28 Feb 2009

Facebook and Twitter cause autism

Or was it dog shampoo, plastic toys, forward facing strollers, vaccinations, refrigerator mothers, TV, rain, old sperm (though I suppose it depends on what you do with it) or wi-fi?

Susan Greenfield, head of the Royal Institution, raised concerns about social networking sites in a House of Lords debate:
"Perhaps we should therefore not be surprised that those within the spectrum of autism are particularly comfortable in the cyber world. The internet has even been linked to sign language, considered as beneficial for autistic people as sign language proved for the deaf. Of course, we do not know whether the current increase in autism is due more to increased awareness and diagnosis of autism, or whether it can—if there is a true increase—be in any way linked to an increased prevalence among people of spending time in screen relationships. Surely it is a point worth considering."
But, but Susan...don't you know that people are born autistic, they don't just catch it when they're 14 and setting up a bebo account. Lolz!

I was gratified that Ben Goldacre (cutely) destroyed the argument on Newsnight.

I'd say more about how ridiculous this is but I just found a great post on Stottle's Blog and since it's so much better than anything I could write, anyone interested could pop over there to witness the notion getting a thorough smacking.

27 Feb 2009

More Manure About Autism in the Media

Sweet mother of mercy have they taken leave of their senses. Some dude wrote a totally ridiculous book, and the newspapers give him lots of space to promote his totally wacky notions. Can this be right?

The book is called "The Horse Boy" by Rupert Isaacson. The Times features the book opening with the title,
"Shamans and horses work magic on autistic Rowan
Rupert Isaacson was almost at his wits’ end over his son’s demonic fits, but a riding trip in Mongolia to visit local healers brought an amazing change"
"Demonic fits"...I ask you. How is this stuff cleared for publication, doesn't anyone catch themselves the hell on and think that perhaps such language might be offensive, inaccurate, discriminatory?! And given that the young son of a prominent politician died this week, a child who had epilepsy, couldn't they have thought to be a bit more sensitive in their choice of language.

In the first paragraph of the article we learn that,
"Rowan was autistic: incontinent, uncommunicative and given to fearsome bouts of nerve-shredding screeching, even at home."
But obviously, he couldn't possibly have been (for example) autistic, sweet, cheeky, athletic and into Formula 1. That wouldn't create the same levels of drama.

The article continues as these things tend to (see my post on how to write a book about your autistic child), by explaining how they came to notice the child was different and how he was diagnosed and they were devastated (can't they come up with a new word for this- I suggest dismayed, inconsolable, disconsolate...I'm sure the rest of you will have more suggestions.)

Actually, by the time I'd read that far, I was thinking that this all felt very familiar and I found an earlier Times article lauding Isaacson and his notions. Since then, someone has backed his plan to sell his Mongolian adventure book and film by pitching it as, not just another well-off westerner meeting the natives, but as a quest to cure his poor, suffering son.

Autism is so hot right now.

He tells about the day his child, aged two, ran into the middle of a group of horses and lay on the ground. Luckily he wasn't killed, and his Dad was able to read from the horses' reaction that actually, his son had inherited his "horse gene." I'll bet.

The son got on a horse and IT'S A MIRACLE!!! he said a few words. Why is this always presented as such a big deal? Something strange happened when he was on the horse.
“He began to talk meaningfully, not just babble or recite Thomas the Tank Engine train names,” says Isaacson. “For the time we were together in the saddle there were no tantrums. It became a place of respite and joy.”
While it's nice that the child enjoyed horse riding, his previous speech probably wasn't just "meaningless babble" but was an important stage that all children go though as they're developing the ability to speak. Duncan's early words were almost all repeated phrases for films, and much of it still is, but his speech has real communicative intent.

The article preps us for the truly wacky stuff to come though, "what happened next has no rational explanation." Too flippin' right!
"when Rowan was three, Isaacson brought a group of bushmen from Botswana to the United Nations in New York to protest against land being lost to diamond mining. Their chief shaman, or “wise man”, performed a healing ritual on Rowan. “It was extraordinary,” says his father. “For five days or so it really was like having a normal kid. Rowan’s symptoms started to fall away. The problem was as soon as we went home he tumbled back into the autism.” "
Aw, it must really gall you to see your child tumble into autism. I'm not sure how it happens, but I'll go with it for now. Not wishing to miss a chance to profit from his son inform the world of this miracle, Isaacson had a film crew follow them as they travelled to Mongolia...as you do.

