Product Description:
The Horse Boy? author Rupert Isaacson and his son Rowan in Elgin, Tex.
In today?s New York Times, reporter Motoko Rich writes about a new book, ?The Horse Boy,? that chronicles a father?s trip to Mongolia to ride horses and visit shamans as part of an effort to heal his son?s autism. Ms. Rich asked several top autism experts whether the book offers important insights or false hope for families coping with autism. Here?s what they said:
Temple Grandin, author of ?Thinking in Pictures: My Life with Autism,? and professor of animal science at Colorado State University
I have to put on my hat of being responsible and giving parents level-headed advice, and so I can?t just say to a parent, ?Take your kids to Mongolia.? That?s not reasonable.
But I got to thinking: what was it about Mongolia that was actually beneficial? I think it?s important to expose young autistic kids to new things, and one of the advantages you would have had in Mongolia is that a child could play in a stream and it?s not noisy. So what can you do here to replicate the same experiences? Take your children to the park, let them feed the ducks.
The other thing is horseback riding seems to be really good for these kids. I have had a number of parents tell me that when their child was in a therapeutic riding program, their child spoke their first words. It?s rhythm and balance. These activities are really good for the autistic brain.
One of the other things they were doing in Mongolia was keeping him engaged with different things. And then when he?d scream about wanting to go back to the van, that?s when he got over-stimulated.
Simon Baron-Cohen, director of the Autism Research Center at Cambridge University
This is one family?s story. In other words, it might be difficult to generalize it to anyone else.
From a scientists? perspective, the only way you can make any statements about a treatment working or not working is if it goes through some kind of formal evaluation, which needs more than one child, and the typical design of those scientific studies is you have two groups, one of whom gets the treatment and one of whom doesn?t. Obviously none of that has happened in this case.
Children often do develop in leaps and bounds rather than having some kind of steady, linear increase, and that?s true for any child ? for typically developing children as well as children with a disability. Sometimes it is a change in environment or usual surroundings or input.
Here the child is hearing a different language, and there?s been a radical change in everything, so it could be that for any child, an exciting trip full of novelty will be a good stimulus for development. 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.
Portia Iversen, co-founder of Cure Autism Now
I think it?s pretty well becoming accepted that autism is going to have a lot of causes, and there are going to be a lot of kinds. So this is the reason when one of these books with, if not a cure, but an effective treatment comes along, why some people will be thrilled and others will be so angry.
We don?t know what autism is yet. We don?t know how many kinds there are. For that reason, we don?t know what treatments will work on what kids, and we certainly don?t know why they work. It?s such a devastating disorder that as soon as something comes along that seems to work, what parent wouldn?t try anything that might seem to save the child, no matter how unlikely it is. These things that parents discover and observe are extremely valuable because they are with the kids all day long. I think it?s a mistake to polarize first-hand parental experience and scientific method and observation. They should benefit from each other.
Ari Ne?eman, president of the Autistic Self Advocacy Network
Horses healing one?s child is something that contributes toward 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. But it?s also apparent to me that the issue of animals and the role that parents can play is one that our community is cognizant of in the role of emotional support animals.
One of the topics of advocacy that we have explored is looking into ensuring that one can maintain a certain level of legal rights to have an emotional support animal. 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.
Paul Offit, chief of infectious diseases at Children?s Hospital of Philadelphia and author of ?Autism?s False Prophets: Bad Science, Risky Medicine, and the Search for a Cure?
Obviously these are anecdotal experiences without a control group. The natural history of mild to moderate autism is that it does get better over time. You?re worse between 2 and 5, and you tend to get better between 5 and 10. You mature, and you get better. If you take a child who is screaming uncontrollably and put them in a car, they calm down.
Maybe with horse riding, it?s not to say it doesn?t help in the long term. But the notion that it is, in any sense, getting to the fundamental cause or problem of autism, and will ever make that go away, is a false hope, and I think false hope is always bad. It?s misleading and expensive.
Sally Rogers, professor of psychiatry and behavioral sciences at the Mind Institute at the University of California at Davis
It is not atypical for young children with autism who have not before had some kind of intervention to respond with big changes in behavior over a relatively short period of time. Children with autism are responsive to changes in the social environment and changes in the demand for learning.
Miracles happen. We all know about people who recover from illnesses where no one expected it could happen. So I would never close my mind to the fact that inexplicable things can happen for children and families.
There are a number of studies that are carried out with autism where there are placebo groups, and the placebo children 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. If we expect to lose weight, we eat less. If you expect that your child is going to be naughty, you are on edge, and your child rebels more.
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.
Dr. Lawrence D. Rosen, pediatrician and founder of the Whole Child Center in Oradell, N.J.
It always puzzles me why we don?t look more at these ?n of one? research studies. There?s a whole research literature developing around this concept looking at best case scenarios. Look at the person who had the quote-in-quote ?miracle? cure, whether it?s H.I.V., cancer or autism. What is generalizable?
Working with animals is certainly something that children respond to. There is research being done in this area. We have many kids who?ve gone to farms in this area and seen similar responses in improved behavior, improvements in toileting and communication. Getting out in nature, using any opportunity to expose children to different social and emotional environments ? those are all good lessons. You have to be careful ? you don?t want to say that all children can be cured by riding horses, but there are some interesting lessons in this.
Sarah Spence, pediatric neurologist at the National Institute of Mental Health
It?s very difficult for us as scientists to say what really did make this child have the progress that he made. For people who are religious, they?re going to think that it was a spiritual thing; for people that aren?t religious, they?re going to have their skepticism about that, but they may think it?s the horse issue. It?s very difficult to say.
I think 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. To see somebody who had been having the same kind of symptoms that your child has really making great progress is always going to make you feel better. There are people who are advocating for pet therapy in general. It increases nonverbal communication, which is something that is difficult for children on the spectrum. There are interesting ideas about it, but there?s not a lot of evidence.
To learn more about Rupert Isaacson, author of ?The Horse Boy,? and his son Rowan, read the full article, ?A Gallop Toward Hope: One Family?s Adventure in Fighting Autism.? And then please join the discussion belo
