The Horse Boy's Kristin Neff on Autism and Self-Compassion

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When my friend Amanda pressed The Horse Boy into my hands, I flinched. I'd heard it was yet another Miracle Autism Cure book, and I was all done with cure talk. But she persevered: "It's not about a cure, it's about healing!" My eyes narrowed.

She changed tactics, being a savvy travel writer sort and knowing how I long for journeys abroad: "They go to Mongolia, so really, it's more of travelogue. And it's beautifully written. You'll love it, trust me."

She was right. I truly enjoyed reading how Rupert Isaacson and Kristin Neff took their son Rowan on a horseback journey to meet shamans in Mongolian Siberia, and in doing so healed not his autism -- Rowan did not lose his autism diagnosis -- but rather those symptoms of his autism that were intensely distressing both him and his parents. Their story is inspiring, not necessarily because of the changes in Rowan, but because his parents recognized their son's positive reactions to shamanic rituals as well as horses and did their utmost to combine and pursue those positive reactions.

I was further inspired by The Horse Boy companion documentary -- though it was painful to see rather than read about Rowan in genuine distress -- because I got to see Rowan's Mongolia. I also appreciated its interspersed interviews with autism luminaries, including Temple Grandin, Simon Baron-Cohen, and Roy Richard Grinker.

Though the film did feature Kristin Neff's viewpoints (the book is from Rupert's perspective), I wanted to hear more about Kristin's take on the challenges of traveling to a remote area with a child with autism, her parenting philosophy, her work as a psychology professor and how her Buddhism colors it all. I was given that chance just yesterday. Here are the highlights of our conversation:

On your Mongolian journey, you were flogged, you were asked to ritually cleanse your private bits on camera, you ate what was described as "sh*t soup," you struggled through Siberian swamps on horseback. What enabled you to endure and keep going?

I fought Rupert tooth and nail about the idea for maybe eighteen months, because I thought it was crazy, that it would never happen. Then when it looked like he was going to go, he said, “Listen, Kristin, you don’t have to come along. I’ll have other support with me, it can be a journey with just me and Rowan.” And when he said that, my first thought was, “I don’t want to miss out!” I had this negative reaction, more of a fear reaction, and once I realized I didn’t have to go, the more positive side came out. It was partly “I don’t want to miss out,” and it was partly “I don’t want to not be with my son when he does this.” So once I committed, I was all in. Like the English say, “In for a penny, in for a pound.”

Remember, it’s not like I hadn’t traveled before. I spent a year in India, I spent time with Rupert and the Bushmen [in Africa], so it’s not like I was coming straight from a shopping mall. In India, on the days where you didn’t go with the flow, everything that could go wrong did go wrong. And on the days where you went with it, maybe the bus breaks down, it all went more smoothly. So I guess I’d already learned that skill, that rolling with the punches, just seeing what happens.

Luckily I didn’t know about the flogging ahead of time –- that would have freaked me out. But it’s so strange –- when you’re in that situation, you say, “Well, this is what is happening right now.” I’ve also got a long-term Buddhist meditation practice and that really helped me a lot as well, being in the moment and taking whatever came up.

You began the journey as not much of a horse person. Did your Mongolian experience change that?

I haven’t ridden since Mongolia. Literally! I have not gotten on a horse since Mongolia.

When Rupert and I first got together, I thought, “Oh, this guy loves horses,” and though I’d never ridden a horse before I said, “I’ll learn so that we can do this together, it’s his big passion in life.” So I took lessons for about two years, but I never really had the desire to ride, I was doing it more for Rupert. Because it’s not like riding a bike where you learn it and then you can do it; you have to keep riding. After I got thrown four different times, I said, “I give up, it’s not for me.” So I can ride well enough so that if I have to, I can, but I can’t say I enjoy it.

I had to ask, because on the few horseback excursions I’ve done, my entire body was killing me after just two hours.

