When a child is diagnosed with autism it can initially be devastating for parents—but then confusion sets in—what’s the most helpful approach? After discovering their autistic son’s affinity with horses, one family took journeys on horseback to traditional healers across the world, and went on to develop a new method of connecting with autistic children using horses and nature. But not everybody agrees it’s the most effective way to go.
Lynne Malcolm: Welcome to All in the Mind on RN, Lynne Malcolm with you.
The Horse Boy trailer:
Rupert Isaacson: In April 2004 my son Rowan was diagnosed with autism. The feeling was like being hit across the face with a baseball bat. Our lives became clogged under a mountain of conflicting information on the disorder. We tried everything. He didn't speak to us. One day he ran away from me and ran right up to a horse called Betsy. The moment I put Rowan on Betsy's back he began to speak.
Rowan: He's a nice horse.
Rupert Isaacson: As Rowan began to open up to me for the first time, and light bulb went on in my head. Was there a place on earth that combined healing with horses? Mongolia. This is a story about how as a family we did something crazy, how we ended up going halfway across the world in search of a miracle.
Lynne Malcolm: That's Rupert Isaacson in his film The Horse Boy, his autobiographical documentary that follows his and his wife's quest to find healing for their autistic son Rowan.
His story is exotic and captivating, and he admits himself, as we'll hear shortly, that the path their family took is not for everybody, but it does highlight what many parents feel when their child is diagnosed with autism; that they are prepared to try anything.
Autism is now thought of as part of a spectrum of neurobiological disorders. It affects around 1 in 110 people and little is known about its causes. Those on the autism spectrum have problems with social skills and communication, and have unusual ways of learning, paying attention and reacting to sensations.
Also today, Nicole Rogerson, CEO of Autism Awareness Australia. She's the mother of Jack who's now 18, but she clearly remembers what it was like to receive his diagnosis of autism when he was three and a half years old.
Nicole Rogerson: I don't think I could use a word other than devastating. Incredibly upsetting around the ages of two and three to realise that your child is not reaching the developmental norms. You then go into the job (and it is a job) of managing the school system for the next 12 years. And then probably to where I am now as my son with autism is leaving the school system and transitioning to work. So they are very different phases that families go through.
Lynne Malcolm: So just a sense of what the day-to-day is like on an emotional level I guess, on a management level.
Nicole Rogerson: I think the answer to that is it very much depends on what level of early intervention a child has had. So I can say quite ironically autism has almost no role in my day-to-day life, although it does obviously every day because my son had access to fantastic quality early intervention. However, there would be families all around Australia whose children either have had less intervention or have such a significant amount of autism that the day-to-day lives of managing that person is all consuming.
Lynne Malcolm: So what are the early signs that parents can look out for?
Nicole Rogerson: Yes, this is such a tricky one, I can now look back at myself and say, my goodness, a doctor with a degree out of a cereal box could have diagnosed Jack, but we didn't see it. He was our first child, we really didn't know. But really the signs were so obvious. It's a lack of eye contact, oftentimes the child will appear to be deaf almost, they won't necessarily turn to their own name, there will be a lack of pointing or waiting. The child will be very happy playing on their own. They might not come and seek you out for you to get something for them or to play with them. It's very easy for us to diagnose children at 18 months, certainly before the age of two, and we know that the earlier we start early intervention, ultimately the better outcome for the person, the individual involved.
Lynne Malcolm: Nicole Rogerson.
Journalist Rupert Isaacson and his wife, developmental psychologist Kristin Neff, were initially confused about their son Rowan's behaviour.
Rupert Isaacson: When Rowan was about 12 months he had words, he was developing normally, and then he lost them and started to behave very obsessively. We knew something was up but we didn't know it was autism at that point because he made such good eye contact.
She then by about 14, 15 months got a list of all the early warning signs and realised that he had them all. The crucial one is no pointing, lining up of toys, not pointing, no perspective taking, and then these massive, massive, massive tantrums, that we later realised came for neurological reasons but at the time it's just like incoming artillery.