Here's a but more insight into how this father thinks. He;
"believes that shamanic healing works.

“Once you’ve seen enough people with cancer, or snake bites, or dementia or whatever, healed – and the doctors scratching their heads and saying we don’t know where the tumour’s gone, you come to realise it’s a pretty valid system.”"

I'll just let the full stupid of that remark simmer, no further comment is required.


So this is what they did to "help" their autistic child;
"To western eyes the ceremonies they underwent appear bizarre. One Mongolian shaman told them Rowan had been touched by “black energy” in the womb and it was necessary to draw this negative energy away. Another prescribed fermented goat’s milk. A female shaman beat on a drum while summoning spirits with a whirling, dancing prayer. They were hit with reindeer horns and spattered with vodka."
I once met an old woman who called out to Duncan, and told me that he isn't disabled, he's one of the lost tribe of Atlantis and that I was trapping him in a false dimension with my greasy soul and that if I didn't let her snort snuff out of her nostrils on us both, he'd never progress.

Actually, I was lying there.

Yep, my eyes must be western all right as that shaman stuff sounds like a whole big pile of horse manure. Imagine how that child must have been feeling, dragged across the plains and subjected to all those sensory overloading, invasive, unpleasant and ridiculous interventions. He'd have been better off with a bit of The Shamen, which I think Duncan would quite like though he's big into Gwen Stefani these days.

This bit is hilarious;
"As their trek across Mongolia continued, so did Rowan’s progress, despite setbacks – intermittent tantrums that saw him refuse to go near a horse and reduced his father almost to despair. At last they reached the so-called Reindeer people, reputed to have the most powerful shamans. After a ceremony there, Rowan’s incontinence was apparently cured."
So Rowan was acting as any reasonable person would expect. How is incontinence "apparently" cured? And please could someone please teach these people about conflating correlation and causation!
(Duncan only rarely wees in his sleep now, I credit oxtail soup for this breakthrough...Not really.)

I'll bet you can't guess how it ends...oh all right. They've set up a centre to help other children benefit from horses just like Rowan.

The book/film gets masses of coverage in the Daily Mail too, where they've been publishing excerpts from the book. It's toe curling, hippy bull. Here are a few choice phrases,
"my emotionally and physically incontinent son"
"the shaman's assistant passed her spiritual mistress a bottle of vodka, from which she took a hearty pull, then without warning spat the liquid all over Rowan's face and body."
And instead of sweeping your son up and running as fast as possible out of there you let this continue?
"But Rowan was screaming now. Genuine distress. Too much adventure, too tired, too cold, too hungry.
The cameraman rode up to our side, filming from the saddle. 'Put the damn camera away!' I snapped."
Had he forgotten it was he who had arranged the film crew!
"I'd taken the poor boy to his edge and he was now falling apart. 'Help!' he sobbed. 'Help me.' Rowan had his eyes tightly shut now, as he retreated into himself.

This is a very bad thing for an autistic child to do - every autism parent's worst scenario, seeing his child shut down, his nervous system overloaded."
No. This is not my worst scenario, not by a long shot. My son being really sick or in pain or suffering at the hands of another, are much worse scenarios to my mind.

And there plenty more where that came from, as demonstrated in another piece in the Daily Mail:
"My son was diagnosed with autism in the spring of 2004, when he was two. It was like being hit across the face with a baseball bat. Grief and shame engulfed me: weird, irrational shame, as if I had somehow cursed this child by giving him faulty genes, condemned him to a lifetime of living as an alien because of me.
And then came the pain of watching, horrified, as he began to drift away to another place, separated from me as if by thick glass. "
Oh pull yourself together, this is just silly, there is no glass, no drifting. There is just your child with a brain that works in a different way who needs his parents to adapt and meet his slightly alternative needs.
Now came something new: a demonic, almost possessed edge, materialising suddenly out of nowhere.
Again, the demonic thing. What makes these people think it's an acceptable way to label their own children to millions of the reading public?
"Our hope that our son would share a life of adventure with us was dashed.
Instead, our life became a mechanical drudgery of driving from one therapy and assessment appointment to another and dealing with insurance companies, therapists and our son's ever-increasing, inexplicable tantrums"
From the earlier Times article, linked to above, he's explained what these therapies are and some are far from mainstream. Before they went gallivanting east, they were pushing chelation chemicals on the boy. This stuff is dangerous and useless in autism. There is no need to spend time and money chasing a cure. Acceptance, education of self and your child, an optimised environment and knowing what makes your child tick are far more important.

