I had the pleasure of interviewing Rupert Isaacson, the author of The Horse Boy and The Long Ride Home, and we had such a great, informative chat. Rupert has a lot to say about what it’s like to raise a child with autism, ABA therapy, working with Temple Grandin, and why we should value all sorts of people in the workforce. Here is part one of the interview with Rupert Isaacson–autism advocate, adventure, and author!
So, you kind of went on a crazy adventure.
Yes, we did. And that was just the first one. The book tells the story of all the subsequent ones we had to do in Australia and Africa.
How did you convince your wife to go along with it?
Well, just going to the grocery story is incredibly stressful. And we’re going to somehow keep this tantruming, incontinent kid, across Mongolia, with no washing machines even. My point was that because even going to the supermarket was so stressful, we might as well go to Mongolia. After all, we’re sort of going to Mongolia every time we go to the supermarket. And, you know, this is what my gut is telling me. And she sort of learned after a while to trust my gut.
I think one of the main differences for me, being brought up as a British White African is that we are actually taught in South Africa to really trust our gut. And there’s a really good reason. So, for example, if you grow up in South Africa, you might speak 3 languages, you might speak 4 languages, but there are actually 8 different languages in South Africa and you will often be in parts where you don’t necessarily know what’s being spoken.
It’s a very violent country. You have dangerous animals. You spend a lot of in the bush and we spend a lot of time hunting, and some of those animals will hunt you back. So the idea of trusting you gut, sort of trusting your gut feeling, is something that is very much in the culture of growing up there and so I think she had realized this and that comes from years of living with me. And so she’s once again rolling her eyes at her insane husband.
What she actually said was, “Fine, Ru, after all for me it’s a win-win because if it all goes to hell in a hand-basket, I can say ‘I told you so’ forever. And if it goes right, well it goes right, and that’s great.” You know, she has a sense of humor.
Words of a True Autism Advocate
So, I raise a child with autism myself, so I found it really interesting some of the parallels between what you guys experienced and what we’ve experienced. It’s kind of amazing.
So there was one point where Rowan had rejected the horse and sought comfort in the van instead. And you said that you had learned that it was more important for you to be there for him instead of sort of having these expectations. I thought that was very real. So it was a teaching moment and I just wanted to ask, because of that point where you said he was a better father because he forced you to listen, whether you feel it’s more important to get your children to adapt to the world or to help them find their own way as people?
I think that it’s not either or. What one wants to do is strike for harmony between the two. So most people, unfortunately, are told, sometimes by over aggressive family members or therapists that they should fall more on the side of making their kids abide by socially acceptable behavior and less on the other side but it’s of course–it should be on the other side. Of course, all children, whether autistic or not, we know from our own childhoods that we responded very very well to people that recognized our interests and made us feel heard. We would actually adapt our behaviors very well to those people because it was a reasonable thing to do. And we often rebelled against people that were coercive. Why would an autistic human being be any different?
So given that a lot of these kids are what I would call therapied-out, they go to school, and then they go to their speech therapists, and they’re being told be all these adults all the time “Be different from who you are. No what you are is not really cool. No, you cannot stim out in the corner. You’ve got to do this… You’ve got to do this… You’ve got to do this…” and they become exhausted mentally, emotionally.
No. Striking the harmony is breaking the pattern we have in our society of trying to over-direct. And what seems to us like we’re massively going in the direction of following the child, is actually only meeting them halfway because we’ve started so far in the extreme position on the other side. And where neurotypical kids will put up with the stressors of that to a certain degree, although they will rebel massively later on, the stressors of that for a young autistic are greater. One has to revise one’s approach, yeah, and it’s counter-intuitive. What I’ve found is that there were things I remembered that my mother used to get on my back about. Like you must set the table. I made her a bet that by the age of 10 he would totally be setting the table when I need him to. But I’m not going to pick that battle now at 6 when what I need to do is get better proteins in him. And if he needs truck around doing that, I will let him truck around doing that. And then later on, I will ask him address this issue and ask him if he’s ready. And I won my bet, but one of my strengths is that I’m a journalist, so I can notice what people like to do. So I’m the opposite of ABA. I would not say to a kid, “If you do this boring thing that you really don’t want to do, then I will reward you by going to the trampoline with you when you want.” I’ll say, “Let’s go straight to the trampoline where you want to be and let’s have a chat about this thing.” Which one is going to work better? And the other strength is that I’m a horse trainer. And the interesting thing is that horses are not that dissimilar from people on the spectrum in that they’re ruled by their amygdala, that fight or freeze part of the brain. They solve their issues by running away. So if you’re training young horses and push too much, you’ll get flattened and your bones will break, and anybody who has worked with horses and has experienced this has been humbled by having that happen to them, so it teaches you to be more patient. You observe what the horses need and read body language. It’s about establishing trust first and observation and then let’s think about the things we want to teach, rather than into the deep end, which doesn’t work for autistic individuals.
And I think if those things worked, we’d know it by now. We’d have all these autistic kids graduating their ABA programs and starting their own companies and that’s not happening.
Yeah. There are a lot of proponents for ABA and I was going to ask you how you felt about ABA because it is a very rigid model. I’ve seen so many not-so-great reviews about how intensive it is. I have a friend who did it and it took up so much of her time.
And her money. Don’t forget her money.
