23 Jul 2008

A Random and Fantabulous Award

I was given this here award by Dave (or d@\/e) and it is the maddest looking thing ever.
It's called the Arte y Pico Award and Dave kindly picked this blog out:

The Voyage that has the tag line Life, family, autism and home education. Sharon deserves an award for this blog which I'm sure helps and influences more people than she'll ever know. It's a valuable research tool for those who study and deal with people that are autistic. A real blog about a real family living in Northern Ireland.

Life is a journey, and love is its boat,
On troubled waters, it keeps us afloat,
When we started this voyage, there was just me and you,
Now gathered round us we have our own crew.

I'm grateful for the lovely words. It would be amazing to think this might help or influence people.

Ah, but how does he know we're real! We could be the construct of someone with too much time on their hands, or even, big-pharma (given my pro-vaccine stance!)

OK, no-one's that strange.

So now I pass the award on and here are the rules:
  1. Pick five blogs that you consider deserve the award for their creativity, design, interesting material, and also for contributing to the blogging community, no matter what language.
  2. Each award has to have the name of the author and also a link to his or her blog to be visited by everyone.
  3. Each award winner has to show the award and put the name and link to the blog that has given her or him the award itself.
  4. The award winner and the one who has given the prize have to show the link of the Arte y Pico blog, so everyone will know the origin of this award.

So here are my picks:

Ed from Ed's autism page writes with passion and understanding. He speaks for himself, but in doing so, helps keep in mind those who have been marginalised and denied a chance to express themselves. Sometimes I have to read his posts a few times to understand his meaning, and sometimes I have to ask him if I got it right. He is unfailingly polite and helpful. He really cares about others, is keen to learn and share what he knows.

The team at Holford Watch keep a close eye on purveyors of woo and nutribollocks. They analyse the many proclamations, media articles and email newsletters produced by and about a mister Patrick Holford in particular, and point out the errors and nonsense contained therein. It's important work; who knows how many people are swayed by the sciencey Holford and his quack ideas on important health issues. Obviously, like any quack worth their feathers, Holford isn't too keen on vaccines.

Bev writes the sublime Asperger Square 8. I'd like to see her cartoons internationally syndicated! She can say so much that is true and important about human dignity, understanding, acceptance teamed with educational and living assistance, in a few illustrations.

Manuel who writes Well Done Fillet, is best waiter in Belfast, if not the world...probably. His stories of the crabbit, the complainers, the crooks and the cooks, are well written and very funny. He has also written a useful guide to diners, with tips of how to dress, order, eat and err, tip. One post in particular was useful to me a wee gurl from the hole of nowhere.

Gimpy writes the well titled Gimpy's Blog, which he says is about "inane witterings and badscience."
He lays into the pathetic "reasoning" behind homeopathy, and was first to write about troubles in the Dore company. Dore are an organisation who preyed on the fears of parents with learning disabled children, to sell their totally unproven therapy. The company collapsed recently, leaving parents who have forked out loads for treatment without refunds and staff without wages. It further demonstrates the lack of ethics in that particular company.

So there you have it. Obviously there are at least 10 more blogs I could nominate, but these all came to mind first. Feel free all of you to participate, or ignore completely as you desire. But I hope you get a wee frisson of pleasure knowing that someone out there appreciates you!

22 Jul 2008

The gang

Lady wanted to know why there aren't many recent pictures of her on here. Fair point.

So here are summer snaps of each of them. That handsome fella is my dad.

You happy now girl?

Notice Thomas is wearing a football top. Two of my four brothers support Manchester United, one is a Liverpool fan and one doesn't really care, but sorta prefers Aston Villa. The fans were competing to indoctrinate Thomas into their own particular tribe (since neither me nor their dad give a monkey's). Thomas went with the uncle who is also his godfather. Well the guy has to have some role in shaping the child, and the one prescribed 6 years ago doesn't really apply with us any more. To solidify his victory, uncle B. immediately presented Thomas with a Man. U. shirt.

So though he knows nothing of the sport, Thomas is now a Man. U. fan.

21 Jul 2008

Wall-E, water and wooded walks.

I hadn't heard of Wall-E until seeing the trailer when I took Lady and Thomas to see Prince Caspian at the cinema. Wow! How had I missed it? It was clearly a masterpiece, and I was very keen to watch it. So we headed off to an early screening on Saturday, hoping the cinema would be less busy then, which it was.