And I can tell Rupert Isaacson, I didn't have to drag my son anywhere. Wherever we are, we're sharing this voyage as a family together, and there may be ups and downs, but I wouldn't want to be travelling with anyone else.

A new blog of quality and interest

Lady has started back on her blog, Looking in Rock Pools. It had previously been set to invited readers only but she wanted to go public and let everyone enjoy her erudite and informative posts. She had abandoned it for almost a year but updated again today. She says she has loads more things to write about and it's all good practise for her. So pop over and say hello to my girl.

26 Feb 2009

Irish Blog Awards- top blogs I discovered

While reading various blogs in the past month or so as part of my duties as one of the many judges, I encountered so many blogs I didn't know existed, not so surprising I know! A few were utterly dire, clearly I won't link to these, but some of them I loved.

Fist of all Daddy or Chips? which seems to be a magpie sort of blog picking up on fun, pretty and shiny things. I'm happy to be corrected if I'm missing layers of deeper meaning, some sort of rage against the system. It's got pop and well built men and more pop and I liked it a lot.

Next I want to highlight Stranded on Gaia which somehow I'd not read before. It's a popular blog, frequently updated with funny as hell stories and rants and some top quality swearing. I'll be back.

I discovered what might be the most beautiful blog of the lot, Lickable Wallpaper. It's by an Irish couple who did the most marvellous thing; quit jobs and everyday safe life to travel the world. The blog records their journey with fantastic photos and makes me so very jealous. (If you're reading Cathy, you'll love this one.)

I met Eddie at 4am or so after the awards when just 4 of us remained sitting around the skewed world-map table (Ireland was shown as x2 times Britain's size) and talking until the cleaners arrived the next morning. We only went to bed in case we were given a cloth and some polish.

I don't know what they're going to do now they have come back home, but I think it would a shame to let such a great blog sit untended.
So Eddie, g'wan and get back to it.

I looked at many amazing photoblogs. These people are all astonishingly talented, but one of those that I loved and which didn't make the shortlist was venividi, a blog by a Polish person living in Cork. I'm no photographer (which I hope doesn't make my praise too limited!) but I thought the images presented were amazing, telling stories, captivating and making me wonder what was happening and wanting to know more about the subject. There was a lively discussion on each post some in Polish and some in English.

Many of the photos were taken in Cork so as I walked around the city on Friday and Saturday, it seemed at times to be that bit more familiar as I spotted scenes and places I'd seen in the blog.

I may think of more in time but that'll do for now. Good on you all for what you've created.

25 Feb 2009

Kissing Maid Marian

Duncan continues to draw and make films on the computer. Usually these days, he is dressed in his short green trousers, and a green t-shirt he customised with a pair of scissors, cutting the sleeves shot and shaping the shirt bottom to medieval style zig-zags, finished off with a yellow hard hat. He got a grey fleece hat a few days ago, and asked me to "read it" (name it) and now he wants me to buy a yellow fleece hat with a bright red feather.

Many times he has presented me with the camera and asked me to take a photo "like that" as he does some move or other. It's videos he wants, not photos and I've made a dozen or so in the past few days. He takes the files and uses movie-making software to add a few effects, text and music then gets me to upload them on YouTube. A few times I've forgotten to log out of my YouTube account on his computer and he has renamed a file or deleted a film. Yesterday however he uploaded 2 films I had never even seen. He did everything in these entirely unaided.

The first is another in his Pinocchio series. He has combined screenshots and downloaded Disney images with his own pictures and set the lot to music from Disney's Dinosaur soundtrack. It seems he has been inspired by an evil Pinocchio YouTube film. He's got screen grabs of this video- I'm going to have to try explaining copyright soon! I hope the maker of that film isn't bothered by having his images used...