And I think that if it worked stunningly, we’d have noticed by now. And now of course, there are so many adult autistic testimonies coming out about how awful their experience was. It’s like we’re reacting to panic and we’re trying to fix autism, which is not what we should be trying to do. There’s nothing to fix. I speak to Temple Grandin all the time. I’ve worked directly with her building up the curriculum for the movement method that we do, and I don’t think I need to fix Temple Grandin from being Temple Grandin. But an ABA therapist might because when you are with her, I can tell you that she’s not in that persona that she has–her public persona. She is pretty darned autistic. And she’ll sit there and she’ll stim out. She’ll repeat things endlessly in loops. So does that mean that we should be fixing Temple Grandin? I think not. But people absolutely would have said that to her if she was that child or young adult.
It’s not unambiguous. There are some good things in ABA and if you can find the right ABA therapist who can take a slow-based approach that can be good, but the problem is that, as you know, it can attract that wrong sort of personality. And those people are often a bit kind of mean. And they’re often kind of mean to the kids and I’ve observed it so many times.
What we need is to follow the kids, let them show us what interests them, understand the brain science behind the approach–in our case it’s movement–and why. And follow them. And let the process play out slowly. We don’t have any difficulty with neurotypical kids accepting that it’s a 20-year education from kindergarten through college. Why are we trying to rush these kids through? Because we’re reacting to what we think is a crisis and we need to, whew, take a breath. Kids are who they are. And there are many of them going on to have jobs, careers, love lives, everything.
Yes, if you poop in your pants, you can’t make friends, and you can’t speak, these are things that you need to address. And we can, over time. But there is no problem to fix. We can teach these skills that we need to teach and look for the genius. So I’m interested in working with people who do that. And we’re about to start this Movement Method website and working really wonderful woman with Christine Barnett, the author of The Spark, with her son Jacob, who is now 17 and getting his Ph.D. in Quantum Physics, and he was severe. And I know him. I’ve met him. And I’m working with a woman named Arabella Carter-Johnson, from the UK, whose daughter Iris Grace, who is nonverbal and eight produces these incredible, incredible paintings that are now on sale in galleries. And her book is just coming out.
We’re not trying to fix these people from who they are. We’re saying they have a special genius, so let’s over time, work on the skills they will need, sure, but let’s not coerce them into it.
Why We Should Begin to Embrace Autism
I saw a part of the documentary where you said that most other cultures do not separate those with neurological disorders from society like we do in Western Society. Have you found some places that are more accepting than others, or are you finding more that it’s not here?
In Western Society, we celebrate things that are above average. We like for things to be amazing. That’s what we reward. So the autists that pop up like this, like Temple Grandin–like Rowan to some degree–like Jacob Barnett getting his PH.D., like those that appear in the media–we like that. We reward that. And we regard anything below that standard as not worth dealing with. But we don’t just do this with autism in our society. We do it with everything. It’s like everything’s got to be above average. Everything’s got to be amazing. Everything’s got to be special and unique and, of course, that’s just not possible. Law of averages says that most of us are going to be just average at what we do, but very very good at certain things.
So I think we absolutely do see that in our society if we go to Silicon Valley, we meet a ton of autists earning very well, being valued for who they are, if they have a certain type of autistic mind. And in the arts, you meet mad, crazy, clearly adult autistic people in music and in art and so forth. In academia we do too. Where I think it has yet to come, and I think this is where Temple Grandin actually is the biggest pioneer, is with the classic autists. Not the asperger’s, not the savants, but the ones who, just through sheer dent of determination and hard work and invested interest in something produce work of absolute amazingness. And I think this is going to happen more and more in Western Society. Why? Again, it comes back to the law of averages. It’s where 1 in 68, now they say 1 in 45 kids, well, in 20 years, that’s the workforce. And so whether people want to accept it or don’t want to accept it, they’re actually going to see probably the largest minority within the workforce. And then we’ll see all sorts of interest in all sorts of interest.
I think we’re in a very interesting time with autism right now where we can start seeing these shifts. And it’s economics that drives it. And that we become more like those indigenous societies. You can’t afford to waste human resources when you’re up there in the Mongolian Mountains, when you’re out there in the Kalahari Desert, and we’re going to be a bit like that. Right now we can afford to marginalize them, but when it’s that essential part of the population, then you’ve actually got to figure out where they fit in human resources.
They have amazing memories, they have these extraordinary interests, and they have very quiet egos. Okay. Maybe we should be looking for this sort of people in the workforce. Okay, maybe they need a bit of support here, but then again, so does this other bloke over here who’s neurotypical. Maybe he’s an alcoholic. Or maybe this person over here who is neurotypical but very insecure. Or this person who is neurotypical but creates all kinds of crap within the office. People on the spectrum are generally much more peaceful, much less volatile. They tend to go through their more volatile stages in their earlier years for neurological reasons and then they sort of cool out as they get older. It’s very interesting. If they’re given the right support and nurturing, but if their spirits or broken or they’re put on all sorts of medication, well it’s any guess what might happen. But that would be the same for anybody, right?
This is part one of a series interview with Rupert Isaacson, author of The Horse Boy and The Long Ride Home. While you can purchase both books on Amazon, if you purchase it from his website, horseboyworld.com, proceeds from the book go toward funding scholarships for individual who attend New Trails Center, which helps those with autism, at-risk youth, veterans with PTSD, and so many others using horses, movement, nature, and a supportive community. If you’re already impressed with his words, just wait until you see how he works as an autism advocate for his own child while advocating the best for others.
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Part two of this interview will be out in the next week or so. He has so much more to say about autism, medication, our education system, and more. Stay tuned!
Originally posted 2016-04-01 23:56:53.