We're NOT supporting Andrew Wakefield Facebook Group

I started a group on Facebook for everyone who wishes to record their opinion on the Andrew Wakefield GMC rulings. Anyone who is/is closely connected to an autistic person is especially
welcome. Join here:

Parents and autistic people supporting GMC rulings against Andrew Wakefield

I want to show that we do not all support Andrew Wakefield who despite the damning verdict against him, is unrepentant and said in his recent statement "It remains for me to thank the parents whose commitment and loyalty has been extraordinary."

The newspapers writing about the guilty man also refer to his support base and in some ways imply that parents of autistic children are more inclined to stand behind the disgraced doctor.
Please join the group and spread the word to show how we really feel about a man who has been found guilty of a disgraceful lack of ethics, a "callous disregard for the suffering of children" and who has done so much to denigrate autistic people and increase the spread of preventable infectious disease.

The Autism Gut Question

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

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

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

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

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

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

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

and

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

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

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

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

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

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

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

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

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

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

One quack clinic goes, another springs up

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

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

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

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

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

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

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

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

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

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

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

So Gordon met Polly

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Polly continues with the myth of the autism gut:

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

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

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

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

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

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

She comes out with an amazing admission:

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

The Autism File magazine is one such source of misinformation.

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

All her hard work?! Polly continues;

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

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

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

The unsubstantiated claims of biomedical believers are shared;

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

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

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

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

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

Money talks.

The article continues;

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

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

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

Bitter, failing, sad and ignorant, that's me!

I don't often check the yahoo email account listed on my sidebar. But sometimes when I do I discover a pleasant email from someone who wanted to talk in a more private space than the blog comments, or it might be an offer to join some blog aggregator or to advertise some product or other.

So this was new, I'm not sure whether it should be described as hate mail or an offer of assistance. See what you think, the many spelling errors are as found. I will respond in red.

Sent: Thursday, 12 February, 2009 11:03:20
Subject: Your son's autism can be cured..with homeopathy..mine was!!!

I couldn't resist emailing you, as the contempt and bitterness you exhibit is quite understandable and yet very unsettling. What? Where have I exhibited contempt and bitterness, and if I had, why should it be understandable? I too had a son who was autistic..although mildly on the spectrum...he was clearly on the the spectrum...I spent over a year searching fervently for a way to heal my boy. That sounds jolly good fun. My son could never be described as "mildly on the spectrum", oh no, he's your full strength autistic! I did all the protocol of the so call DAN doctors and the gluten and caisen free diets...Methyl-B-12 shots...Occupational therapies etc. the whole nine yards...nothing helped, no surprise there, that stuff is all hokum until I tried a new form of external homeopathy. Oh, here it comes...First of all, I have to comment, and to probably no avail, as I can see your posture is quite fixed on your mindset about homeopathy, but let me just be frank...and clear...your ignorance and contempt for a medicine that has cured and ameliorated conditions for several centuries Prove it is quite nauseating to say the least. Surely if I'm making you so nauseous you can find the right type of magic water to cure it! Get over your Irish stubborness Nope. If my stubbornness (I take it that's what you meant) is what saves me from falling for the hype of cranks, then long may it last. (I'm Irish too And?) and start looking at the real science seriously, you're promoting bollix and asking me to look at the "real science"?! I hate to sound too brash and arrogant myself so stop yourself, but you see...my happening upon your website was none the least a detour upon my journey which is to do research on autism as I am currently writting a book about the subject.Flippin' heck, she's writing a book! I can only imagine what a publisher's dream that will be based on the quality of writing here. I also have over 15 years of a science and medical background shall I take your word on it? I wonder what exactly this "science and medical background" amounts to including an understandiing of quantum physics Don't be daft! I've a degree and a postgraduate degree in physics and I wouldn't claim to have much of an understanding of quantum physics, more than you though I'd bet! and that vital force that you so readily scoff at where is it? share your evidence and I shall scoff no longer. Quite frankly, if you think that your son is uncurable my son is perfectly autistic, I feel no desire nor need to cure him. I only want to parent him to be the best he can...I feel great sadness towards you and your family particularly your son you can stuff your great sadness, we're all getting along quite delightfully well...as you are failing him with that kind of attitude No, you are entirely wrong. I want to extend my help to you if you will accept no, as a practitioner liaison who works with children on the spectrum, I feel sad for those children using the exact same cure that brought my son out of his world and into ours, out of his world, into yours, where had he been, Mars? I will extend that therapy to you at cost. no thanks I will not charge you above and beyond what I pay for it...which is about 50 dollars a month...if you want to learn more about it...go to www.quackeryforkids.com or www.expensivecrap.com let me know what you want to do. I would be happy to help you heal your son...and it can be done. Also check out www.sawyoucoming.org as they employ the same patch therapy that I used with great results.

