Tony Attwood slams Action for Children ad

Mike Stanton has posted an email on his blog, which gives the response of Tony Attwood, a well known researcher on autism to the Action for Children ad. We have been given permission to share what he had to say:

“I am very concerned that the advert gives a message that children with autism and Asperger’s syndrome are dangerous and potentially disturbed.

When the child refers to “correct errors in my behaviour” this seems to imply ‘brain washing’ and a sense of guilt for how he behaved.

Many of the behaviours I consider as coping mechanisms for the lack of understanding and respect from other people.

He refers to reacting when people insult him. Those that insulted him need the treatment.”

There is no mistaking it.


There is no way Action for Children can wriggle out of this and try to fob off their damaging mistake by claiming that they were just letting Dan tell his story and saying that when we complain, we're being nasty to the poor autistic boy. This is precisely what they imply in their stock email, and what the few people who have tried to defend the ad on YouTube and on our Facebook group, have said.

I emailed the NAS last week about the ad, as did many other people. They have contacted Action for Children and explained how so many of their members are objecting to the ad, but unfortunately even they were sent the same pathetic excuses as all the rest of us.

I'm well aware that the ASA is receiving loads of complaints about the ad. There is also a Facebook group protesting Action for Children's MS ad. The ASA has been contacted by many about this too.

I hope that Action for Children will learn from all of this. They must commit to involving advocates from the groups they seek to represent. They must ensure that they are not misrepresenting people, or perpetuating dangerous stereotypes. As the slogan goes, nothing about us without us.

Duncan takes over my blog

I've been caught up in efforts to stop the Action for Children demonic autism campaign (now with 625 members!)

But I must still blog as I have been ordered to do so.
The little man created another of his fine, artistic videos. He asked me to upload it to YouTube as usual, but he also asked me to help him annotate it with little speech bubbles. He's more aware of YouTubian innovations than I am!

So he provided the text and I provided my limited technical assistance and we've developed the following masterpiece. Oh, and I was also instructed to, "put it on the blog"!

He asked me to let him type a bit, so here's Duncan's post. He asked me to put his words in italics. I must get him a blog of his own.

The Rugrats are going to the jungle with dinosaurs and eggs and meat of the egg travels the desert. Must wait.
The End

So as asked, here is...Rugrats, The Return of Reptar Rex.

Pinocchio Film by Duncan

Here's another one of Duncan's films. This is one of the less bizarre productions he has created recently.

The film captures some images from Disney's Pinocchio film, the scary scene when the naughty boys, now turned into donkeys, are beaten by the horrid man and packed in boxes to be sent to salt mines.


We had a chat about the film:

Me: So this film is called Pinocchio Part 7. Why is it Part 7?
Duncan: It's the one part 7.

What do the donkeys say?
ooaauuuhh!
[that's his phonetic spelling of the donkey sound on Disney's Pinocchio.]

That sounds like a donkey. Are they frightened?
Yes. They are good donkeys. And then the good Pinocchio donkeys will be happy soon.

Who is the bad man?
It's the circus man.

What is he doing with the donkeys?
He hits them with a stick and they say OOAAUUUHH!

Where does he put the poor donkeys?
On a ship and then the donkeys go home to their good mama.

That's enough.
The end.

Apology to Blogger Blogs I've Spammed Recently

I installed the new Blogger gadget called Blog Links a few months ago. It was nice, allowed me to display the various blogs I enjoy all listed by most recent post date. I was happy to share my favourites and perhaps even alert new readers to these brilliant blogs.

But I have noticed that on the Blogger blogs I'd included in the "Blogs I like" list, loads of spurious backlinks to this blog were being generated somehow. I've read about it and found that it seems to be a glitch in the software and there's nothing I can do to stop these links for now except to remove the gadget. So I've done that and updated my old fashioned link lists instead.

I'd like to apologise to the owners of the blogs hit by the spammy backlink lists. It's an embarrassment to see them pilled at the end of your posts when they're irrelevant. Hopefully it shouldn't happen again, at least not from here.

ACtion for Children: a new film about Dan

I made a video using Bev's improved illustrations.



The Action for Children campaign isn't merely offensive. After all, no one has the right not to be offended. The problem is that it misrepresents autism, portraying it as an external monster to be defeated. The problem is the damage it will do to the self esteem of young autistic people in particular. The problem is the way in which this ad contributes to the mass of misinformation and prejudiced, negative rhetoric about autism in the media and wider society. The problem is, parents of recently diagnosed children will see this advertisement and worry unnecessarily about their children and may be more willing to fall for the false promises of the shamans selling dangerous and expensive, quack autism "treatments."

The comments on our Facebook group, Let's stop "Action for Children" demonising autistic children and on the YouTube page for the "Dan film", speak of the distress and worry this ad is causing autistic people and families with autistic members.

Action for Children seem to have opted to jump on the autism bandwagon, thinking that autism always gets the media interest they seek. They have used the problems of autistic children to raise their profile, but have misrepresented the condition. This is utterly unethical.

As well as the Facebook group, the Autistic Self Advocacy Network have put together an action alert to send a message to Action for Children, their supporter in Parliament, MP Hilary Armstrong and the British Fundraising Standards Board. Unfortunately I wasn't able to sign it as so far it's set up to accept addresses from US residents only. No doubt that will be fixed soon .

Please keep this is mind. Every airing of that ad furthers the potential for damage.

Action for Children Rotten Campaign

I had a reply from Gary Day of Action for Children to my letter of complaint regarding their campaign:

"Thank you for your recent e-mail concerning our current advertising
campaign. I am sorry that the current 'Dan' TV advert has upset you this
was never our intention.

