29 Feb 2008

Mercury and autism; What link?!

An Irish anti-vaccination spokesperson has popped up in the letters page of the Irish Independent. He's hoping to cash in on their recent focus on autism to promote his own crank theories:

In respect of the report that certain TDs are demanding special education classes for autistic children, I recall that some years ago, the Irish Independent reported that the National Adult Literacy Agency claimed that more that 400,000 people in this country had some level of difficulty in reading and writing and that the problem is causing an amount of alarm.

Included were an increasing number of brain-damaged autistic children euphemistically classed as "slow learners". Autism is still on the increase worldwide, and nobody is asking why. We should be concerned about prevention and not education and we no longer can ignore the pharmaceutical link to autism and other infant disorders since the dangers of mercury in infant vaccines
have been known for decades. In the US, where vaccination is compulsory, autism is now an epidemic with an increase of 1,354pc and $90bn (€59.4bn) annual health care costs.

In 1976, one in 10,000 children were diagnosed with autism. By the year 2004 the figure was an one in 166.

Mercury is extremely dangerous to vulnerable infants. We need to bear in mind that when the Hep B and HiB vaccines were added to the recommended schedule of infant jabs the cumulative amount of mercury to which infants were exposed nearly tripled.

At the 2004 Autism One Conference in Chicago, Jeff Sell, the personal injury trial attorney on behalf of vaccine injury litigants, produced a copy of an email written on June 29, 1999 by a former scientist for the US Food and Drug Administration (FDA), Peter Patriarca, which stated:

"I will raise questions about FDA being 'asleep at the switch' for decades, by allowing a potentially hazardous compound to remain in many infant vaccines, and not forcing vaccine firms to exclude it from new products. I will also raise questions about various advisory bodies' aggressive recommendations for use.

"We must keep in mind that the dose of ethyl mercury was not generated by 'rocket science'; conversion of the percentage of Thimerosal to actual micrograms of mercury involves 9th-grade algebra."


I dashed off a quick comment, working to keep it less than 1000 characters as mandated by their software.

1. Autistic people are neither 'brain damaged' nor necessarily, 'slow learners.'
2. The evidence shows that actual autism rates are not increasing.
3. The diagnostic criteria for autism were widened between 1976 and 2004, meaning more people are eligible for the autism label.
4. The proponents of a vaccine link to autism have no evidence to back this claim. Many large scientific studies have failed to make such a connection. The 'Archives of Disease in Childhood' Feb 2008 paper by Baird et al shows no evidence of an MMR-autism link.
5. Thiomersal is no longer used in childhood vaccines in Ireland, or in the USA. It has never been used in the MMR vaccine.
6. The ethyl mercury in thiomersal, is quickly excreted. (see Paediatrics, Feb 2008)
7. A 9 year old email of questionable veracity is of no relevance to these issues.
8. Mercury poisoning bears no resemblance to autism.
9. More children are getting preventable infectious diseases as vaccination rates decrease. Sadly, some die.

If space had allowed, I'm sure I'm sure I could have come up with more. But perhaps it's best I didn't get the opportunity to express what I really think of Mr Carroll's correspondence. It wouldn't have been too lady-like.


Gordon's awards ceremony took place last night. The place was packed, and it was only when we were there that I realised how prestigious it all was. Our < sarcasm> beloved leader < /sarcasm> the First Minister and the Health Minister were in the audience. Gordon was one of only 3 people nominated in his category and I think there were 8 categories. So he was in among the elite in a crowd of about 300. He didn't get the award, not that he was much fussed. But we enjoyed the night out, more so since we're tight and it was free. The awards part wasn't too painful, only those introducing the categories gave a speech and these were succinct and informative, well apart from the woman who droned on about pain and the other who blethered about the danger of BMIs higher than 29, to an audience where at least half fit the bill. I mean, they're important topics but make your point and get off the stage.

Anyway, I was totally proud of Gordon for this local recognition after moving here only 3 years ago and starting his research efforts from scratch.

Somehow I think the Irish Bloggers bash will be a bit less stuffy and a bit more fun. There will hardly be any undercover armed bodyguards there, but you never know who any blogger really is and for all I know, there might be someone there who's a really important person. I'm heading down to Dublin tomorrow with my cousin Miche (hello woman!) and if I don't win, she's liable to tear a few strips of whoever beats me! We're staying in the hotel where the award ceremony is taking place, making it much easier to proudly stride/slink in embarrassment/stagger woozily away at the end of the night. We won't know a being there, well not at the start of the night anyway. So anyone reading this who'll be going, if you see 2 northern women looking a bit lost, ask us to join your gang.

27 Feb 2008

Wired on autism

Who'd have guessed, a (mostly) accurate, informative article about autism in the media!

The article in Wired, features Amanda Baggs and Michelle Dawson, so I shouldn't be too surprised; they're both incredible, knowledgeable and smart women who have done much to challenge the many myths about autism.

The first interview in the article is with Amanda, and describes how the increasing popularity of her YouTube video, caught the attention of the media;

By 300,000, the TV people came calling, hearts warmed by the story of a young woman's fiery spirit and the rare glimpse into what has long been regarded as the solitary imprisonment of the autistic mind. "I've said a million times that I'm not trapped in my own world,'" Baggs says. "Yet what do most of these news stories lead with? Saying exactly that."
(my emphasis)

How anyone could spout that "trapped" nonsense, especially after watching Amanda's videos, and reading just about anything she has written, is just astonishing, but somehow, some people manage it.

The journalist tells how he got the opinion of an (unfortunately unnamed) "world leading authority on autism" to view the video, and he commented that such a severely autistic person as she couldn't possibly have produced it unaided.
I think someone needs to read and learn some more.

The technological advancements over the past few years have benefited autistic people, perhaps even more than they have benefited everyone else;

Baggs is part of an increasingly visible and highly networked community of autistics. Over the past decade, this group has benefited enormously from the Internet as well as innovations like type-to-speech software. Baggs may never have considered herself trapped in her own world, but thanks to technology, she can communicate with the same speed and specificity as someone using spoken language.

Personally, the community available via the internet, has been invaluable to me, as a parent seeking advice, knowledge and like-minded people.

Amanda describes the growing autistic advocacy movement;

"I remember in '99," she says, "seeing a number of gay pride Web sites. I envied how many there were and wished there was something like that for autism. Now there is." The message: We're here. We're weird. Get used to it.
(my emphasis)

Oh I love it! How much better my son's future will be thanks to the hard work, research and activism of people like Amanda, Michelle, Ed, Autism Diva, Joel, Larry and so many others.

The new approach to autism research by some neuroscientists is described;

[Autism] shouldn't be thought of as a disease to be eradicated. It may be that the autistic brain is not defective but simply different — an example of the variety of human development. These researchers assert that the focus on finding a cure for autism — the disease model — has kept science from asking fundamental questions about how autistic brains function.

This is a much more interesting question.

