27 Feb 2009

More Manure About Autism in the Media

Sweet mother of mercy have they taken leave of their senses. Some dude wrote a totally ridiculous book, and the newspapers give him lots of space to promote his totally wacky notions. Can this be right?

The book is called "The Horse Boy" by Rupert Isaacson. The Times features the book opening with the title,
"Shamans and horses work magic on autistic Rowan
Rupert Isaacson was almost at his wits’ end over his son’s demonic fits, but a riding trip in Mongolia to visit local healers brought an amazing change"
"Demonic fits"...I ask you. How is this stuff cleared for publication, doesn't anyone catch themselves the hell on and think that perhaps such language might be offensive, inaccurate, discriminatory?! And given that the young son of a prominent politician died this week, a child who had epilepsy, couldn't they have thought to be a bit more sensitive in their choice of language.

In the first paragraph of the article we learn that,
"Rowan was autistic: incontinent, uncommunicative and given to fearsome bouts of nerve-shredding screeching, even at home."
But obviously, he couldn't possibly have been (for example) autistic, sweet, cheeky, athletic and into Formula 1. That wouldn't create the same levels of drama.

The article continues as these things tend to (see my post on how to write a book about your autistic child), by explaining how they came to notice the child was different and how he was diagnosed and they were devastated (can't they come up with a new word for this- I suggest dismayed, inconsolable, disconsolate...I'm sure the rest of you will have more suggestions.)

Actually, by the time I'd read that far, I was thinking that this all felt very familiar and I found an earlier Times article lauding Isaacson and his notions. Since then, someone has backed his plan to sell his Mongolian adventure book and film by pitching it as, not just another well-off westerner meeting the natives, but as a quest to cure his poor, suffering son.

Autism is so hot right now.

He tells about the day his child, aged two, ran into the middle of a group of horses and lay on the ground. Luckily he wasn't killed, and his Dad was able to read from the horses' reaction that actually, his son had inherited his "horse gene." I'll bet.

The son got on a horse and IT'S A MIRACLE!!! he said a few words. Why is this always presented as such a big deal? Something strange happened when he was on the horse.
“He began to talk meaningfully, not just babble or recite Thomas the Tank Engine train names,” says Isaacson. “For the time we were together in the saddle there were no tantrums. It became a place of respite and joy.”
While it's nice that the child enjoyed horse riding, his previous speech probably wasn't just "meaningless babble" but was an important stage that all children go though as they're developing the ability to speak. Duncan's early words were almost all repeated phrases for films, and much of it still is, but his speech has real communicative intent.

The article preps us for the truly wacky stuff to come though, "what happened next has no rational explanation." Too flippin' right!
"when Rowan was three, Isaacson brought a group of bushmen from Botswana to the United Nations in New York to protest against land being lost to diamond mining. Their chief shaman, or “wise man”, performed a healing ritual on Rowan. “It was extraordinary,” says his father. “For five days or so it really was like having a normal kid. Rowan’s symptoms started to fall away. The problem was as soon as we went home he tumbled back into the autism.” "
Aw, it must really gall you to see your child tumble into autism. I'm not sure how it happens, but I'll go with it for now. Not wishing to miss a chance to profit from his son inform the world of this miracle, Isaacson had a film crew follow them as they travelled to Mongolia...as you do.

Here's a but more insight into how this father thinks. He;
"believes that shamanic healing works.

“Once you’ve seen enough people with cancer, or snake bites, or dementia or whatever, healed – and the doctors scratching their heads and saying we don’t know where the tumour’s gone, you come to realise it’s a pretty valid system.”"

I'll just let the full stupid of that remark simmer, no further comment is required.


So this is what they did to "help" their autistic child;
"To western eyes the ceremonies they underwent appear bizarre. One Mongolian shaman told them Rowan had been touched by “black energy” in the womb and it was necessary to draw this negative energy away. Another prescribed fermented goat’s milk. A female shaman beat on a drum while summoning spirits with a whirling, dancing prayer. They were hit with reindeer horns and spattered with vodka."
I once met an old woman who called out to Duncan, and told me that he isn't disabled, he's one of the lost tribe of Atlantis and that I was trapping him in a false dimension with my greasy soul and that if I didn't let her snort snuff out of her nostrils on us both, he'd never progress.

Actually, I was lying there.

Yep, my eyes must be western all right as that shaman stuff sounds like a whole big pile of horse manure. Imagine how that child must have been feeling, dragged across the plains and subjected to all those sensory overloading, invasive, unpleasant and ridiculous interventions. He'd have been better off with a bit of The Shamen, which I think Duncan would quite like though he's big into Gwen Stefani these days.