The 2nd film is part 10 of the Robin Hood series. In this, he's had me or someone else film him. For most of the film he's trying to kiss Lady, who he's deemed to be Maid Marian, but his hat keeps falling off. he keeps on trying, pausing only to replace the hat and wipe his mouth until he comes up with the solution. Lady and I are cracking up laughing throughout, but he decided in his wisdom to overlay a bit of Black Eyed Peas music. It's a hoot.

He gets his girl in the end.

23 Feb 2009

Irish Blog Awards, great times but how does it work?

I enjoyed myself so much this past weekend. Heading down to Cork for the weekend, staying in a decent hotel and meeting lots of fabulously interesting, opinionated, talented articulate and passionate people. I loved having some time with my beloved little sister and the banter and craic were mighty altogether. The Ladies Tea Party was delightful and the award ceremony was organised and enjoyable. Everyone I met was warm and friendly and all were impressed at how well Damian and all his helpers had managed everything. New friendships were made and old ones strengthened.

It was delightful to return to my family. Gordon met me at the airport with the boys. Thomas blew kisses every time I looked around and smiled at me like a matinee idol, Duncan grinned and held my hand as we drove to pick Lady up from her friend's house. It was a rapturous reception.

Later I had a quick look at the blog which won in my category and was shocked to see that it only started on December 2nd. Now I'll be honest, when the shortlist was announced, I had a quick read through the 4 other "Specialist Blogs" and I thought that the only one that didn't stand a chance of winning was the one that won, Irish Economy. The blog content, while incredibly topical, seemed to me, to be written in a dry textbook style. I fully admit that I only spent a few minutes reading it, whereas I read many posts by the other bloggers, and personally,I was more impressed at their content, style, wit and the level of engagement they had with readers. And what I had taken on first glance to be a blogroll on the Irish Economy blog, was in fact the list of contributors- 24 in total. Each of the other 4 blogs shortlisted are written by just one person.

Now I'm confused about something. Perhaps people will think this is just sour grapes that I didn't win. It's not though...

I was a judge for this year's blog awards. Judging each person's quota of the massive list of nominated blogs began at the beginning of February, only 2 months after the Irish Economy blog commenced. But crucially, the awards nomination rules stipulated that, "to be nominated the Blog has to have been actively blogging between July 15th and December 15th 2008." As a judge, I took this to mean that to be eligible, all blogs (except those nominated for best new blog and best blog post) had to have regular posts in the period stipulated, not that the blog must have had some posts at any point in that time. It never occurred to me to use the 2nd possible meaning. For each blog I judged, I went to the archives and read a large selection of the posts written between July and December and ignored the rest so when I came across blogs that hadn't started until later in the year, I gave them as few marks as possible and wrote my reasons for the low mark in the allotted space. It now seems that other judges interpreted the nomination rules the 2nd way and I fear I have discriminated against many good blogs.

I would appreciate it if Damien or someone who knows, could clarify this. It's too late to do anything about it this year but I hope that by next year, it will be more obvious to those nominating and judging, exactly what the rules are.

PS, I'm really delighted that 3 of the winners were those I nominated; well done, Maman Poulet, Trust Tommy and The Cedar Lounge Revolution, and well done too all the other winners...even if some of you might be glad you weren't judged by me.

17 Feb 2009

Shortlisted for Irish Blog Award

This is utterly smashing. The short list is out for Saturday's Irish Blog Awards and I'm still there in the specialist category. No too bad; about 50 or 60 blogs were nominated in this category, it being the one for all the blogs that don't really fit in anywhere else. This was whittled down to 20 or so in the long list and there are now only five finalists. I'm up with four exceptional blogs:

Best Specialist Blog - Sponsored by iQ Content

Each category has five finalists this year and those I've had a look at are excellent since each blog is judged by about 7 people on merit not popularity. Some of my own favourites didn't make it to the final stage though...boo hoo.

The awards party takes place in Cork on Saturday night. I'm flying down on Friday and meeting my sister who is coming over from London. She'll make sure I behave myself when I'm let loose with no children for a couple of nights in an unfamiliar city. There will be much merriment and unlike last year, I will actually know some others there. I'm looking forward to it.