Then we realised, okay, yes, he's on the spectrum. He didn't toilet train until he was almost 6, and that happened in fact in Mongolia in the first journey that we did, The Horse Boy, that launched these subsequent journeys in The Long Ride Home.
Lynne Malcolm: In his latest book, The Long Ride Home, Rupert Isaacson documents these adventures the family took in the hope that traditional shamans or healers could help their son.
They set out on these journeys after Rupert discovered that his son Rowan had a real affinity with horses. Rupert had been a passionate horse man himself, but initially thought it safest to keep his son away from horses.
Rupert Isaacson: I just noticed that Rowan did better outside, and he tantrumed less. So we were in the woods a lot, and me trying to figure out how to find a way into my son's world. He would move, move, move and he would be on the trails and I'd be with him, but we didn't really have communication.
However, one day he went straight through the undergrowth, through the fence before I could grab him, into my neighbour's horse pasture. And as sod's law would have it that day all five of my neighbour's horses were grazing right by the fence. He threw himself under their hooves and lay on his back, and I thought he was going to get trampled.
I was creeping up to try and grab him, you know, my heart in my mouth, but in fact something rather wonderful happened; the lead mare of that herd, a mare called Betsy, very gently pushed the other horses off with her nose and then bent her head to my son and began to lick and chew with her lips and half close the eye, which is an acceptance and submission gesture with horses, not dissimilar to a dog showing its belly. And if you are horse trainer there are multiple techniques you can use to get a horse to do this for you, but I hadn't seen a horse spontaneously offer this before, much less to a babbling autistic two-and-a-half-year-old lying on his back.
And I realised, okay, he's got the horse gene that runs in our family. A lot of people in my family are good with horses, but this is tragic because I'll never share it with him because of his autism, and actually I burst into tears. But fortunately, like many parents, I turned out to be 100% wrong.
What happened first was, you know, he wanted to just be up on Betsy, so I would let him lie on her back while she grazed, a very quiet older horse, and all his what's called stimming, you know, the self-stimulatory activity, the rocking, the flapping, would just go away.
Lynne Malcolm: So autistic children will repeat something over and over and over again.
Rupert Isaacson: Oh yes, the repetitive stuff. And then he had echolalia where he would repeat stuff he'd heard, but he couldn't say 'Mummy I'm hungry', 'Mummy I'm thirsty', 'Mummy I love you'. He could repeat half of an advertising jingle he'd heard or something like that. But he became properly verbal the moment I got in the saddle with him and started to ride. So we literally lived in the saddle together for about two and a half years, hours and hours a day, and we would take books up there, we would learn to count the footfalls of the horse. He learnt to read his language game, he learned his maths.
Lynne Malcolm: As you can hear, Rupert Isaacson is British but he has an African family background and played a part in winning back the ancestral lands of the Bushmen of the Kalahari, and a group in Botswana.
Through his contact with these groups he got to know some of the traditional healers or shamans, and they offered to help his son, Rowan. Because of his background, Rupert was already quite open to concept of traditional healing
Rupert Isaacson: They really got a result. For the four or five days he was with them he really lost appreciably a lot of his obsessive behaviours. So we were doing every orthodox therapy under the sun—OT speech, ABA, some biomedical things as well—but none of them were really that radical in terms of their effect. But I couldn't help but notice…okay, radical and positive reaction to the horse, radical and positive reaction to these healers, is there a place where healing and horses are combined? Africa is not a horse culture. Where is it, where does the horse Equus caballus come from? Mongolia. A strong system of shamanism there and a strong gut feeling; gotta go there.
And we went out to Mongolia with a kid that was autistic and we came back with a kid that was autistic, there was no cure, there is no cure for autism. He was still incontinent, still tantruming, still unable to make friends. He left those behind him in Mongolia. But the last healer, the healer of the Reindeer People up in South Siberia, a tribe that actually lives with reindeer, rides on reindeer, lives through reindeer, said I had to do three more journeys to confirm that healing. So I did, and that's what The Long Ride Home is all about.