I look foward to hearing from you, I'll bet you did

Most Sincerely,
J Brown
Patient Liaison

Quit being so feckin stubborn and drink the kool-aid, bejaysus.

What on earth was all that about? Did she want to insult me, or bring me on as a customer? Did she want to tell me about her dodgy companies and quacktastic web sites or piss me off and accuse me of failing my child?

What an odd, pathetic email.

Horse Mum gets in touch

I was very interested to read a few comments on my "Horse Boy" blog post from Kristin Neff, the mother of the child featured in the book. I don't think she likes what I had to say.
I am happy to respond to her comments but since she wrote so much, I thought it warranted a separate blog post.
My comments will be in red below.

Comment 1

Might be a good idea to read the book before slamming it.

I have not slammed the book so much as the media articles I have read and listened to about the book and by the book's author. I have read several long excerpts from the book in a UK newspaper and listened to a detailed and uncritical radio interview with your husband on Irish radio. I have made it clear that my criticisms are based on all these.

It's amazing how quick people are to judge things, with almost no information to go on.

I disagree that I have judged with "no information". The book has featured prominently in many major newspapers and magazines. All the information made public in these gives me plenty to make a judgement on.

I am Rowan's mother, subject of the Horseboy, and I can tell you that I feel like I used to when people would judge me at the supermarket when Rowan was having a tantrum, assuming I was a horrible mother and Rowan a brat, without knowing anything about us at all.

Do you really call your son "Horseboy"? [Edit, she never called him "Horseboy", I made an error and apologise for this.] Wow. I'm sorry that you are upset at my criticism's of your husband's articles and what I have read of his book. It appears from what I have seen, that most people think what you've done is just great and admirable. I don't. When you decided to make your story so widely known you must have expected there would be some people who would be shocked and offended at what you have done and have said. Neither do I agree that this is comparable to strangers making snap judgements in supermarkets.

I hope people take more time to learn about you and understand your personal stories before making such harsh and unkind judgments.

People are free to judge me based on what I have made available in my writing here. I have a few detractors, but this is a blog of little importance so I am ignored by most. Whether my criticisms can be deemed harsh and unkind is, I think, a matter of opinion.

And in fact, based on ther viewpoints you've expressed here, I think many of you will actually find resonance in the book. We've had hundreds of e-mails from other autism parents (those who have actually read the book or seen the documentary) who've expressed their gratitude that we were able to raise awareness of the incredible struggles but incredible love we have for our wonderful children.

That's nice. I think there's already plenty of awareness of our struggles and love and not enough about respecting autistic people and their needs.

(In fact, this is why our next book will about about the Gifts of Autism, because we believe that for every problem posed by autism there is a corresponding gift that us supposedly "normal" people can learn from.)

Smart move, I'm sure there will be a market for it too.

By the way, the first thing we did when we got the advance was to open up a non-profit riding center for families who couldn't otherwise afford hippo-therapy (soaking up a huge portion of the advance). We wanted to give back to the autism community for our incredible good fortune.

Cool, so the poor children in the area can ride for free or at a greatly reduced cost? Do you offer shamanic healing at your centre or is it more like the many great equestrian centres already out there working with disabled people?

I hope all of you also find happiness, fulfilment, and prosperity in your lives. Autism parents are some of the bravest and most loving people around. Can't we support each other?

Thank you for your kind wishes. Some parents of autistic people are brave and kind, some aren't. I'll support those whom I think are working to make life better for people like my son and I'll speak out against those who I see preaching nonsense and disablist language about people like him.

Comment 2

Also, since I suspect that the views expressed in this blog will make it unlikely many will actually read the book, you might be interested in this passaage from the end of the book (p. 348-349).

"Rowan is still autistic - his essence, his many talents, are all tied up with it. He has been healed of the terrible dysfunctions that afficted him - his physical and emotional incontinence, his neurological firestorms, his anxiety and hyperacivity.

Kristin, I consider the expression "emotional and physical incontinence" to be a revolting way of describing a child. What do you mean also by "neurological firestorms"? Could this be temper tantrums? I agree we all wish for our children to grow out of incontinence, have much fewer tantrums, be less anxious and hyperactive. I also agree that such development, which usually takes longer for autistic children, does not mean that the person is no longer autistic.

But he has not been cured. Nor would I want him to be. To "cure" him, in terms of trying to tear the autism out, now seems to me completely wrong Why can't he exist between the worlds, with a foot in both, as many neurotypical people do? Think of immigrants to the United States, living with one foot in their home language and culture, the other in the West, walking in two worlds. It is a rich place to be. Can Rowan keep learning the skills necessary to swim in our world while retaining the magic of his own? It seems a tangible dream.

I like this sentiment a lot.

Comment 3

And one final thing. One of the sad aspects of many people's dismissive reactions to the idea that we consulted traditional healers and shamans to help our son is the incredible arrogance and ethonocentrism of Westerns who believe that no healing tradition has any validity except their own.

