from our holiday in February (2 weeks in Orlando!) He says that everyone else in the family has been to school at some stage but he never went to nursery or school so he wants to see what it's like. I've been reading the prospectus for various schools and quizzing our friends and neighbours about what they think of the school they/their children go to.

Graham Badman and Ed Balls, do you see what I'm doing here? I'm listening to my child, I'm gathering information to help us both make the best decision about his education. It's not a matter of my rights clashing with his, despite the mistaken way in which you think about parenting and the duty on parents to ensure their child receives an education. If he's happy to go to school and it works out for him, then fine, he goes to school. But if he doesn't like it, he will be deregistered and his education will continue to happen at home and in the community as it has so far with great success.

So what else- we watched the latest Doctor Who, The Waters of Mars which was terrific, and taught that the homeopaths were wrong; water has patience not memory (via @jackofkent). Also, Gordon was in the US for a week but the children were still able to see him thanks to the magic of technology. Here's a screen grab he took from his hotel room in Boston as he spoke to Duncan and I via Google video;

Nice and clear eh!

What wasn't so nice was the cuckoo clock falling off the wall (where I had fixed it-guilt!) somehow and onto Thomas' head. He was sore and bleeding so I called a friend and neighbour who kindly rushed around with her little girl to stay with Duncan and Lady while I took Thomas to get checked out. The bleeding stopped quickly but you don't take chances with bashes to the head. I went to our GP 1st as it's very close and told the receptionist what had happened, her question floored me (not really) -"Does he have an appointment?" Yes really!

She advised me to take him to the Minor Injury clinic in town so I did and he was seen and sorted very quickly. Thankfully there was no evidence of serious harm and he didn't even need a stitch.

The following morning my neighbour minded my children again while I met with a psychologist to discuss Duncan and to seek advice on issues I wish could help him deal better with, like his impulses and angst driven shouting. I don't know how useful it will be. She used the word "behaviours" which I dislike intensely. I've been given an assessment form to fill in; ABAS II for those familiar with such things. It's interesting, but leaves no space to detail many of the skills and abilities he does possess, but I suppose they are deemed "non-functional" or something.

Lady continues to work hard at gymnastics. She trains for over 15 hours a week and loves it. I watched her at cheer-leading on Saturday and was so proud of her strength and poise. Her acro partner and sister are visiting today, no doubt they'll be showing off to me on the trampoline.
I took Lady and her close friend (who lives next door) to see New Moon, that Twilight film yesterday. Oh my, what hokum. The girls enjoyed it even as they were laughing at how silly so much of it is. That Bella Swan girl is so pathetic, glum and wan. She never does anything but mope and have nightmares. Has she no hobbies? Her face would break if she cracked a smile. The girls can easily see she's taken all that first and fiery love thing too far- jumping off cliffs and riding motor bikes with no helmet just to produce ghostly ticking-offs from Mr Chalky.
They both thought Jacob the were-boy was the better bet, if forced to choose and I think they're right. Both have acknowledged the inherent ridiculousness of getting involved with anyone who could either claw or bite you to death at any moment and do not think it's romantic, just that it makes (for them) for an engaging fantasy.

I say this as some of the chatter on the Twilight series warns of the danger to girls of thinking that bad boys are best; but I have much more respect for girls' ability to see it for what it is, a rollicking bit of escapist nonsense.

I laughed a lot, and was elbowed fiercely by Lady. It's not supposed to be funny when Edward with his LOW slung trousers starts to unbutton his shirt in the sunshine, but it really was. He has such big hair too, I wonder what product he uses, something specially developed for the dead?

Michael Sheen was great fun as an evil vampire overlord. It was extra delicious since I think of Tony Blair whenever he's on as he's played our previous beloved leader twice in film and will do so again soon I've read. So I was watching and thinking that the evil leader of the vampire council is Tony Blair. Good job he didn't get the European presidency he sought, dread to think what he's have done with the increase in power.

With all this nonsense I end. But having read Mike and Sarah's posts on the latest pile of bile from Minnette Mirrin, I'm rilled up enough and will be back with some whinge blogging imminently.

The Autism Gut Question

One of the most prevalent unsubstantiated claims about autism (after the "lack of empathy" myth) is the idea that autistic children have more gut problems than non-autistic children. This notion was fed by the now debunked 1998 article by Andrew Wakefield who claimed to have discovered a new disorder he called autistic enterocolitis, a condition not recognised by scientists.

I have read countless times, parental tales of woe about their autistic children's constipation. yeasty poos, diarrhoea, and all sorts of bowel problems. No doubt, many of these are real, but reporting is rather self selecting. Most parents whose autistic children have no gut issues don't make as much noise. Moreover, constipation etc is common in all children.

In the past week, 2 scientific studies have been published that cast doubt on the validity of the autism gut connection. These are ably discussed on LB/RB.

The first study compared the stool patterns of autistic children and non-autistic children and concluded,

"During the first 42 months of life, ASD children had a stool pattern that was very similar to that of other children, apart from a slight increase in stool frequency at 30 and 42 months. There were no symptoms to support the hypothesis that ASD children had enterocolitis."

The second study examined the incidence of gastrointestinal problems in autistic children. It concluded,

"No significant associations were found between autism case status and overall incidence of gastrointestinal symptoms or any other gastrointestinal symptom category."

and

"As constipation and feeding issues/food selectivity often have a behavioral etiology, data suggest that a neurobehavioral rather than a primary organic gastrointestinal etiology may account for the higher incidence of these gastrointestinal symptoms in children with autism."

So, according to this, autistic children are only as likely as non-autistic children to have gut problems.

The doctor who led the second study, Dr Samar H. Ibrahim, a pediatric gastroenterologist at the Mayo Clinic, has also criticised the common wheat-free/dairy-free diets autistic children are placed on despite having had no appropriate diagnostic tests.

"There is actually no trial that has proven so far that a gluten-free and casein-free diet improves autism. The diets are not easy to follow and can sometimes cause nutritional deficiencies."

She also made an astonishing, welcome yet sadly uncommon call for standards and ethics in autism.

"Patients with autism should be investigated the same way as normal patients when they have GI symptoms. And doctors should do a thorough investigation before labeling them with any GI disorder because the overall incidence of any GI disorder did not differ from that of the overall population."

Dr. Patricia Manning-Courtney (medical director of a Center for Autism Spectrum Disorder in Cincinnati) said,

"For me, this study lends support to the recommendation I make to a lot of families that there is no evidence to support restricted diets. They're dangerous and risky. You have to think long and hard before you, as a parent, make that choice."

