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.)

15 comments:

Club 166 said...

John Deere tractors??? Did I hear someone say something about John Deere tractors?

Sign us up!!! :)

Nice post.

Joe

r.b. said...

Oh, Lordie...if people want to try AIT they can give it to their kids for about $70 bucks, like I did. (eASE audio discs purport to have the same "type" of music)
SAVINGS $3430.00

Or figure out an ABA program for your child (get Maurice's book) which is excellent for teaching language, the crux of the problem, at about $40. Our kiddos are very independent. Give them a cost/benefit analysis to chew on instead of behaviorism. Then watch 'em grow!
SAVINGS $99,960.00

If it sounds too good to be true, and cost exorbitant amounts of money...give it up. Doctors, teachers, therapists.. we are all salesmen/shaman at heart. We all want to be magic. You, the patient, student, client, or parent, only have to buy/believe for us to continue.

Loving your child: PRICELESS!!!!!!

andrea said...

On the western side of the "pond", AIT has been discredited by the:

American Speech-Hearing-Language Association

American Academy of Audiology

Educational Audiology Association

American Academy of Pediatrics

More details on this.

Some places sell AIT as treatments for a fantastically wide range of issues ("fantastically" meaning unbelievable).

Gotta love those "news stories" that are really just PR bits. /sarcasm

andrea
Andrea's Buzzing About:

Sharon said...

Guess who I was thinking of when I mentioned the tractors?

R.B., there are many better ways of spending money on our children than to line the pockets of the autism treatment businesses. I like your idea of choosing what you like from what they offer and then going for the cheaper DIY option.

Thanks very much Andrea for all the additional information on AIT and its highly informed detractors. Thanks also for the link to your own blog post.

Yes, the press release as news is irritating, but not what I expected from a fairly high brow national paper.
Though the same paper carried an exerable autism/vaccines article quite recently.

therextras said...

Add me to the grateful group for posting on treatments that don't work.

Heike said...

I know very little about autism buta bit more about CP. There are lots of magic cures for CP touted, and many of them are very expensive. I would agree that if it's unproven and cost lots of money, stay away from it. But at the same time, we must keep an open mind - many things are not "proven". In CP, splints are regularly used by established sectors of the medical profession, yet reserach seems unable to conclude whether there are actually any long term benefits to it. And, while obviously absurd, let's not forget that the effectiveness of parachutes has not been subjected to rigorous evaluation by using randomised controlled trials and thus evidence based medicine might dismiss this as a positive measure to take when jumping out of an airplane. We must be sceptical and beware of the quacks, but also keep an open mind to new ideas that might, at this point, seem as ridiculous to us as the idea that the earth is round was once.

andrea said...

Enough people HAVE fallen from planes without parachutes to have established the success rates of parachutes. Seriously.

Sharon said...

Heike, thanks for leaving your comment. I know there is a balance to be found between scepticism and open mindedness. But we don't want to be so credulous, so open minded that (as, I think, Feynman said) the brain falls out.

There are lots of choices we make and stuff we do that have not been subjected to randomised controlled trail. It's obvious that the way almost all children are taught in schools is not the optimal way to ensure each child progresses to the best of their ability, but instead seems to be designed to help most of them make sufficient progress to become useful consumers and contributors in their nation's economy. OK, that is a very brief and slightly biased view, but certainly, this important issue in society has not undergone RCT.

Parachutes were designed to slow the descent of people and objects dropped/jumping from a great height, when not having one would mean certain splatter. They are not a medical therapy.

All new medical therapies should be tested in an ethical and stringent way before they are sold as beneficial. I'm not going to try something on my children that seems ridiculous until I know it has been tested and found to be safe and effective. I'm certainly not going to add to the profit of quacks and charlatans.

Andrea, good point.

therextras said...

I have made several posts related to why people choose treatments for children who have been diagnosed (any diagnosis) but with special references to those diagnosis that affect development.

I know a lot about CP, Austism and reading research. The several comments on this post provide a good balance of opinion - except, of course, the comment on testing parachutes - not helpful, not truly related to the discussion.

I repeatedly post opinions on parent choice - hoping they will realize the benefit of their choosing - over the helplessness of stating the doctor recommended it, or the treatment is what is paid for by insurance.

I am especially appreciative of Sharon's representation of her family and lifestyle choices for Duncan. I pulled the "Defeat Autism?" image from The Voyage and included it in yesterday's post on the word 'normal'.

Thanks to you all, from Texas. Barbara

Heike said...

Of course the comment about parachutes is not to be taken seriously - it's absurd, as i stated. It's just meant to remind us to be careful (because Andrea, unless done under testing conditions, it is not considererd a RCT but anecdotal evidence)

It is meant to be a joke, but in a jokey way, it does illustrate that not every therapy has been subjected to rigorous trials, yet some are decided OK and others not. AFOs have never been tried and proven effective, yet are recommended to pretty much every kid with spasticity.

Here in Australia, my physio will happily pop my kids in splints, yet when i tell her that i take them to a chiropractor, she thinks i'm bonkers as there is no "proof" that chiropractics work...

All i'm saying is, beware weird and wonderful "magic cures" - but equally, don't simply believe everything doctors and therapist tell you...

therextras said...

Here's a lengthy look at the amount of data it takes to draw a conclusion:
http://www.kk.org/thetechnium/archives/2008/06/the_google_way.php

Looks like Heike and I are in agreement - you should question all recommendations given as medical care or treatment.

Mindfully judge who is making the recommendation - consider the source as it were. I make this point in my essay for all parents "Reading Research". You are more likely to follow the recommendations of someone you trust.

It's very important to trust whoever you allow to pack your parachute, too.

Sharon said...

Thanks Barbara. Mindful judgement is a good way of putting it. I'm sure your posts are helpful to parents working out the myriad options.

I get your point on parachutes Heike. Simply believing what others tell you is not the way to go. I'd trust the opinion of a highly qualified doctor or therapist over someone just in for profit, but even the docs can't tell you what to do in many circumstances. I didn't get a doctor or therapist to tell me to home-educate Duncan, that was a bit of Mummy instinct. There's a time and a place for listening to the experts. If my children are sick, I'll give way to the folk in the white coats every time.

SpeechGuy said...

As a practicing professional I have been trained to be very skeptical of all who are 'marketing' a program. Once you start asking the tough questions, they start packing up shop. I am all for innovation, but once something comes across as a "cure for everyone," my radar goes right off the scale.

Oh, an be aware of DAT. That's Dolphin Assisted Therapy, yes, Dolphins....also on it's way out.
Good luck!

Sharon said...

Speechguy, thanks for adding to the discussion. Innovation is laudable, but must be backed by evidence. So many of the quack autism "therapies" are of the "one cure for everything" variety; AIT, chelation, homeopathy, etc.

I think I'll do without DAT too thanks!

Miss Gonzo said...

Thanks Sharon, I updated my post to include a link to this article.
:)