Neuroscientist Thomas Zeffiro is quoted as saying;

If Amanda Baggs had walked into my clinic five years ago, I would have said she was a low-functioning autistic with significant cognitive impairment. And I would have been totally wrong.

The origins of the categorisation of autism by Kanner and Asperger are described, as well as their views on autistic intelligence;

Kanner spoke of an array of mental skills, "islets of ability" — vocabulary, memory, and problem-solving that "bespeak good intelligence." Asperger, too, was struck by "a particular originality of thought and experience." Yet over the years, those islets attracted scientific interest only when they were amazing — savant-level capabilities in areas such as music, mathematics, and drawing. For the millions of people with autism who weren't savants, the general view was that their condition was tragic, their brainpower lacking.
and later

In 1943, Kanner wrote that while many of the children he examined "were at one time or another looked upon as feebleminded, they are all unquestionably endowed with good cognitive potentialities."

Why were the observations of the first two autism researchers on the matter of intelligence, almost ignored?

Also featured in the Wired article, is Laurent Mottron, a psychiatrist working in Montreal and who said;
"I wanted to go as far as I could to show that their perception — their brains — are totally different." Not damaged. Not dysfunctional. Just different.
Mottron has focused on the enhanced visual, spatial, and auditory skills of many autistic people when compared to neurotypicals, whereas most other researchers ignore what they term these "anomalous peaks of ability," to focus on the better funded questions like what is wrong, what causes it and how do we cure it.

I found this section most interesting;

Mottron draws a parallel with homosexuality. Until 1974, psychiatry's bible, the Diagnostic and Statistical Manual of Mental Disorders, described being gay as a mental illness. Someday, Mottron says, we'll look back on today's ideas about autism with the same sense of shame that we now feel when talking about psychology's pre-1974 views on sexuality. "We want to break the idea that autism should definitely be suppressed," he says.

The article continues with a brief profile of Michelle Dawson, and her unconventional route into autism research, and her recent first authorship of a study called "The Level and Nature of Autistic Intelligence." This work compared two types of test used to assess intelligence and:

suggests the Wechsler scores give only a glimpse of the autistics' intelligence, whereas the Raven — the gold standard of fluid intelligence testing — reveals the true, or at least truer, level of general intelligence.

The Wechsler Scale is described as one which;

assesses crystallized skills like acquired vocabulary, making correct change, or knowing that milk goes in the fridge and cereal in the cupboard — learned information that most people intuit or recall almost automatically.

As such, it must be recognised that this is an inappropriate tool to use with people who have difficulty with verbal communication. Dawson is paraphrased as saying;

you wouldn't give a blind person a test heavily dependent on vision and interpret their poor score as an accurate measure of intelligence.

Indeed. It can be hoped that other autism researchers follow her lead, and that it becomes common practice to use the obviously more suitable Raven test in the future.

Obviously, the usual journalistic balance is achieved by quoting those who disagree with this direction;

In the vast majority of journal articles, autism is referred to as a disorder, and the majority of neuro-psychiatric experts will tell you that the description fits — something is wrong with the autistic brain. UCSF's Merzenich, who agrees that conventional intelligence-testing tools are misleading, still doesn't think the difference model makes sense. Many autistics are probably smarter than we think, he says. But there's little question that more severe autism is characterized by what Merzenich terms "grossly abnormal" brain development that can lead to a "catastrophic end state." Denying this reality, he says, is misguided. Yale's Volkmar likens it to telling a physically disabled person: "You don't need a wheelchair. Walk!"

Volkmar's remark is nonsensical and misguided. No-one is suggesting such a thing. More accurate research can only benefit autistic people. Knowing how my son's brain works, will help me know how to target his education better, to suit his skills and difficulties. Knowing that many, or most autistic people are much more intelligent than supposed, means there is a moral imperative to help them to find better ways of communicating, since that is usually the primary difficulty. How much effort has really been spent on trying to teach the autistic people languishing in group homes, how to type, use picture symbols, sign language, or other forms of augmentative communication. I would say this work is the absolute opposite of what Volkmar claims; it's more like, "Here, have a wheelchair, you can become mobile."

The Wired article continues;

Should autism be treated? Yes, says Baggs, it should be treated with respect. "People aren't interested in us functioning with the brains we have," she says, because autism is considered to be outside the range of normal variability. "I don't fit the stereotype of autism. But who does?" she asks, hammering especially hard on the keyboard. "The definition of autism is so fluid and changing every few years." What's exciting, she says, is that Mottron and other scientists have "found universal strengths where others usually look for universal deficits." Neuro-cognitive science, she says, is finally catching up to what she and many other adults with autism have been saying all along.

This is great news and can only benefit people like my son.

(Amanda would like people to know that "treated with respect" was a quote from D.J. Savarese, and another misleading part of the interview is mentioned in her latest blog post.)

25 Feb 2008

His own vision

On Sunday morning, we went to the animal rescue centre to walk a dog, something we've done a few times now and which Lady in particular, just loves to do. Duncan wasn't in the mood. He was irritable and insisted on being carried, so I had to walk him back to the car while Gordon carried on with the other 2. It probably didn't help that he was dressed in shorts. He had utterly refused to wear long trousers. He's going through a Noddy phase, so besides the shorts he had on an orange top and a Santa hat; the closest approximation to a Noddy hat in the dressing up box.

So he sat in the car listening to High School Musical songs on my MP3 player. He likes Get'cha Head in the Game best. I think he's going to be using this device more and more, as a nice way of blocking out excess information and keeping, (altie term alert) centred.

He didn't want to get out of the car when we got home, so I stayed with him for a while and he let me know how angry he was with all his 'baddest' characters. I reminded him that I'm Kala (the kind gorilla who rescued baby Tarzan in the Disney film, a role he assigned to me) and I sang "You'll be in my heart" to him. He climbed into my lap and calmed right down, ready to go back inside to play Roller Coaster Tycoon 3.

Later Lady and Thomas and I walked to the beach to attend a dog show, Scrufts, especially for mixed breed dogs. It was a cold but clear day, and the green in front of the sea is such a pleasant spot. Hundreds of gorgeous dogs were around, and no dirt! See, dog owners can do right. The compere was pantomime dame type character whom I've never seen before, but apparently is a local celebrity.

We enjoyed the sheep dog display, with ducks. It was good until some ejit's unleashed mutt ran into the ring scattering the ducks and trying to pin one down.

Anyway we were cold and hungry so we bought ice-creams (naturally) and went home.

In the afternoon, I was helping Duncan with his RCT3 game. I noticed that he had laid a load of paths to make the words "Disney home video"! He had placed a water ride next to it, this apparently was the sea for the Little Mermaid. He had placed entertainers on the letter paths, all dressed up and representing, to him, various Little Mermaid characters.

He is such an independent thinker. The same trait that leads to difficulty, when he doesn't get his way with things he wants to have and do, also leads to these ideas and ways of adapting games, toys, furniture or whatever to fit his vision. He knows exactly what he wants to achieve and how, and it bugs him when the rest of us, who have the power sometimes, don't just do what he wants us to!