When Duncan was diagnosed, talk of the GF/CF diet was all the rage on the autism lists and websites I perused. Most of the UK sites referenced Paul Shattock, a pharmacist who over 17 years ago, claimed that opioid peptides were associated with autism. However he has never published his evidence for this idea. Other studies have disputed his findings, like this paper which shows no correlation between IAG and autism.

For some children, restrictive diets may help, but I agree with the doctors quoted above, get some real medical advice first.

Simon Singh's chiropractic article: “Beware the spinal trap”

Many bloggers today are reprinting a slightly altered version of the article on chiropractic Simon Singh wrote for The Guardian. Unlike scientists who defend their claims by discussion in the scientific media, the British Chiropractic Association (BCA) used the method so beloved of practitioners of non evidence based medicine, and sued Simon Singh for libel. There's nothing the alties like so much as a spot of legal chill.

Like all forms of woo, chiropractic is said to cure/treat autism. Quentin Wilson says it cured his autistic son and he used to be on the telly talking about cars so he should know. His anecdote is used by this UK chiropractic clinic as some sort of evidence of effectiveness.

Chiropractic is one type of woo that has before now, seemed to avoid close inspection from the DCs of the world who excel in exposing pseudoscience, as it seemed more scientific, or at least, sciencey. But the decision of the BCA to apply legal muscle to silence reasonable critique has only drawn lots of people to focus attention on their practices and positions. They are not enjoying the scrutiny.

Simon Singh wrote a decent, informative article and it'd do no harm for more people to read it.
If you agree that the law has no place in scientific disputes, please add your name to the statement.

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Beware the spinal trap

Some practitioners claim it is a cure-all, but the research suggests chiropractic therapy has mixed results - and can even be lethal, says Simon Singh.

You might be surprised to know that the founder of chiropractic therapy, Daniel David Palmer, wrote that '99% of all diseases are caused by displaced vertebrae'. In the 1860s, Palmer began to develop his theory that the spine was involved in almost every illness because the spinal cord connects the brain to the rest of the body. Therefore any misalignment could cause a problem in distant parts of the body.

In fact, Palmer's first chiropractic intervention supposedly cured a man who had been profoundly deaf for 17 years. His second treatment was equally strange, because he claimed that he treated a patient with heart trouble by correcting a displaced vertebra.

You might think that modern chiropractors restrict themselves to treating back problems, but in fact some still possess quite wacky ideas. The fundamentalists argue that they can cure anything, including helping treat children with colic, sleeping and feeding problems, frequent ear infections, asthma and prolonged crying - even though there is not a jot of evidence.

I can confidently label these assertions as utter nonsense because I have co-authored a book about alternative medicine with the world's first professor of complementary medicine, Edzard Ernst. He learned chiropractic techniques himself and used them as a doctor. This is when he began to see the need for some critical evaluation. Among other projects, he examined the evidence from 70 trials exploring the benefits of chiropractic therapy in conditions unrelated to the back. He found no evidence to suggest that chiropractors could treat any such conditions.

But what about chiropractic in the context of treating back problems? Manipulating the spine can cure some problems, but results are mixed. To be fair, conventional approaches, such as physiotherapy, also struggle to treat back problems with any consistency. Nevertheless, conventional therapy is still preferable because of the serious dangers associated with chiropractic.

In 2001, a systematic review of five studies revealed that roughly half of all chiropractic patients experience temporary adverse effects, such as pain, numbness, stiffness, dizziness and headaches. These are relatively minor effects, but the frequency is very high, and this has to be weighed against the limited benefit offered by chiropractors.

More worryingly, the hallmark technique of the chiropractor, known as high-velocity, low-amplitude thrust, carries much more significant risks. This involves pushing joints beyond their natural range of motion by applying a short, sharp force. Although this is a safe procedure for most patients, others can suffer dislocations and fractures.

Worse still, manipulation of the neck can damage the vertebral arteries, which supply blood to the brain. So-called vertebral dissection can ultimately cut off the blood supply, which in turn can lead to a stroke and even death. Because there is usually a delay between the vertebral dissection and the blockage of blood to the brain, the link between chiropractic and strokes went unnoticed for many years. Recently, however, it has been possible to identify cases where spinal manipulation has certainly been the cause of vertebral dissection.

Laurie Mathiason was a 20-year-old Canadian waitress who visited a chiropractor 21 times between 1997 and 1998 to relieve her low-back pain. On her penultimate visit she complained of stiffness in her neck. That evening she began dropping plates at the restaurant, so she returned to the chiropractor. As the chiropractor manipulated her neck, Mathiason began to cry, her eyes started to roll, she foamed at the mouth and her body began to convulse. She was rushed to hospital, slipped into a coma and died three days later. At the inquest, the coroner declared: 'Laurie died of a ruptured vertebral artery, which occurred in association with a chiropractic manipulation of the neck.'

This case is not unique. In Canada alone there have been several other women who have died after receiving chiropractic therapy, and Edzard Ernst has identified about 700 cases of serious complications among the medical literature. This should be a major concern for health officials, particularly as under-reporting will mean that the actual number of cases is much higher. If spinal manipulation were a drug with such serious adverse effects and so little demonstrable benefit, then it would almost certainly have been taken off the market.

Simon Singh is a science writer in London and the co-author, with Edzard Ernst, of Trick or Treatment? Alternative Medicine on Trial. This is an edited version of an article published in The Guardian for which Singh is being personally sued for libel by the British Chiropractic Association.

Notes from the week

The first week of summer scheme was a great success. Thomas informed me that it was excellent and that he didn't even know he'd make some new best friends. He's especially keen on a boy whom he likes because he's kind, funny and thinks Thomas is funny too. I thought those particularly good qualities to look for in a friend. Lady told me that Thomas is hanging out with a few other boys his age who run around saying, "uh oh, spaghetti-o!" which is Thomas' new catch phrase. There are worse things he could have taught them! His other new thing is to describe everything, deadpan style as, "fascinating." I don't know where he gets these things.

Lady has joined a group of pals all into sporty stuff. She loved the swimming, badminton and gymnastics best. I'm happy that they're both enjoying it.

