15 Apr 2009

Horse Boy Book -and me- in the New York Times

A few weeks ago I shared some thoughts on a recently published book, a new addition to the autism-parent canon. In this one, instead of using a dog, a restrictive diet, behaviourism or some random, off-label and unproven combination of medications to defeat the dread autism, the parent has subjected the autistic child to shaman "healing" rituals and dragged the boy, with a film crew, across Mongolia on horse back.

The post was read by New York Times journalist Motoko Rich, who contacted me for an interview as she was writing an article on the Horse Boy book which was released in the USA this week. Her article appeared today with the unfortunate headline; A Gallop Toward Hope: One Family’s Adventure in Fighting Autism.

Fighting autism- ouch.

It's clearly a brilliant article, and my inclusion hasn't created any bias in my opinion. Really.
In writing about Rowan’s experiences, Mr. Isaacson is careful to avoid the word “cure,” but writes of an amazing “recovery” and “healing.” That has some prospective readers wary. Sharon Fennell, a mother of three in Belfast, Northern Ireland, whose 8-year-old son is autistic, said she had read newspaper excerpts and reviews in Britain, where the book came out last month.

She questioned whether Rowan’s progress could be attributed to what happened in Mongolia or to just typical changes that all children go through. “To make this story more engaging, it has to be portrayed as something miraculous and fantastical, because ordinary, everyday, slow-plodding progress does not read so well,” Ms. Fennell said.
OK so I'll get over myself now.

It was interesting to learn the inside story of the publishing deal:
...the publisher paid more than $1 million in an advance to Mr. Isaacson before he and his family had even taken their Mongolian trip.

Michael Pietsch, publisher of Little, Brown, said booksellers had already placed orders high enough to justify a first printing of 150,000 copies.

“It just touched so many points of interest — helping to heal an autistic child, traveling under difficult circumstances,” Mr. Pietsch said. “Most of all, I felt this was a story entirely driven by the chances you’ll take for love, and I felt, who’s not going to want to read this story when they hear the outlines of it?”
The publisher also admits,
“that regardless of the outcome in Mongolia, we thought he would write a very moving and interesting and dramatic book.”
So Isaacson went off with his son knowing he had to produce a tale worthy of the wad of cash he'd already been handed. What would he have done if there hadn't actually been an acceptably dramatic level of progress in the boy's development? Is there a chance that he might have...massaged the truth, made it more saleable and sensational?

Actually, I hope he did exaggerate when he described the shaman ceremony in which his little son was surrounded by strangers beating drums and passed, kicking and screaming, to an old woman who spat vodka all over him. Of course, ordinarily, this sort of thing would be called by it's real name- child abuse- but anything goes, or so it seems, when it comes to "fighting" autism.

Dr Paul Offit, whose book Autism's False Prophets, is one of the best I've read recently is less than impressed with the book's premise. He's said to think that:
anecdotal examples of recovery like that in “The Horse Boy” could give parents “false hope” and lead them to spend thousands of dollars trying to replicate an experience without any scientific proof that it would help.
The NY Times blog has collected more opinions on the book. Oddly, those questioned appear to be giving their opinion on Mongolian horse/shaman therapy as if it's even worthy of a moment's serious consideration.

Temple Grandin, well known autistic author and animal scientist, said that "it’s important to expose young autistic kids to new things," something I'd agree with, and something you don't have to go to Mongolia for, no matter whether you head off with $1 million in your pocket or not.

Simon Baron-Cohen, (lovely man) points out that all children, and not just those with autism, "develop in leaps and bounds rather than having some kind of steady, linear increase." He also said,
"The combination of a story about a child with autism and a location that’s outside the West; throw in the extra ingredient of communicating across species, and maybe a touch of mysticism with the shamanism — you’ve obviously got a lot of ingredients for interesting drama, and it’s very televisual. But that doesn’t necessarily have anything to tell us about the nature of autism or what would constitute a useful treatment."
I agree with him, and also with Ari Ne’eman, president of the Autistic Self Advocacy Network who spoke of "public attitudes that autism is some sort of appendage that attaches itself to a normal child rather than an aspect of a normal person’s development that doesn’t go away." He also recognised the "role of emotional support animals" and mentioned the ASAN advocacy to ensure people's legal rights to have such animals. His quote ends,
"My hope is that people can take the message of acceptance that an autism diagnosis doesn’t have to result in the end of one’s life either as an individual or a family."
University of California psychiatry professor, Sally Rogers describes the studies of autism treatments in which children in placebo groups:
"show as much improvement as the intervention group. When that occurs in a child with autism, my assumption is that being in the study changes the expectations of the caregivers and the caregivers’ behavior changes as a result."
...
"So part of what I wonder about is whether their expectations from the experiences they are having are changing for their child, and that’s changing not only their expectations, but their behavior. And that results in changes in the responses of the child."
This is important and highlights the effect that parental effort, attitude and expectations can have on their child's development. The so called "horse boy" liked riding, and hopefully, despite the trials he was subjected to, enjoyed having more of his father's attention than he would presumably have had usually, even if he did have to contend with a film crew tagging along capturing every moment of engagement.