Lastly, I was amused and pleased at his revelation last night after he'd been to the loo. "Thin chips," he said, referencing the frozen fries he'd eaten earlier, "turn into poo...in the stomach."

This is good. He was saying it mostly to himself, but it shows me, what I may have underestimated, that he is continuing to make links, take in information and learn about the wider world.

I credit Lady for having imparted this crucial information. They have a "lift the flap" human body book and greatly enjoy the page on digestion. When I told her about Duncan's announcement, she laughed and said it was because she'd shown him the book and its page about the "regime of eating a pear." I think she meant "process" but at least she's trying out her extended vocabulary!

22 Feb 2008

What do I know

The Irish media's coverage of ABA continues.

Last Sunday, there was an opinion piece entitled "Disgraceful system that has failed or children." Writer Marc Coleman states that "What is happening with autism calls on our resources of outrage." But just a few lines later he writes, "Thank God, I have no experience of autism in my immediate family: in Ireland that would be some cross to bear."

Is anyone else outraged at this disgusting statement? How dare he say people like my son are a cross to bear.

He then tells the story of a friend of his who rang him to apologise that he wouldn't be able to attend his wedding, as the friend's child was about to start treatment that same day. This child didn't have cancer or an illness that meant "treatment" couldn't be postponed for a day, no, the child was autistic.

Coleman then totes up the cost of autism on Irish society, the burden these people place on the economy, basing his figure on a UK study. He comes up with the figure of €100m a year; the cost of institutionalising a child with autism for the rest of their life. Because, he thinks, that's the only alternative to ABA.


He then says;

With a success rate of 50 per cent, the return on investment of an extra €50,000 for four years of Applied Behavioural Analysis leads to savings per child to the exchequer of €1.4m. And even if that figure is an overestimate, with around 6,000 children estimated to have autism, the return to the exchequer over our lifetime will be significant.Of

Of course this is how a clever, worked-out and integrated approach to policy making would work, an approach with a heart, a brain and an ability to combine both. Yes Applied Behavioural Analysis is needed.

A success rate of 50%!!!
What foolishness.

In the Irish Examiner, I read that Michael Ringrose of People with Disabilities Ireland says,

What seems to be accepted by all sides is that the ABA teaching method is appropriate for certain children with autism. What is needed now is to make sure the appropriate system for each child is diagnosed in the first instance but crucially, that it is available to each child, not in a limited way as the current education system dictates but as the child needs it.

I wonder if there are any autistic people on the board of that organisation.

Yesterday's leader in the Irish Independent is supportive of the demands for ABA.

Parents believe ABA is by far the best treatment and this view is backed by many experts, including a prominent member of a task force that advised the Department of Education on autism. The department and the minister reject the exclusive use of ABA and favour a combination of methods. Ms Hanafin says that this view is endorsed by a consensus in the international autism community.

Can both sides be correct? The parents who report phenomenal improvements in their children's condition as a direct result of intensive ABA treatment, or the minister who insists she is simply applying best international practice?

Earlier this week, in these pages, the minister made her case in a reasoned and logical manner. Sadly, for her, many parents of autistic children see this only in terms of love, not logic.

I responded to the online edition, pointing out that not all parents think this way, and that you can have both love and logic. I also briefly outlined how scant the evidence is for ABA, and wrote, "the study people kept referring to as the best evidence, is 21 years old, had major design flaws, and involved the use of harsh aversives; slapping and shouting at the children. Yet people keep quoting this study as evidence for ABA! (The 50% "cure" claim originated with this.)"
I had to keep the comment to under 1000 characters, which didn't seem to apply to some subsequent commenters!

The next commenter got annoyed at what I said, especially the bit about the 21 year old study. But it is true, most of the media stories I have read do make the credulous statement that there's a 50% success rate" or 50% of children are"recovered" using early, intensive ABA, so it is crucial to point out the flaws in this study. This post in the blog Natural Variation, an excellent autism blog, does just that.

One of the comments is from a Mr Mickey Keenan.

What the minister has never understood is that ABA is NOT a METHOD any more than Medicine is a METHOD. Medical SCIENCE and Applied Behaviour Analysis are distinct SCIENCES. Until she gets this right, the minister can't even begin to address funding issues for training in ABA let alone funding for schools. You can't create more ABA schools if you don't have more trained behaviour analysts to work in them.

So, minister, are you right, or are the professionals right? Is ABA simple another METHOD, or is it a SCIENCE? Once you acknowledge that it is a science then you have to concede that it is possible for one 'METHOD' to apply to all children. That "METHOD" is called the SCIENTIFIC METHOD. I sincerely hope you are not saying that you can envisage something other than the scientific method being best for the children.

From all the SHOUTING, and weird statements, I will assume this is not Dr Mickey Keenan, University of Ulster lecturer and ABA specialist.

I'm a lay person, just a mum. I am interested in how autism is reported because the attitudes depicted and disseminated by the media directly and indirectly affect my autistic son. I hate to see the negative language used in some of these stories, the fear of difference and lack of understanding, the assumption that autistic children are so very strange, that they need a wholly separate way of teaching them, one which would never be used with typically developing children. I get upset at the hype and misrepresentation of the scientific basis for ABA, just as I do when people say vaccines cause autism.

It's upsetting that there doesn't seem to be anyone speaking about these things in Ireland. Perhaps everyone else agrees with the idea of ABA funded for all the children whose parents want it, no matter that the reasoning they're using in demanding this is so flawed. But whatever, what I say is not going to change anything.

Words and ideas

Last night, Gordon returned from a work trip to Cairo. He'd been looking forward to visiting Africa for the first time. Lady and Thomas read up on Ancient Egypt while he was gone and Lady wrote about how the pyramids were built, how mummies were made and why. Like most children that age, she liked the gross details, like how the brains of bodies to be mummified, were fished out through the nose. Gordon was lucky enough to see the pyramids and Great Sphinx at Giza

When he got home, he was greeted as a hero by Lady and Thomas who bombed down the stairs and jumped on him. Duncan continued playing Roller Coaster Tycoon 3 on his PC. He always takes a while to get used to his dad's return, even when Gordon has just been to work for the day. But when he was ready, he came over too and demanded to go upstairs to play various rough and tumble games they have invented.

I was listening to Duncan yesterday as he played with Gordon. His language has progressed so much recently. He can verbalise more complicated ideas and concepts. He uses more descriptive words. A few days ago, I was in town with the boys while Lady was at gymnastics class. Duncan asked to go "look at the toy trains." He knew I wasn't going to buy one and was making it clear that he understood this. In the toy shop, he picked up a toy rifle, held it up as if to shoot, and looked at me saying, "It's a gun, it's a toy one. It doesn't make fire." I asked who uses a gun, and he told me it was Clayton (the baddie in Disney's Tarzan), that Clayton is a "bad guy" who shoots the tree, which he does. He wanted me to buy the gun, but I had no money and anyway, I'm not happy with the idea of toy guns. Toy swords, fine, but I'm enough of a wishy washy liberal to feel creeped out at the idea of toy guns, Ah well, it's not that big a deal, and he didn't exactly push it so I can forget it for now. Though, he did pretend the long plastic vacuum cleaner attachment was Clayton's gun yesterday!