Duncan and I had 3 quiet days together. We did a few tasks in town, chilled out at home, cooked chicken, printed out more pages for his Thomas the Tank books and went for lovely walks in the forest with Pippi dog. We also went to see the paediatrician and unlike the last time (hellish) it all went so well. The paediatrician wanted to review his progress since starting the medication. However he only took it for a month to no discernible effect. I thought about increasing the dose, after discussing that option on the phone with his doctor, but instead decided to stop giving it to him. By then the weather was better and we've been outside a lot more which helps him burn off his pent up energy and like all of us, he's happier when it's nicer outside.

He found a Thomas the Tank book in the waiting room so spent his time in the doctor's office avidly looking through it, reading out little lines now and then. I was so much more aware than ever before of talking about him in front of him, and trying to save his potential embarrassment. He was listening carefully even though he appeared not to and told me "that's enough" when I told some anecdote or other.

We went to the funfair for a while on Saturday while Lady had her cheer leading class. I took Thomas on the waltzer. Sweet mother, never before have I experienced a ride so fast. It went on for ages, kept slowing down giving me a false sense of relief that it was finally over, only to speed up again. It was like some sort of metaphor for life. Thomas was shaking when we alighted, but got his nerve up enough to sit by Gordon on the bumper cars while I accompanied Duncan. He "helped" me steer and we'd a great laugh. It was the only ride he wanted to go on, he just watched the rest.

On Sunday morning Duncan asked me to take him and Pippi for a walk. He specifically requested that the rest of the family not come! We walked for a couple of miles in the forest park and out near the shop. I had no money with me and he was content to just walk past and not go in. It was really nice. He took his scooter and was a little way in front of me. He pushed the scooter up one especially steep and bumpy hill saying as he went, "this is very hard work. Will I ever see the top!" Then nearing the road he took Pippi's lead and I carried the scooter. She kept digging in her heels and looking back to see where I was which limited his ability and desire to race off.

Later, Gordon's mum came over to babysit while he and I went shopping for clothes he needed. He's off to San Fransisco on Wednesday for a week long conference so he's got to look sharp. I'm well used to being the only adult about. But perhaps some time soon I'll get to switch the roles, at least occasionally.

One quack clinic goes, another springs up

I just discovered a new site, Homoeopathy Ireland. It's for a clinic in Wexford claim to specialise in the "leading childhood epidemics of our time: Autism, ADD/ADHD, Asthma and other allergies."

Clearly these are all conditions in which homeopathy has been shown to have no effect whatsoever. But then this form of "medicine" has been shown to help many who have "a vague sense of unease or a touch of the nerves or even just more money than sense" then the homeopaths will be "there for them with a bottle of basically just water on one hand and a huge invoice in the other."

It's rather spooky that I learn of the existence of this clinic claiming to be able to heal the body of autistic children and hence their minds (gak) on the same day I read of the closure of a USA clinic promising much the same kind of quack nonsense and similarly intent on fleecing the well meaning parents of disabled and sick children. The quacks just love to get a bit of that autism pie. Brüno knows that autism is "in" now, but not because its funny, but because it's a great money spinner for people with all sorts of agendas.

The good folk at Homeopathy Ireland have a post up detailing their philosophy of autism. I've left a comment which has to be approved and which I'll repeat here.

Autism rates are not increasing. Changing diagnostic criteria, broadening of the autism concept, diagnostic substitution, improved services and awareness have all contributed to a perceived increase.

There is no evidence that autistic children have been successfully treated biomedically, and absolutely zero evidence of homeopathy having any kind of benefit in autism or any other non self limiting condition.

“Here, at Homeopathy Ireland we believe that vaccination injury among other variables play a part in autism.”
Your scaremongering about vaccines is not backed by any evidence either, some parents may have a “belief” that vaccines damaged their children but that is not enough. Do you at homeopathy Ireland welcome increased numbers of children suffering the ill effects of preventable infectious diseases also?

Where are these “Studies [that] have shown that 80% of these children have symptoms that suggest gastrointestinal disease”?

Autism is not curable, certainly not with homeopathy/magic water. Autistic children can learn, develop and benefit from sensitive parenting and appropriate education.

“By healing the whole body; the source of the problem, we then heal the mind.”
Prove it.

I have looked further at the effects of homeopathy on autism here.

So Gordon met Polly

The media provides endless stupid when it comes to autism. The latest Daily Mail article has the fantastically asinine headline, "I helped my son beat autism by making him give up Weetabix." But the ignorance of Daily Mail headline writers is to be expected. What though, can explain the decision of the Prime Minister of the UK, with all the difficulties he currently faces, the country in financial chaos, his party suffering near annihilation in the elections and his own precarious position as our beloved leader,to find the time to have a chat with Polly Tommey, a self appointed representative of some entity she's called "Autism Mothers".

How did this woman get the ear of the PM? She and her supporters ran an astute marketing campaign of billboards and posters costing over £500 000 (according to their press release). She and a group of other rich and attractive mothers posed in comely black dresses as the "Autism Mothers: Delivering Where Governments Have Failed." They are supposed to show that these women "aren't downtrodden, ill educated women who somehow deserve to have an autistic child."

Their billboards made out that this woman alone can save the PM £508 million a year, can help cut the divorce rate, can help him get people back to work. She is the messiah mum! She's going to make it all better.

The billboards didn't make it to Northern Ireland, but I've heard that there were loads of them about in England. For some reason, they were common in motorway service station toilets too.

But Gordon Brown for some bizarre reason fell for it and has since met the amazing Polly. I met her too 7 years ago and wrote about it here:

I spent a long afternoon listening to her theories and her detailed regime to rid her son of his autism. Back then I was impressed at her zeal and ostensible knowledge of autism's causes and treatments. Her son had had intensive ABA teaching. He had a host of supplements daily. He was fed only organic food and water from glass bottles, lest any pesky toxins intrude.

She talked about his numerous infections and how she believed the many courses of antibiotics he'd taken as a baby, together with vaccinations, were connected to his autism.
...
I was caught up in her pitch and wanted to think that she knew how to help me help [Duncan]. She warned me against joining the local NAS group where they refused to believe in cures and whose acceptance she interpreted as negativity.

She was a very kind lady. She welcomed me into her home and really did want to share what she knew in an effort to help. She presented me with a glut of her magazines which I read religiously for the next week or so. I tried to get Gordon to take an interest in it all. I showed him the article by the nutropath, advocating various vitamins and minerals. I showed him the articles about the labs which tested autistic children's hair, blood and stools and found all sorts of non standard levels. He scoffed at the lot of it. He just knew too much about microbiology, statistics, pharmacology etc. to be taken in by any of it. He pointed out a pile of what were (to him) ridiculous assertions contained in the magazines, and since he really knows his stuff, I dumped the lot of them.