A paediatrician called Dr. Rosen bafflingly reckons we should look more into “n of one” research studies. But what about statistics, which a clever man once said, exists to stop us making fools of ourselves?

Sarah Spence, paediatric neurologist thinks "these books do inspire hope for a lot of people with this disorder, which is very difficult and can make some families feel very hopeless."

I'm not so sure, I think these books can be harmful in that they present autism in such a negative light, they portray autistic people in discriminatory and damaging ways, and they claim that without some sort of dazzlingly unlikely breakthrough, autistic people are unlikely to make any progress. They are frequently false. They sometimes (as in this case) portray dangerous or highly aversive practices (horse riding without helmets, vodka spitting strangers) as necessary and minimise the importance of empathetic, accepting and understanding parenting and optimised and targeted education methods. They can be good at showing how it's is possible to use an autistic child's interests and preferences to help him or her to learn and develop, but they imply that without the particular system described in each particular book, the child would be lost...trapped forever in the fortress of their autism. Which is crap.

I dread the film.

29 comments:

Ed said...

"To make this story more engaging, it has to be portrayed as something miraculous and fantastical, because ordinary, everyday, slow-plodding progress does not read so well,” Ms. Fennell said."

And where would we everyday slow-plodding progressers be otherwise? probably still be making slow-plodding progress everyday....but we would be getting better respect for doing it!

Thanks Sharon, for giving this reporter and the readers a better perspective on such books.

Hammie said...

No! I think the film will be hilarious, can't wait. I linked you 24 hours ago thanks to Kristina.

Well done again.
xx
ps: I am insanely jealous

Manuel said...

NY Times.....oh my! How superb.......and as Hammie says I too an insanely jealous.....

AnnB said...

This month's Marie Claire also has a feature on this called.... wait for it "Horses and Shamans saved our son" It's really quite dangerous with quotes like "as a family we took a risk, and through whatever crazy leap of faith, found healing. As a scientist I can't explain it, but I know I am grateful." As a non scientist parent I find this disturbing, patronizing and very insulting. It's the old 'spend whatever you can to find healing' hard sell that really makes me mad! Well done Sharon for telling it like it is, again.

Grannymar said...

Well done Sharon! Yet again you clear away the garbage and tell it like it is.

I found a quotation some years ago and read it often:

"We don't have a disease. So we can't be 'cured.' This is just the way we are."
Jack Thomas, a student at a school for autistic teenagers. New York Times 20.12.2004

Sharon said...

Hi Ed, I'd have though that slow plodding progress was the way most humans learn! But when it comes to autism, it doesn't seem to count. Only miracles in which the autism is blasted away-kazaam!- seem to cut it.

Thanks for the kind words Ed. This book irritates me and I'm amazed at the huge levels of attention it's garnered when it seems as corny as it is horsey.

@Hammie, thanks for the link. Wow, Kristina was fast with this, bit that's hardly a surprise!

@Manuel, you're not jealous, you're an old hand at big media attention!

@AnnB, this thing is getting everywhere! It seems the publisher was right, well-off, crunchy westerner plus suitable exotic foreign place and people, unfamiliar and bizarre spititualism, with a dash of "gotta rescue the kid" to add a dramatic focus to it all, yep, it's a winner. Such a pity it demonises a child and presents a false image of his condition and recovery to sell so well.

I agree with you on that quote, Yuck.

@Grannymar, thanks very much.

farmwifetwo said...

I find the premise to be a good "movie" that I'll simply "eye-roll" and have to discuss b/c you know somewhere, someone is going to ask about it.