Action for Children's new advert focuses on how we as a charity help to transform the lives of the most vulnerable children and young people. It is focussed on the real story of Dan who has autism. The advert is the second of three, which all take real and different stories from children and young people across our different areas of work.

As a charity we're committed to giving vulnerable children and young people a voice about issues that affect them-and this approach was central to the way we designed and produced the ads, and why we feature real voices and real experiences and are highlighting the story of a child suffering with autism.

Dan tells his own story in his own words, and he chose to name his condition, the drawings that you see were also drawn by Dan, the pictures depict how he saw himself before we as a charity got involved and helped Dan and his family.

Of course we would not intend to cause any distress to anyone who has autism or parents who care for a child with it and hope instead that people will understand that there are organisations like us who are there to give support to parents and children who have the condition, should they need it.

We also hope that through raising the profile of children who have autism and those who look after them, we can help to give a voice to those who are in this situation.

If you would like to complain 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 advert.

Once again I can only apologise for causing you upset and hope I have been able to explain why we are currently airing this advert on TV in its current form.

Yours sincerely

Gary Day
Head of Supporter Care"

I don't think this even approaches a reasonable defence of this revolting advertisement and campaign. I didn't write because I'm upset or offended. It does matter that you will cause distress to autistic people. If you care about that, then do the decent thing and remove the advertisement. Have a look at what Bev has done with the illustrations on her blog.

Though I hope Dan benefited financially as much as ad agency Baby Creative, and "director Dan Sumich, who worked on the David Beckham "Impossible is Nothing" ad campaign for Adidas" that the ad tells his story makes it no less objectionable and disturbing.

Dan's story is tragic. He's blaming himself for the problems he faces and has been taught to regard his autism as a monster to be defeated and that he would be better off acting as non-autistic as possible.

You have portrayed a dangerous and damaging view of autism. This ad will hurt vulnerable young autistic people. It will also reinforce the prejudice that already exists in wider society against autistic people.

The only way you can make this right is the cancel the ad and the web campaign in their current forms. Next time you want to use the problems of autistic children to sell your charity, please seek out the superior knowledge of autistic self-advocate organisations and mainstream autism charities like the NAS.

The Guardian has an article on this campaign:

"Our values of passion, hope and equality continue throughout this campaign," said Polly Neate, executive director of public affairs and communications at AFC. "We deliberately avoid the more traditional charity methods of playing on guilt or shock. In all our work and now our advertising, the focus is on positive outcomes for the most vulnerable children."

How can Polly Neate think the autism ad is not playing on guilt or shock? Hasn't she watched it yet?

I have started a Facebook group called Let's Stop "Action for Children" demonising autistic children. Please join and invite your friends.

We managed to get rid of the NYU "ransom notes" advertisements. We can do it here too if we work together.

Blog posts on the campaign:

• Action for Autism: Action for Children or action against autistic children?
• Asperger Square 8: Dan: The Real Story
• THE NEW REPUBLIC: Autistic Monster Dan (Cured)
• Biodiverse Resistance: Monsters and changelings and charity advertising, oh my
• Whose Planet Is It Anyway?: Destroying the Intolerance Monster
• Andrea's Buzzing About: You Can't
• Existence is Wonderful: The Action for Children Autism Ad: Not Just About The Monster
• Abnormaldiversity: Dan and the Monster Autism
• A gift from god: Action for Children demonise autism
• Six Home Ed in Kent: Action For Children? Don't make me laugh

Please leave a comment if there are any others.

Disney Holiday Film

I fiddled about with some of our Disney holiday snaps and ended up with this film. It's rather epic in length, but every second counts. I'm clearly channelling Kubrick.

The day in pictures

The family ate lunch together. Even Duncan sat/stood at the table with everyone else for a while before plonking himself back down in front of his computer. It's situated just beside the dining table, so at least he was close. These simulated theme parks don't build themselves you know! Unfortunately he opted to watch films about ear wax extraction as we ate. I persuaded him to watch more Morph films first, and watch ear wax films later.
(RIP Tony Hart, a source of joy and inspiration to so many.)

Lady started to work on a volcano kit she'd been given as a gift ages ago. The boys gathered to watch and participate. Duncan was alarmed at the idea of an explosion in the kitchen. I was able to explain that it isn't a real volcano, just a little pretend one for children. He donned the plastic safety glasses and helped with the first activity, a basic demonstration of the effects of coloured water on a mixture of citric acid and sodium bicarbonate. He was impressed, the others were a bit underwhelmed. Next they painted the volcano case and we've left it to dry in preparation for a demonstration of the stunning power of our planet.

The weather wasn't too bad so we headed off to the playground for a while. Duncan ran the length of the tennis courts, throwing his orange "Green Eggs and Ham" book into the air several time. He told me he was doing "the egg travels" and though I don't know the scene he means (from Disney's Dinosaur), I trust his interpretation. Lady did gymnastics moves and pushed her brothers fast in the spinning bowl thing. They have an uncanny tolerance for rotational movement.

Thomas does effortless gorgeousness.

Duncan revs up the spinning bowl thing before launching himself inside.

Pippi waits patiently while her pack frolics.

It has been another good day.

Autism discussion on the radio

Staring me!

I didn't get off to such a good start though.

The taxi was to pick me up at 8.15 am to arrive at the BBC by 8.45. I woke several times in the night, always checking the time on our clock radio. Just after 7am I had to sort out the dog and though I felt wide awake, I went back to bed as I didn't want to sit about worrying for over an hour. The phone rang a while later; I was told my taxi was waiting, and had been outside for 10 minutes. I stupidly told him it was almost an hour early, but no, turns out my clock was an hour late. Yikes!