Lynne Malcolm: Whilst the experiences with traditional healers seemed to be helpful, Rupert Isaacson acknowledges that many people will be sceptical.
Rupert Isaacson: I do agree that you don't have to go see shamans, this was simply a personal thing for our family, but definitely outdoors in nature all together, family, unconditional love, support, you can't go wrong with.
Lynne Malcolm: What makes horses so special and the influence of horses?
Rupert Isaacson: It's an interesting one, and of course not every kid with autism is into horses. With Horse Boy Method we are as good without the horse as we are with the horse. Our main ethic is follow the child. But eventually most of the kids actually do respond to the horses very well, and it's all about neuro-sensory stuff and getting communication. And the way it happens is this. When you ride with the child in front of you, which is how we do it in Horse Boy, we don't ride by leading the child, and the reason we do this is that if you ride the horse, if you ride him well, you can create these really dancelike rhythms. And the reason it feels so good is it fills your body with a feel-good hormone called oxytocin. That's why they invented the rocking chair, for example, that's why you rock babies, that's why it feels good to dance.
And the child who is racked with anxiety, with sensory discomfort, gets this industrial sized shot of bliss hormone. And then if you think about what autism actually means, the word 'auto' is a Greek word and it means the self. So autism, self-ism, locked within the self. One of the big difficulties is the relationship with the exterior world. What the horse can do which no other animal can really do as well, is it carries us into the exterior world, and if you do it right by creating these lovely dancey rhythms, you do it in a way that fills you with oxytocin, so it's delight, it's wonder, it's fun, it's cool, and you're out there in the exterior world, you insinuate yourself into his thought processes, you tailor the whole conversation to his obsessive interests. If he's into The Lion King we are singing all The Lion King songs up there. And the child responds and comes forward, and from there you can build and build and build and build. And this is the real magic of it.
We train people in something called Horse Boy Method, and we can do it with a horse and we can do it without a horse. So we can train people to do what we've learned how to do with horses in an urban environment, or we can show them the purer method with horses. And it comes down to six relatively simple things. The first thing you've got to do is set up the correct environment, and what I mean by that is no bad sensory triggers, no fluorescent strip lights, no industrial machine noise, no cigarette smoke, no yappy dog, no perfume, none of these things that are known to shut autistic kids down.
Then you work on a static horse body-to-body, like my son used to do when he would want to lie up there and use Betsy like a big old couch, and that calms the nervous system down. Then the third bit, we ride with the kids and that begins to open the mind. And then from there we really built. We played perspective taking games, rule-based games like tag, like hide and seek, like a red light/green light, and then we start jousting and doing it with swords. Then we move to the fifth point which is academics. We can actually teach the whole national curriculum up there, and we do. You can teach fractions up there. You do it kinetically, you ride half the circle, you ride a quarter of the circle. You make it funny. Toilet humour becomes the natural sciences, et cetera.
And then finally the sixth method, the kid gets too big to share the saddle with you. By then you want him to start teaching you about what interests him, that self-advocacy, and for that we drive the horse in long lines. And the kid takes over the teaching. And by that point the kid is usually ready to turn around and become a volunteer and mentor for the other younger kids coming up. And this can be done with surfing, this can be done with any kinetic activity, but the horse I think gives you your best result, but you can do it even on your shoulders or in a wheelbarrow or in a swing. So listeners don't have to feel, oh my gosh, I have to go out and buy a horse or go see shamans or anything like this, no, no, no, you don't, that was for us, but you do need to follow your child, you do need to get out there in nature.
Lynne Malcolm: Rupert Isaacson, director of the Horse Boy Foundation, a not-for-profit organisation based in Texas, which uses nature, community and what they call the healing power of horses to support families living with autism.
You're with All in the Mind on RN and online, I'm Lynne Malcolm.
When a child is diagnosed with autism it's inevitably a challenging time for families, and the best approach is not always clear.