15 Feb 2009

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.

holding hands

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.

13 Feb 2009

DUP Numpties Dragging us Back to the Stone Age

SO we've already had young Sammy Wilson, Minster for the Environment in the parliament of this peculiar and fought over minuscule corner of our planet, a climate change denialist, block a UK government commissioned TV ad advising people how to reduce consumption and CO2 emissions from their homes.
There's a Royal Society's guide he'd be well advised to read.

Last year the DUP MP Iris Robinson promoted her own brand of bigotry to the world.

Today we hear again from Mervyn Storey, fellow DUP member who not only believes that this whole universe is about 6000 years old, but that it was all put together in just 6 days.

Now the man can believe what he wants as long as he doesn't interfere with my or my children's right to enjoy life free from his fairy tales. But here's the problem; little Mervyn (look at his wee Bash Street Kids face, the tyke!) is threatening the Ulster Museum with legal action if it doesn't represent his fabulous tale alongside its planned exhibition on evolution when it reopens later this year after undergoing a major refurbishment. Mervyn thinks that because he's not the only person living here who believes his astonishing 6 day tale, that he can use equality legislation to force the museum to show nonsense alongside evidence based information! Yes, I know... Worse still, this man chairs the NI education committee. Once again, I'm glad to home-educate.

Walter the Softy Mervyn told the Guardian,
"In the past, when I have written to the museum about necessity to show the public an alternative to Darwin's theory (and let's stress it is still only a theory), they have been quite dismissive."
Argh! He used the "only a theory" thing! From Understanding Evolution, a site Mervyn would learn much from,
"Scientific theories are explanations that are based on lines of evidence, enable valid predictions, and have been tested in many ways. In contrast, there is also a popular definition of theory — a "guess" or "hunch." These conflicting definitions often cause unnecessary confusion about evolution."
In the Guardian article Mervyn attempts to smear Charles Darwin with accusations of racism, when others have recently shown that he was in part motivated by anti-slavery principles,
"In this politically correct society we live in today, if Darwin expressed those views about other peoples of the world now he would not be put on any pedestal."

Asked if humans evolved from monkeys, Storey said: "Certainly not, and there are plenty of other people in this society who don't believe it either."

The chairman of the education committee at the Northern Ireland Assembly said: "I am not against the museum or anywhere else promoting Darwin's theory, but I think it would be in the public's interest to give them an alternative theory as well.

"We are currently because of the anniversary being bombarded with Darwin's theory but there are others in the scientific world who question that thesis and their voices should be heard in publicly funded institutions like the museum."

Darwin may have dispassionately dismissed some peoples as savages in one of his books, which wrong as that is, must be seen in light of the prevailing attitudes of his time and class.

Moreover, if Mervyn reckons only those with politically correct views by today's standards should be on pedestals, he should hire a truck to knock down most of the public statues in this province...and sack many of his party colleagues.

I am looking forward to the Ulster Museum's reopening. It was a fusty but fun place to visit before, and I'm sure after it's make-over, it will be even better. No doubt we will visit often as part of our learning voyage, but I don't want to have to negotiate frankly incorrect exhibitions in a place of learning and science.

Praise be then that the museum has pledged to do the right thing and will,

"house galleries and exhibitions of international significance interpreted in line with excellent scholarship and research. Within the permanent science galleries we will explain the conventional scientific theories internationally accepted by scholars and scientists to describe life on earth from the earliest evidence of fossils. This is consistent with approaches taken by museums of renown across the world." [emphasis mine.]
Boo to backwards pulling politicians, hooray for well run museums.

12 Feb 2009

Darwin Day 2009

Happy Darwin Day human animals!

Clearly in the home of a biologist and (I may have been rubbish but...) an ex-physicist, a day dedicated to honouring the great man and science in general is not going to pass by unnoticed.