I was thinking about Duncan's developing communicative skills. He has always been able to communicate, even if it was taking me by the hand and putting my hand on what he wanted, or by wailing or shouting until I got or did the right thing, or by smiling and turning to me when he was happy and wanted more of whatever we were doing or playing, or running away when he didn't want to do something. But the subtle ideas he is now able to convey, help us all. He also communicates via his pictures and typed titles, and he has started to type things in turn with me, though he's more interested in writing about his characters and logos than asking or answering questions! He is less frustrated that we're not missing his meaning, I'm happier that I can understand him better, and make myself understood better. He might not be happy with everything I say, but what 7 year old thinks his mum always knows best.

18 Feb 2008

In which we drive and enjoy a party

For much of Saturday, we were all in the car traversing the country in a south westerly direction. It was a beautiful, crisp day and somehow, amazingly, everybody was on great form despite the long journey. The clan was gathering to attend my nephew's christening. We arrived at the church about 10 minutes late, but after having travelled for over 150 miles, much of it on windy, narrow roads, that wasn't too bad...for us.

Duncan expressed his desire to go directly to my aunt P's house (she has a nice cuckoo clock and his favourite little dog) about 100 times as we drove. I'd told him that we would go there another day (she lives about 100 miles from our destination), or later, or soon, though he tried hard to pin me down to giving him a more accurate and desirable response.

As I'd expected, he wasn't best pleased when we stopped the car beside a big old church. I went in with Lady and Thomas, leaving Duncan with Gordon in the car. Duncan wanted to come inside to see me shortly after. He came in with his Gameboy, its volume set slightly too loud. He objected when I told him to turn it down, saying loudly 'I'm a bad Hopper' (Bugs Life reference) and 'I'm Cruella de Vil'. I'd expected that the service would only last for about 10 or 15 minutes longer. The priest had other ideas, and was treating the ceremony as a re-education opportunity for all (though it's doubtful how successful this was). He informed the congregation that we'd be there for 40 minutes yet. Yikes! Gordon wisely opted to take our noisy and uninterested boy out again and they went off for a walk. The other two enjoyed waving at their cousins, and eventually we were released to the comfort of the small hotel across the street, for a buffet meal, drinks, chat and for the children, loads of play.

It was a great afternoon. Duncan couldn't stop thinking and asking about the cuckoo clock he had on his mind and looked all over the hotel for one. But he was still out with everyone else, getting more familiar with and to his extended family. He played with Lady for a while, and my sister took him out for a walk, and my dad as always, played with him often. I was holding the baby for a while with Duncan sitting next to me, kissing and and stroking him so gently. I asked if he wanted to sing to baby D. and suggested a possible song. Duncan however opted to sing You'll be in my heart, from Disney's Tarzan. It is, after all, sung to a baby.

Gordon and I really enjoyed the crack (or craic...just for you Miche) of hanging out with the family. They teased me about my blog award nomination; a nomination for 'scowling' (meaning scolding), they called it. Trust your siblings not to let you get conceited!

Lady did her usual Pied Piper thing with all the younger cousins. She had them all playing schools at one stage, (cause she's such an expert on those!) which evolved into a 'Harry Potter' game. They hung out in a small lounge (the Gryffindor common room) drinking lemonade out of bottles, like I used to as a child, on the rare occasion we went to a hotel.

Oh and I need to brag on Gordon's behalf too. He's been nominated for a Northern Ireland Healthcare Award, which is, let's face it, just a bit more prestigious than an Irish Blog Award nomination.

15 Feb 2008

ABA Hyped in Irish Media

I've written a few times about the hype and inaccuracies about ABA in the Irish media recently. Well it continues. Here I examine and summarise some of these articles.

On Wednesday, the Irish parliament debated a motion by opposition party Fine Gael, calling for government funding of as many ABA schools as parents want.

According to the Irish Independent,

Experts say ABA is the best form of education for autistic children, but the Government refuses to provide blanket funding for the therapy.

Who are these experts, and what gives them the authority to say such a thing without evidence?
The reporting of the ABA stories is entirely credulous.

Imagine if some people had developed what they said was a treatment for, say, epilepsy. They have no studies showing increased efficacy of their treatment over other standard therapies, and only one randomised trial, which also showed no benefits, and most of the authority for the claims of this new treatment, came from a poorly written 21 year old study, which combined the treatment with a now outlawed additional drug. Would people be writing this therapy up as the best way to help people with epilepsy? Well, I certainly hope not.
Why then are standards so very low when it comes to autism?

So the motion was lost by a mere 8 votes, and many members of the main government party, Fine Fail, while voting against the motion, criticised their Education Minister. TD (member of parliament) Mary O'Rourke said:

I feel that the door is not fully open within the Department of Education to embracing ABA. The effect ABA has on children with autism is huge.

How does she know this?

Keith Duffy, Boyzone member and Ireland's own 'autism advocate' celebrity, said;

It's very, very simple. If you give a child the appropriate attention and education for four to five years it will cost between €26,000 and €50,000 per year and the child then has a chance of entering mainstream school.
But if you don't do that the child could end up institutionalised by 13 and it will cost the State €3m to €4m over the lifetime of the child to care for them.

Ah, it's our old favourites, the "pay now or pay later" and the "only ABA (or chelation or homeopathy or insert crank therapy of choice here) will save those awful, tragic autistics from lifetime imprisonment" canards.

He describes his 7 year old autistic daughter before ABA;

She had no communication skills, she had no language and her motor skills weren't great.
She fixated on objects and she just lived her in own little world.

But after 5 years of ABA, she is a "completely different child."

Well of course she is! It's to be expected that a 7 year old child is completely different from the child at 2!

The last Irish Independent item (for today at least) is the lengthy article written by Brigid Sinnott, MA, BCBA, a senior behaviour analyst. She states that autistic children, or rather the parents of children with autism, "held little hope of their child developing independent skills or going to their local school with their peers." But then, a new dawn, the ABA missionaries arrived with their ability to break everything down into lots of baby steps, and teach these poor creatures how to learn!

She says of the Irish ABA schools;

These schools provide a scientific and intensive approach to education, which results in significantly greater learning in every area, compared to any other type of 'autism schooling'.
These results from our own ABA schools are absolutely in line with international research studies evaluating the effectiveness of ABA schooling.

She then describes how 40%, or 12 of the students at her own ABA school went on to their local schools, She doesn't say what flavour of autism these particular children had on entering ABA, nor whether they are attending local schools without additional assistance or accommodations. I do hope not.

Unlike a lot of other conditions, children with autism present with needs and abilities very different one from another; they do not learn in the same two or even 10 ways. Therefore, the eclectic model, even with its two or three strategies, will not meet the varied learning needs of most children with autism.