I loved the film; beautiful, touching, hopeful. Duncan sat enthralled for almost all of it, getting a bit jittery towards the end. I did prefer the beginning too, the unspoken action easily understood by everyone, including little autistic boys. But the closing credits brought a few tears to my eyes.

On the spur of the moment, we headed to the Lisburn swimming pool yesterday morning. We've been once before, years ago, and only went this time as our local pool, where I bring the children during term times, doesn't open until 2 on Sundays. We took a wrong turn and had to drive around the city (titter) before finding the place.

Gordon and I took turns to tail Duncan. There are slides and whirlpools and a river thing and pirate ships. It's a great place and we all had a blast. Duncan was too scared to go around the river at first, but as usual, when he felt ready he gave it a go, clinging to my back (and neck, ouch) like a limpet, then increasing in bravery, just holding the tips of my fingers, then telling me to move away altogether. We spent the last half of our time there just floating round and round in the current.

Back home, Gordon cooked; Johnny cakes (adapted recipe, with turmeric and garlic) with callaloo and salt-fish. There are advantages to being part of a "mash-up" family.

We took Pippi for a walk, in behind the train tracks, there's a beautiful woodland path leading back home though a small grove of young oak trees. We only discovered the place a few months ago. Duncan recited "Going on Bear Hunt" as we walked, and Pippi revelled in the smells and sights, bounding with joy and enthusiasm until we got back on the road when she just gave up and had to be coaxed back.

Before bed, and dressed in pyjamas and wellies, sporting yellow goggles from the dressing-up box, and (for reasons known only to himself) an Indian feather head-dress, Duncan declared he was Wall-E and that he needed some rubbish to clear.

20 Jul 2008

Ben Haslam; erosion of parental rights in the UK

Channel 4 news on Monday 14th July, reported on an autistic child called Ben Haslam and his parents, who say their Local Authority (LA) of Bedfordshire is forcing them to decide whether Ben should be taken into care to provide him with the services and education he needs.

Ben has been thriving at an independent, residential school. He has made fantastic progress and is much happier and his parents, who have already spent more than £60,000 in legal costs to have Ben's needs met, were delighted. His mum's face really shone when she said,
It's a pleasure to have him around, it really is.
However, even though the Haslams won their case to have Ben educated at that school, the Local Authority stopped funding his place at the end of last week, having overturned the earlier court decision forcing them to pay for his placement, at the High Court. The Haslams were forced to defend their position, but having lost, now must cover the LA's costs as well as their own.

John Friel, barrister to the Haslam family, says the case raises "important issues about parental rights and the use of voluntary powers" and that autism and parental rights charities "will be extremely concerned by this"

The LA say that the £250,000 cost of Ben's residential school entailed "unreasonable public expenditure." They postulate that Ben's needs can be met by attending the local LA run special school and living in a children's home, costing them £125,000. Effectively, they are giving the parents just one option; put your son into care. They cite a section of the 1989 Children Act, whereby a child can be taken into voluntary care, if the parents agree. The LA claim that this "does not remove parental rights but promotes partnership in meeting a child's needs."

John Friel ends by saying the council's attempt to impose a voluntary care order on good parents, "is objectionable both morally and politically."

He is right.

This whole thing stinks. Ben was being failed by his LA run special school, and in common with a very small number of children, needed the level of care and consistency provided by the residential school. It's absolutely crazy to consider that a child with Ben's difficulties will manage in a children's home. He would be miserable. It would undo all that he has achieved in the past year. His parents must not be forced to make "voluntary" arrangements to put him in care. The LA staff who came up with this plan to save them a bit of money, obviously care nothing for this child or his family. They are squeezing them emotionally and financially. Ben's parents have been forced to give up their life savings, and now to pay the LA legal costs too! Then they are expected to give up their parental rights and in exchange see their beloved son fail in a system that cannot possibly meet his needs.

I'll be writing to the NAS about this. I'm not sure what else to do. I could contact my MP too. If anyone has any ideas of how we can support Ben and his family, and stop this attempt to erode our parental rights, please leave a comment.

There is more coverage of this at Left Brain/Right Brain and (I've just discovered) Action for Autism. As Mike mentions, there are some very interesting comments on the BBC Ouch boards too, including a few from a Bedforshire LA employee.