Yes, well mine certainly did at first. That once scene [in the film] where I got in a really bitchy mood, and said, “I’ve only been riding half an hour and I hate this horse and I hurt!” and on and on, that was at the beginning of the trip. Your muscles get used to it after a while. I did my share of complaining, and the director was quite kind by not including all those bits in the final cut.

You were told by the shaman Ghoste, who performed the ceremony around which your journey centered, that Rowan himself showed signs of being a shaman. Have more signs appeared since your family returned from Mongolia?

It’s hard to say at this point. He’s certainly very different. If Rowan never does [show signs], that’s totally fine. But if does want to explore that, not only would we be open to it, but we would know the people for him to talk to.

In the film, you expressed a belief parallel though not identical to Rupert's about how Rowan's Mongolia experience helped heal his emotional, physical and social dysfunctions. Would you mind revisiting your beliefs on why Ghoste and the others shamans affected your son so dramatically?

It’s not that I wasn’t open to shamanism. But I think I was more convinced after the final healing with [the shaman] Ghoste, mainly because of the toilet training. It was like a miracle. The very first time afterward, [Rowan] pooped in a river, and Rupert said, “Look! He did it! He’s trained! And I said, “Well, we’ll see.” But then the first toilet he came to, he did it. It was insane. But it was funny, too, Rupert and I both went in and we were hugging him, and he did it!

Put it this way: I am more convinced than I was, and also we’ve had a couple more healing journeys since, so it’s not so foreign to me. Having said that, there’s certainly a very powerful placebo effect. The placebo effect works not only with the patient’s belief system, but the doctors’ belief system as well -- if you use the placebo with the doctors and not the patient, it still works. So the placebo effect is real, we see people get better. So we know now that there’s something about the mind that can change physiological functioning. I certainly wouldn’t presume to say how it works, but it would be imprudent to close your mind to the possibilities that if we don’t understand something, therefore it can’t exist. The best thing to say seems to be, “The result seems good, let’s just go with it.”

The rational, skeptic side of myself –- because I do have both sides -– didn’t want this to be a film about “Shamanism!” and “Shamanism Works!” I really wanted to talk about what life is with an autistic kid, and the fact that it can be an adventure, if you open your heart and open your mind. That was why I was willing to have my life on film. And it was an interesting story –- even though my husband’s idea was crazy, it was different, and it would be a way a lot of people might learn about autism who would never go see an autism movie.

What are the most wonderful things you want people to know about your son? Things both in line with and contrary to autism stereotypes?

He’s intensely loving, he’ll turn to us and say, “I love you Mom, I love you Dad.” I used to joke to Rupert, “Aha! At least we know he’s not autistic!” when we knew something was up but we hadn’t had him diagnosed yet. I missed his diagnosis by six to eight months because of that.

He’s really cuddly, he gives us lots of hugs.

He has an amazing sense of humor. He has always had that, from the time he was little. He’s got this little chortle laugh. That’s how we found a way to communicate with him, through joking and teasing and being silly.

I’m constantly impressed by his knowledge of animals and animal taxonomy. He can name for you all the odd-toed versus even-toed ungulates. He wants to be a zookeeper when he grows up, and I’m sure he’ll have some career with animals, without a doubt.

He’s kind of moody –- he has good days and bad days. This morning, he was really upset because the Internet was down and he wanted to play an Internet game, then he lost a wheel on a train he was going to paint. Those are the types of things that will really upset him –- even though it’s not like the film, where he did the back arching and screaming, he’ll still get really upset.

The other thing about him is that he talks in questions. It’s kind of cute, though it’s puzzling –- so when he lost the wheel on the train, he said, “When are we going to have a train that doesn’t lose its wheels?”

He’s just so totally unique and fascinating. He constantly fascinates me.

And people really fall in love with him. He’s got this natural charisma, with his smile and his laugh, and he’s so affectionate -- people are drawn to him like a magnet. When he hits adolescence, it’s going to be interesting!