I was reading to Lady and Thomas about Charles Darwin and his work. We talked about how he was fascinated by all the different species he observed on his travels and wanted to find a way to explain such diversity. We mentioned how the generations before Darwin thought there were only a few hundred types of animal, as many believed literally that they'd all had to fit on Noah's Ark. Thomas didn't know that story so Lady enlightened him. "Ah," said he, "it's like Evan Almighty". Well, close enough. But as I explained, by Darwin's time scientists and explorers already knew there were far too many species to fit in a boat ("unless it was as big as the world"-T). And Darwin was really puzzled about why this was, and after he read a book about people, poverty and the struggle for survival, he decided to apply those ideas to animals. But he knew his theory would upset a lot of people so he had to go carefully and he worked hard for years, collecting samples and writing letters, gaining evidence and working out the details of his theory before he felt he had to let other people know.

We read a little bit about barnacles since the big guy studied them for years. Lady already knew that they're crustaceans. Both were surprised to discover that they catch food with their feet, that they're hermaphrodites (cool new word) and best of all, that they have the longest penis of the animal kingdom relevant to their length.

Later Thomas was telling Gordon what he'd learned; Charles Darwin apparently, built a huge boat during a flood.

Teaching fail!

But Thomas did remember what he'd learned about barnacles somehow!

Today we met Dean outside his hospital and had a late lunch at McD's since we don't do dine-in, then drove up to the zoo to have some Darwin Day appropriate fun. It was 2.45 when we arrived but sadly we were not allowed in as they close to visitors at 2.30 in the winter. Boy did I feel llama-ish. I thought of invoking the occasion to see if I could convince the man to let us have just an hour or so to wander around but I wasn't up to it.

So we went to the playground by the beach. Lady and Duncan spent much time on the beach, he throwing stones into the sea while she collected interesting shells and examined seaweed and various bits of slimy stuff she found lying around. She's a natural naturalist. Thomas, not being a fan of the beach when it's cold, shimmied up poles and swung on ropes and other peculiar monkey like things. Actually, I suppose he was demonstrating our primate origins, so that was very suitable for the day too.

Back home, I baked a cake and Lady helped to decorate it. We all had a nice piece of Darwin's birthday cake, and Thomas made a toast, "cheers to Darwin, even though he's dead."

(Oh and I was in the local paper.)

11 Feb 2009

Who wants to win "Autism's False Prophets"?

This week, people around the world learned of Jeni Barnett's ignorance and how her radio station, LBC, attempted to stifle debate with legal threats. As explained so elegantly on Autism News Beat, Jeni is a,
"British actress who feels obligated to share what she knows about vaccines and measles. But since she knows so little, Barnet was compelled to fill the rest of her three hour time slot with anti-vaccine talking points, addle-pated weltanschauung, and other assorted brain farts."
From the wonderful worlds of autism and vaccine quackery, and sadly the two are inextricably linked, we also learned this week of Andrew Wakefield's incompetence/falsification of data (the only possible explanations for what happened).

In a bid to restore balance to the universe, I shall give away a copy of Paul Offit's wonderful book, "Autism's False Prophets."

I must get around to doing a proper review soon, but for now, although I wish he'd looked at the behaviorist's claims with the same rationalism as those of the vaccine causation cranks, and though I oppose the harsh words on autism of one contributor, it is a fine book. It details the history of the false association of autism with vaccines, just part of the anti-science story exemplified by Jeni Barnett and LBC. Clearly, liar/extreme incompetent anti-scientist Andrew Wakefield has a prominent role in the tale, which is highly readable, a bit of a page turner even. If you have children and are concerned about having them vaccinated, read this, and realise that the whole sorry mess was manufactured out of nothing. The various vested interests are laid out in full. Offit's is open about his own role as a specialist in infectious diseases and co-inventor of a flu vaccine.

So if you want a copy, no matter where in the world you are, just leave a comment below and tell me who is your autism hero and why, and who is your autism anti-hero and why. I'll have one of the children pick a name at random and then I'll get the book sent out.

To get you started, here are a few names, a mixture of heroes and zeroes, (hotties and notties...sorry):

Wakefield, Leitch, O'Leary, Offit, Shattock, Shattuck, Lovaas, Orac, Dawson, Stanton, McCarthy, Leary, Geier, Seidel, Baron-Cohen, Rimland and so on...

Get at it. The winner will be chosen on February 25.

8 Feb 2009

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.

7 Feb 2009

Action for Children abolish odious ad early

The monster was saddened by his premature dismissal.

Something smells good today.