18 Jul 2008

Raider of the Brown Package

I've had better mornings.

There was a knock at the door, and I spied the postman through the glass. Thinking he had a parcel or something to be signed, I opened the door and saw Duncan standing alongside him.

I had seen him only a few minutes earlier. The front door was locked, but he had obviously gone out unnoticed through the garage, left open after Lady fed her guinea pigs.

Postie asked, "Is he your son?" I was tempted, but honesty won, "Yes. Is everything all right?"

"He was trying to get into my van. He was trying to get a parcel"

Oh shit. Look sorry, I know I don't swear here (often) but sometimes it's apt. He must have been scooting up and down the street until he noticed the van parked at the top of the road.

(Duncan muttered, "Get Ertl break-down train in brown parcel.")

"Oh no, I am so sorry! Was anything damaged?

"No, but he wouldn't listen to me when I told him not to."

"Look, he's autistic, he didn't understand. I'm really sorry."

"Now if anyone sees him getting into the van they could call the police. The police would get involved."

What! I've just told you he's autistic, he's a little kid, he thought there was a toy in there for him, you're a big man, you can keep him out. And surely you lock the bloody van when you're not in it! Get the police involved! Like they have nothing better to do than write up reports on small disabled boys.

"I understand. I'm sorry."

That's it, just suck it up. I should have known for sure where he was, the little Houdini.

"Just talk to him will you, try to explain that he can't do that."

"Yes I will, sorry."

When he went I glowered at the child and gave him a stern talking to. I know he likes post vans; I've seen him look up Google images for Royal Mail van. But it was still an unexpected transgression, not something I'd known I'd have to prevent.

He was very worried at the mention of the police, which he'd overheard and asked repeatedly that the "police not take Duncan away." I reassured him that he was safe, that the police help children, and they only take away very bad big men and women.

I was glad to be getting out that afternoon. I took the children, including cousin A. on the train to see their Granda and G in Belfast. I dumped them on the grandparents (such good people as they are) and snuck out to meet Gordon for a late lunch. Oh the bliss of being away from all the little darlings for a while. We went to Japanese place called Sakura and had fantastic sushi for next to nothing. Lovely!

Meanwhile, the children had a BBQ and went to the park, although Duncan refused to leave the car having decided that he needed to go to the toy shop.

Home later, to a puppy delighted to see her pack return.

16 Jul 2008

Cheesy or cute?

What do you think of the new look on the blog? Do you agree with my big brother who says it's cheesy, or do you side with Manuel, who says he loves it?

The brother knows more about art and making things look good than I; he's an architect. He's very posh too. (Isn't that right T?)

But Manuel, well he has a great blog (really, it's fantastic and I have to update my blogroll soon) and he's been mentioned in the Guardian and even...the Mail on Sunday, so he's famous!!!

By the way, I agree with Bro, it is cheesy. The whole thing is. The title is cheesy (from a Christy Moore love song), the Thomas themed blog names, the whole idea of writing about our lives, not to mention my occasional wee rants; all reeks like La Fromagerie.

But it's my cheesy blog and I like it. Even so, I'd like to know what you think.

Some awfully big adventures

On Saturday, having given sufficient time for her vaccinations to take effect, we took Pippi out for the first time. We went to a playground, and the children played while I walked about letting her sniff and explore her suddenly expanded universe. Then, since the sun always seems to shine on the twelfth of July, we went to the beach. Pippi loved it. She tried to make friends with/harass a couple of tiny but ancient dogs we encountered, who had no interest in the feisty pup.

I took Lady and Thomas to meet up with all the rest of my clan on Sunday as my newest niece underwent the traditional ritual of baptism. This time, Duncan stayed at home with Gordon to look after Pippi. They enjoyed a peaceful day together and went on another massive bike ride.

I enjoyed a peaceful day too. Unlike when I'm at an event with Duncan, I was able to relax and chat without having to be constantly aware of where the children are and what they're doing. Lady did her usual Pied Piper thing and Thomas had a blast with his buddies.

My niece A. came to spend a few days with us. She's over a year older than Lady and they get on well. Knowing A's propensity to seek and rescue injured wild animals, bringing them home to recover, the only rule I stipulated was that she brought no animals to our house.