After Nicole Rogerson's son was diagnosed at the age of three she set up an early intervention program for autistic kids at the Lizard Children's Centre. She's also the CEO of Autism Awareness Australia. She strongly disagrees with Rupert Isaacson and his Horse Boy Method.
Nicole Rogerson: Look, it sounds beautiful, and it is beautiful. I'd love the idea of treatment for autism to be universally accessible, things like horseriding, riding on the back of a dolphin, play therapy, I wish all of those things had any scientific ability to support their efficacy, but the truth is they don't. It's a great parental anecdote, it was a nice book that sold well, and it went on to be a documentary, but it is our job to stop vulnerable parents from reading that and thinking, oh my goodness, this could be the way forward. Because, you know what, when you are lost out there in what to do with your child and you don't know what to do, you'll do anything. I'm sure Mr Isaacson, for him it was a really important part of his journey. It's a lovely thing that they did, and if that helped them bond and they got a trip to Nepal and they met some shamans and all of those things, fantastic if that worked for his family, but the grownups in the room have to point parents in the direction of scientific evidence-based best practice for children with autism, which is not universally available in Australia.
Lynne Malcolm: Are there some aspects of his approach that you agree with? For example, I think one of the things that he emphasises is how important it is for these children to spend time actively outdoors.
Nicole Rogerson: Look, the outdoor argument I can't say that I know any science to particularly back that up. However, I do know it is important to keep children with autism active. The more we engage with children, the more we are bringing them out of what I call la la land, the better that they are going to do. So yes, to a certain extent, if he was spending a lot of time with his son, albeit on a horse, his son certainly would have been at least engaged and interacting, and that part of it certainly has merit.
Lynne Malcolm: And he also suggests that you should do your best to take the child's lead, to enter the child's world.
Nicole Rogerson: Yeah, I'm going to disagree on that point quite strongly. I don't think anyone sits down with a two- or three-year-old and says, 'So, how would you like your education to roll out? Would you like us to send you to a good quality school that means you're going to do a hell of a lot of study in order to get to university?' Not many kids…it's our job as parents and grownups to lead them in the direction that they need to go.
For children with autism, a lot of their time will be spent in self-stimulatory behaviour. By that I mean…oh, it can be a whole range of things—flapping their arms, jumping up and down, it can be looking out of the periphery of their eyes, it can be doing anything but engaging in mainstream life. So as parents it's our job to lead our children to have as much independence and to alleviate the more drastic aspects of an autism diagnosis. So leading that child into those inappropriate activities is not where I see getting them to that ultimate goal of independence.
Lynne Malcolm: Nicole Rogerson.
Rupert Isaacson has observed many children with autism benefit from his Horse Boy Method, so I wondered if he'd teamed up with scientists and academics to do research and provide some empirical proof for his approach.
Rupert Isaacson: Absolutely. What's happened is they've come to us. Initially there was a lot of arrogance from the mainstream of science saying, 'We have the answers, and people like that long-haired bloke with the horses over there, these guys are full of…' And gradually parents have said okay, if your traditional scientific methods are so good, why are kids not recovering?
So now the scientists, a new generation are coming through and they are saying, you know what, maybe we need to look at some of these other things. The University of Texas has done a study in Horse Boy Method, particularly the outcomes of our three-day camps where we tend to see a lot of change. And they found that there was a significant improvement in the child's what's called neurocognitive awareness, which is how the information gets from the nervous system to the brain.
The University of Belmont in Nashville in Tennessee is looking at bringing us in to be part of their PhD program for occupational therapy. We are talking with various school groups about how to teach them how to do some of the stuff that we've learned how to do with horses without horses. It's what we call Horse Boy Learning, and it's basically movement-based learning. You know, in 10 years' time we will probably know a lot more about it. In the meantime though honestly I am much more interested in just getting the work done.
Lynne Malcolm: I have noticed that the CEO of Autism Awareness Australia, I think she read an article about your work, and was quite critical of horse therapy. You know, there is scepticism around that. And she refers to the fact that it's an industry that is full of parental anecdotes but not necessarily backed up with science. How do you respond to that criticism?