Our coalition of bloggers, Facebook users, disability organisations and exceedingly obliging autism professionals, have partially succeeded. Action for Children had previously expressed their intention to air the monstrous autism ad on television until February 15 in emails to Barbara Jacobs and to Mike Stanton:
"Action for Children is a major provider of services for disabled children, including some with autism. We have other significant areas of work as well, and are a leading charity working with over 178,000 of the most vulnerable children, young people and their family members.

The advert will be running until the 15th February. If you would like to further your complaint or concerns about our advertisements then you can do this by contacting the Advertising Standards Authority at www.asa.org.uk They will look in to your complaint and if your concerns are upheld then we will be instructed to change or remove the advertising." (my emphasis)
But they announced yesterday that it shall now end early on February 8. This capitulation to the huge wave of protest, bolstered by over TWO THOUSAND people joining the "Let's stop "Action for Children" demonising autistic children" Facebook group I created less than a fortnight ago, can be found on their blog:
"Thanks very much to everybody who has commented on and contacted us about Dan's story.

We had always scheduled the advertising campaign to finish on 8 February and so Sunday will be the last day that the advert runs. I wanted to let everyone who is interested know that we have genuinely listened to the different perspectives that have been expressed. We have been and will continue to take these views into account and learn the lessons as we go along. We do appreciate that people feel strongly about the areas in which we work - as do we - and it's essential that we listen to these views." (my emphasis)
It's funny that they should say this. When you read the response Action for Children have given to every one of us who complained to them, it's clear that apart from a mix up about how they chose to present "Dan's" part in the creative process (did he draw the pictures or did he just approve the ad?) they have not listened to our carefully worded and detailed concerns. We've spoken of the damage it will do to the self esteem of autistic people, how it adds to the false, damaging rhetoric about autism and perpetuates the myth of autism as a shell, hence playing into the hand of the charlatans who offer false cures that release the "normal" child trapped inside the "autism monster."

Perhaps they will now realise though, that there are lessons they must learn from what has happened. I hope so.

Of course this doesn't end here. The ad is still on their website and YouTube channel. They had intended to run a postcard campaign which would use images from the Dan slide show, and there have been ads in newspapers and posters on the London Underground. The Advertising Standards Agency have yet to make a decision on the complaints they received about the ad. If anyone wants to upload their own complaint, email me for a copy of my "5 minute guide to complaining to the ASA."

Like PETA and their laughable "got autism" billboards and NYU's pathetic "ransom notes" Action for Children are realising that you don't mess with the autistic community and their allies.

3 Feb 2009

Action for Children: arrant hypocrisy

I've been reading a document that is full of excellent advice on how to portray children in film and photographs (PDF link). According to the authors, images used in publicity material must portray a:
"A positive message – Children are at the centre of everything we do, and we know for certain that children want to be portrayed in a positive way in the media. There is no point in fighting for children’s rights, if we then undermine this work, by using imagery that they will find offensive. This is in fact one of our organisation’s pledges."
Before I share more of the sensitive and considerate advice contained in this document, I will reveal that the organisation who have pledged that they will not use offensive imagery as it undermines efforts to effect children's rights, is...Action for Children.

The hypocrisy this document has uncovered is astonishing, as the following few exerts demonstrate:
"It is essential that we represent them [children] with dignity, accuracy and fairness."

Screenshot of Action for Children TV ad.

"...use positive imagery that does not exploit children and young people."
Screenshot of Action for Children TV ad.

There is guidance on how to represent children who cannot be photographed due to legal restrictions:
"Creative Services also have a large library of real Service User’s art, which can be another very effective way to give a feeling of the real person, when you can’t show their picture.

Always remember though to only use the art in a genuine context. Say, if you’re talking about an art event, or if you’re talking about the feelings of children in a particular area Action for Children work in."
While Dan's art may (or may not, it's hard to know given the conflicting stories AFC told those of us who complained) have been used in the ad, it was used in a way which negates all the other advice on this document. And just who drew the picture of a little girl struggling to hold the massive heart "burden" placed on her, as the "Nicola" ad makes out, by having a disabled mother? The woman who narrates that ad is in her twenties now.