Monday was a holiday here. We went to the Transport Museum, which was a whole lot busier than when we usually go during school term time. As ever, Duncan enjoyed playing on the steam trains. In the picture, he's putting "coal" (handfuls of dust and stones) that he scraped from the bottom of the bunker into the "fire". He pulled the levers and adjusted the boiler, he checked the pressure and applied the brakes, his detailed commentary going all the while.

We all headed to the air travel section and all bar Duncan and I went in the flight simulator ride. Duncan jumped into the open door of the cockpit on the chopped-in-half bit of aeroplane. I took a quick sneaky photo before asking him to leave, because usually that door is closed and there's a "do not enter" sign on it. But he loved his minute behind the controls, saying he was the pilot of "Thunderbird number 2."

We headed over to the Folk part of the museum, and wandered around the countryside area, the girls being most interested in seeing some animals. They were more excited than I'd have thought appropriate when they spotted some sheep, then they spend 10minutes stroking a scrangly cat, and feeding a couple of horses and gooking at a few chickens. The olden day houses couldn't compete.

They did like the jail room in the police station.

So what delights did Tuesday bring? Well, we all headed off to the funfair. I left everyone with Gordon for a few minutes while I found a cash machine, and by the time I came back, the girls had "won" 3 teddies and a goldfish. See how well my "no animals" rule was adhered to! I didn't think they gave fish out at fairs any more. It seems cruel to me, all those children clutching plastic bags of fish. I wonder how many are alive at the end of the day, the fish, I mean.

I asked A. if she's swap the fish for a toy, but no, she had already bonded with it. When they wondered what to call it, I suggested Awkward, but they changed that to Aqua. I put it in the car, cause we couldn't exactly carry it around all day, or take it onto the rides.

Anyway, post-fish incident, we all went on few rides. Gordon and Duncan went on the dodgems and he loved it! I took him on the Twister (the swizzy double turning one) and we both screamed with delight as he was squashed against me. Thankfully, my knowledge of physics (!) meant I had chosen the squashee position; could you imaging my bulk pushing poor, wee, skinny Duncan?!

The girls were very brave and went on the MadMouse (Duncan's favourite to watch), the Shock Wave and the fast turning Big Wheel. Thomas enjoyed the bouncy slide, helter skelter (he was to scared last year) and the Caterpillar Coaster.

All in, we enjoyed the day. We stopped off for hot dogs, a few groceries and fish food. Contrary to my expectations, Aqua, who was transferred into my largest glass mixing bowl when we got home, is still alive today and seems to be well.

9 Jul 2008

Chelation and autism in Time

Autism is discussed in today's Time; Fringe Autism Treatment Stirs Debate. In the opening sentence, chelation therapy for autism is described as voodoo medicine:
Pressured by desperate parents, government researchers are pushing to test an unproven treatment on autistic children, a move some scientists see as an unethical experiment in voodoo medicine.
Several times the writer highlights the lack of evidence for chelation as beneficial to autistic people. There is a quote from a believer mum, who reckons chelation helped her five year old son settle at school, followed up with;
There is no way to prove whether chelation made a difference or whether Charlie simply adjusted to the school routine.
Get that, a journalist pointing out the difference between causation and correlation!

National Institute of Mental Health director, Dr. Thomas Insel, is said to support investigation of this potentially dangerous (one fatality) absurdly irrelevant (to autism) form of intervention;
But many parents of autistic children are believers, and the head of the National Institute of Mental Health supports testing it on children provided the tests are safe.

"So many moms have said, `It's saved my kids,'" institute director said.

The moms may have said it, but that doesn't make it so. Apart from causing the death of a five year old boy, here's a bit more about what chelation can do, followed by a quote from someone who actually seems to have ethical qualms about subjecting children to such unnecessary and potentially painful and risky drugs.

One of the drugs used for chelation, DMSA, can cause side effects including rashes and low white blood cell count. And there is evidence chelation may redistribute metals in the body, perhaps even into the central nervous system.

"I don't really know why we have to do this in helpless children," said Ellen Silbergeld of Johns Hopkins University's Bloomberg School of Public Health, who was invited to comment on the study to a review board of the national institute.

Well said, Ellen Silbergeld.

The glut of quackery associated with autism is described:
Frustrated parents use more than 300 alternative treatments, most with little or no scientific evidence backing them up, according to the Interactive Autism Network at the Kennedy Krieger Institute in Baltimore, Md.