I managed to get ready quick sharp, aware that given how little time I'd spent on my appearance, I was presenting a face for radio. The taxi man worked some sort of miracle and got me to Broadcasting House on time. I'd a few minutes before we entered the studio and chatted with the lovely Ann Marie, a woman with Asperger's, about the test and the media coverage. She shared my disgust at the comments expressed in the Daily (spit) Mail's disgusting article by the crone Sarler. (I'd link, except it'd make me feel dirty.)

We were shown into the studio. William Crawley was charming and welcomed us while the news was read. Then we listened in as he discussed a story about a soap opera and a crucifix with a vicar and...Minnete (a damaged baby is a damaged family) Marrin, another crone who puts big hate on the disabled young'uns. Oh man I wish she'd been staying for the autism test discussion, I'd have relished the chance to question her!

Below is the show podcast. The autism bit starts after 6 minutes. The BBC ram file link is here.



The segment began with a few "voices from the street," almost all in favour of screening. Then Professor Fitzgerald was introduced. I knew him as the man who specialises in diagnosing the dead. He's written several books linking autism with important and clever historical figures. He defined the condition as a variety of problems, with some people like Frank Pantridge, Joyce and Beckett having a very high IQ while others (1 in 200 he says) exhibit savant skills. He said that if pregnancies with high testosterone were terminated, since you wouldn't know what level of autism it was you'd put humanity at risk as people with autism and Asperger's are going to save us when the sun burns out. He claimed that autism is quite different from Down Syndrome, which isn't associated with genius. He then repeated his theory.

(My thoughts- are the only people who matter geniuses? Also, Simon Baron-Cohen's measurement of testosterone was never intended to be used as a prenatal screening tool.)

A spokesperson from a charity called Antenatal Results and Choices said that they see people make difficult and different decisions after prenatal diagnosis and didn't reckon people would end pregnancies on the possibility that their baby had autism. She didn't think there'd be a national screening but that people who already have severely autistic children who'd say they couldn't cope with another one might want the test. Since not everyone would be tested, autism wouldn't be eliminated because after all, we still have people with Down Syndrome.

(That's nice to know...snark.)

Anne Marie spoke next, giving a definition of Asperger's that matched the learned professor's; these people are on the high end of the spectrum, there's a lack of eye contact, a lack of empathy, etc, but usually with a high IQ and sensory issues. She told how she came to be diagnosed after her daughter, and how it explained some difficulties she's experienced growing up.
Her daughter's diagnosis helped her get educational support and to improve her socialisation difficulties.
(Does she really believe that about empathy?)

Then it was my turn. I was asked that, though I love my son and wouldn't wish for a world without him, what would I say to those mothers who have autism in their family line who would choose to have screening and abort affected fetuses. I thought he said "mothers who have a child with autism in their family."

I answered, after a pause as my mind went blank, that I didn't think it was fair that a child should pass a subjective test to be born, that autistic lives should be as valuable as other lives and that no one can predict the outcome for a child based on a diagnosis just like you can't predict it for other children.

William asked if I thought the issue was quality control, that some people are acceptable while others are not. I agreed and explained that testing for a condition implies that those people are less valuable than those without it.

Then it was the good professor's turn again. He was asked why he made a case for protecting geniuses, but why not protect children with Down Syndrome?

Prof. Fitzgerald agreed but insisted that he was speaking about the survival of the planet. Individual mothers should have the test and make up their own minds.
(That seems to go against the idea of protecting the vulnerable post diagnosis.)
He reckoned it's a question of individual rights versus survival of the species and claimed that genius and learning disability are often found in the same families.

Anne Marie said that society doesn't know enough about autism and Asperger's to make decisions on this. She then said that Asperger's and autistic people like Bill Gates have a lot to offer and should be cherished.

The ARC spokesperson was asked about the risks of the test itself.

(Hold on a minute, what test are you lot discussing here? Do you know something I don't because there is no test yet!)

She answered however by detailing the risks of the amniocentesis test. Baron-Cohen's cohort had the testosterone in amnionic fluid measured that way.

(I think there's a mix up in that people are assuming that this is going to provide the basis for the strictly hypothetical test!)

Prof. Fitzgerald wittered on yet again about the autistic Champions of the Universe, but said it was each woman's individual choice. He then told how 1% of people are autistic. Anne Marie mentioned that many people are not yet diagnosed.

I came in to say that I thought the role of society is very important as it's hard to make a choice while autistic people and families are not supported and I got my little NAS quote in about focusing research on improving the well being of and opportunities for autistic people rather than focusing on cure and prevention.

Eventually Prof. Fitzgerald mentioned that autism is complex and Baron-Cohen's work looked at autistic traits which doesn't correlate to autism. He talked about risk factors in families with an autistic child already.

My final point was that it's difficult to discuss this while the media presentation of autism is so negative and doesn't tell of families which are managing fine and thriving even with children with severe autism "like my son who's just an adorable, quirky, amazing child."

Anne Marie finished by saying that the world could miss out on a lot, there needs to be more acceptance and this goes back to Hitler and the Nazis and the professionals and aspies she knows fear the world would be like Stepford Wives.

I left feeling like I should have said more, but that I'd made a decent effort in my first time speaking on the radio. I'd been nervous, you can hear it in my voice. But it had been a decent discussion. I hope I was able to repesent my view that ALL autistic people have worth.

3 years of The Voyage

I wrote my first post on January 16, 2006. I'm surprised and proud to have stuck to this blogging game for so long when I was never a diarist or much of a writer.