But times have changed since then. What could be attributable to ignorance back in 2002, is less excusable today. The science has moved on. Numerous studies have failed to find a link between vaccination and autism, while as many have found more evidence for the genetic basis of the condition. Those who cling to environmental explanations in the face of the evidence are coming from a faith based position.

The Autism File magazine has moved on too. It still backs failed gastroenterologist/autism quack therapist Andrew Wakefield wholeheartedly, and still pushes unproven biomedical treatments as the best option for autistic children, and carries copious advertisements for the providers of such woo, but these days it's more widely available. Sadly, there's a market for such bollocks.

Here's how this dynamo of autism nonsense is introduced in the Daily Mail:

A few weeks ago, a one-woman campaign culminated in Polly Tommey meeting the Prime Minister to improve support for the families of children with autism.

She was fighting for the sake of thousands of other parents around the country, having become an unofficial 'Good Samaritan' for the desperate parents of autistic children.

Oh really? A petition in her favour got only 574 signatures. Where is the evidence that this woman and her company represent "thousands of other parents"? The NAS is much more representative of autistic adults and children and their parents/families.

Polly starts her article by describing the time she counselled a man who felt suicidal because he couldn't cope with his autistic 2 year old son. It's great that she was able to stop him killing himself but why did he have her phone number to call in his time of need? Why has she set herself, as an individual no more qualified than I myself am, to be the authority and source of help and information for parents of autistic children. Wouldn't a well established charity like the NAS be more useful?

Polly then describes "how unrelentingly hard it is looking after autistic children" with an apparently illustrative incident in which her son, then aged just two, pulled his six month old little brother's hair out. While I'm sure that was traumatic for the baby and hard on his mum, it's hardly unusual for toddlers, autistic and not, to inadvertently hurt their baby siblings. Oh I forgot, here's what marks it out as bizzarro autismo stuff; "Toby was screaming and his head was all bloody - but Billy was just laughing." Yes, the two year old laughed instead of recognising the full magnitude of his crime and promising to make reparations.

Polly tells us about her charmed life before the dread autism came to call and she and her husband "cried until we fell asleep" for six weeks. She calls her son's autism "regressive autism" and was "desperate to get my child back. I would have done anything for a smile or a cuddle, or to hear him say: 'I love you, Mum.'"

Polly continues with the myth of the autism gut:

People don't realise that a large proportion of autistic children have terrible gut problems, and for 18 months that was the case with Billy. Any normal child would have been taken to A&E at some point and given a battery of tests, but with autistic children doctors say it's just part of their autism.

Just what is the evidence that autistic children have more gut problems than non autistic? And why would a child go to the A&E department for tests on autism? That's one of the oddest suggestions I've heard yet. I've said it before, if you think your child has gut issues, see a doctor, but not at an accident and emergency department. When a child is sick, it's irrelevant that the child has autism. When Duncan was younger and had a limited diet and wasn't gaining weight fast enough, we were referred to a paediatric gastroenterologist as part of the investigations into his health needs. He had various tests performed, all by proper doctors and all expenses were covered by the NHS. No doctor has ever said to us that any of Duncan's medical issues should be taken as just part of his autism. But maybe we've just been lucky.

The Tommeys discovered the gluten free/casein free diet and like magic, Billy improved. His Dad was so impressed that he sought out more sources of (mis)information on biomedical approaches to autism and he "re-trained as a clinical nutritionist."
Of course he did!

But what's this, in the bit about how they were the first in the UK to try treating their son with the hormone secretin, Polly says that "Billy still suffered terrible constipation, and we thought it would help regulate his gut. It worked and Billy's behaviour improved."

But...I thought the GFCF diet had sorted all that?! Anyway, one of the couple's media mates got them onto the Trevor McDonald Tonight TV show talking about secretin and they found themselves "inundated with people asking us for help." They decided to start a magazine, it's circulation is now an impressive 44,000 and it's on sale nationally for £4.95. It's safe to say, the Tommeys words are read a bit more than my own.

Polly then explains the type of problems people ask for their help with but she admits, "I am not trained to deal with any of this. All I can do is listen and advise where I can."
So why not send them to the NAS, where the phone counsellors are trained?

She comes out with an amazing admission:

There is so much misinformation out there, and so little understanding from health professionals, emergency services and the authorities that it makes caring ten times harder.

The Autism File magazine is one such source of misinformation.

The article proceeds with an anecdote of autism induced difficulties. In this case however, if what she says is true, a terrible miscarriage of justice has been suffered by the man described. He screamed on a bus when he couldn't deal with the sound of a baby crying, was taken away by the police and sectioned. This is all told from the perspective of his mother who, Polly says, "didn't see him for six months and by the time she got him back he was pumped full of drugs and could only sit rocking backwards and forwards in his bedroom. All her hard work had been destroyed."

All her hard work?! Polly continues;

The cost of life care for an autistic person is around £2.9 million, but we think that with the right help that could be massively reduced.

This figure relates to the cost of a person with autism and a learning disability. For people with High Functioning Autism, the same authors estimated the cost at £784 800.

Polly postulates the provision of an autism centre which she reckons would cost £10million to set up and "where we could educate the police, magistrates, teachers and anyone else who comes into contact with autism."

The unsubstantiated claims of biomedical believers are shared;

There are amazing things being done to help autistic kids, particularly with biomedical intervention - detoxifying children through supplements and probiotics, diet, speech therapy and behaviour analysis.

Some children respond so well they are taken off the autistic spectrum and can return to mainstream school.

But very little of this help is available on the NHS, or through the local education authority.

But, why should the state fund this when there is no evidence of its effectiveness?
Polly might learn from an astonishingly good article the Mail ran earlier, the great autism rip-off.

Polly tells that Gordon Brown "loved the billboard campaign and said it was genius."

Money talks.

The article continues;

Gordon wants me to work with his wife Sarah to bring all the autistic organisations together so that we can work for a common cause. He wants there to be more understanding towards autistics, and for them to be more included in society.

For that to happen, the public sector needs educating, so he wants his representatives to attend a conference that our charity, The Autism Trust, is running in October. We want doctors, scientists and the public sector to learn more about dealing with autistic people.

I am all for more understanding of and towards autistic people. I don't see how this can be achieved by attending a conference run by a group of parents whose dearest aim is the removal of their child's autism. The government representatives would be better off meeting actual autistic people to learn from them about their needs for services and respectful, inclusive treatment.

