By John C.
A few weeks ago, I spoke with Rupert Isaacson, author of The Horse Boy and subject of the new documentary. The interviews happened over the phone, and we spoke about everything from getting the movie made and book written, to what parents of autistic kids can do to help their children. Here’s part 1 of the interview. Part 2 is coming tomorrow.
Being familiar with autism and Aspergers on a personal level, what we all really liked about the book and movie is your feelings towards autism and it’s place in our society. Did you feel the same way before you took the journey to Mongolia?
I think I was definitely getting there. I had finished that feeling of grief that comes with the initial diagnoses, and had really started to see the gift of autism. What really solidified it in Mongolia, was seeing that people in other cultures really don’t see these differences as something to be fixed. It’s not like they just make a place in society because they have to, it is that this is seen as a different set of skills. There is no question that these are valuable individuals. In our culture, it is like there is no place, and there for it’s more about, how can we change you. Seeing other societies, and how they make a shift, is a very beautiful thing to see first hand.
How much did you know about Autism before Rowan’s diagnosis?
Not much. I’d gone to a Waldorf school when I was a kid, and there had been a couple of autistic kids there. Both of them were math geniuses, but they also had severe behavior issues. Now this was a while back, so they hadn’t as much knowledge about how to help them. Sort of, they were still trying to make square pegs go in round holes...
Was there a turning point for you when you realized that you weren’t going to cure your son, and realized that that was okay?
Very much so, because one of the great things about hanging out with healers is that you get a very good distinction between heal and cure. Chronic conditions are not cured. What you want to do, is annihilate the symptoms so they are no longer a dysfunction, no longer a problem. Healing means getting to a point where you have the positives, not the negative. Once you can focus on the positives, the gifts that come with autism allow you to see it as not a bad or good thing, just a way of being.
Has your son, Rowan, seen the movie, and what does he think about seeing himself on screen?
Rowan actually was very much a part of re-watching a lot of the footage with us. It actually really helped him get a different perspective - the social perspective of watching people - and how they related to him, others and each other. Actually, a lot of therapists use video for autistic kids to help them watch how they are interacting. So, participating was sort of that thing for him, and we would ask his opinion of which things should stay, or which should go. Sitting there with him in the editing room, that was really beautiful.
What challenges did you face getting the trip to Mongolia organized, and how did the book and movie come to be?
It's easier to understand if you think about that in film, you can only show what you have footage of. Back in ‘04, I did human rights work with the Bushmen in Africa. So it was somewhat familiar to me about the healers there, I had seen people get sick and then get better with their help. Anyway, I had to bring a delegation of Bushmen to the United Nations, where they were going to talk about illegal beatings and torture tied into the diamond mines.
It was there that their trained healers met Rowan. They offered to do work with him. They don't need a degree to be qualified to do this, but the laying on hands can’t hurt him, so we figured to give it a go. For the 3 to 5 days they were with him, his behaviors lessened, he started pointing, and acting calmer. But, when they went back and we went home, all of the symptoms came back. It was shortly after this, that Rowan met Betsy. It was then that his language started and on the horse, I saw the same leaps forward, if temporary that we saw with the Bushmen. I thought about bringing him to Africa, but his thing was horses. It was then that I though, where’s there a horse culture that is combined with healing? Mongolia.
That was 2004,when he was still too young to make the journey. Now, I'm a writer, so I knew that I wanted to write about it. Still, other parents could not verify that what I wrote was true, so I spoke to Michael Scott, a filmmaker friend, who was initially going to make a film in Botswana, where there was the massive problems with torture. But in 2006, we actually won the case in Botswana for the Bushmen, which slightly lowered the need for a film, because they had the land back. So, I told him we were planning a trip in a year, once Rowan was big enough, to Mongolia. I said he should come along, so that if there were changes in Rowan’s behavior, it would be documented, and if not, I think the value of it being on film, would just add to the general body of knowledge about autism. The fact that it helped, doesn't mean that every parent should go to Mongolia, that was very special to us, but they should rather take their child’s interests, and see where that leads them. That was the initial motivation of getting it on film, but never in a million years, did we imagine that it would be opening in movie theatres across the world.
Was it difficult to have your son filmed at his most vulnerable moments? It must have been a fine line to draw between wanting to share your story, and protecting your son’s privacy.
The thing about once you enter that kind of life with autism, is that everywhere you go, the street, the supermarket, every autism parent is out there all the time being judged as bad parents. People will come up and tell you that you have bad parenting skills, try to hit your child, it can get really, really bad. The only information is from others, and if you get good result somewhere, you should make that knowledge available for other parents. If you have no problems, you don't have a kid with autism. So, you don’t think of privacy or not, you don’t have that luxury to not have to worry about public behavior. The thing is, we get contacted by so many parents. Usually by e-mail, we get as many as 30 a day. It’s so different from before Mongolia. We have parents wanting to know what therapeutic riding places we know of close to them, what we can tell them, etc. Once you enter the world of autism, the initial reaction might be that your freedom is over, and ideas about what you expected for your child can go out the window, but you have to make new plans and come to terms with it.
How is your riding therapy program going, and how many kids do you have coming to the program?
It’s going well. We have about 20 coming a week. It’s not just the kids though, it’s the whole family. One of the things that was very clear was that going out to nature with the family really helps everyone out a lot. I lived up in Canada for a little while, and what impressed me is that a lot more families take camping trips together. They go up to Algonquin Park for a weekend for example, so a lot of Canadian kids grow up with a culture of doing that, and a knowledge in nature, and I really saw a value with that. So, the families are coming, are here for relaxing, it's not all structured. You aren’t told, ‘ok. You have an appointment at 10:00, by 10:30, bugger off!’. Especially on the first visit, everyone's invited to explore. We have hiking, playrooms, other animals, and the horses are a component of that. It doesn't matter if a kid gets on a horse on the first day.
What we have learned, is that the terrible tantrums happen in an overloaded neurological state. Once they are out of the man made environment and into nature, a lot of the things that are causing the overload are removed. The family can all calm down together, and it is then that you really see the intellect come out. We often invite people to bring their child’s therapists along, and we ask them to try the therapy, that they would usually do in a room, on a trampoline, under a tree, etc. It is here that you often see more effectiveness and response.
When people enroll their kids in the program, do they unrealistically expect their kids to be cured of their autism?
No one does, actually. Autism parents are very savvy people. About a year into the process, people within the autism community know what they're dealing with, and they want to lessen the bad effects and issues, not a cure.
What advice would you give to parents of kids with autism, who are feeling at a loss and don’t know what to do?
What I’d say is, follow your child’s interest. I was actively trying to keep Rowan away from Betsy at first, but he kept on running up to her. The thing is, that those who are nonverbal, the only way they can tell you what they want, is to show you. If a kid is going to a particular TV show, bicycles, steam trains, horses, etc., don't try to make your child be where they don’t want to be, instead trust your parental instincts.
The main thing though, is to get them into nature. It can be the garden, the city park, even the local state park. You don’t have to bring them up to Wood Bison National Park, it can just be local. Just try the therapies there. Try those things and whatever therapies, and remember, you don't have to be an extremist. We are not born again Shamans, we still do western therapies.
Come back tomorrow for part 2, where I asked questions about what were some of Rupert’s favourite moments from this incredible journey, and how the film was received at HotDocs in Toronto.