My aims for doing this have been to have a record of our lives and my children's development though I have tended to focus much more on Duncan recently and I rarely now write about our home-education pursuits, except for learning through living. I have changed my layout to display all my favourite blogs, not just those with a disability/autism/home-education/science theme. It's easier to keep up with new posts and hopefully, others reading here might sometimes have a look at something new.

Blogging has been a great way to connect with people and learn from them. I've met some in Real Life and some have become true, close online only friends.

Obviously, I want to keep increasing the numbers of people who read what I go to the bother of writing, and I have received more visitors with each passing year which must be good. OK they are still shitty numbers compared to the bigger blogs. I'm hardy going to change the world with this! Like most of us blogger types, I enjoy an occasional fix of comment crack which some good people have been kind enough to supply.

The biggest surprise and highlight of my year as a blogger was to win an award at the Irish Blogger Awards for Best Specialist Blog. Even had I not won, that was a fantastic experience and was the first time I got to meet some very friendly, funny, welcoming and supportive people and later, it was lovely to join some of these people in contributing a chapter to the Homepages book.

As always I have loved the energy, vision, honesty and power in the efforts of those in the disability/autism blogging communities (you know what section of this I mean) to tackle discrimination, delusion and to improve the lives of people like Duncan.

I hope that in some small way my words will seep out and possibly influence someone somewhere to think differently about autism.

A short mostly happy post

Duncan likes to look at this blog, in particular at his pictures, films and photos. He cuddled beside me just now as I clicked onto the archives for November looking for the link to my "Flying Virgin" post. He smiled at the photo of him sleeping next to me and said, "Mummy is holding Duncan. Mummy is keeping Duncan safe and Duncan is happy on the Virgin aeroplane."

Oh boy, he melts my heart. Being with this amazing child is the antidote to the vicious disablism evident in the comments on a CiF piece in the Guardian yesterday. By the time I read it there were 125 comments so I couldn't even be bothered to address the cruel misunderstandings and insults. Bah.

On another topic, Thomas and Lady both received good news at their gymnastics class yesterday. Both were complimented by a senior coach and advised to change to more advanced classes for children with particular talent and potential. Thomas reckons he'll be an Olympian in time, whereas Lady is just pleased that her dream of getting better at the sport she loves is coming true.

Creating films

Gordon thought of the perfect career for Duncan. He could be a film editor. He'd get to sit at a computer, in a quiet room, and use his brilliant eye for detail and technical abilities. His peculiar overall vision might bring him into dispute with the director though!

OK, I know I'm just spouting and getting way too far ahead of things. But no matter what happens when he's an adult, he's certainly enjoying making films now. Over the past few days he's churned out about 10 films using Windows Movie Maker. He imports a piece of music and a selection of images, some he created from scratch, others he copied from the web and a few that he copied and then customised. He drags each component into place, precisely and in a carefully designed order. Then he adds credits or titles, choosing the text font and style and colour scheme. He types his own text. He adds effects. He may ask me for help in finding a certain effect. Yesterday he called me over, pointed to the image on screen and said, "make it..." as he closed one eye and moved right up to the screen. He didn't have the words to say that he wanted to see the picture "ease in" but now he does. He has learnt how to fade in and out, pan across, and has experimented with other effects. He publishes and saves the film. Then he calls me over and asks me to complete the final stage, upload his masterpiece onto my YouTube channel, letting him type in his choice of title. I think he needs his own channel!

I've added 7 of his films in the past few days. Most of them use Justin Timberlake's "Cry me a river" song; he wanted to use the Black Eyed Peas "Phunk it" but YouTube kept blocking the audio for breaching copyright. Obviously, people will choose to watch Duncan's peculiar little videos rather than pay for a CD or download(!) He's also used the theme music from Disney's Dinosaur film-I expect that'll be blocked eventually too. He loves to watch the films he made on YouTube alongside all his favourites, featuring BBC idents and various logos, Rugrats, Tots TV and Thomas characters.

I think this one is my favourite as it's got more of his own pictures. These guys are from Kinder Eggs, the blue haired fella with the sad face is Oliver, who features heavily in Duncan's work and his friend with purple hair is Siver. There's a nice image of the pair fishing beside their farm house, with a pig in a fence just behind them.

Prenatal tests and curing autism in The Guardian

Checking the Guardian late last night, I saw a glut of autism headlines. The first is New research brings autism screening closer to reality.

Baron-Cohen and his team have just published on their study tracking 250 children, all of whom had amniotic fluid testosterone levels tested prenatally. These non-autistic children's consequent development has been studied until they were 8 years old. I have not managed to source the study paper but on the ARC website I read:

So far we have only conducted studies of typical individual differences and found that foetal testosterone is inversely associated with social development, language development, and empathy; and that foetal testosterone is positively associated with systemizing and number of autistic traits.

So, based on this, the papers are shouting about prenatal screening tests? Baron-Cohen's testosterone theory of autism is not well established or universally accepted. Baron-Cohen seems to accept that the current male/female ratio of autism diagnosis represents the real numbers while other researchers think that women are underdiagnosed.

Moreover, what this study has measured is a few autistic "traits" which is not the same thing as autism. These are just ways of being that vary in the population, it's possible to be a bit less chatty and not much of a party animal and not be autistic! And I wish they'd drop that old canard about autism and reduced empathy. Where is that coming from? It's a dangerous, damaging delusion.

So there's no proven link between high fetal environment testosterone levels and autism, but even if there was, there's no way of telling how each affected child would develop.

