The Horse Boy is not just different from other autism books -- in its depiction of a family who accepts their child for who he is while refusing to stop until they heal that which is causing his misery, it is unique.
I was very inspired by The Horse Boy, by the fact that you sought out your son with autism's strengths and interests and affinities in horses, in shamans -- and did your utmost to support him.
I think I just did what every parent does. I honestly think that most parents in our situation routinely go to the ends of the earth in their own living room, every day. In our particular case it meant a physical journey. But even if we had never left Texas, the process would have been the same, I think.
Remember, it wasn’t my idea to put Rowan on Betsy [the horse] – I was actively keeping him away, and the [initial, U.S.-based] meeting with the [Bushmen] shamans happened completely organically when I was bringing the delegation to the United Nations. They met Rowan and they did a bit of work, and it was like “Oh, we’re getting a result.” But I didn’t have the theory that “Hmm, maybe if I put him on a horse” or “Maybe if I take him to the shamans” -- if he had a positive reaction to something, I followed it.
I appreciated reading the book and then watching the movie, because children with autism are so different from each other, and we got to see that Rowan wasn’t a stereotypical remote autistic children. We got to see that yours was a child in genuine distress, see that you really needed to help him.
Yes. We were in crisis.
And then you got to see his genuine soothing, the scene where he was on Betsy, just communing with her, got to hear Kristin’s voice as well. The book and the movie worked together so well.
So, now for the actual questions. Have you heard accounts from other parents of children with autism who have been inspired by your journey?
Yes, there have been a few, actually.
It started with a guy in New York, a banker, who wrote and said “How do I go about a Mongolia trip?” And I told him, “It’s not really that difficult, you just need to contact [their Mongolian guide] Tulga.” And they went, and they met with Ghoste [the shaman], and they reported a really good result. And in fact, they flew one of Ghoste’s protégées, a younger shaman, back to New York, and I think he’s still there, staying with them right now. He was certainly there a few weeks ago.
I’ve heard from other families who did similar journeys, not because they read The Horse Boy, but because they read The Horse Boy and realized they weren’t the only ones. There was a family in New Jersey who had taken their kid to see an Ecuadorian shaman.
A woman I know in Washington D.C. whose son suffered a traumatic brain injury, it might as well have been autism, because they had to bring him back from zero functioning, and he’s doing amazingly. And they were at Johns Hopkins hospital in Baltimore -- that’s very East Coast, not the least bit woo-woo -- but it turns out they use traditional faith healers in a couple of the wards.
I also found out that in a lot of the hospitals in New Mexico and Arizona, where there’s a strong Native American population, are letting shamans into the wards, healers into the wards. The doctors there say, “Well, we don’t know why, but people seem to get better quicker, and vacate their beds quicker."
So, yeah, I’ve had quite a few contacts with people like that, whether they’ve done exactly what we’ve done, or whether they’ve done something similar.
We also now run these camps here in the U.S. and the UK, and we’re starting to do them in Australia, and other parts of Europe where we do a three- to four-day immersion in nature, camping, as a family, with your child, with the horses, and making something of a journey, every day on horseback. And we’ve seen incredible results with that. There aren’t shamans involved, but nonetheless we’ve seen some non-verbal children become verbal and things like that.
In fact I just had a French family out here last week, we worked with their child for about four days and I didn’t really think we were getting anywhere with her, but I just got an email yesterday saying that she started speaking some words the day after they left, and now she’s effectively verbal.
I’ve also talked to people who’ve been working with therapeutic riding for years who’ve said, “Oh yes, we were doing this thirty years ago.” [laughs] Something like our book becomes a catalyst for people who have already been doing these things in isolation, who say “We’ve been doing this too, with good results.” So there’s been quite a lot of it.
I’m not going to say it works for one hundred percent of the kids. But I think any autism parents gets used to trying a few things before you hit on something that works. I’ve seen some things work really well for other kids that didn’t work for Rowan. And it doesn’t mean they’re bad therapies, it just means that, as you know, autism manifests so differently in each case.
Yes, I’m convinced that “autism” is an umbrella term for a bunch of different conditions that will be teased apart eventually.
So, I wanted to ask: you were flogged, you were asked to ritually cleanse your private bits on camera, you ate what was described as "shit soup," you struggled through Siberian swamps on horseback. What enabled you to endure, and keep going?
[Laughs] To be honest, the only thing that made Kristin balk was going on horseback, because she’s not really into horses. But I met Kristin in India. She’d already been living there about a year by herself. And immediately after I met her we were off trekking through the rainforest, we hitchhiked across Africa together. She’s an adventurous woman.