But I have a question... why is showing that a child with autism can learn be a bad thing??

Is it envy that causes people to slap at others who've spent a lot of time and effort trying to help their kids and have succeeded in atleast putting a good hole in the wall.

So, they went to Mongolia... it appears he enjoyed himself and with all the attention discovered there was a world out there... just waiting for him to explore.

Just as my boys have discovered, one that the elder enjoys 100% and hopefully the younger will reach 100% too, right now he still needs a respite worker to do those "Mom" things and keep him from wandering away. He's unimpressed... since he wants to be "normal" too and is PO'd when he can't do all his bro does.

Offit, knows vaccines, he's not a developmental pediatrician which means he is not an autism specialist.

I find it horrible that those with autism that don't want to join the real world.... slap at those that do.

S.

Casdok said...

I wonder if Mongolia will now get more tourists!

Sharon said...

@farmwifetwo, who said "showing that a child with autism can learn" is "a bad thing"?

Is this book really about trying to help the child? Do publishers hand out $1 million pre book payments for those whose main ambition is to spend time and effort helping their child? Or is this book more about a travel writing father making a great pitch to the book companies that he can provide exotic landscapes, strange rituals, animals and a dramatic recovery story?

Do you think the ritual described in this excerpt is something to be admired? It's not envy that makes me criticise this book.

I agree that it's great that the boy was able to learn via something he loved and no doubt he enjoyed hanging out with his dad, despite the intrusive film crew. But we can engage with children and their interests in our own environments too.

I've no idea what you mean about people with autism who supposedly don't want to join the "real world."

@Casdok, no doubt there are some canny Mongolians setting up their autism treatment shamanic businesses.

kathleen Leopold said...

Thanks for the post-someone sent me the Times article and I hadn't a chance to read it. Although I have to say-the one thought that popped into my head was "what would my children do if I threw them in the middle of a Shamanistic ritual?" I honestly think they would scream in fright...Thankfully, we haven't planned any Mongolian adventures...

bullet said...

Tom did some horse riding last term with his class. He absolutely loved it (we witnessed this for ourselves on his last lesson, he spent the entire time with a huge grin on his face and either giggling or shouting out "hello" to us). He's still autistic.

Sharon said...

@Kathleen, you're welcome. Duncan would hate it too. I'm sure you'll have some great adventures without needing to go anywhere far from home.

@bullet, I can just imagine Tom's happy face. It's great that he loved the horse riding. I know lots of people old and young who loves horses and riding. I've never taken Duncan. I asked him once if he wanted to try it but he didn't so we'll stick to train rides for now!

lisadom said...

Sitting around a kitchen with workbooks, sequence charts and task analysis is very tedious and it is rare for both parents to become involved in such activities, which can offer short and long term rewards for parents of autism.

Planning a trip, fundraising and putting all your heart and soul into going to Mongolia or Florida or South Africa (maybe Zebras can cure autism, worth a try?)
That is something that some parents can get involved with.

And in my experience the slow plodding work and attention is often given by the primary carer, whereas the less connected carer who may work outside the home most of the time, tends to get fired up by the dogs dolphins and .....zebras*.

And you know what, having the secondary care giver spend more time with their kid will help them alot, it is a pity they need the props of the furry friends to do it.

(*I am going to work on the zebra angle, Boo and I would really enjoy a trip to S.A. will let you know when I have a publisher lined up)

xx

Sharon said...

@Lisa, I think you're right there. Let me know how the zebra therapy goes. I'm sure Gerry Ryan will have you on to talk about it.

I'd love to try some such wacky notion on with a few publishers some day, see is anyone falls for it.

kristin.neff said...

Might be a good idea to read the book before slamming it. It's amazing how quick people are to judge things, with almost no information to go on. I am Rowan's mother, subject of the Horseboy, and I can tell you that I feel like I used to when people would judge me at the supermarket when Rowan was having a tantrum, assuming I was a horrible mother and Rowan a brat, without knowing anything about us at all. I hope people take more time to learn about you and understand your personal stories before making such harsh and unkind judgments. And in fact, based on ther viewpoints you've expressed here, I think many of you will actually find resonance in the book. We've had hundreds of e-mails from other autism parents (those who have actually read the book or seen the documentary) who've expressed their gratitude that we were able to raise awareness of the incredible struggles but incredible love we have for our wonderful children. (In fact, this is why our next book will about about the Gifts of Autism, because we believe that for every problem posed by autism there is a corresponding gift that us supposedly "normal" people can learn from.) By the way, the first thing we did when we got the advance was to open up a non-profit riding center for families who couldn't otherwise afford hippo-therapy (soaking up a huge portion of the advance). We wanted to give back to the autism community for our incredible good fortune. I hope all of you also find happiness, fulfilment, and prosperity in your lives. Autism parents are some of the bravest and most loving people around. Can't we support each other?

kristin.neff said...