Professor Simon Baron-Cohen, director of the research team, told the Guardian that it is now time to start considering where society stands on the issue.

"If there was a prenatal test for autism, would this be desirable? What would we lose if children with autistic spectrum disorder were eliminated from the population?" he said. "We should start debating this. There is a test for Down's syndrome and that is legal and parents exercise their right to choose termination, but autism is often linked with talent. It is a different kind of condition."

The research could, equally controversially, open the way for treatment, he said. "We could do something about it. Some researchers or drug companies might see this as an opportunity to develop a pre-natal treatment. There are drugs that block testosterone. But whether we'd want to would be a different matter."

Why is it necessary to find a way to prevent people who perceive the world differently, people like my son, with all their strengths, problems, disabilities and talents from existing? Even if this theory was to lead to a prenatal screening tool, which I very much hope it doesn't as it would have little sensitivity and specificity, need we discuss the right of autistic people to be born? It's also irrelevant that autistic people can have special talents that benefit society and that if there was a way of telling if a child could grow up to be (sarcasm) a useful, clever autist or a wasteful, stupid autist with absolutely nothing to offer (/sarcasm) the test would be more useful. Heck, if everyone had to prove their usefulness to society to be allowed to exist, the world's population would take a big drop.

It is also very premature to be thinking about using this bit of research to work on curative techniques.

An NAS spokesperson says that currently gaining a diagnosis can take too long, and while better diagnostic tests would help speed that up:

"It is important to stress that everyone with autism has the potential to make a unique and valued contribution to society. It is not always the autism that is a problem. It is other people and a lack of services and support."

I can think of no reason save the chance to offer abortions, why a better diagnostic test has to be done prenatally.

The final few paragraphs quote Vivienne Nathanson, the head pf ethics at the BMA. These made me feel queasy. This is how the ethicist of a leading doctor's group puts it:

"The question, then, is are we comfortable with [testing] for a disorder which is life-limiting in terms of opportunities and experience, rather than life-ending?" she said.

"My guess is that society would look at it like Down's syndrome," she said. "There are people who wouldn't approve of terminations and people who would. If you talk to parents of people with autism, however much they love their children, they find it very difficult. They agonise over their child's limited life opportunities and some of them say it would have been better not to have had the child and some don't."

The more complicated ethical issue would be that of treatment in the womb, she said. "You get to the situation where you have a very great difficulty if families say we wouldn't want to be tested. As a society, do we accept that people can refuse tests when the outcome can make a difference to that unborn child?"

That final sentence sends chills up my spine: "As a society, do we accept that people can refuse tests when the outcome can make a difference to that unborn child?"
Is it a possibility that people will one day be forced to have these tests?

I also listened to the Guardian podcast by Mike Duran about this and I felt obliged to transcribe some of it. Health editor, Sarah Boseley is introduced and takes on the role of explaining the research. Here's some of what she had to say:

"...It might be possible to test the levels of testosterone around the growing fetus in the womb.
...
This is research done on NORMAL children, not autistic children...we all have some autistic traits; being LESS sociable, being LESS verbally agile, and perhaps LESS empathetic towards other people.
...
Autism spectrum disorder runs a LONG way from the development of MINOR difficult traits such as children not being very sociable and not being very verbally skilled which might lead to learning difficulties right through to people who probably can't lead a normal life outside of an institution, who can't communicate with anybody, who couldn't hold a conversation and somewhere around there also are some very interesting, very BRILLIANT people who perhaps become mathematicians or musicians. What you can't possible know if you have a prenatal test in the womb is what level of autism, what place on the autistic spectrum your child would have.

(My emphasis.)
Who briefed this woman and how can she speak such rubbish? Autistic people are either BRILLIANT or have to be stuck in institutions, unable to converse or communicate in any way!? Too many people have taken the idea of the autism spectrum and apply it rigidly as if it was a linear thing, with each autistic person falling somewhere along a line of "functioning" level, when it's much fuzzier than that. People are good at some things and bad at others, ability to cope varies with time and location, stress levels and accommodations available. A child could cope brilliantly at home but have severe difficulty at a badly optimised school. An adult may do well while at university but flounder in a certain job. Very few (most likely no) autistic people cannot communicate in any way whatsoever.

On the matter of causes of autism, she said:

"...it seems to be a combination of genes and the environment, we don't know what the environmental factors are. But a lot of genes are now being identified, over 100 of them so far, that do have some link with autism and it does look that if we can't have a prenatal test featuring testosterone then one day you may be able to do pre-implantation genetic diagnosis...and you would be able to identify an embryo that tended towards autism and again it could lead to a termination."

Shudder. At least she's not messing around with a story about how this is good news for autistic people as early warning can help parents prepare, no, it's all about getting rid of the damaged goods.

Duran then talks to Charlotte Moore, mum to 2 autistic sons. She says that she doesn't see autism as a disease that has to be eradicated and that the vast majority of autistic people can have a good quality of life provided certain accommodations are made, but these can be difficult to achieve. She says that in the hypothetical situation where pregnant mothers are told that their babies may be autistic, they should try to read about the condition. But she said, it would be hard for them as it's so complex and they have a short time to make their decision. Also, each person has to decided how they would cope with the situation themselves but they should speak to parents of autistic children about what their view is. But the short time available would not give the woman any picture of what her own life would be like. There was no mention of learning from individuals who are themselves autistic.

Duran then asked Moore a question that just shocked me, "Would it depend also on whether the child had other siblings because there are forms of autism which could put those siblings in danger if they manifest violence among other anti-social traits?"