I'd like to know what this 'eclectic' model is. Where is it said that it involves 2 or 3 strategies? I agree with Sinnott that autistic children have a range of needs and abilities, and each one deserves an individualised education with dedicated, knowledgeable teachers. This can easily be accomplished without resorting to a fully ABA driven system.

On the other hand, a child attending an ABA school is accessing a curriculum generated by a detailed assessment of their specific learning needs. No two instructional programmes are the same in an ABA school and each programme is continually being adapted, based on the responses of each child, measured on a daily basis, to their programme of instruction. Each child benefits from an education that is not just autism-specific, but specific to their autism and far superior in meeting their needs than any other method.

The detailed assessment and individualised education programme are needed for every autistic child in every school. Parents would be much better served working on that goal. There is no evidence that the ABA method is far superior than any other method.

Most importantly, the way these learning goals are taught is specific to the way each child learns. ABA has hundreds of well researched, tried and tested strategies. This approach is possible because of the high level of expertise of practitioners in ABA schools. Tutors are typically psychology graduates with lengthy and ongoing training in ABA and supervision is provided by certified behaviour analysts.

This is not needed. The expense in paying for all these ABA trained staff could be much better spent on other resources thereby benefiting a much greater number of autistic children.

When a family is burdened and heartbroken with the news their child has autism, and they encounter ABA -- with the learning and quality of life possibilities it has for their child -- this should be the beginning of hope, not the start of a battle.

Well done, you managed to get the crucial devastation rhetoric into the article.

The worst examples of hype, lies and callousness came from TD Ulick Burke, as quoted in a Galway newspaper;

There are over 900 children currently waiting on speech and language therapy in Galway, despite constant appeals to government to provide further resources for autistic children in the West.

If true, this is a disgrace. I wonder how many of these children are autistic? They are being let down by their government, and parents and educators would do well to take the authorities to task over such a lapse.

This shocking figure was released recently following a parliamentary question from Galway East TD Ulick Burke. The recent decision by the government to refuse to fund Applied Behavioural Analysis for autistic children in Ireland has caused outrage and concern among desperate parents, who believe that this treatment is the only way their children will be able to live an independent life.

I'm getting fed up with the implication that my son will never be able to live an independent life, because he has never undergone ABA.

TD Burke says:

They [the government] are essentially saying that every child should be in the mainstream system. There is no research to back this up. There is 40 years of research to show the that just two years of ABA before a child enters school means that they have a 50 per cent chance of being able to take full advantage of mainstream education and live a full life.

Where have you all hidden this 40 years worth of research? Boy that old Lovaas paper sure does get misrepresented!

Shockingly, Burke continues:

One man I met told me about his son, who has been institutionalised since he was 17 because he didn't get the formative treatment he needed at a young age. He is sitting in a small room for up to 24 hours a day and he will be there for the rest of his life. The stories that you hear are absolutely heart-wrenching and something has to be done about it. All these parents want is what everyone other parent wants, for their child to happy, content and independent. It's just not good enough!

So a man is to be imprisoned in a small room for the rest of his life, for the crime of being autistic! This is a terrible miscarriage of justice. I can assume that the dedicated member of the Republic's Parliament will be working tirelessly for this man, to ensure he is freed from such a fate. It is disgusting that shocking abuses are held up as the alternative to more spending on ABA.

Finally, here's a post I read again recently, describing an alternative to behaviourism in the teaching of autistic children.

14 Feb 2008

Groups and classes

Lady takes piano lessons on Mondays, on Wednesdays she and Thomas have a gymnastics lesson one after the other and on Saturdays, they both attend Ju Jitsu. Right now, Duncan isn't going to any organised classes. I dropped the art class as it was too inflexible, very expensive, and clashed with Lady's gymnastics class meaning we had to leave early each week. So we do art at home.

The gymnastics didn't work out for him either. He's just not ready to take instruction in that way. I'd love for him to try Ju Jitsu when he's older. I'll just have to see what he wants and is capable of.

The 'Saturday club' for disabled children he went to twice, has been postponed indefinitely due to lack of funding and staff. It was only held once a month and it's disgusting that it can't be guaranteed; something like that should by rights be on a few times a week.

But even that, which is set up so that the parents leave their children for just over an hour, wasn't entirely suitable for Duncan, since I was told after the 2nd class, that I'd have to stay with him in future. They couldn't understand, or perhaps cope with him.

But that's OK. He does fine with us and a few other adults who have been able to get to know him well, like my sister and my dad. He is looked after by Gordon's mum for an hour many Saturdays while the rest of us go to the gym. He enjoyed staying with one of my cousins for a few hours before Christmas, though he did boss her about a bit, insisting that she lay on the sofa while he played trains on the floor.

And we do get to do various things together. We go for walks in the forest park, and when it's not too windy, on the beach. We swim every week which is a real highlight for us all. We visit the supermarket a few times a week and while this can still be a bit of a struggle, it's so much easier than it was even a year ago. We get together with family and friends often, and visit lots of cool places like W5 and the Transport Museum. Now that the days are brighter and slightly warmer, I can take the boys to the playground while Lady has her lessons, and they play so well together. In afew minutes, we're all going to the nearby animal rescue centre to walk a dog, trying to get some practice in for when (if) we get a dog for ourselves.

I keep in mind that Duncan is still so young, he is learning loads, he is developing at the pace that's right for him, and as he develops, his own natural interests may lead him to seek out more formalised learning settings. I don't think he's missing out, but I keep an eye out for any new opportunities that may benefit him.

12 Feb 2008

Darwin Day

Today, February 12, is Darwin Day, a time to commemorate the life and work of Charles Darwin, born on this day 199 years ago, and the first person to explain and providence evidence for, the complexity of life on earth via evolution and a process of natural selection. It's also a day to celebrate how the process of science has contributed to human knowledge, understanding and advancement, including a more rigorous, modern theory of evolution.

I had seen this fish image, on the blogs of a few USA homeschoolers and discovered The Evolved Homeschooler Wiki, a list of blogs and web pages by and for home-educators interested in promoting rational explanations for life on earth. I thought it would be an apt image for this day in particular. It never struck me before that I should explicitly indicate that my children would learn about evolution; it's obviously the best explanation of life available and nothing else comes even close to providing a viable alternative. But in the past year, there have been a few instances of encroaching endarkenment in Northern Ireland public life, like a local council voting to write to all their secondary schools, advocating the teaching of creationism (aka intelligent design) and a request to the Eduction Minister, that children will not be penalised for answering science exam questions with creationist answers. Which creation myths would be acceptable, I wonder? (I do teach my children about various creation myths, but would not expect them to be mistaken for science.)

Funniest of all, is the group, with support from some politicians here, who claim that the famous Giant's Causeway rocks were formed about 4500 years ago, during Noah's flood!