There was a modest sex scene between you and Rupert near the end of the book. Did Rupert negotiate its inclusion with you? [Kristin's answer flowed naturally into my final question: How has being both a psychologist and a Buddhist helped you mother Rowan?]

I read a couple of drafts before it was published, so I certainly could have struck that out. In fact, there was one scene that was a bit more explicit, and I said, “Uh-uh.” I said [Rupert] could suggest but that he didn’t have to go into detail. So I actually did have some input. I didn’t mind because it gives a complete picture that [sex] is part of our lives, too, and we’re a normal couple.

Also, my field of study is self-compassion, it’s what I do all my research on, and I’m writing a book. One of the things that this practice has given me is that I’m really okay with being my honest, authentic self.

It’s not that I like people judging me. It was kind of hurtful, some people really went after us because of the movie, they said that we made it all up, that we’re in it for the money, and people who didn’t know me were making all these assumptions about my character. It was really strange; I never thought I’d be in that position.

But in terms of the stuff that is true about me, I’m really okay with it. I’m also okay with admitting my flaws and my shortcomings, and that it’s okay to be imperfect. In my book, I actually go into some quite personal details about my life, because I feel that if you’re going to tell a story honestly, and if you’re going to affect people, and if you then make it a picture-perfect, Ozzie and Harriet-type thing, it’s not real life.

Self-compassion made a huge difference in raising Rowan. Both Rupert and I are really committed to self-compassion. We really made sure we had compassion for how difficult it was to be Rowan’s parents. We gave each other breaks, nights off.

I think a lot of autism parents are so in problem-solving mode, and they’re so focused on helping their kid –- it’s hard to admit the grief, because you feel, “I love my kid so much –- how can I admit how difficult, and how painful, and how depressing it is sometimes?” And I think that you have to acknowledge those painful feelings, and that actually allows you to love your child even more. I don’t think autism parents do that nearly enough –- or any parents, for that matter. But especially the autism parents. You have to acknowledge the grief.

When Rowan was first diagnosed, I went to a local Autism Society of America meeting, and everyone was kind of happy, and talking about this and that. I said, “Look, I am struggling with an intense amount of grief right now” and then they all helped and supported me.

So it can be really hard, like this morning, when Rowan had a bad day, and for an hour he was in such distress, and there was nothing we could do. I made him a little replacement toy wheel [for his train] and I was so clever and I was so proud of myself –- and it would not do. It’s really really frustrating and hard. Sometimes. And then sometimes it’s beautiful and glorious, and he’s the best kid in the entire world –- and he is! But it’s all of it. It’s the whole –- spectrum.

It’s not the positive instead of the negative, it's both. As Kahlil Gibran says, “The deeper that sorrow carves into your being, the more joy you can contain.” And I think there is really some aspect to that with autism. The amount of sorrow and frustration and grief is really intense, but it matures you. And then you have the joy and you have the good things, and that’s more intense. I think it’s a growth-learning-opening experience, every bit as much –- or more, actually -- for the parents than the kids. And that’s beautiful, and it’s difficult. It’s certainly an interesting path to go down, isn’t it?

I think autism breaks open your heart. The big lesson in life is that you can’t control things, and you have to be open to what life brings you. You can bang your head against the wall of reality as much as you want and it won’t help. Autism forces you to accept what you don’t want. That is the whole lesson with Buddhism and a lot of spiritual traditions, it’s all about surrendering to this greater unfolding and not trying to control things. Autism parents are forced to learn that lesson, and that’s a really good lesson to learn.

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If you'd like to see The Horse Boy documentary, it will play on the PBS series Independent Lens on Tuesday, May 11, at 10 PM. You can also buy or rent the film on iTunes.

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Shannon Des Roches Rosa is thrilled about taking her son Leo on his own potentially healing journey this summer: a boating trip. Shannon tries to balance positivity and honesty about autism and parenting at Squidalicious.com. 

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