Sweet mother of mercy this is the Guardian! Even for a devil's advocate question, that showed a disgusting level of ignorance, prejudice and callousness. If this guy's going to talk about autistic people, children even, as if they're anti-social sibling beaters (when I'd say it's far more likely that autistic people themselves are at a far higher risk of physical and emotional harm-I can look for evidence for that theory if needed) he will affect the public's perception of the condition and increase the fear and ignorance. Then it's a given that pregnant women will opt to abort the "monsters" they're carrying.

Is there a test to see if the child you're pregnant with will grow up to be a thief, an abuser, a drug dealer, a thug, a user, a murderer? Is autism so much more deserving of eradication than all these?

Thankfully Charlotte Moore says "It's too crude to say you shouldn't have an autistic child because it might damage your other children. I would just reject that."

Duran asks, "Do you welcome this test, doctors presumably would argue that armed with the facts you can prepare for any problems with what the National Autistic Society calls a serious, life-long, disabling condition?" Moore replies that it would be good as:

"most parents can't tell until the child is a toddler sometimes beyond [that s/he has autism] and what happens is that you waste a lot of time acting as if your child is not autistic and maybe making a lot of wrong choices about how, what you do with your child. Where if at least if you'd had the test when you were pregnant and you knew that your child was going to be autistic, then you would be better prepared..."

I don't agree. I want to see basic research on autism but with caveats. The NAS phrased it well:

The National Autistic Society (NAS) welcomes research into all areas which may further our understanding of autism, but it is vital that the information gained from any research is handled responsibly. The rationale for research into autism must always be to improve the well being of and increase the opportunities for people affected by the condition.

Michelle Dawson, is forever saying it and the message has yet to sink in: autistic people deserve to be benefit from and be protected by recognized standards of science and ethics. I look forward to the day this happens.

Guest post by Gordon; A medical expert's assessment of homeopathy

Pure, refreshing, and lacking all medicinal properties.

Oh this is delicious. I had another comment from the person who was unhappy with my assessment of homeopathy recently, and whose contribution was so hilarious that I dedicated a post to answering her/him.

I showed Gordon what this person wrote and he decided that he wanted to write a response:


Homeopathy: a lucrative hoax founded on belief and not evidence
by Gordon

Anonymous wrote, "You may well know chemistry,but you certainly do not know homeopathy..."

I feel that it is important to state some simple facts about homeopathy and why it is not only a belief system founded on the supernatural, but potentially harmful. Yes I am a doctor, yes I do conduct clinical trials and have a passion for pharmacology, so perhaps I'm biased, but here goes....

fact 1. Homeopathy has never demonstrated effectiveness - ever. We define causality in therapeutics by its effectiveness compared with some sort of control. The simplest, easiest control is comparison of the treatment in question with "nothing" or "placebo". Lets say for argument's sake that homeopathy could have a measurable benefit even in the absence of any scientific explanation of how it works. If a benefit can be shown to be causal, all things being equal, homeopathy must demonstrate a greater benefit in persons receiving it compared with nothing at all. Simple as that. Anecdotes, telling of individual cases of suggested benefit are completely meaningless. Why? Because spontaneous remissions and disease stabilization happen in individuals, even in cancer (my speciality). Its the cohort effect that matters and provides the measure of effectiveness ie. benefit in a group of individuals treated either at the same time or one after another.

So...A simple study taking as the "lowest bar", the easiest possible comparator to beat, i.e. nothing, should be able to demonstrate efficacy for homeopathy shouldn't it? Well actually, no it can't....I challenge ANYONE to show me a randomized (all bias removed), prospective study where homeopathy has shown any benefit above "nothing whatsoever". I have no doubt at all, that this will not be possible, ever. The reason is simple, homeopathy is placebo and therefore it will never be possible to demonstrate superiority over "nothing at all". (You know, sometimes in real therapeutics, we try to demonstrate non-inferiority of a new therapy over an old one. We need large numbers, often thousands of patients to do this. Taking this to its logical conclusion with comparison of one placebo over another, the numbers of patients required to show a difference could be astronomically large or even infinite. Meaning in reality that such a difference can never be shown!)

The anecdotes that we see relating to little Timmy's "asthma getting better" time and time again are utterly meaningless. It demonstrates a total failure on the part of those believers purporting efficacy of homeopathy to simply consider whether the suggested effects of this approach can work when the numbers of treated individuals are greater than one. Do we ever see response rates? Of course we don't. Could anyone out there tell me for example if the homeopathic treatment response rate for urticaria (or anything) is say 20%? I thought not. Running even a non-randomized study, gathering data to present some simple evidence of efficacy is too much and would collapse the arguments of the "homeopathy-peddler". Asking for randomized data may be a little much I suppose, but benefit rates? That should simple right ? Even that is too much, and would expose the lucrative fraud that is homeopathy.

Fact 2. Science has no explanation for how homeopathy could work in the first place. It simply goes against natural science, the thing that brought us, yes you guessed it....civilization including the Internet that you are reading this on!!!

Take a quick look at the history of science and it is clear that we have a thorough but still very incomplete knowledge of how our universe works. Certainly some of the 20th century's great scientific discoveries revealed some uncomfortable truths (take that to mean testable theories that hold true), as revealed through the wonders of quantum mechanics or relativity as two examples.

We all know that if a cake is divided into more and more parts, we ultimately get less and less. Try dividing a cake into 100, million pieces sometime and see how much cake you end up with! At the heart of pharmacology, the study of drugs that do work, the law of mass action is central. Simply put, the action of any agent is related to how much of it is around.... How easy is that to understand? Homeopathy believers, take this fundamental natural law, equivalent to saying "things fall when dropped", and turn it on its head. "No", they say, "..When things become dilute, they acquire a potency!" Moreover, they state that this potency can modify biological systems in a direction that can be exploited as therapy.