Doctor distractions

Been lacking blog juice lately as my brain ponders a whole heap of stuff. Thomas has gone with his dad and grandmother to Oxford for a few days. They'll all be home tomorrow. He is having a good time, enjoyed the Star Trek film last night. (I want to go see it myself some day too.)

I popped into see the GP yesterday, had a mole on my arm I wanted checked out. I didn't think it looked too scary but thought it best to be overcautious. Duncan and Lady came with me. Duncan pranced around the doctor's room looking for the Thomas trains, for surely, every doctor has some stashed in a box somewhere? Sadly, they weren't to be found so he hopped onto the examination bed, grabbed the pillow and telling us all about his discoveries, lay down for a few seconds. All the while I was talking with the doctor. To distract him (Duncan I mean) I asked him to look at the eye test letter chart and to read the letters. Instead of naming each letter, he made words of each line, "zee not, dosap..."

The doc laughed, and remarked on what a clever boy he is.
And my mole is entirely benign, I'm just to photo it so as to track possible changes.

But that's not what I expected!

Gordon and I took Duncan to the doctor yesterday. In my referral letter, they'd said that the building was being renovated in parts so we were to use an alternative entrance and that parking might be limited. Duncan likes going to this hospital, calls it the nice hospital as he likes playing with the toys in the waiting room.

Unfortunately, we were told to wait in a different area, crowded with people of all ages. Duncan was not pleased and wailed and cried and shouted. I asked the receptionist if we could go the other waiting room as it's what he's used to and what he expects when we go there. I hadn't known it would be so different and he was unprepared for such a change. I was told we could not.

So he cried and shouted some more and the others waiting either avoided eye contact or adopted that pursed lip, disapproving look at my "very naughty" boy and my inability to "control" him. I told Gordon (who was not able to help him either) that I was going to wait in the car and asked him to get me when they were ready. Instead he gave the receptionist our phone number and joined us in the car. After a few minutes we were called out and led to the toy filled waiting room which I'd wanted to go to originally!

What an avoidable load of hassle. Eventually we were seen, a full hour after our appointment time, and in a tiny room located right beside a load of builders wielding jackhammers and drills. All this conspired to make a very unsettled boy. Duncan played for a while but soon got upset again and was looking for a toy train he played with at a previous appointment there. I was utterly frazzled and Gordon wasn't doing much better.

I looked after Duncan in a quiet hallway while Gordon talked to the doctor. We're going to get some involvement for the first time ever from the social care team, who might be able to help us find some activities for Duncan. We also got a prescription for a methylphenidate drug at the lowest dose. I'll get the medicine early next week and we shall try it out, that is if I can get Duncan to take it, and see what happens.

Decisions

I've had better days. Sure I've had worse, but I'm worn out and feeling negative. Dealing with Duncan today was no picnic. He's been shouting, screaming, wanting to have things go his way and making loud protestations when they don't or can't. My head hurts from the noise. He's full of plans to act out songs and not everyone wants to play along. Lady had 2 girls over to play for a while and he was roaring and thumping on her door to get them all to line up and pretend to be marching ants or something. Later, he threw a toy and it hit a picture hanging over our bed, shattered the glass which scattered all over the bed and floor. Thankfully he'd been standing in the doorway and wasn't hurt, and it had been an accident but it made me feel closer to overload. He was very sorry and drew one of his apology pictures.

But he's been acting, I think, more loud and hyperactive recently. It might be an effect of winter weather and not having enough time outdoors, which will improve with the better weather. He has an appointment with the paediatrician soon and I have been reading about people having ADHD with autism and looking into stimulant medications. It seems from the trials that children with both conditions can benefit from very small doses of stimulants like Ritalin. I will talk to the doctor about the possibility of trialing one of these drugs with Duncan, using the smallest possible dose and keeping a careful eye on the side-effects it might have. Though I'm anxious about using such medication, at least I can be sure these drugs are approved for the treatment of ADHD. I think it's worth trying it out as it might help him concentrate more on tasks other than film making, and help him learn more easily. And if it doesn't help or has side effects, there is no noted risk to suddenly stopping the medication and we can try something else. There's always something else to try, drugs are NOT "my last hope" or anything. If this fails or if I'm advised not to try them, we'll be fine.

On a related matter, I was tidying a cupboard and showed Duncan some pictures of his old school, not the one he went to last and which he asked to leave, but the school before that which he had always (as far as I could tell) enjoyed. I had preferred that school too and only moved him as the 2nd school had opened a dedicated autism unit which I'd thought would benefit him more. But the home-school communication wasn't as good as at school 1; there were a few notes home that baffled me. For instance, I was told once that Duncan wouldn't settle down and insisted on "running around too much" during a PE class in the school gym!

Anyway, Duncan asked to go to the school and named one of the children in the picture. This is a child he hasn't seen or heard about for 3 years! I asked him in surprise if he wanted to go to school, and he said, "go to school and play with the toys and then come home again."

I got thinking, often a dangerous pursuit. Perhaps it is time to try out school again for him. (Lady and Thomas are utterly uninterested in school.) While I can take him out with me, there are no groups around here that he can be part of, unlike his siblings who are in various sports and social clubs and who see their friends from the street regularly. He went to a Saturday club for learning disabled children twice but he was just too autistic for them, and anyway, it closed.

There are pros and cons no matter what I decide, and I just want to know what is best. Again, if he does go and is not happy, I can simply stop sending him, but is it worth the potential upset to find out?

I'm going to contact the educational psychologist and ask to meet her again and then I'll take a tour of the schools and meet the teachers. He will have to go to one of the "special" schools as there is no such thing yet as proper inclusive education and he would flounder at a mainstream school. Besides, I'm not counting on school to provide the main aspects of his education, he'll still get that at home. I just want him to have a chance to go out somewhere and be with other people now and then.

No doubt I'll update here when I know more.

Not a eunuch

I've written a post as part of Dave Hingsburger's Blogging on Sexuality carnival.

I've often heard other parents of autistic children lament that their child will "never marry or have children of their own."
My response:

1. How do you know?
2. So what?

I didn't have children so they would provide me with the opportunity to wear a fabulous hat at their wedding or to ensure a supply of grandchildren when I'm older. I've given them life and it's now theirs to live as they choose.