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

"Rowan is still autistic - his essence, his many talents, are all tied up with it. He has been healed of the terrible dysfunctions that afficted him - his physical and emotional incontinence, his neurological firestorms, his anxiety and hyperacivity. But he has not been cured. Nor would I want him to be. To "cure" him, in terms of trying to tear the autism out, now seems to me completely wrong Why can't he exist between the worlds, with a foot in both, as many neurotypical people do? Think of immigrants to the United States, living with one foot in their home language and culture, the other in the West, walking in two worlds. It is a rich place to be. Can Rowan keep learning the skills necessary to swim in our world while retaining the magic of his own? It seems a tangible dream.

kristin.neff said...

And one final thing. One of the sad aspects of many people's dismissive reactions to the idea that we consulted traditional healers and shamans to help our son is the incredible arrogance and ethonocentrism of Westerns who believe that no healing tradition has any validity except their own. Humans had to find ways to improve well-being and happiness for thousands of years before modern science came along, and many of these healing traditions are very effective. (Not saying that science isn't also wonderful of course, and by the way we do use traditional therapies such as ABA as well, but do we have to restrict and limit our options?)

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

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

Gonzo said...

Really great post Sharon!

Incidentally, having worked as a bartender for years, I was exposed to plenty of vodka spitting strangers in my time, so that part made me laugh out loud, even though it's sad that someone suggests a child should be exposed to it.

And Kristin, hilarious how that "tantrum in the supermarket" line became the mantra of self-pitying parents everywhere, it just never gets old!

Anonymous said...

What about adult aspies who find going to the supermarket very distressing due to all the noise, including from screaming kids?

I have heard of this book before and no doubt it would be very interesting but only a minority could afford to cart their autistic child off to outer Mongolia or Patagonia or Timbuktu.

Nick McGivney said...

Excellent. Excellent. I don't get around the autiesphere as much as I should, but I've just tanked up on this story quite comprehensively, thank you very much. The headline ouch is probably the result of some clueless sub-editor rather than Ms Rich. And I'd be fully with Hammie. I don't think you'll be dreading the film so much as ignoring it, like the vast number of people will.

aspi3laine said...

As someone with some background in biochemistry, I would like to give my own opinion on so-called 'miracle cures'.
A few years ago there was a hormone called 'secretin': which was supposed to 'cure' autism. There was NO scientific evidence to prove that it actually worked. And it was expensive: around £100, for a few drops.

Yet, giving this hormone to young children was quite popular for some time. There was NO scientific evidence to prove that it worked. It wasn't even licensed as a drug and the sale of it was unregulated. Even worse, a child could have an allergic reaction to a 'miracle cure' and even end up dying as a result.

I think that any similar attempts to 'cure' a child of autism, amount to child abuse. It is a blatant abuse of the rights of a child, but yet no one seems to speak out against it.

Sharon said...

@Kristin Neff, many thanks for sharing your opinion on what I have written. I have addressed your comments in a separate blog post.

@Gonzo, thanks a lot. The vodka spat over you, didn't it cure you? Perhaps you need the drums going at the same time. Good point about the supermarket scenario as a universal example of autism mum woes.

@Anon, I'm sure going to the supermarket would be hard enough for those of sensitive hearing without screaming children. Ear defenders might help. And though I try when appropriate to minimise the impact on others of my son's occasional loud moments, I'm not going to stop taking him with me solely so he doesn't annoy people.

@Nick, welcome back to the autiesphere. I agree that Motoko wouldn't have written such a headline and I wrote to her afterwards thanking her for the great article but telling her what I thought of the headline too. Pity I didn't get a link!
I'll see what sort of noise is made about the film when it's out and might just have to add my own considered opinion to the babble!