"With a lot of mothers, if they hear about a treatment, they feel like they need to try it," said project director Dr. Paul Law. "Anything that has a chance of benefiting their child, they're willing to give it a shot."

What about the fathers? I'm shocked at that attitude of "sure let's give it a go anyway" that is described here. Many of these quack therapies have known risks: HBOT, chelation, massive doses of vitamins, not to mention the distress caused to the poor children forced to put up with them and the expense of consultations with the in-for-profit quacks, the useless and biased tests they order and the equally useless treatments they advise.

More than 2% of the children tracked by the project use chelation. If that figure holds for the general population, it would mean more than 3,000 autistic children are on the treatment at any time in the United States.

Many of the parents who approve of chelation (and are there really as many as 3000 autistic children in the US suffering this treatment?) are at best distrustful of vaccines or an worst raving anti-vaccine loons. How do they reconcile the cognitive dissonance of administering drugs with known and common side effects with their fear of vaccines which have an extremely low risk of side effects?

The potential danger of a chelation trial is further explained:
But the study was put on hold for safety concerns after an animal study, published last year, linked DMSA to lasting brain problems in rats. It remains under review, Insel told the AP.

Insel said he has come to believe after listening to parents that traditional scientific research, building incrementally on animal studies and published papers, wasn't answering questions fast enough.

"This is an urgent set of questions," Insel said. "Let's make innovation the centerpiece of this effort as we study autism, its causes and treatments, and think of what we may be missing."

The drug they want to study caused brain damage in animal models, but Dr Insel wants to push on regardless?! He says he's worried that they're going at this too slowly. Don't ethics matter with autistic people? My husband has told me of the difficulty he has getting ethical approval for trials of therapies for people with a fatal form of cancer. Even in people who have no hope of survival, the ethics committees block trials and take their role of protecting patients with cancer seriously. Autistic children deserve nothing less.

Interestingly, indigo/autism healer/model/actress/Google Uni PhD/vaccine campaigner Jenny McCarthy, who has many times claimed that her son has been "recovered" from autism, has now said she will have him chelated.

"A lot of people are scared to chelate ... but it has triggered many recoveries," she said.

And she's been on Google for ages so she knows.


Here are a few other posts about this topic:

And a comment from HCN on Kristina's post that highlights something important;

Wouldn’t it be useful to do a matched pair experiment design, which would involve also chelating a bunch of “normal” kids? Would the (very real) risk of chelating be too much to endanger these “normal” kids?

In that case, why would it be acceptable to to endanger the health of the autistic kids?

Why not indeed.

5 Jul 2008

A bully strikes

Duncan is growing up. He has changed again since his eighth birthday. I still have to be very careful in many circumstances, and he still can, um, surprise me by, for example, finding a pot of poster paint and decorating his trains, getting more than a little splashed around the bathroom in the process. But, I tell myself, it is so much better than when he would never have considered, as he now does, trying to avoid messing up the carpet. And there was a time when it was a substance more unpleasant than poster paint that I sometimes had to clean from various surfaces and objects.

But he is desperate to be allowed to ride his bike like the other children, up and down our street. I used to walk alongside him as he rode, fearing an impulsive foray into someone's house or worse, onto the road, but that was when he was on a smaller, slower wagon. More recently I have been able to stand outside our gate and watch him as he goes, shouting for him to turn and come back when he goes far enough. I wonder what the neighbours think sometimes. This used to be a quiet street until my children started to ride around and seemingly unearthed a host of other kids to bomb up and down the street with, pretending to be a police-dog-rescue-squad, or whatever. And then there's me guldering (as we'd have said out west where I grew up) orders at my son.

One day a few weeks back, I was talking with a neighbour as Duncan rode, and he went out of sight for a minute. Our road sweeps around in a crescent, making it fairly safe as only people with dealings in these houses have cause to drive here. I went to fetch him but couldn't see him or his bike. I called out and shortly a teenager came out from one of the houses asking if I was looking for a little boy, and one matching the description I gave turned out to have popped into their house to use the toilet. Oops! I apologised and for once gave the autism explanation, which she understood since she said, her best friend has autistic brother.

Yesterday some of our neighbours came round for a very informal dinner. The children were in and out and all about. Duncan got out with Lady and came riding up the street proudly bearing a creme egg. Where on earth had he got that? Thankfully he was able to explain it was from one of their friends' houses. The dad told me later, when I was once again apologising, that Duncan had quietly come in, opened the fridge, helped himself, politely said "thank you" then left. He did this twice too. Ah well, at the time I was feeding their kids some hot-dogs!