Rupert Isaacson: Well, all science starts with anecdotal things that come in. I actually have a neuroscientist on staff at the ranch, she comes from the Institut Pierre et Marie Curie in Paris, we have a developmental psychologist on staff. So yes, we have scientists there. So honestly she can be as sceptical as she likes, the proof is in the pudding. If we are not willing to look at things that clearly are getting apocryphal and anecdotal good results from a sufficiently large number of people, then we really truly are not looking for solutions.
Lynne Malcolm: I noticed also in your travels you paid a visit to Simon Baron-Cohen who is a very well-known autism specialist. Did you exchange views, and how do your views differ?
Rupert Isaacson: I don't really think they differ. I think his work is mostly with Asperger's kids, which is sort of at the top of that genius syndrome really. And he's coming up with interesting results. A lot of his speculations and research about what's going on in the brain is good stuff, and like all of the science and all of the anecdotal stuff, what one needs to do is add all that to a sort of general data that's out there for the public.
However, the people that we really ought to be listening to are the autists. And most adult autists will confirm that these sensory issues are there, will confirm that the kids need to move, that the tantruming comes from these neurological firestorms, that they often feel that they are falling through space when they are young. We need to talk to these people.
And I've worked a bit with Dr Temple Grandin, who's both a scientist and an autist, at the Colorado State University, and she confirms a lot of this. I have adult autists on staff at the New Trails Centre who we use as consultants when we are developing a new method or something and who also work with the parents and actually help reassure them, say, you know, when I was three it was like this for me, when I was five it was like this for me.
So what we are doing is we're actively out there looking for solutions. And I will work with anybody who is coming from that positive mindset. What we need is collaboration and not pooh-poohing each other. I just don't see how that helps.
Lynne Malcolm: Rupert Isaacson.
Nicole Rogerson is convinced that early intervention is key to making a difference to the lives of autistic children. And the treatment she chose for her son Jack, which is also used at the Lizard Children's Centre, is ABA.
Nicole Rogerson: I looked at all the scientific and peer reviewed journals, I decided to go with what we knew scientifically was our child's best chance. The problem with that is it's not very sexy, to be honest. It's an awful lot of hard work. Certainly I don't know many parents who aren't doing it for at least three or four years. In Jack's case we managed it for 10 years, of intensive behavioural early intervention. And it's exhausting. And the word 'intensive' also implies that it can be expensive.
So the fact that the Australian government…there is a complete disconnect. They have published best practice guidelines that say kids need a minimum of 20 hours a week of autism specific therapy, and ABA, applied behaviour analysis, is the only actual treatment that has any efficacy showing, but we are not going to fund you for that, we are going to give you funding for one hour. So who are the people that are making up that 19 hours? Only families that are beg, borrowing or stealing to do it. So what we are suggesting and what we know to be true is good, effective, intensive early intervention can make enormous difference in the outcome to an individual with autism, but it's not sexy, it's expensive and it doesn't sell books. And getting on the back of a horse sounds much more pleasant to me.
Lynne Malcolm: So just give us a sense of what the science is that's proven that this is the most effective strategy.
Nicole Rogerson: Well, the science behind applied behaviour analysis is nothing more than teaching and a positive reinforcement schedule. We are assessing a child, we are looking at the skills they have at baseline, and we are teaching them all the things that are in deficit; social skills, it might be play skills, it might be language skills, each child will be different. So we have to put an individualised curriculum together.
We're not trying to eradicate autism, we are never going to do that. There are some features about being autistic that are truly wonderful and an amazing gift to those who have them, so I'm certainly not suggesting that. However, let's be honest, there are some aspects of autism that make life very difficult for an individual that will mean if they are not remediated early that individual will go on to not be able to lead an independent life, and that is a travesty, an absolute travesty. So we are going to step in and we are going to teach that child using lots and lots of positive reinforcement in order to be able to bridge that gap basically.
Lynne Malcolm: And so the studies have proven that this is the best…?