In raising these 3 children, I aim to teach them about relationships and sexuality. I hope they will develop the ability to make safe, healthy and wise choices. I want them to feel empowered, to have fun, to have respect for themselves and others. Their lessons started early: they have always had their questions on bodies and life answered honestly and age appropriately, they've known the correct terminology for body parts and been offered little bits of information relative to their understanding. Instead of waiting until they are of a certain age and sitting them each down for "The Talk" we have lots of chats as we go along. There's a lot more to learn yet.

Photo owned by hartford.strong@sbcglobal.net (cc)

I've also had to explain these concepts to my autistic son. He is taught about his body and to expect to be treated with dignity and to have his privacy respected. I want him to learn how to avoid exploitative encounters. He is learning like all children, what is and isn't appropriate in certain situations, and as he grows, he will be helped to understand the physical and emotional changes he's experiencing. As for each of my children, I hold no expectations for how, when or even if he will want to have romantic relationships. But he will be a man and his sexuality is a given and a right. I don't assume that just because he's learning disabled he's some sort of eunuch and I will help him however I can to learn how to negotiate the perplexing, fraught but ultimately exciting and joyful complexities of relationships. Whether marriage or children will be part of this path is up to him.

I recommend you go read Dave's own post which is just awesomeness and power and all that's great...funny as hell too.

Wakefield falsified data to link MMR to autism

One of the major sources of suffering for autistic people and their parents over the past 10 years, has been the continued association in the media and in the public's consciousness between the MMR vaccine and autism. Andrew Wakefield was a gut surgeon, a maverick doctor with a hunch and in the pay of lawyers. He held the patent on a rival measles vaccine and stood to benefit if somehow he could sully the MMR vaccine approved of by the health department and have it replaced with his own measles vaccine. For a while he tried to link the MMR with Crohn's disease to no avail, so he must have been delighted when he heard whisperings of parents blaming the MMR for causing their children's autism. He managed to recruit a bunch of these parents, most of whom were suing the government for causing their children's neurological condition, and though he wasn't a paediatrician, he got a mate to scope their guts, had the samples analysed at a badly run lab and concocted the results he needed to make out there was a strong association.

Yes, it seems he falsified the data.

Brian Deer writes on today's Sunday Times about the many ways in which Wakefield's Lancet paper of 1998, the article that set this whole confusing and damaging mess in motion, changed many important details about the 12 children studied. 11 of them were described as having a brand new condition invented by the authors, "regressive autism."

According to Deer's investigation:

"Wakefield and his team reporting that Child One’s parents said “behavioural symptoms” started “one week” after he received the MMR.

The boy’s medical records reveal a subtly different story, one familiar to mothers and fathers of autistic children. At the age of 9½ months, 10 weeks before his jab, his mother had become worried that he did not hear properly: the classic first symptom presented by sufferers of autism."

(Dear Brian Deer, your work here is excellent, but please, no more of the "sufferers of autism" thing.)

Another child was written about in the Lancet paper as developing "regressive autism" two weeks after his jab, but Deer explains that:

"...this child’s medical records, backed by numerous specialist assessments, said his problems began three to five months later."

So Wakefield blithely ignored the truth when it didn't support his theory. There is much more, the only girl in Wakefield's cohort was described in the Lancet as, "having suffered a brain injury “two weeks” after MMR" but "she had been seen by local specialists, and her GP told the Royal Free of “significant concerns about her development some months before she had her MMR”."

There is more:

"Child Six, aged 5, and Child Seven, aged 3, were said to have been diagnosed with regressive autism, with an onset of symptoms “one week” and “24 hours” after the jab respectively.

But medical records show that neither boy was “previously normal”, as the Lancet article described all the children, and that both had already been hospitalised with brain problems before their MMR."

The MMR debacle, started by one arrogant, dishonest doctor with scant regard for scientific accuracy or even for ethics in how he treated the children, has been extrapolated by the media with years of inaccurate, awful reporting on vaccines and autism. Even last week, one radio presenter, former actress Jeni Barnett, spewed her ignorant and rather deranged views on vaccination over the airways for an hour. She of course spoke of her notion that vaccines made her child autistic.

Dr Ben Goldacre played a long excert from her LBC show so people could hear for themselves just how befuddled and mistaken the woman was, just how it is that media personalities fuel the lies that have resulted in the low uptake of a life saving vaccine, the continued misrepresentation of autism as something that happens to previously "normal" children and the high rise in measles cases. The show is now available on Wiki Leaks and there are loads more links on Holford Watch.

Her response, send the lawyers after him. Typically, this has only served to spread the recognition of her stupidity world wide as transcripts of the show pop up all over the blogosphere. Hurrah for the internet.

But enough!

There have been so very many biomedical and epidemiological studies done into that supposed association. It just doesn't exist. It is a fairytale.

The time and money spent attempting to reassure the public of the MMR's safety could have been used to do make actual progress in health and science. If the smallest fraction of that effort had focused instead on helping autistic people live and thrive, the benefits would be immense.

We are fed up hearing our children described as toxic and poisoned. Surely even Wakefield's most ardent supporters, those who wave placards outside the GMC when he turns up for his disciplinary hearings and who gaze adoringly at him as if they're 10 and he's Zac Efron, will rethink and realise he's no hero.

Homeopathy cures autism

Nah, of course it doesn't! I'm not a total idiot. Obviously you can't make an autistic brain non-autistic with a drink of water. But I get loads of Google hits here from folk interested in the magik water and it's supposed effects on autism. Most of them soon realise from what I wrote on the topic (here and here) that I'm just pointing and laughing at their funny notions, and they click away to more suitable sites where there are lots of flower pictures and glowing testimonials.

Dilute flower juice; brain changing!
Image from stock.xchng

Most of these visitors I know of only via their footprint on my stat counting software. But in the past few days I've received comments from 2 of them. One was upset at my bad attitude to John Melnychuk:

Can someone please explain why John Melnychuk is being harranged liked this when the child in question is %95 less violent and his digestion has improved?
All the snide remarks seem to me to be based on contempt for a system of therapeutics that you have judged long before you have understood it- if you ever have understood it. Ignorantly poking fun at something can hardly have anything to do with a search for scientific truth.

While you continue along these lines of thinking and communication, people all over the globe are using homeopathy to help heal all manner of illness. This has been demonstrated on people of all ages and on animals.

Oh FFS. How can people be smart enough to type a message on a blog (admittedly not a thing requiring much in the way of brain power) and yet unable to see just what a pile of rubbish they're spouting.