Earlier this week Thomas convinced me to take them to an indoor soft-play place as these same friends were going. It's a nice place, with a decent cafe and comfy chairs to entice the parents. I lost sight of Duncan almost straight away and climbed to an upper level to look for him. I spotted him streaking out of the cafe place, with a pink doughnut in his hand. I ran down and caught up with him. "Sorry Mummy! Mummy go pay for it," he said, showing me he knew that what he'd done was wrong. I paid for the already eaten pastry, and I don't think the busy staff had even noticed the little Artful Dodger's pilfering.

Anyway, my three children enjoyed their play, especially so as they had a few other friends there too. Just when I'd decided to give them ten more minutes, they all came to me supporting a distraught Duncan, bearing a red, sore looking eye and a face full of tears and snot. A boy had punched him right in the eye! Thankfully Duncan was with his siblings at the time so I was assured that he was blameless, and also that the transgressor had been noted and sternly spoken to. I cleaned him up and followed Lady to meet the thug, who was no more than five years old. I told him that he must not punch people, that it hurts and is very rude. The boy said that Duncan was being rude to him, which Lady denied, and I reiterated that it doesn't matter, he could go to an adult if he thought someone was doing wrong, but he must not hit them and hurt them.

I told one of the staff about it all then we went home. Poor Duncan's eye was red for a while. It's shocking to think that such a small boy would decide to just punch another child like that. I wondered Duncan ignored him, or appeared odd in the way he wandered around talking to himself, making this boy feel it was OK to punch the weirdo. Gordon was worried when I told him, saying that such ill treatment is just beginning for Duncan. I refuse to accept that. I will work on Duncan as best I can to help him learn strategies to stand up for himself and stay safe, but I will also do what I can to change the prevailing attitude that difference should be feared and punished.

When I was talking to Duncan about it all later, he reminisced about the doughnuts and the "turntable" (roundabout thing) and then about the "naughty boy punch Duncan." He wasn't too upset, because we all helped him know that the other child did wrong, that hitting and hurting is bad, and we don't want anyone to hurt our boy.

3 Jul 2008

AIT for autism in the DT

A couple of weeks back, I read a Telegraph article about an autistic boy saying his first words. It was presented as though this was some sort of miracle, as the boy "broke his silence with the words 'mumma' and 'purple'."

How likely is it that until he came out with a few words, the boy had actually been silent? Didn't he make any vocalisations at all?

His mum then explains that in fact, "He has tried saying Spongebob before, but nothing clear. He has been trying for a long time, but he has properly said a word now."

So, it's not really accurate to claim that he finally "broke his silence" is it?

I was wondering why they were reporting on this family, what was so newsworthy? It's nice to read about children making progress, but not exactly surprising. Autism is, after all, a condition associated with developmental delay, not stasis.

The true purpose of the piece, it transpires, is to promote the National Light and Sound Therapy Centre in London, provider of Auditory Integration Therapy. This is an unproven, unregulated and expensive nostrum, one of the the many claimed, with merely loads of positive testimonials in place of evidence, to help autistic people. Notice however, the header of their web site, and the words, "A registered NHS provider."
Oh it makes me cross when taxes are spent on rubbish like that instead of evidence based therapies.

The (presumably) free advertisement run in this major national newspaper continued, telling how the boy's parents;
...recently took him to the National Light and Sound Therapy Centre in London, where he underwent twice daily light and sound therapy sessions. The therapy involved listening to music through headphones while the light therapy exposed him to different colours from a light box.

His mother said: "Every day I was saying to Jamie, look it is blue today or look it is purple. Then he pointed at a door and said purple. I was really shocked and I kind of froze. I just wanted to scream and shout and tell everyone, it was so emotional." Mrs Jenkins said her son could not now stop saying 'purple' and 'mumma'. "He does say purple a lot now. It is definitely his favourite word," she said.

Zelda Landau, director of the centre, said: "He was a delightful little boy and his family was very loving. He got on very well from the first minute."