Partly, we’re relatively used to challenge and discomfort when we travel; if it’s really interesting, it doesn’t matter. And also, your average trip to the grocery store with a severely autistic child is so f***ing stressful that you might as well go to Mongolia!
I mean, when you’re getting vomited on at 70 MPH on the freeway, and screamed at and hit and shat all over, and everyone telling you what a terrible parent you are for not controlling your child, well, why not go to Africa or Mongolia? How much more stressful can it get? So that was to some degree our attitude.
Did you experience any horrors that didn't make it into the book?
I think they’re all in there, actually. For the film, you have to be more selective, because you’ve only got an hour and a half, and also if you don’t have footage of it, you can’t show it, like one of the accidents I had, on horseback where the horse disappeared into the bog and rolled over – no one was filming it, so you can’t show it. It’s pretty much all in there.
Rowan was named after your Bushman shaman friend Besa – has Rowan seen Besa since you returned from Mongolia?
Yes! Ghoste told us we had to do a shamanic journey every year for three years. So in 2008 we went [to see Besa], and Besa had to come from the country he lives in, Botswana, into the neighboring country, Namibia, because I’m actually banned from Botswana. Logistically it was all quite crazy – I had to get him a passport, and he lives under a tree. But we managed it all, and there were two fantastic Namibian Bushmen healers who also worked on Rowan. And when we got back from that trip, what happened was something we weren’t looking for at all, which was a mathematical dialog. Rowan suddenly got to grips with math in a way that he had not been able to before.
And then this last year, we were in Australia for work, with a Yalanji Aboriginal shaman, in Northern Queensland, in the rainforest under New Guinea, and that was extraordinary. At the end of that healing, Rowan sat up on the bench and said, “I feel better in my head! I feel happy!” then ran off to chase this brush turkey which had scooted by, came back, gave the [shaman] a hug, and buggered off again.
This year we’re going to be on the Navajo reservation here, working with healers. That's partly in reaction to people sometimes saying, “Well it’s all very well and good for you guys, you going off around the world, but what about me here in the U.S.A.?” So this is just going to be a two-hour drive from Phoenix. A lot of this is more accessible than one might think.
What is the role of rhythm in these shamanic experiences? How much rhythm is involved?
All of it -- song, drumming, dance, trance -- is always done against a backdrop of rhythm. Almost without exception. Even when it’s a single person, singing by themselves, they always get into a rhythm.
Then of course with riding it’s the same thing. You ride a horse, you’re in rhythm.
And we’ve always danced with Rowan, always always, we do this kind of hippie dance, called Bodychoir, quite often. He’s been going since he was in the womb. People will tell you that in order to be a healthy, happy human being, you should get together in community regularly and dance.
If you ever do any therapeutic riding, keep in mind that that’s one of the reasons we do so much riding with the child, sitting behind them, because that way you can really get into a swinging rhythm with the horse’s back. Then you sing as you go, and you tap on their body, and you’re a voice in the air, you’re not a face that the child has to protect themselves from. But with most therapeutic riding, you don’t get to do those things, they say their insurance won’t cover it.
When you returned, you founded New Trails - an equestrian center that brings kids with autism and special needs together with neurotypical kids. What kinds of successes have you been witnessing?
Usually it comes down to kids who are non-verbal becoming verbal or kids who are barely verbal becoming much more verbal, and kids with neurological issues getting through their issues. It’s a mixture of those two things. That seems to be where we see the primary benefit.
But we also create this social environment, because we always have the families come out. There’s no drop off. If they have a sibling, we say bring the sibling, because that’s the expert we need. And then what we’ll do is we’ll have the sibling, the autistic kids and the non-autistic kids all playing together. So our two most useful pieces of equipment are not our horses – they are our trampoline and our swingset climbing frame. They’re all on there together. And we have other animals – we have bunnies, guinea pigs, reptiles, what ever the kids are going to respond to – toys, books, etc. They can go anywhere and do anything. It’s not a barn. There’s no stable they can walk into and accidentally get under the feet of a horse. The horses live outside, and they all have shelters they walk into together to get out of the wind.
The kids can’t get in trouble. We’re not ever having to say, “No, don’t! Stop!” But that social thing seems to be really important, where they make friendships across the autism barrier. We see magic happening between the children. And a lot of it is really us just creating that environment and then standing back.
We have specific techniques which seem to bring out the verbal skills, the most crucial of which is a big western saddle, oversize, with room for both an adult and a child, either I or one of the volunteers or a parent or a trusted therapist, will get up there with the child, and we’ll go trail riding. We go into the woods, we talk about everything we’re seeing. Sometimes we don’t do it as a trot, we do it as a canter. This brings out a euphoria in the child, and we often get words afterwards.