Science for my family, is mainly just another aspect of everyday life. It's in the many, many questions the children ask, only a small portion of which I can answer fully from memory. When I don't know enough, everyone knows some of the other places to look; the internet, our books, the library, their Daddy. The children are natural scientists. They try things out, use all their senses, see what happens when...

We use the language of chemistry when we cook together; the solid butter melts, the water boils, steam is a gas, the ingredients, like everything else, are chemicals, the food we eat is broken down by our digestive system and used by our bodies. Physics too is everywhere, in playing with a ball there's momentum, energy, gravity, in the sky there's sunlight, blue sky, rainbows, distant stars, and the only way to explain these phenomenon is by science.

Duncan doesn't really ask questions. With him, right now, it's all about experiences. I talk to him and tell him things but mostly, he learns by watching and doing things for himself. He is curious, but doesn't think of me and Gordon as having the answers. Well, except about things like where the chocolate might be hidden. He wants to discover things for himself, so I have to make resources available for him to do that.

So far, none of them have picked up the notion that science is 'boring' or 'hard'. I don't know if any of them will choose science based careers but I want them to know how to apply rationalism in their lives and to know enough to make good and safe choices.

11 Feb 2008

Short listed for Irish Blog Award!

Well fancy that, this blog is in the short list for the Best Specialist Blog in the 2008 Irish Blog Awards. There's going to be an award ceremony in a Dublin hotel and everything.

This is very cool, and I'm amazed to have been nominated and then included in the short list. The other blogs in this category are;
It's a mixed bunch of blogs and they're mostly more, you know, serious and respectable than this thing. I'm flamin delighted to be considered among them, with my rambling, rants and reminiscing. It's not bad for the puny blog of an Irish housewife!

8 Feb 2008


After all my righteous anger in the previous 2 posts, here's something nice.

I just booked to take all of us to Disneyland in Paris for 3 nights at the end of April. We'll be there on Thomas's 6th birthday. Unlike last year, Duncan is as keen as the others to go. Since the Disneyland hotels don't sleep more than 4 people to a room, and we'd have to book 2 rooms if we want to stay on-site, I decided to ask Gordon's mum if she would like to come with us and share a room with Lady. She does, so all 6 of us will be going.

Duncan sat with me this morning and we looked at all the photos from last year's holiday. We took pictures in the airport, climbing the steps of the aeroplane, on board the plane and in the taxi. We talked about all these stages of the journey, and he seems to be content to do it all. I think the photos help him; seeing familiar faces in those situations may reassure him that it's quite safe.

The children have made a paper chain to count own the days, and I got one of those twee ticker things to stick here too.

Just to get into practice for the forthcoming experiences, Lady and Thomas turned our upstairs hallway into a fancy French restaurant. They put out tables, covered them with tablecloths, added pots of flowers, fixed sheets of shiny paper on the wall in blue, white and red for the French flag, and wrote out menus. They all ate their dinner at the restaurant. Lady dressed up (at Duncan's behest).

Duncan decided to do things properly, so he got a button down shirt from his wardrobe, and a stripy tie requisitioned from Gordon's collection months ago (for Doctor Who costumes) because he wanted to dress up like the people in Ratatouille!

He chose chicken soup from the menu.
Notice the sign on the wall - 'non fumer'! Lady wanted to write 'no smoking' in French, so asked how to write 'smoking'. It's not quite right, but I think her customers got the message!

7 Feb 2008

ABA for Autism at the Irish High Court

The Irish Independent is really working those autism stories this week. I just read another in-depth family interview, this time with the parents who just lost their High Court case to have state funding of their son's ABA programme.

The journalist starts by describing the little boy whose educational provision is being decided, and claims that the Education Minister would "melt to his giddy charms and be humbled by his brave attempts to enter a world that often seems so foreign and frustrating to him." His Parents face a possible €2m legal bill, but the boy is unaware and sits playing a computer game "with a concentration remarkable for an autistic child.

He he! Doesn't the journalist, Gemma O'Doherty, know anything about what is and isn't remarkable for an autistic child! Playing computer games well is not exactly uncommon!

He is said to be able to speak using single words, but his parents say that his speaking at all is a dream come true.

The article continues;

This week, they faced what many ordinary families would consider their worst nightmare -- the prospect of losing their home to pay off a staggering legal bill accumulated in their struggle to force the State to pay for a form of education for Sean known as ABA (Applied Behavioural Analysis). But instead of dwelling on worst-case scenarios and the prospect of financial destitution, their over-riding priority in this never-ending battle with the Minister for Education is as it has always been: the future of their only son and a determination to save him from a life-time of institutional care.

How dare they imply that without ABA, autistic children will face life in an institution? That is utter nonsense.

Brave dad Cian says;

"They can take the shirts off our backs. We've already had to remortgage our home and that's all we have. We don't have off-shore bank accounts or any other assets. Of course it is a huge anxiety hanging over our heads but our focus is on getting the right education for Sean and that will always be the case.

Why Cian, are you insisting on this specific form of schooling for Sean? Why does it have to be ABA? Couldn't the education budget be better spent providing excellent schools for all autistic children, with appropriate levels of staffing, well equipped with learning resources, toys and computers, with speech and occupational therapists available to work with the children? Why pay for expensive ABA training from whatever organisations offer it? It is not the best form of education for autistic children. There is no evidence to say it is.

So then we have the inevitable depiction of Sean's descent into the hell of autism (sarcasm);

During that time, they have watched their little boy slowly emerge from the shell he crawled into when he was just eight months old.

The early signs were ominous. Sean changed from the happy-go-lucky baby he had been in the first months of his life to a withdrawn toddler increasingly making strange in the world around him.

He stopped making eye contact with the people he loved, and the simplest tasks, such as getting into the car or having dinner, turned into tantrum-filled episodes that took their toll on family life.

He dreaded people touching his hair, and became aggressive, banging his head off concrete walls and glass windows. At 18 months, Sean could no longer respond when he was called. At the age of two, he was diagnosed with autism, but the help Cian and Yvonne presumed would automatically kick in never came.

So many autism cliches do these paragraphs contain, autism as a shell - check, ominous signs - check, becoming increasingly withdrawn, lack of eye contact, tantrums, toll on the family, aggressive, head banging, - checkity check.

Sean was diagnosed as having "mild autism" but was sinking deeper into the autistic state, no matter how much they tried to "pull him out of it."

How much easier would it have been if instead of trying to pull him out, they had tried to meet him where he is?

Well anyway, we're informed that he "moved from having mild autism to moderate" and his parents were suckered by the claims of the ABA promoters.

While critics argue that its success is over-hyped and it places a financial strain on education budgets, ABA is internationally proven to be effective in giving autistic children the skills their peers have by teaching them everything step by step. At least one in two children with autism reaps results from ABA and many go onto mainstream school.

Where, I wonder, is the evidence for this international proof of effectiveness. Where, in particular, is the evidence for the astonishing and new to me claim of that last sentence? Is it possible this refers to the 21 year old Lovaas paper, which relied on physical punishment?