Nicole Rogerson: Internationally, year after year, the Australian government by their own reports confirm that. So there's nothing controversial here. We are essentially just saying that good old therapy that's been around for a long time that is the only thing with any peer reviewed, well qualified science supporting it, it's just expensive. So it would be great if we leave this unbelievably unregulated market, which autism is in Australia, and let those parents flounder around. Let's not the government step in and say, look people, this is what you want, because you know then you are going to have to pay for it. So instead parents get a diagnosis and a box of tissues and then they are off to Dr Google.
Lynne Malcolm: So where do you suggest people listening who are concerned about their children, where should they go and what should they do first?
A Nicole Rogerson: The important thing you've got to do is get to some good quality early intervention, and don't take my word for it, make sure you are reading some good websites and some good books. It's buyer beware. Autism is an incredibly unregulated market, and with the advent of the NDIS, I'm afraid it's kind of like a bit of a cowboy town right now. So parents need to arm themselves with good quality information, not just the parental anecdotes.
Lynne Malcolm: Since Rupert Isaacson first noticed his autistic son Rowan's affinity with horses, he's made a documentary, written two books and formed a Foundation to teach his Horse Boy Method internationally. It makes you wonder what Rowan thinks of all this?
Rupert Isaacson: It's a really good question. Rowan is 12, and one of the great gifts of autism…we tend to talk about the deficits of autism a lot, we often forget to talk about the gifts. Among the gifts, for example the almost photographic memory, the often above average intelligence, among these gifts there is also what we call the quiet ego. With Rowan he has this very quiet ego. So he is very much aware that this stuff is out there but he's like, 'Yeah, that books about me, I went to Mongolia.'
But however, he has now started his own web-based television series, it's amazing, the kid who couldn't talk, called Endangerous. And this is an idea that actually happened in Australia a few years ago, it's taken a while to come to fruition, and it's about animals that are both endangered and dangerous. He scripted it. Grumpus Pumpus the space monkey takes you by fart travel to Romania where we track brown bears which are both endangered and dangerous through the forest behind Dracula's Castle. It's his project. And I suspect he's going to sell this eventually to a TV network, and if he does that's his intellectual property, he will make the money from that himself.
What this does is it starts to open our own minds a little bit into the possibilities of what it means to earn a living, the possibilities of what it means to participate economically. I feel I have won first prize in the lottery of life by being his father. I think this is the key. If you are going to live and work with autism, you can't just be looking at its deficits, you've got to like it, you've got to dig it, you've got to be fascinated by it, you've got to make friends with it, you've got to love it.
I would like to see the integration of autistic people into wider society in a way that their gifts are not just acknowledged but really valued, and maybe 10 years, 20 years up the line if we are having this conversation again we will be coming from a completely different point of view where we now understand all these things we've got questions about now, and now we are figuring out how to do something constructive with them.
Lynne Malcolm: So how is your son Jack now? He's just about to graduate from school?
Nicole Rogerson: Of course he's the best looking child in Australia, I have to say. He's also the most beautiful and polite, gorgeous…you're asking his mother, talk about parental anecdote, I think he's the best kid on the planet, and I guess that's what makes me very passionate about it. He's a head taller than me and he's 18. Autism in little kids is just that, it's a little problem, but if we don't step up, dust ourselves off and say, okay, this is hard work but this is the only way I'm going to get my child out of it, you won't have the great benefit that I see in having a big, tall, lanky man living in your house whose autism doesn't dominate our family. He will not need the NDIS, he will be contributing back so that those who missed out along the way after him can be well supported. And if somebody has a great animal therapy experience with their child, so be it, I'm really glad that you do, but you have to also get back to that individualised one-on-one intervention to make sure that your child reaches their best outcome.
Lynne Malcolm: Nicole Rogerson, CEO of Autism Awareness Australia. Go to the All in the Mind website via the RN home page for links to her recommended autism resources, and to details of Rupert Isaacson's Horse Boy approach.
Production by Diane Dean and Andrei Shabunov. And thanks to Katie Silver. I'm Lynne Malcolm, thanks for your company, catch you next week.