But Action for Children have yet more tips of portraying children in a sensitive manner:
"We should aim to move beyond stereotypes of children passively receiving services and aim to portray, for example, disabled children involved in activities.
Remember we’re called Action for Children.

This is particularly important if a photograph of a disabled child or young person is being used in isolation. Care should always be taken to ensure that any impact on the children is positive. Disabled children and young people rarely see images of themselves published, so any photograph of them may have a profound effect on their self-image."
Too right! I've heard too many stories of autistic children disturbed by how people like them are depicted in the AFC Dan ad.

The chasm of difference between their stated standards and what they've actually done with their first ever TV ad, is utterly breath taking.
"Action for Children works fearlessly in the most difficult and challenging areas relating to children. We are not afraid of any issue, and know better than anyone the seriousness of the subjects we are dealing with. Because of this, and because we aim to give our service users a voice, all imagery should be authentic and sincere. Use of gratuitous imagery should be avoided at all costs..."
Gratuitous imagery...like a big scary, hairy child-eating monster rampaging about and attacking all the normal people?
"Use of gratuitous imagery should be avoided at all costs..."
Screenshot of Action for Children TV ad.

More wise words from Action for Children on representation via illustrations:
...all images should be real rather than sensational, and should take into account the feelings of the people in them, and referred to by them. The best way to work this out is to consider the context of the image, (how the accompanying text works with it etc), and then use your common sense. If in doubt, ask yourself: “How would I feel if I were portrayed like that in a photograph?”
Real images, not sensational?! What excellent advice! And what a pity they ignored it totally when making these ads. I wonder who from Action for Children decided they'd feel just peachy to be portrayed as a monster when they approved the Dan ad?

Did Action for Children consider context when they superimposed images of a rampaging, child entrapping monster with narration saying, "
My parents sought out help with my autism because it was becoming a pain in the bum"? Were the feelings of people referred to, that is, autistic people, taken into account when AFC decided to put this shockingly bad ad out? Are they considering the feelings of these people when despite many, many letters of protest, comments on their own YouTube channel and the 1665 people who joined the Facebook group protesting the ad, they keep on playing on televisions in the UK? (I'm well aware that AFC are watching the group and the blogs, their ISP has been all over this blog in the past few days, always following Facebook links to get here.)

Action for Children, whoever is reading this, please, do the right thing, follow your own excellent guidelines for portraying children and young people in an ethical, sensitive, respectful and honest manner, and get this gutter level, shock and awe, false, sensationalist and damaging ad taken off our televisions.

2 Feb 2009

Professor Simon Baron-Cohen speaks about Action for Children ad

I've been granted permission to share a recent email I received from Professor Baron-Cohen of the Autism Research Centre at Cambridge University regarding the current advertising campaign by Action for Children:

"Whilst I support any efforts to help children with autism and to alleviate suffering, I hope there will be more thought given to both the language and the imagery we use, to avoid risk of offence. For example, the name of the charity DAN contains the word "Defeat", as if autism is a disease like cancer against which we have to wage war. Autism is a complex mix of disability and strength, and whilst we need to work to find imaginative ways to reduce the disabling aspects, we do not wish to "defeat autism" since this would also eliminate the positive aspects. The latter include an excellent attention to detail, excellent memory for detail, and the ability to focus for long periods on a narrow topic. These features are not just seen in the high-functioning individuals or those with Asperger Syndrome but are seen right across the autistic spectrum. Sometimes these positive aspects can result in remarkable talents.

We need to work to get the balance right, between using treatments for those aspects of autism that need treatment (such as the language difficulties, the epilepsy, the self-injury, the gut issues, or the learning difficulties) and encouraging those aspects of autism that do not need treatment and are special, so that the person can fulfil their potential. An image of a child as a demon in an ad campaign is equally unhelpful if we are to educate the public about autism. These issues, about language and imagery, are important if we take seriously the notion of neurodiversity, and wish to show respect towards those who are neurotypical and neuroatypical."

There is nothing I can add to this but my thanks to Professor Baron-Cohen for adding his voice to those of Professor Tony Attwood, Dr Mitzi Waltz, and renowned authors like Professor Roy Grinker, Donna Williams and Barbara Jacobs, who have all publicly demonstrated their objections to this unethical, misrepresentative and damaging ad.