Tell me where, anon, Melnychuk has been "harranged"(sic)? How do you know whether the child is "%95 less violent" or that "his digestion has improved", and if he has, how can the changes be attributed to the magik water? You claim that I'm dismissing a system I don't understand, well Anon, I studied enough chemistry to know what Avogadro's number is and how there can be no molecules of the original substance in extremely dilute "remedies". I'm going to go with the whole evidence based thing over some eighteenth century nostrum. Will you be the first person ever to provide proof that there has been any confirmed cure of a non self limiting disease using homeopathy alone? I don't think so.

Why do people look for a cure or sucessful treatment for illness and then scoff when one is demonstrated? If it is so incredible to you that autism can be cured or much improved then why are you even looking at this kind of information? Why don't you just accept your plight and stop reading and searching.

Who do you say is looking for a cure? Not I!
I read about this stuff because I was appalled at the awful treatment an autistic child had suffered at the hands of a quack. I hope to shed some light on the high amount of misinformation and nonsense in Melnychuk's article. I am disgusted that these charlatans think they can treat autism.

I think you might like to rethink your wording of that last sentence: having Duncan in my life is no plight, but a pleasure.

Perhaps some reading on the history of medicine would be helpful. Grossing wrote about the different schools of thought in his book Homeopathy the Great Riddle. I believe it would be somewhat enlightening to one who could read it neutrally- if one could read it neutrally. Much of this is really about two different perspectives- materialism vs. vitalism.
It would be interesting to read the commentary in 100 years from now on medicine in the 20th century. Some of the scare tactics from those promoting the current medical system (especially vaccines) sound like the ones from 200 years ago except that then they ended with something like "if you spare the lancet from your child's mouth"- a reference to bloodletting.
It would be nice to get beyond all this.

Yep, it's about 2 perspectives all right, reality and make believe. Vitalism?! What the heck is that?

So those promoting vaccines describe the risks of infectious diseases, and you call that scare tactics. It'd be nice to get beyond this silliness alright.

So then another one pops up, this time Lyak shares some advice:

Instead of attaching all these labels to your son (ADHD and autism) why don't you try to heal him? Loads of people have helped their children who have autistic symptons and even recovered them. Homoeopathy is a safe theraputic system that has been used for hundreds of years with lots of sucess. It's helped children like your son too.
http://www.impossiblecure.com/autism.html
Good Luck!!

Oh Lyak, you sound all polite and all as you dispense your badly spelt advice. So forgive me, but such tripe doesn't help at all.
But good luck to you too!!

There's word of a film being made about homeopathy and autism, to be called "Saving a Lost Generation". Can't these people think up any new metaphors for autism, surely the whole, lost, trapped, missing, changeling child thing is old now? Anyway, this story is beautifully dealt with by jdc325 here.

I promise, I'll be nice again tomorrow. Probably.

Lung Cancer in Northern Ireland

This may be off topic, but I wanted to highlight an interesting article on lung cancer research in last Friday's Belfast Telegraph. The paper seems to run a decent health section, with fewer credulous reports than the average regional rag, at least since they stopped publishing nutropath Jan de Vries self-publicising nonsense. (Miche, what was it he charged for a 5 minute consult, during which he was abrupt and dismissive, and insisted that you buy one of his many books and herbal concotions?)

The paper edition carried a photo of the researcher quoted, and damned fine he looked too (biased...moi?) It's always good to read positive stories like this, and hopefully people in the region will have more hope for a better and longer life with lung cancer thanks to the drug trials now taking place in Belfast and around the world.

Politics of the people

People can change things. America has shown us so. I stayed up really late on Tuesday night/Wednesday morning to watch the results of the US presidential elections, enjoying the company of some fellow bloggers. I was delighted with the result. From what I've seen and read about the candidates, Obama is by far the better in his policies, aims and intentions. People have chosen the candidate who is clever, accomplished and well organised. His campaign was fantastic especially when compared to the nastiness of McCain's. I'm glad there will be no more McCain "my friend" speeches nor any of his nonsense about autism, and I am glad the majority of Americans showed their opposition to the global screw ups his party have made, and that awful Palin woman.

It's obviously wonderful to have an African American family taking up residence in the White House. I think that people all over the world who are of a minority race in their home country, will be happy with this. I know Gordon has been deeply affected.

I listened to Obama's victory speech live and warmed to his inclusive address to people of all racial backgrounds, to gay and straight people, disabled and non-disabled. How about that?!

But, closer to home, the Irish government has just announced their disgusting decision to scrap HPV vaccines for teenage girls due to budget shortfalls. Even if times are hard, this is a terrible decision and is a real let down. The HPV vaccine is the only medicine yet developed that acts as an effective preventative measure against a form of cancer. I live in Northern Ireland so my own daughter will still be vaccinated when she's old enough, but what about all her cousins? I have 5 wonderful nieces living in the Republic, they all deserve this protection too.

"An angry person" by Duncan. It's how this decision makes me feel.

Via Red Mum I read that people are being encouraged to write to Mary Harney, Minister for Health, telling her how they feel and attaching a photo of their daughter (if they have one). We've seen that when enough people are motivated to make a change, it can happen. Lets see if the Irish people can effect this small but important change.

It's a shame about California and Prop 8 though.

No measles here

For all my bluster here, I recently realised something worrying; Duncan never had the second MMR vaccine, probably due to an oversight when we changed from a London GP to our local one several years ago. I was looking through the children's health records when I made the discovery, so I contacted the health centre, spoke to a GP, and arranged a time for him to catch up on this important vaccine.

My sister was spending a few days with us, so she stayed with Lady and Thomas while I took Duncan to the doctor. He ran into the health centre quite happily, but wanted to go back to the consulting room he'd been in the week before, so I had to hold him back while waiting to check in with the receptionist. He was shouting various angry/worried film lines. I kept asking him what film what he was saying comes from, then he'd calm down just long enough to tell me, and perhaps a few minutes more, then he was off again.

The health visitor came put to ask me how we could best approach the mechanics of the vaccination for Duncan, and I asked that it all be done as quickly as possible. The GP was wonderfully considerate. Duncan yelped in pain and surprise as the needle went in, but wasn't half as bothered by it as I'd worried he would be. He had to have a look at his bottom to check he wasn't bleeding later (he worries that he's bleeding after every little knock or bump, and if a kiss doesn't cure his pain, a plaster is almost sure to do it), but there was only a tiny mark.

