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.