This bit is hilarious;
"As their trek across Mongolia continued, so did Rowan’s progress, despite setbacks – intermittent tantrums that saw him refuse to go near a horse and reduced his father almost to despair. At last they reached the so-called Reindeer people, reputed to have the most powerful shamans. After a ceremony there, Rowan’s incontinence was apparently cured."
So Rowan was acting as any reasonable person would expect. How is incontinence "apparently" cured? And please could someone please teach these people about conflating correlation and causation!
(Duncan only rarely wees in his sleep now, I credit oxtail soup for this breakthrough...Not really.)

I'll bet you can't guess how it ends...oh all right. They've set up a centre to help other children benefit from horses just like Rowan.

The book/film gets masses of coverage in the Daily Mail too, where they've been publishing excerpts from the book. It's toe curling, hippy bull. Here are a few choice phrases,
"my emotionally and physically incontinent son"
"the shaman's assistant passed her spiritual mistress a bottle of vodka, from which she took a hearty pull, then without warning spat the liquid all over Rowan's face and body."
And instead of sweeping your son up and running as fast as possible out of there you let this continue?
"But Rowan was screaming now. Genuine distress. Too much adventure, too tired, too cold, too hungry.
The cameraman rode up to our side, filming from the saddle. 'Put the damn camera away!' I snapped."
Had he forgotten it was he who had arranged the film crew!
"I'd taken the poor boy to his edge and he was now falling apart. 'Help!' he sobbed. 'Help me.' Rowan had his eyes tightly shut now, as he retreated into himself.

This is a very bad thing for an autistic child to do - every autism parent's worst scenario, seeing his child shut down, his nervous system overloaded."
No. This is not my worst scenario, not by a long shot. My son being really sick or in pain or suffering at the hands of another, are much worse scenarios to my mind.

And there plenty more where that came from, as demonstrated in another piece in the Daily Mail:
"My son was diagnosed with autism in the spring of 2004, when he was two. It was like being hit across the face with a baseball bat. Grief and shame engulfed me: weird, irrational shame, as if I had somehow cursed this child by giving him faulty genes, condemned him to a lifetime of living as an alien because of me.
And then came the pain of watching, horrified, as he began to drift away to another place, separated from me as if by thick glass. "
Oh pull yourself together, this is just silly, there is no glass, no drifting. There is just your child with a brain that works in a different way who needs his parents to adapt and meet his slightly alternative needs.
Now came something new: a demonic, almost possessed edge, materialising suddenly out of nowhere.
Again, the demonic thing. What makes these people think it's an acceptable way to label their own children to millions of the reading public?
"Our hope that our son would share a life of adventure with us was dashed.
Instead, our life became a mechanical drudgery of driving from one therapy and assessment appointment to another and dealing with insurance companies, therapists and our son's ever-increasing, inexplicable tantrums"
From the earlier Times article, linked to above, he's explained what these therapies are and some are far from mainstream. Before they went gallivanting east, they were pushing chelation chemicals on the boy. This stuff is dangerous and useless in autism. There is no need to spend time and money chasing a cure. Acceptance, education of self and your child, an optimised environment and knowing what makes your child tick are far more important.

And I can tell Rupert Isaacson, I didn't have to drag my son anywhere. Wherever we are, we're sharing this voyage as a family together, and there may be ups and downs, but I wouldn't want to be travelling with anyone else.


Anonymous said...

Hiya, I just found your website and will save it as a favourite. My son has Asperger's syndrome...it can be tough going at times...mainly with schooling. Best wishes to you and your family.

Anonymous said...

My cynical side would say that the writer of the article just wanted to sensationalise and was not fussed about accuracy.

Anonymous said...

Well rotted manure is good for gardens. Not sure about this guy's stuff.

AnnB said...

Maybe it's time to reclaim decent media rights for families with Autism. We have to arrive at a critical mass that will show this nonsense up for the patronising, insulting, garbage that it is. Lets start an online campaign to rubbish this sort of tat, my view is that it is always better to set your own agenda rather than respond to someone else's. I'm available on line to help in whatever way I can. We can chip, chip, chip away at their over rated normality!! Vive la revolution!

Sharon McDaid said...

@magnumlady, you're very welcome. I understand your frustrations with schooling, observing the experiences of so many friends with older autistic children is one of my main reasons for home-educating.