I dismiss that which has never been shown to work. If shamans can prove their effectiveness then let them do their healing thing everywhere. That's not arrogant "ethnocentrism" just applied reason.

Humans had to find ways to improve well-being and happiness for thousands of years before modern science came along, and many of these healing traditions are very effective.

That something has existed for a long time is no proof that it is worth continuing with, especially not when dealing with health and medicine. If the ancient remedy is shown to work (like willow bark) it is used in modern medicine. There is just medicine that works and that which doesn't.

(Not saying that science isn't also wonderful of course, and by the way we do use traditional therapies such as ABA as well, but do we have to restrict and limit our options?)

Yes I read an article about your son 2 years ago in the Times, that you used, "speech and occupational therapy, applied behavioural analysis, chelation to get rid of toxins, supplements to adjust the child’s chemistry this way or that." These techniques were not based on science either, chelation in particular is potentially fatal. Still you make out that it's the horses and shaman stuff that has wrought this amazing, no, miraculous change in your son? How do you know? It's nice that you think science is wonderful. I think so too and apply a bit of scientific thinking in weighing up stories like yours.

If you were to spend any time around traditional cultures, you'd observe their beauty and integrity for yourself. My husband has been a tireless advocate for the rights of indigenous cultures, spending years of his life, without pay, to advocate for their land rights (he played a key role in the San of Southern Africa winning one of the largest land claims in history.) But people are so quick to ridicule and dismiss what they don't understand.

I'm sure there are many fascinating, beautiful and wonderful aspects to cultures you have been around. I am happy that your husband works to advocate with these. I do not ridicule the people, but I do not wish to adopt methods of medicine that have no basis in evidence, no matter how lovely the people practicing it are nor how long they have used it.

As parents of autistic children we understand this attitude all too well don't we, when people make fun of and dismiss our children without bothering to try to know or understand them? Isn't there a better way? A way where love and tolerance and patience and compassion allow us to open our hearts and minds to each other, rather than viciously attacking what is different and unfamiliar?

Not similar at all. The people are not being dismissed, just their non effective medicine. I do not viciously attack them at all, they perhaps are limited in the medicine available to them in far flung corners of the world. I have not viciously attacked you or your husband either, but I am irritated that you who should know better can believe in magic, can use your son to market a book in a dramatic way that jumps on the autism bandwagon, choose to use offensive and disablist language in describing autism and your son and promote nonsensical healing "exorcism" ceremonies that can only be described as abusive.

Johnny Ball, what happened to you?

I listened to Stephen Nolan's bumptious phone-in show on local radio this morning. He had a few people on discussing our climate change denier Minister for the Environment, Sammy Wilson and his latest kerfuffle in Stormont. The Belfast Telegraph reports that his department admitted that he, "did not consult any scientific articles when deciding not to air the Westminster-sponsored Act on CO2 ads."

Naw, our Sammy came up with that grand idea off his own back. He knows better that them scientists with their ungodly evidence.

He called another assembly member the 'carbon king of Stormont' because he lives 100 miles from the parliament building and has to drive, public transport links in NI being utterly pathetic, and getting worse the further west you go.

But then, once the drone of whinging politicians blended to innocuous background noise to my kitchen cleaning endeavours, Johnny Ball was on the air again, blustering about matters he doesn't understand and ruining my good opinion of him.

He used to be an exuberant presenter of children's TV shows about maths and science, and is fondly remembered by nerdy types of a certain age:



But he has turned cranky in his old age. He said today that "Sammy Wilson is right."

"People are talking about a carbon footprint. Carbon dioxide is half as heavy as air again. It falls to the ground and it feeds the plants. A tree is made of CO2, it puts the oxygen back into the atmosphere and takes the carbon. 85% of every tree is CO2...
When you're talking about CO2 you're helping the plants, you could say you're greening the planet."

I think that here, Johnny has employed the logical fallacy known as the WTF? fallacy.



But he goes on (and on and on) and eventually, near the end of the interview, he gets to the "dangers of scientific consensus." He even has examples, 100 years ago, so Johnny says, all the scientists agreed about eugenics. I think he's trying to make the point that we're more enlightened now and have moved on from those bad old days, something I'm not so sure about. He also mentions how in Darwin's day, the consensus was against him. But he neglects to mention that the science consensus changed to adopt the new ideas when they were explained, understood and backed up by huge amounts of evidence. Does Johnny really think that scientific consensus is always dangerous? What about our ideas on gravity, germ theory, what about consensus on units of measurement? What a ridiculous argument.

Silly old duffer. And why on earth has he been asked to come on to the programme to talk about climate change? Is it really reasonable for the BBC to allow this man 7 minutes to talk a load of old nonsense, just because he was once a wacky kind of kids TV presenter?

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.

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.

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.)

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.

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.

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....