A quick examination of this homeopathic principle makes it clear that it is rooted in belief and nothing else. The same sort of belief that has led humans throughout history to believe in ghosts, elves, sun gods, animal sacrifice, etc...Without evoking some supernatural unproven, invented "idea" about what happens when a substance becomes dilute, my smallest child can tell you that if you mix a fruit cordial with enough water, it tastes like water...That's because folks, and here's the rub...With enough dilution that's what it becomes. But you all know that don't you?

A very famous pharmacologist, the late Jaques Benveniste, who I once respected for his work on platelet activating factor and allergy, caused one hell of a fuss some years back when he proposed that homeopathic dilutions of an allergy inducing antibody called IgE could still cause degranulation of histamine from mast cells, an event linked to allergy. Quite rightly he stated this as an observation without explanation but one which was statistically robust. I found this fascinating. It was reported in Nature which I can tell you has one hell of a high bar for evidence based reporting. However, Benviniste was discredited when it shown that robust reproduction of his experiments were not possible. The claims were false. Dilutions of an active agent cannot retain their initial activity. This original Benveniste paper is I believe, the closest homeopathy ever came to being considered science. Since then (1988), the truth has been somewhat different.

fact 3. Duping vulnerable individuals with falsehood is financially lucrative and is not subject to any regulatory control, compared with real medicines.
Lets be absolutely clear about this. Homeopathy is a big business and makes its peddlers money. Homeopathy is quasi-therapeutics, based on no evidence, yet somehow is legal ! I'm baffled at this. For a real drug, it requires years of painstaking research in the laboratory and clinic. Years and perhaps hundreds of thousands, may be millions of US dollars worth of funding before it even achieves a licence (IND) to allow the first experiments or clinical trials in human beings. Even then, the rate of success of a drug getting into routine practice after reaching this massively important stage is very low, around 10%. Studies are then required to establish the right dose (phase 1), and whether there is any meaningful activity (phase 2). Only when this has been shown, is there the opportunity to conduct the definitive randomized controlled phase III trial. Only if the activity of the experimental drug "beats" this control, will the study be positive (you would be astonished at how many negative phase III trials are out there). Even with a positive phase III trial, there is no guarantee that an agent will "change clinical practice", because the difference in efficacy (often minimal) could be insufficient to justify the costs of that new medicine. Agencies such as the FDA and the EMEA are around to make sure that before a licence to sell a drug as a medicine is given, the evidence base for its activity is sound.

Given all of this investment in what is a "odds-against" enterprise, is it surprising that massive global pharmaceutical companies are needed to deliver new medicines ? But wait, there is another way. Lets just state that a homeopathic remedy is effective, bypass of this testing and regulatory bullshit and just get our remedies to market!! That way we can sell a panoply of remedies for all sorts of not really serious ailments. Rashes, bowel issues, you know the sort.....Of course its good business. If I were of lower moral standing I would have done this ages ago myself. Imagine how much money I could get if I used my MD PhD credentials to con people into paying for my magic water!

Perhaps the only justification for not sanctioning homeopathists is that they peddle water, and as we all know water is harmless....Or is it ? I think that people duped into spending money on homeopathy need to have the best information about what they are spending money on. If they were appropriately informed, I think the market would rightly collapse. Why should "water" be a solution for patients where conventional cancer therapy fails to work (for example), in the absence of any evidence, either laboratory-based or early trial evidence of activity. Much better for a patient to be offered treatment in a clinical trial. The possibility that asthmatics or any other patients with potentially life threatening conditions might be treated with homeopathy, fills me with horror. But then, perhaps the homeopathist would defer to the conventional therapy for "such serious conditions". Now that's what I call a cop out. Where are your balls homeopathists???

The idea that the UK National Health Service in the UK uses tax payers money to fund a homeopathic hospital at a time when there is major rationing and lack of availability of effective therapy, is nothing short of scandalous. But this is a fight that other distinguished colleagues have waged for sometime.

In summary, homeopathy is an often lucrative belief system based on no evidence whatsoever. Let me say that again: no evidence whatsoever. Those who support it have no grounds to do so. They are in the same camp as people who believe in astrology or any other supernatural phenomena. Their view of the natural world is distorted by the invented, rather than the demonstrable. Homeopathy is dangerous because it offers something that does not exist, efficacy without evidence. I have no problem about people spending their hard earned bucks on sugar pills (hell, we still have cigarettes to get rid of). What I do have a problem with, are the liars who purport to know something about this universe that we live in, without the slightest evidence, then attempt to convince the most intellectually vulnerable in our society to believe it too. Its just wrong. I invite anyone reading this who disagrees, to challenge what I have said. I don't expect much of a response....

In which we see a bit of what goes on in his mind

Duncan still likes to make pictures with the computer. He's been very busy for the past few days making a film containing images he's taken from the web mixed with some of his own art work, set to his current favourite music; Phunk It by the Black Eyed Peas, or a piece from the Disney Dinosaur soundtrack. He asked me to upload one of the films to YouTube and the music was silenced immediately for breaking copyright. Bah, my kid's weirdly wonderful video that'll be viewed by perhaps 2 other users (both landing on it by mistake) will hardly prevent people buying the album!
Ach well. Dems the rules I suppose.

Still, I'm impressed as always by what he comes up with. As well as his colourful creations, the titles he chooses often make me laugh. Here's a selection of his latest pieces.