We learn that Sean had 5 hours a week of "autism-specific training" later increased to 15 hours, provided by the Department of Education. He then went to an ABA school which was threatened with closure due to funding problems.

The parents claim that ABA was responsible for all sorts of great leaps in Sean's development. They sound like exactly the changes my own son has made in the past few years; increasing abilities, able to go into supermarkets and even on holiday which would have been difficult when he was younger. How much of that can be attributed to ABA and how much to natural progression? I don't doubt that a good individualised education is crucially important, but it doesn't have to be ABA.

So the O'Cuanachains went to court in 2006;

The 68-day hearing, which was seen as a test case for future provision of education for children with autism, became the longest of its kind in the history of the State. But it produced the worst possible outcome for the O'Cuanachains.

Although the High Court awarded the family €61,000 in damages for the State's failure to diagnose and treat Sean's condition when he was a toddler, it found that the Department of Education had no obligation to continue funding ABA units but could continue to follow its own "eclectic" approach to autism, which involves a number of different techniques.

I really pity this family. They have done all this because they really believe it's the best course of action for their child, but without evidence, there is no reason for the education department to do anything else. The mother says;

"No one comes in and interferes with you about the sort of education your child needs. The Department makes it look as if this is something we want for Sean rather than something he desperately needs. It's like saying someone wants heart surgery when they need it to survive. He has been assessed by experts and they have said this is the most appropriate form of schooling for him."

No, non-disabled children do not get to choose what type of state funded education they receive. They just go to one of the local schools, or they pay for it at a private school, or like us, they home-educate. That's the ultimate way of making sure no one interferes with the kind of education your children get. And no, Sean does not need ABA in the same way a person with heart disease needs surgery. That's an unfair comparison. Who are these experts who have said ABA is most appropriate?

They say they are considering "emigrating to a country where Sean's educational needs would be better met."

Oh where could this be I wonder; Canada? - they wouldn't take them, Canada's autism "advocates" have ensured that autism in Canada is such a feared and unwanted condition, that autistic people are barred from emigrating there. Would it be the USA? They think Ireland has expensive health care, whew. The UK? There are even fewer, if any, state funded ABA schools here.

The mum says she fears "that everything Sean has achieved will be taken from him."

How? He's not going to go back in time. He will keep learning as he gets older, and if they concentrate on teaching him and living with him, he'll keep gaining skills and attainments.

"If Sean was a seven-year-old in Norway, he would be getting ABA no big deal. If he lived in New York state, it would be mandatory.

"Places like that have woken up to the fact that early investment saves so much further down the line.

Oh how I hate that, 'invest now and save later' argument. It's meaningless since there's nothing to back it up with.

It ends;

"We have spent almost all of Sean's life begging and pleading for services that should be his automatic right, but we have no regrets. How could you regret fighting for your child? Anyone would do it. We are no different from anyone else."

They are right. He does have an automatic right to an education. But not to ABA.

Edited to add; there's a post up at one of my favourite blogs, about the pros and cons of ABA.

Irish Autism Advocates Obsession with ABA

Yesterday's Irish Independent contained a story about a family with two children who "suffer from autism."
Both our beautiful boys have autism
How we have coped since discovering that ...

County Wicklow parents Cian and Yvonne O'Cuanachain had battled for 68 days in the High Court for the State to provide Applied Behavioural Analysis (ABA) education for their son, Sean, who is autistic. Last week they lost their €2m fight. The courts ruled they had produced insufficient evidence to prove their case, and said they must meet their legal costs. Their's was regarded as a test case, so the verdict spells bad news for thousands of other parents round the country, including Ken and Janice Berry from west Dublin.

These people were not claiming that their son deserves a good, suitable education. They were claiming a very specific style of therapy, one which is often erroneously claimed to be the only treatment for autism with any scientific validity.

The Berrys, in common with many parents, believe that ABA is essential for the educational and social development of many autistic children.

I take issue when a parent's 'belief' is taken as evidence that vaccines caused autism, or that homeopathy helps autism. I take issue with the statement above too; where is the proof that "ABA is essential to the educational and social development" of any autistic children?

The ruling also places a new question mark over over the future of their son, Aaron.

How? Are they claiming that without ABA his future prospects are diminished?

The article then details the "tragedy" of two autism diagnosis in the family, and the delay in attaining these so that they lost, "valuable time in each case."

The boys are 6 and 5 years old. The 6 year old was diagnosed 17 months ago and the 5 year old, 6 months ago. Since the parents noticed signs of developmental delay in their first son when he was only 2, it is disgraceful that they had to wait so long.

The boys' father says;

"Around the age of two, Cathal went into regression," he says. "He had been speaking, he had been saying 'Mammy', 'Daddy', 'Mammy, drink', then suddenly silence, he began to cover his ears as if he couldn't bear sounds," says Janice.

I'm not sure if this can be described as regression. It seems to be to me to be typical of the way autistic children develop, but correct me if I'm wrong.

They learnt the hard way that parents of children with autism have to wait for everything, including assessment, and the waiting list then was two years plus.

Now this is where I think money should be spent. The Irish health authority, rubbish as it is, needs to take responsibility and start supporting these families early, helping them get the paediatric assessments they need as early as possible, so the parents are not left wondering just what is going on, and will be able to adapt their lives to best support their children.

The elder boy, Cathal, was assessed at a centre opened by a voluntary organisation, Irish Autism Action.

The article continues;

"We were told that Cathal had mild autism. He could go to mainstream school, and needed six hours of special needs assistance at school, as well as occupational therapy and speech therapy. For me, it was like getting the prescription. It was a great relief, like: 'Thank God, I have the piece of paper; now we can do something, we can get on with it'," says Ken. "I was floored. It was pure misery and I found it very hard," says Janice.

I'm not sure what was "pure misery" to the mum, but I'll assume it was dealing with the educational authorities.

So their 6 year old attends a mainstream primary school and has a special needs assistant with him in the classroom for five hours a day. His parents have also converted their attic into a classroom where they work with him using flash cards and educational toys, and they pay for a private teacher teaches him "life skills" four hours a week.

At a reassessment of their son last December, he was diagnosed as having "high-functioning autism."

But meanwhile, the unthinkable had happened. A year after Cathal's assessment, their second son, Aaron, was diagnosed with autism, in a more severe form than Cathal's. Aaron has little or no verbal communication, he also needs speech and occupational therapy, but educationally, he will not benefit from mainstream education. Many children with autism do much better in an educational system called Applied Behaviour Analysis (ABA), and Aaron's diagnosis pointed in this direction. "I mourned Aaron. You mourn the child you will never have," said Ken, as Janice nodded in agreement.

Aaron sounds a lot like Duncan, my own autistic son. As for mourning, I can understand that when your child is autistic, most parents are sad at first, since the overwhelming image of autism in wider society is of a condition that is the closest thing to bereavement on this earth, a terrible burden, a dead soul in a live body, devastating, causes 80% of parents to divorce.
Oh my.
I think this is a good time to promote the essay by Jim Sinclair entitled, Don't Mourn for Us.