And then all the horses are circus-trained. I’ve trained them to do tricks. So if you say “down,” the horse will bow; if you say “up,” the horse will get on its hind legs. That way, if you have a child who’s on the cusp of being verbal, and they attempt this one-syllable word, they get this HUGE payoff! It’s really cool, and it’s really empowering, and it’s just fun. And then they’re often inclined to do it again, and I have to train the horses to do more tricks because the kids get ahead of me.
A lot of time, for the sensory issues, is spent lying on the horse, bareback; just hugging it, lying on it, using it like a big ol’ couch. We have someone standing there just waiting to scoop the child off should the horse spook or something, so we make it safe, but we keep the time frame very open-ended. We say, “If you come out at ten o’clock, we’ll probably ride somewhere between ten and eleven, but you can hang out as long as the kid needs to hang out. And we make sure we have enough volunteers to handle that.
Is Rowan actively involved in New Trails?
Yes he is. He goes to school there. He does his academics there in the morning, with the volunteers, and then in the afternoons, he’s there for the play dates. He’s very much around.
It’s been three years since Mongolia, so Rowan is eight now. What wonderful things are you noticing about him lately?
It’s intersting, you know, because he’s still autistic, obviously, he’ll always be autistic. The word “cure” never passes my lips. But I do think there’s a difference between the word “healing” and the word “cure” that’s very specific. Healing is, if you like, the grand amelioration of negative symptoms to the point that a condition is no longer a dysfunction or a disorder, or a disease even.
So then you can say, “Well, what are the strengths of this condition?” When the dysfunctions went away in Mongolia, the incontinence, the tantruming, the inability to make friends – all those stopped, either during or right after the various rituals that we did in Mongolia. Then suddenly, you could get interested in “Yes, but there are these special intellectual and emotional gifts of autism,” and that’s what we see much more, so academically, he’s way ahead, like a whole grade ahead. I’ve noticed this with a lot of autistic kids, unless there’s another kind of condition associated with the autism, causing mental retardation or something like that, most of them, the intellect is not the problem. [Rowan’s] a second grader but he’s finishing the third-grade curriculum now.
And the next film and book is his idea. He came up with this word called, “Endangerous,” meaning animals that are both endangered and dangerous. And we are off to look at endangered animals and film them. You’ll be seeing this changing planet through the eyes of an autistic child. I asked him if he wanted to get behind the camera for this one, and he said, “Yeah!” We’re getting as many people on that team as possible who are on the spectrum. So that’s going to be interesting, and it all came from him, it wasn’t my idea.
So he continues to lead us. All he has to do is tell me something he wants to do, and I’ll go to bat.
Conversationally and socially, he’s really caught up, this past year. But he still has that quirky, on-his-own-terms way of doing it. But increasingly, people who meet him don’t necessarily know, until they hang out with him for quite a while.
The reason I ask is I’m tired of people asking after the challenges of raising a child with autism and never asking after any positive things. We already know autism can bring challenges, the media hits us over the head with it. I’d like to see more balance.
There is one thing where the negative stuff can be useful, when you’re in a market or school or some public setting, so people have some awareness of why that child is behaving like that, and they’re not going to walk up to that parent and tell them what a shit parent they are. That’s useful, to understand what they come from, and the exhaustion that the parents go through. And also the distress and suffering that the kids are going through!
But the balance, that’s not part of the dialog, which is very much the Western way, isn’t it? There’s a problem, we must fix it, and that’s good to some degree, but part of fixing it is looking at what’s good, and encouraging that.
It seems to me that a lot of parenting of non-autistic kids is also done from the negative, it’s all about discipline, about what they shouldn’t do, not about what they can do or ought to do.
Instead of understanding their behavior, which is the root of ABA or Applied Behavioral Analysis.
Which can also be applied inappropriately, especially if you’re a new parent, in fear, in grief – you’re very vulnerable to the more rigid ABA therapists coming in and saying, “My way or the highway,” and they sometimes do more harm than good. Even though the methodology of ABA is sound, the application can be flawed.
A lot of what we did with Rowan on horseback you could say is ABA, the rapid response stuff. But I was doing it in an environment that was intrinsically motivating. I wasn’t saying, “If you comply and do this thing, I will reward you by taking you riding;” it was like, “I know you want to go riding, so let’s do it there.” I think that giving kids a negative experience until such time as they respond and then rewarding them, that’s like bad horse training. You don’t train a champion that way, because the choice doesn’t come from within the child.