To reward him, I said he could buy a new toy. He choose to go to the charity shop rather than the standard toy shop. He has been collecting old videos recently, mostly to examine their cases and the idents shown before the films. On that day, I found him a really old BBC video of a cartoon called "Ivor the Engine" and he was so happy later to see it had one of his favourite idents; the BBC stars. He has invited me to snuggle beside him to watch it many times since, and I've obliged for the sheer joy on his face.

He also found a toy Big Ears (friend to Noddy) which has had lots of play this week, while he dressed himself as Noddy.

So anyway, he's caught up on his vaccinations. I just didn't want to risk exposing him to measles. One MMR dose wasn't enough, and there are far too many cases of measles among children these days. I was particularly worried about the possible risk of infection when we go to Disneyland later this month.

The dangers of stigmatising mental illness

It's been quite a week.

7 days ago, I learned that a very close friend lost a family member in the most shocking and terrible way. I visited their home, and sympathised with them in their grief and pain. The loss is severe, the victim was a wonderful, kind, vibrant and beautiful person who appeared to have been doing really well recently. It has given us all cause to question the current provision of psychiatric services in this province.

The following morning, Gordon and I flew out to Malaga in southern Spain for a 3 day holiday, booked months ago for his birthday. We really needed that time together. Both of us were low and worn out by the past few months, and our time away was wonderful and rejuvenating. I was upset to hear when we returned, that Duncan, who with the other children had been cared for by their wonderful grandparents, had been a bit unwell and miserable.

Yesterday I spent a while with Duncan curled up on my lap, making up for lost cuddle time, just browsing my favourite blogs and web sites and catching up on the latest news. It made for dispiriting reading.

I read on Abfh blog, of the NYU 'Ransom notes' campaign. It appears to be an 'awareness' raising exercise by the Child Study Centre of the university, to highlight the impact of mental illness on children. That might be worth doing, but this is not the campaign to do it. This is disgusting, degrading, inaccurate and dehumanising. The autism 'ransom note' that they intend to splash all over New York and put in magazines and newspapers, says,

'We have your son. We will make sure he will no longer be able to care for himself or interact socially as long as he lives.'

How can anyone think that such a statement on a billboard will benefit a single autistic person or their family? How would I like to explain that message to any of my children? I pity the autistic people who will face such a sentiment in huge letters as they go about their city. What fear and ignorance it inspires. They have similarly awful notes on other conditions too; bulimia, OCD. depression, Aspergers and ADHD.

There is a petition that I would encourage anyone who reads this to sign. It consists of a well composed and thoughtful letter endorsed by several disability organisations, and addressing the justifiable objections to this campaign.

Via Autism Vox, I read the New York Times article about the controversy. The center’s founder and director, Dr. Harold S. Koplewicz, is quoted as saying, 'Children’s mental disorders are truly the last great public health problem that has been left unaddressed.

He went on to say (in the NYT article),

'While we knew the campaign was edgy and we knew it would be harsh and upsetting, the facts of mental illness are even more upsetting.

'I am disappointed. I thought the people we’d be arguing with are the people who believe psychiatric illness doesn’t exist or those who believe children are being overmedicated.'

'I thought we’d be fighting ignorance. I didn’t think we’d be fighting adult patients or the parents of patients whose feelings have been hurt.'

While there clearly needs to be more understanding of childhood mental health issues, this campaign only serves to increase fear, stigmatisation, ignorance and misunderstanding. This is not about something as nebulous and unimportant as 'hurt feelings' and I don't know why he considers those of us opposing the form of the campaign, as 'fighting' them. We just want to come to a resolution.

Belts, Woo and Personalities

Lady and Thomas graded in Ju-Jitsu at the weekend. They're now the proud owners of an orange and a white belt respectively. I'm surprised that Thomas graded so soon after starting, but the sensei said he was ready. He answered all the questions correctly too! So well done to them!

Duncan usually stays with his grandma while the class is on, and Gordon and I go to the gym. On Saturday Duncan made it very clear he didn't want to stay there, so we wandered the town together for an hour. It was really nice. We picked a few library books, and I was tempted to pay a visit to the event upstairs, where there was some sort of CAM fair with stands on reiki, aromatherapy, angel er, handling(?) and the like. Duncan was in his major buggy, and although there was a lift somewhere, I couldn't be bothered to look for it. I'd have loved to hear what some of them have to say for themselves though. Perhaps another time.

But we made the infinitely better decision to buy some buns and trawl the charity shops looking for books, I found a couple of ancient Ladybird books in perfect condition. One is a book on costumes and clothes through the ages. It ends with a page entitled, 'present day clothing', illustrated with a 60's era family picnicing by their car, with father in a cravat and slacks, mother, ever so daring in trousers, and children, gay and comfortable in shorts and 'jeans'. We like it!

Today, The Golden Compass film is released and I'm trying to organise things so Gordon and I can take Lady to watch it. She has been listening to the books over the past month, and loving them. I really like the trilogy, having re-read them recently in anticipation of the movie. I know I'll be disappointed when aspects of the book are omitted or changed, but it looks good on the trailer. We all worked out our Dæmons from the website. The results were rather inconsistent;

I was assigned a gibbon called Thalius. I am 'modest, sociable, dependable and fickle.' (Dependable and fickle!)
Gordon was assigned a chimpanzee called Lysandra. He is a 'leader, assertive, spontaneous, modest and inquisitive.'
Lady got an ocelot called Persaon. She is 'modest, spontaneous, inquisitive, fickle and a leader.'
A tiger called Onthany was chosen for Duncan. He was described as 'solitary, a leader, shy and proud.'
Thomas was allotted a raccoon called Arphenia. He is 'a leader, sociable, modest, spontaneous and inquisitive.'

As far as I'm concerned, there is one attribute in each profile that shouldn't be there. If C. or anyone who knows us well is reading, can you pick the error for each of us?

New Cancer Centre in Belfast

Here's a really good story for once. The new Centre for Cancer Research and Cell Biology (CCRCB) in Belfast is officially opened today. This is exactly the sort of peace dividend I want to see. It will benefit every person in this part of the world who has cancer. It comes too late to help my mum who died of cancer almost 12 years ago, and who on occasion, had less than impressive treatment in an old, crumbling and dismal setting.

From the Telegraph article;

World-renowned oncologist, Professor Patrick Johnston, director of the new centre, said the new centre marks "a major milestone for Northern Ireland and Queen's in launching an international centre for excellence in cancer research and care".

In the new centre, there are some top scientists and clinicians, one of whom I know very well and who is working hard to improve cancer therapies and to make things better for the patients.