That ends the article. I'm sure he is a lovely boy with wonderful parents, but it wouldn't do their AIT business any favours to say anything else. I don't know much about AIT, but a quick Pubmed search showed up a few reviews that didn't credit the technique with evidence of effectiveness. An Autism Hub blogger wrote a series of posts on AIT a while back, including this one. I wasn't surprised to see the technique criticised in a Quackwatch article on autism therapies and autism researcher Professor Patricia Howlin wrote an interesting article about the very same London centre which is available on the NAS website. On a positive note, she wrote that the centre's staff,
make it clear that there can be no guarantee of success, for any child, and parents are positively encouraged to find out all they can about the Centre before they actually pay the money for their treatment. There seems to be a genuine concern for children and their families and a wish to provide as much support as possible.

But she also noted that none of the staff (at the time of her visit) had any training in autism, and her article continued;
None are trained in audiometry, psychology, or language therapy although the Centre has access to advice from an audiometrist and a qualified nurse who works locally. A speech therapist may also be called in for a consultation.

The most damning part of her account follows;
The Centre's literature indicates a somewhat dismissive attitude to evaluation, noting that "parents don't really want to know how many double-blind trials have been done, how many years the children have been monitored following treatment or what other factors might influence the results". As noted above, the assessments that are carried out are not standardised in any way and are, on the Centres own admission, highly subjective. There are no before and after measures, even of an impressionistic kind, and no standard audiometric assessments although discussions with audiologists outside the Centre indicate that in their view it is necessary to have an audiogram to validate the claims that AIT actually reduces the sound sensitivity. There are no data to indicate which children seem to respond best to therapy and which children do not; nor which conditions are most amenable to therapy.
(Emphasis mine.)

Also, Prof. Howlin said that the standard cost of two weeks of this therapy, in 1996, was £1250. For most people, the high cost of travelling to and spending two weeks in London would bump that up yet higher.

The Telegraph article was what I'd expect for a small regional newspaper, desperate to fill it's pages with stories of the local person doing something out of the ordinary.

Why on earth did they feel it was appropriate to present a wholly uncritical view of AIT? I wonder how many vulnerable parents, swayed more by a lack of hope and an uncritical acceptance of testimonial over evidence, will part with cash to try the silly sounds and light show with their child. They'd be better off (in my opinion) going on a proper holiday and if they really want to do something amazing for their child, make part of the holiday about something the child is really interested in, be it trains, John Deere tractors, roller coasters, Monet's paintings or windmills. I bet they'd get plenty of words from their children too. Like I've said before, there is no need to believe in miracles.

(Photos from stock.xchng.)

2 Jul 2008

Aloof and lacking empathy?

The picture shows me wearing a happy expression, as well as a few hearts, a flower (I think it's a lilly like those in a vase on our table) and most endearingly of all, a flag from a railway signal box.

Duncan made it and handed it to me last night, entirely unprompted, after I'd been giving out to someone for something. I was at the time, being a bit of a grumpy mum. He told me he'd made a card.

You know those autistic children and their legendary "aloofness" and "lack of empathy". You know how often they're described as being "locked in their own little world".

Look at that picture and see the evidence, that those theories, are utter bollocks.

1 Jul 2008

Summer Justification

Yesterday was the first day of the summer holidays for all the children who go to school. I was none too surprised then when the door bell started to ring shortly after 10 to see when my children would be going out to play. Their friends like to hang out here too. Pippi is a big attraction. The puppy care books all emphasise the importance of ensuring your pup has as much exposure to different people and situations as possible at this age. There's no denying Pippi is growing up well used to children!

At one stage the front of our house was littered with bikes and scooters. It looked like we'd been invaded, and in a way we had!

We've been trying to bring some order to our domain. We've had two bedrooms painted and cleared out some of the junk from the garage. Gordon and Duncan took a pile of stuff to be recycled. As Duncan sat in the car waiting to go, he turned on the radio and after pressing a few buttons, failed to find something worth listening too. He asked me to, "put on Justin, number 5, in the shower."

I knew what he meant. A few months back I'd been playing the Justin Timberlake CD many times while driving. Is this a guilty pleasure? I like Justin and his stuff makes me want to dance like an ejit, but when he tries to do sexy I laugh, 'cause he looks to me a bit like a grown up Duncan, all cute curls and big eyes. What do you think?

Anyway, Duncan was requesting track 5, "Cry me a river" which starts with the sound of a shower. He was most happy when I complied.

Perhaps he senses a connection?