Put Upon Percy

I like the man in the red hard-hat. There's a real sense of impending danger here.
The sign says, "NO CRASHING."

Dinosaurs

These 2 rogues are, so I'm told, the naughty egg thieves. The orange thing on the smaller one's head is the egg. The brown things dangling off their chins are their "cock-a-loodle doos!"

Dinosaurs and Pantsores and Giforgows.

I'm not sure where the last 2 terms came from but he's insisted for a while now that they are the names of a couple of dinosaur breeds. And who am I to argue? There's a fair bit of Thomas & Friends references included here too.

Sooty
He's quite simply, a superdog.

My new put upon Percy
Even the sun is freaking out about this situation!

Scaredy engines

Can you blame them! I'd be scared too if I was emitting red smoke and a couple of fearsome ghosts were after me!

WOW MR MR DUNCAN OW SHOW WITH MY PENEX

Hmm, I'm not even going to try to interpret that one. It's interesting though.

That's enough for now. I've got to cook him some hard spaghetti with grated Red Leicester cheese and tomato ketchup, one of his favourites.

Good shop

I took the children shopping yesterday. My brother discovered the existence of a decent sports shop next to our local Tesco store when he was here last week. Not that he had to have great exploration skills, he just ambled into the shop and had a peek upstairs, something I'd not thought to try.

Duncan needed shoes so off we go to see if anything is suitable. Almost as soon as we're in and up the stairs, he notices a light blue hooded top. "Get that one, it's a Rugrats top." I check the size and price and all's well so I pick it up. He shrugs off his navy top and dons the new one immediately. Then since he's trying to emulate Chuckie who only ever wears shorts, he rolls his trouser legs up to his knees. I have to say, he looks a bit odd. He dashes around the shop looking for other Rugrat inspired items. Eventually I get him to come and look at the shoes. It's hard to source a pair of size ones and keep up with a whirling boy. He wants red shoes, but finding none, settles for black, Velcro fastening trainers. He spots a pair of trousers adorned with pictures of Spongebob Squarepants. As he's grown out of some trousers recently, I allow him to get these too, but am unprepared for his decision to pull his own trousers down right in the middle of the shop to try to change. I convince him to wait until I've paid. As soon as that's done he's off with the attempted stripping again so I usher them all to a changing room. As expected the trousers are long enough but much too big on the waist and need a belt. Never mind, Duncan wants to tuck the blue top inside the trousers. It's a look that makes me think of Steptoe, for some reason.

So clothes bought, I turn my attention to our food needs. Trawling the big supermarkets can be a pain when you've a boy who runs. Sometimes I take his Major buggy but it's a bugger to steer and makes it hard to gather the groceries. Sometimes he squeezes into the toddler seats on the trolleys; there aren't many 8 year olds who can manage that. For the first time I notice that Tesco has these disabled child trolleys in store, with a wide seat facing the person pushing. Perfect for Duncan! He happily sat down and was strapped in and we had the easiest scoot around a shop for ages.

See how a little adaptation can help!

(Oh, he wants "square purple glasses" and to paint a "yellow planet" on his top now.)

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.

Nominate now for 2009 Irish Blog Awards

I've just done it. How about you?

It's time to nominate your favourites for the Irish Blog Awards, 2009. So go on then, shoo!

New Year Ruminations

As the old year ended I thought about how things are and what I need to change to be happier. It turns out that some major adjustments are required so I had to work out how to achieve them. I've been stressed and worried about things but I think there's been a resolution and though I'm fearful, I'm now also hopeful about the months ahead.

The Christmas holiday wasn't as happy as it could have been, but there were some brilliant times. The children were delighted with their gifts on Christmas morning. Duncan liked the Roller Coaster Tycoon CD Rom more than anything, even the cuckoo clock. Yep, I got one, and the blasted bird doesn't go out and in properly on the hour. I would have returned it to the online shop, but I see he's already customised it by painting the bird.

Thomas has been in Doctor Who heaven with his haul of DVDs, including a set from some of the old series. Lady likes her fancy new leotard and spent much time upside down against a wall or doing the splits on the floor.

I enjoyed a night out in the pub with a gang of cousins and my brother and his family stayed with us for a couple of nights; they finally saw our beach. I was also very happy to spend some time with one of my oldest and dearest friends who lives in New York. She's just as wonderful as ever.

Duncan has been hard work. He's very shouty and grouchy. I've not been able to figure out how to deal with it yet but it's hard. He's been emulating this awful YouTube video of an angry German kid, and keeps bashing his computer and disc boxes. It may be, actually it probably is, that he's picking up on my own less than optimal mood. He's my personal barometer. We were in Ikea yesterday and he roared and shouted, utterly obsessed with getting an ice-cream from the cafe behind the tills. I was very close to just heading off to the car with him many times.

It's likely that that as well as autism, as his paediatrician pointed out, he also has ADHD and this is what causes many of the difficulties. He has next to no impulse control: he's all about the Id. He can be very focused on tasks of his choosing but it's just about impossible to get him interested in other activities. He's certainly hyperactive, and when we're out places he always dashes off to whatever it is he's interested in. He's highly oppositional. If someone in the family hums or whistles or sings, even on another floor, he shouts at them to be quiet. He hates it when people express pleasure when eating, a yum or appreciative 'mmm' is countered with his angry, 'yuck!' If someone is counting down, he'll often start counting up and saying 'go' is likely to make him shout 'stop!'

I have to think again about how I can help him more. He's smart and cute, funny and loving. He's my darling boy and I'm proud of him. It's important that I see what can be changed in him or in his environment and what must be tolerated.