@aspi3laine, welcome and thanks for your comments. I had a look at your blog and am delighted there's an autistic Irish blogger out there. You'll be on the sidebar pronto, and thanks for having me on yours.
I've heard of the secretin craze. It's described well in "Autism's False Prophets" and unlike other autism cure crazes, there was a well organised clinical trial which only proved its total lack of efficacy. Funnily enough I read somewhere last year that it was coming back into fashion again.

I think there are loads of people speaking out against this form of child abuse, just look around the Autism Hub blogs.

enlightenedhorsemanship.net said...

Hi
I"m new to reading your blog and am currently exploring the other side of this issue from the point of view of Hippotherapy and family issues.

I look forward to reading your "cons." Thanks very much for providing a forum for learning about differing opinions.

Sharon said...

Elightenedhorsemanship, thanks for reading. I read on your blog that you read the book and loved it. As I've said I have not read it, just a load of the articles about it and a few excerpts. I'm sure it reads well; the author is a writer by trade. I'm just concerned about the content describing mistreatment of a child and the disturbing language used to describe people like my son.

Mary H. said...

Thank you for this thoughtful, well-written post. I recently found your blog (through enlightenedhorsemanship's blog) and very much enjoyed this post.

I worry greatly when people use anecdotal evidence and single case studies to promote cures for anything. I think people want to believe these things work. If we don't establish controls, it's easy to perceive a lot more progress than is actually taking place.

I also worry greatly when people (especially beginner riders) horseback ride without a helmet. Won't be much of a cure if someone falls off and dashes their head on a rock. I sure hope they're using helmets in the hippo-therapy program they've started. I love my horses to death, but they're big, unpredictable, prey animals who sometimes do stupid things unexpectedly. Maybe it looks "uncool" to wear a helmet, but I'll keep wearing my brain bucket.

cheers,

Mary H.
http://stalecheerios.com/blog

Sharon said...

Mary H, thank you for reading and commenting. I agree with your entirely on the need for controls and to refrain from mistaking anecdotes for evidence.

I appreciate your sharing your thoughts of riding without a helmet. I'm not lucky enough to know much about horses but I did notice that the boy wasn't wearing a helmet in the pictures I've seen of his Mongolia trip and didn't think it was safe.

Mary K. Greer said...

It's hard to believe the fear and closed mindedness expressed in so many of these comments. Do you propose legislation to force all Mongolian children to wear helmets while riding horses, or is that only necessary for white Westerners?

Why do so many people try to make the book into something it never claims to be (a scientific study or claim for "cure"), when that's not what it is at all? Why do supposed scientists and rational thinkers find it necessary to falsify what the book says, and attack their own projections on the author's personality and intentions, in order to tear down this book? Such dishonesty is outrageous!

If you read the book, you'll see that the child was not whipped (although the parents were). Sure some shamanic practices seem barbaric, but won't radiation treatment be seen that way to those looking back from the future? And who knows if some future, more humane treatments won't look more like shamanic practices?

If 80% of all parents of autistic children divorce, and others separate into rigid forms of primary and secondary caregivers or turn all care over to "professionals," isn't there something to be said for a family that sticks together and makes radical heart-wrenching family trauma into something meaningful and growth producing for themselves and others?

What I hear in so many of these comments is fear, including the fear that others may experience joy, spiritual growth and a sense of adventure, as if it threatens their own security lodged in parameters set by their personally-sanctioned authorities.

It is from such anecedotal stories and risk-takers that new directions can be found for scientific research and possibly effective practices—ones that serve a range of individual needs.

We need to hear from our pioneers and explorers to bring hope, inspiration and new possibilities to what might otherwise become fixated stop-gap, rather than life giving, measures. We need the plodders and we need the risk-takers. The world is not one-size-fits-all.

Mary K. Greer said...

I wrote you a polite comment that offered a different perspective to yours about ten days ago and see that you censored it. I now see that except for the author's wife, you don't allow anyone to advocate a different point of view from your own. I'm really sorry to see this blog article get so much recognition when you practice such blatant censorship that even mild criticism is not allowed. To bad you didn't read the book, but only allowed the opinions of others to sway you.

Anonymous said...

After spending a lifetime as a volunteer with autistic kids, I find the book and how it came to be financed and published, disturbing and frightening. Autistic children's parents are vulnerable enough in their agony, grief and hope, to be viewed as useful consumers of shlock.