@bullet, I'd say the writer didn't give a hoot about accuracy. Like so many on the newspapers, the notion that autistic people deserve respect seems to have passed them by.

@Nancy, yes! Manure has its uses. Can you imagine how painful this film would be to watch.

@AnnB, hey, I'm all for it. I am so sick reading these articles and books. But it seems at times that we who object are in a minority. the louder voices are saying, oh what good, caring and brave parents to do so much for their poor child. We look like the bad guys! It's all because autism is demonised so much that it's seen as acceptable to do just about anything to "defeat" it. Contact me anytime you want with your ideas.

AnnB said...

Sharon, as I'm relatively new to your blog please excuse me if you have covered this already, but is there a definition of life with autism that you are happy with? It seems to me that we have to stop the demonisation of autism and also make it unacceptable to do so. Lets follow the example of other campaigns such as those that have made it unacceptable to tell sexist or racist jokes. I have some experience of how insulting it is to have other people tell you how hard your life must be and how brave you are. But I'm not repeatedly subjected to it in the media like you. My son doesn't have a label, though many have tried, he has eluded them. As far as I'm concerned he is a citizen of this state and entitled to the same rights and respect as anyone else, with or without a label. There is no reason why we can't change this smug self righteous media attitude. It's a question of getting the message out there.

Jean said...

Yee-Haw! I'm gonna giddy up and git myself some hosses. Why didn't I think of it sooner??? Wonder if it'll be difficult to round up a few shamen...there's a recession on so there's bound to some knocking about looking for work.
Are you SURE monty python didn't write that book?

Katherine said...

Great post. I don't have a child with autism, but I read this same article with total disgust, and remembered the previous one which I found equally offensive.

This sort of drivel annoys me intensely and is anything but harmless. I had cancer. Thankfully modern medicine fixed me up but the most insulting thing that happened to me during the whole episode was the vast number of people who responded to the news by telling me to just visit one or other 'faith healer' who had 'the cure'.

It's cruel and mindless but very, very common.

Anonymous said...

A great read. My son has pervasive development disorder- he is challending, warm and brilliant. Thanks for your common sense and humour. My pelvic floor muscles were seriously challenged!!

Lisamaree said...

Ignoring the aspect of Shamans

My Theory on the Dogs, Dolphins and Horses is that it actually provides a structure for the PARENT and while I do not have stats - often the FATHER, to relate to the child. They can't find a hook into relating to their kids and finding a way to be interesting themselves, which is the essence of Pairing, so they use the placebo of swimming with dolphins or running around a ranch with horses to get closer and spend time with, then help their child.

It is just as effective to pick up say Maurice and Green and do a few observations on what your kid actually likes, then try to connect yourself with those things (hmm, like Thomas maybe?) but not as interesting or exciting to the parent obviously.

What I think is genuinely effective about working with animals is the people involved. They know observable behaviour. No one worries about cognitives in a Riding School, (But what was Rajah thinking when he stopped to bite Misty on the Flank?)
The good ones work on task analysis and reinforcement only and their affinity with the non-verbal makes them natural "therapists" in my experience. They are also less likely to be full of BS and excuses than many so called professionals.

I have direct experience of Equine Assisted Learning, my son started horse riding to improve his floppyness and poor muscle tone, and it also helped with posture, co-ordination and knowing where his body is in space (sitting on a horse will do that).It is better than hands on physio or OT because the child has to feel it themselves, not be manipulated into the exercises. And the horse provides the receptive feedback.

But one of the best aspects was a walking program he did with the senior riding trainer, on the ground with no horse. (using tag teach as Reinforcement where you pair an audible click with an edible reward, until you fade the edible, and just click. So you can move away from the child as you train)
The school psychologist HATED that program and refused to generalise it from the stables to the school, they just couldn't accept that it worked.

My final word would be that it is the public that want to believe the Dolphin Stories. I took part in a documentary based at the Riding School and while I sat there explaining what it had done for Boo, The producers kept wanting me to say that the Horses knew he had autism, and that they could tune in and heal him. And I couldn't because in my opinion it was the people.

But the public go blurry eyed at discussions of Skinner and Keenan - they want the shaggy dog story!


Lisamaree said...

Whoops, I should say it was the State School Health Service Psychologist and B.T who hated the program!
In the new ABA school the Director, Supervisor and his Tutor LOVE tag teach and we are on a waiting list to get more lessons from the Senior Riding instructor.
Boo's tutor wears the tag clicker on his belt at all times!!