The Irish Independent article continues;

ABA, a behaviourist approach to children with autism, was pioneered at the University of California. ABA teaches behaviour modification, speech therapy, social skills training, using short intensive teaching periods, with lots of reinforcement and measurable goals. Such early intervention before the age of five and lasting two years seems to greatly help some children with autism both socially and intellectually.
(my emphasis)

All the above is true, but the key word is seems. ABA is just one way of teaching autistic children, but because something seems to help is not a good enough reason to insist on state funding for this particular method.

The article informs that the younger son, Aaron, qualifies for a home tutor for 20 hours per week.
"It is just a matter of luck that she has ABA experience, and because of this, Aaron is coming along well. She has Aaron dressing himself, cleaning his teeth -- she works one-to-one. The bad news is that we will lose her in June and we have no guarantee that her replacement will have the ABA experience. As far as we are concerned, this will make a huge difference to Aaron's progress and development," says Janice.

I don't understand why they are so concerned that the tutor has ABA training. More important, I'd have thought, is that the tutor has a good relationship with their son, is good at finding teaching moments and caters to their son's learning style, whether that be very structured or not, and that their son enjoys spending time with the tutor. I think they have also underestimated the abilities of their son in saying that the tutor 'had' him making all the progress.

They say they can well understand marriages coming a-cropper where there is an autistic child in the family. "It takes its toll on every single aspect of the relationship.

Here is the obligatory reference to autism's awesome powers of destruction.

Kevin Whelan, CEO of Solas, Ireland's first national diagnostic centre for autism, says

"It has been proven worldwide that early accurate diagnosis, coupled with early intensive intervention, increases the child's opportunity for positive development and success. Up until recently, families were waiting 18 months or more to receive a full diagnosis from the HSE, and longer for an assessment of educational and medical needs. This represents very valuable time lost, which can never be regained."

I'd like to see this myth quashed. There is no time window for intervention, after which the damage is irreversible. Autistic people, like anyone else, will continue to learn and develop throughout their lives.

For reasoned critique of the over-hyped claims of the ABA lobby, read the many articles by Michelle Dawson, a researcher in autism. She recently blogged about a UK paper in which the progress of 28 children receiving intensive home-based ABA intervention was compared against that of children attending an autism specific nursery. All the children were autistic and after over 2 years of the various interventions, there were no significant differences in outcome.

She also addresses the claims that there is good scientific evidence for the effectiveness of ABA, among other places, here.

6 Feb 2008


On Duncan's treasured Green Eggs and Ham CD Rom, there's a sample of a story called Stellaluna. He took an interest in this, and looked it up on Google video, finding a film of a woman discussing the book, which he watches and quotes from frequently.

Since he loves this book so much, I ordered him a copy. He was delighted when the postman arrived with his parcel. He immediately started reading the first few pages, then listened as I read the rest.

I'd never heard of Stellaluna before and it's a really lovely story, about a baby fruit bat who is separated from her mother, then sheltered and fed by a bird family. She has to quash her bat ways, of flying by night and sleeping upside down and behave 'properly', like a bird.

Eventually she is reunited with her own mother and rest of the bats. She wants her friends, the baby birds to enjoy the ripe fruit and thrill of night time flying, but they all realise that's not the best thing for birds. The birds and bats discuss their differences and similarities and conclude that in spite of everything, they are good friends.

Duncan has referred to himself as Stellaluna many times, and says I am the mother bat. Then he puts on a small, high voice and says, 'mother, where are you?' and I have to swoop down and wrap my arm-wings around him. He has also pretended to be the mother bat. He put on Lady's dressing gown, tying it tight around his waist, then he stuffed a few soft toys under the robe and wrapped his flappy sleeves around them.

If it wasn't for him, I'd never have heard of this book. I'll just add it to the list of things he's taught me about.

5 Feb 2008

King of cuddles

I've got the best job in the world.

For some reason, my 3 children are all total snuggle monkeys. They like nothing better than to climb into our big bed in the mornings for some hug time.

A few nights ago, I finished reading the latest chapter of Harry Potter and the Philosopher's Stone to Thomas, his choice of bedtime reading, and tucked him in. He asked that I lie with him for a minute to chat and cuddle. He said that he just loved hugging me, he was 'the king of snuggling mummies.' We always have the best discussions at the end of the day. We discussed, as we so often do, life, death, birth and growth. Thomas is jealous of his best friend J. whose mum is pregnant and wants to know why he can't have another brother or sister, after all, J. already has a little brother.

He also informed me that he will love me for a trillion years. I told him that we wouldn't exist for that long, but he said he'd love me anyway even when he's dead. So the questions started about what it's like to be dead, and I said that no-one can know, but it must be like how it was before you were born, except the people still alive remember you and think about you. So he started on about what he remembered from before birth and decided it wasn't a lot.

He wanted to know how he managed to grow inside me, so I told him about how my food was used to make all the bits of the growing baby, just the way the food he eats now gets changed into bits of hair and blood and bones and all the bits of growing boy.

I'm sure that the main way in which he and Lady learn, is from the many conversations we all have about everything under the sun. I don't know the answers to many of their questions, but we always know where to look for them. And anyway, Gordon's quite good at that science and ting. (Boast time, he just was awarded an NIH grant.)

Say it loud; MMR is not linked to autism

Here's something we knew already, the MMR vaccine doesn't cause autism. It prevents measles, mumps and rubella, which is nice, but it's as likely to cause autism as living in a a house with a south facing garden, i.e. not at all!

The latest study, gratifyingly published in the front page of today's Guardian, involved testing the blood of 250 children, all of whom received the MMR, for traces of measles virus. No differences were found between the children diagnosed as autistic and the typically developing children. No signs of bowel disease were discovered either.

This will not convince any of the die hard believers, for whom it's a matter of faith to keep deluding themselves that Wakefield cared for the children he scoped, that all the energy and fight they invested into backing up Wakefield's random notion must be true. Never mind that when you make an extraordinary claim like that, you need some damned good evidence to back it up, and none...zero evidence was forthcoming.

Did the Wakefield faithful read this Daily Mail article last December, "£500,000 for boy left fighting for life after being used as MMR guinea pig."

How was Wakefield caring for Jack Piper, whose bowel was perforated in more than 12 places during surgery at the Royal Free Hospital in North London in 1998? According to High Court papers, Jack's surgery was 'not clinically indicated or justified' and was principally performed to further research into links between autism and bowel conditions.

I can only hope that this study will help reassure parents deciding how best to protect their children from infectious diseases. It would be great if some of those convinced that their own children's autism was caused by the MMR, would reconsider, would stop seeing their children as damaged or poisoned. Too many people have been fleeced by irresponsible charlatans claiming to 'heal' via the various silly or even dangerous methods they employ, from chelation or homeopathy to unnecassarily restricted diet combined with a host of useless supplements.