Exactly. If you don’t understand what’s behind the behavior of any child, parenting them is going to be difficult, because you’re not understanding that behavior is communication.
We’re big believers in community visibility as a form of activism. I know that you’ve had a lot of bad experiences, it can be so traumatic to take your child with autism to the grocery story if that’s overwhelming for them -- and so I was wondering how Rowan is doing in terms of being out and about in the community these days?
Any of the problems that were like that up to Mongolia, all of that stuff is a memory. I was quite worried when we got back from Mongolia that he’d regress, because with the first exposure he had to Shamans [in the United States, before Mongolia], he really did start to lose some of his more excessive symptoms, and then he fell back into the depths of them once the shamans went home. But, after Mongolia, they never came back.
So, Rowan out and about is a delight, but it wasn’t always so. Something I think is not a bad plan is to contact the manager of your local supermarket, and say, “We have these kids – could we have a day where we bring several of them in? Alert all your staff, this is what it’s going to be like, there’s going to be some shouting, but hey – we’ll spend some money.” That kind of community education is quite good – you’re not really asking anyone to do anything, you’re just making them more aware.
At the end of the book there was an incident with a psychologist with a German accent, who thought that Rowan didn’t have the right to be out in public. So how surprising, to have this huge success with Ghoste, and then be censored by this stranger, in public. And you said you got it on film?
We did get it on film, but the distribution company said, “No, you can’t put it on film, we’ll be sued.” But it’s there!
The only reason I didn’t hit him -- ‘cause I was so ready to hit him -- is that I thought actually, no, this is a great gift -- this is exactly what the problem with the West is in this particular type of situation, this type of judgmentalism -- My God, he’s a psychologist! Of all the people who ought to know better! If that isn’t a metaphor for what needs to get better, so I just need to keep the guy talking, because he needs to show us who he is, since he’s not actively harming my son. So then I started asking him all sorts of questions. And then his answers got bananas! Saying that “they” could be there for a short time, as long as they didn’t cause these neurotypical people any problem. And what was interesting to me is that he had zero professional curiosity.
Thank you for this conversation, I truly appreciate it. Is there anything else you'd like people to know?
Most of the professionals we dealt with, with the best of intentions, basically told us that our lives were over [because of Rowan's autism]. And I remember thinking, “I don’t believe you. I think this is going to be the biggest adventure of all. And this is going to be a beautiful adventure. But it’s going to be real adventure.
And long before he got to Mongolia, if you go ride where I ride with Rowan, here in Texas, we’ll ride for three-four hours. We’ll see peccaries, we’ll see coyotes, we’ll see snakes, we’ll be chased by ornery cows, we eat while food, we’ll tie the horse up and climb trees, we do stuff. That thing that you are disqualified, or somehow you as a family are disqualified from adventure [because of an autism diagnosis] is such an unwittingly neo-fascist approach.
If you go to the Kalahari or Mongolia, life is so harsh and practical there, you’re not going to do something because it’s a whimsical notion. There, neuropsychiatric symptoms in children are regarded as qualification for a job. That is a fundamentally different approach. And it’s not just “Oh, let’s give the poor little bugger something to do,” It comes from the practical approach of if someone can do something, let’s have them do something, because we cannot afford to waste a single human resource. And so, guess what, we’ve had 50,000 years in this particular environment, and we know from experience that kids with the neuropsychiatric stuff, by the time they hit puberty, they are going into training as shamans because they seem to have this affinity with the spirit world, seem to have already one foot in it, and a special sensitivity. So they are then qualified for this integral role. Not the Special Olympics, but an integral role.
A guy like Besa [the Bushmen shaman] is a complete adult autist. I’ve never had a proper conversation with him. He doesn’t looks you in the eye, he speaks in incomprehensible riddles, and yet people come from all over the place to be healed by him, he’s got a wife and kids, he’s completely integral to his community. In our culture we have a relatively narrow choices for how you can participate economically. But in some other cultures, ironically, the playing field is much wider. And I suspect that with the massive rise in autism that we’re seeing, that the nature of our own work force is going to change dramatically in the next thirty years, and it’s going to change for the better. Because our society will not be able to do without the human resources of these people. And I don’t mean just the high-functioning people or the people with Asperger’s, I mean the classic autists. That, to me, is really interesting and exciting. And society’s not going to do it because they want to do it, because they don’t want to do it – it involves effort. They’re going to do it because they have to do it, when it hits people’s pocketbooks.
Shannnon Des Roches Rosa originally published this interview on Squidalicious.com. It is republished here by permission of Mr. Isaacson.