The documented journey of a Sydney father who defied convention and took his autistic teenage son backpacking across Africa. The results could revolutionise the study of autism.
This documentary was aired on the ABC on Mon 24 July 2017. The initial promotional advertising video that was shown prior to the segment airing, immediately caught my attention.
“Sydney GP Dr James Best was prepared to throw out the rulebook on autism as his son Sam entered adolescence.
Rather than keeping him to routines and “wrapping him in cotton wool”, he wanted to expose the 14-year-old to uncertainty and unpredictability.
So Dr Best decided to take a year off work, sell the family house and take his son on a backpacking trip across Africa.
It was based on the idea that adolescence represents a particular opportunity for learning, similar to the period during infancy when the brain is highly receptive to change.
Although the plan left the parents of some autistic children aghast, it has been hailed as “ground breaking” by researcher Dr David Trembath of Griffith University.”
Anything that goes against convention sparks my interest as many of the major advances in medicine and in autism treatment often went against conventional thinking.
So, the story begins with Dr James Best arriving in Africa with his 14-year-old son. Why in hell would you take your 14-year old son to Africa? Well the theory was to help him develop his adaptive skills.
This an edited version of the story transcript.
“What we postulated was the best for our child was different to other people. We do know that the way the brain changes in teenage years is quite profound, that adolescence is often referred to as the second infancy, a whole lot of new growth. We were acutely aware that it was a time of opportunity. The conventional approach just wasn’t going to be good enough for us because we thought here is an opportunity that we wanted to grab. It just made scientific sense to us. Our considered solution to that was to expose him to a prolonged period of uncertainty and unpredictability, to develop his ability to deal with the challenges in life. And then we started thinking more. How are we going to roll this out? What are we actually doing to do? And we started formulating around the idea of a trip. We had to get him out of his environment. So, in the end we decided on Africa. It provided bucket loads of uncertainty and unpredictability and Sam had a little bit of an obsession at the time about African animals so that was the clincher.”
Having a scientific background Dr James Best got Dr David Trembath of Griffith University to track Sam’s progress throughout the trip. As far as they were aware, nothing like this has been attempted previously.
Dr David Trembath, Griffith University: “Usually what we do is we take a research environment and we try and replicate the real world. What we’re doing here is we’re taking the real world and we’re attempting to wrap research around it.”
Nicole Rogerson of Autism Awareness Australia, probably summed it up best with her reaction to what Dr James Best was about to do with his son.
“Are you nuts” was what I said, yeah. I was really mean about it. Because this was the opposite of James, Mr Sensible and Mr Doctor, Mr Always Follow the Science, and all of a sudden he’s telling me this hair-brained scheme to take his son through Africa. I tried to be supportive but mostly I just laughed.”
That would probably be the expected reaction from any conventional health professional working with ASD individuals. However, Dr James Best was not deterred, despite the fact that they had to sell the family home to be able to finance the trip.
“We want Sam to be independent, that’s our end game. He can play the piano and he can read music and he can re-program computers and he picks up maths like that, but he can’t go to the shop and buy something for himself. He can’t have a normal long conversation with a friend”
“Our trip is all about exposing Sam to new situations, to things that he doesn’t feel quite comfortable with, things he hasn’t quite encountered before, and to do so lots and lots and lots of times. This is hard, what we’re doing, this is very very hard and the person who does it hardest is Sam.”
“We’re not expecting everyone to sort of trip off to some far-flung country with their child for six months or anything like that. But if it is about introduction to change and about taking them away from technology. Yes, I think it could lead to new thinking about autism.”
“A lot of the time we were trying to focus on Sam’s ability to have conversations. We encouraged him to have conversations with me, conversations with strangers, ordering a meal. His ability to have what’s referred to as a prolonged reciprocal conversation. He really couldn’t do that.”
Dr David Trembath, Griffith University: “So, we’ve given James a program of activities to do in Africa. He’s been sending back videos regularly so we can monitor Sam’s progress. We’re really interested in his conversation skills. I didn’t expect us to see the conversations going as well as they are, to be honest. We’re seeing subtle but I think gradual changes in Sam’s social and communications skills. We’re seeing him maintain conversations for longer. We’re seeing him find it easier to get some flow in the conversation to stick on a topic, to make eye contact. It seems easier on the communication partners as well.”
By the last month, Dr James Best recorded: “I’m confident enough to say that there is a change. He plays chess. He boxes. He ties his shoelaces. He brushes his teeth by himself. He plans getting ready and getting out of the room by himself. There is no way in the world I could have done all of these things with him if I’d have stayed at home, no way in the world.
He just chats now, it’s much easier, it used to be hard work before. And he just didn’t have that idea that if someone says something, you say something back. And now it just happens.”
“I really think it is much more likely that Sam will be able to do things like have a relationship and have a job now than it was at the beginning of the trip. And so I’m pretty damned pleased to be able to say that.”
Dr David Trembath, Griffith University: “I think this study, this journey could shake up the field of autism. What we see is a far more relaxed, comfortable kid. We see the conversations flowing much more smoothly. We’ve got some data to show that Sam is going from say 20 per cent on particular skills to 50 per cent. I think this has the potential to change the way that we look at supporting teenagers in the field of autism, because of this idea of taking risks, pushing boundaries and having very high expectations. In my view it think it is ground breaking, because it’s a really amazing example of where a family has taken a huge chance and it seems to have paid off for them.”
Prof. Cheryl Dissanayake, La Trobe University: “Six months is not an incredibly long time. So, I don’t think you would talk about this African trip being a breakthrough in autism research. But I think it could provide a template for other families to map what is going to be possible for their child. They can take them out of the routine environment, out of the ordinary day to day. But if done in a scaffolded way that young person can rise to meet that challenge.”
Dr James Best: “I don’t want people to think that I have found some sort of solution for autism. We haven’t. But I do think that we have certainly raised some interesting questions that I hope will lead to further research in this area, that adolescence in people on the autism spectrum is a time of opportunity.”
I do hear some parents say that this will not work for their child. Every parent needs to make that decision as to what they feel is best for their child. Dr James Best took a gamble, it payed off and we can all learn from his experience.
I must agree that introducing uncertainty and unpredictability and taking ASD children out of their normal environment is what I focussed a lot on with my own son. I knew that the world would be unforgiving and he would need to have strategies in place to deal with that. I would at every opportunity push him to be independent. I’d get him to go to store counters to buy things for himself. If he didn’t get served after 10 minutes I’d step in to explain that he needed to get eye contact with the staff, so that they know he wanted to buy something. The next step was for him to stay there long enough, after he got what he wanted, to be given his change!
Forcing him to travel independently from home to his school in Hawthorn. My wife did a trial run with him on the tram and came home saying that he was too young to be able to do it. Next day I put him on the tram, drove down to where he should get off, figuring that the worst that would happen is that he would not get off the tram. I could always drive to the next stop and get him off. Yes there were anxious moments but within a few days he git it right. So next I pushed him to take the bus from the tram stop to home. “Oh no dad” I remember him saying “that’s too much for me”. I must have been a real mean dad, as “no” was not an option. Within a week he was totally independent travelling to school.
I insisted him getting part-time work. That was a real battle ground. However, I didn’t step in, we talked it over and he would return each day to try and make sense of the staff, managers and company policy. When they are adolescents, if they muck up at work, managers are forgiving as “they are just kids”. Do the same when you are an adult – and you are shown the door! It was an excellent training ground for his future employment.
I encouraged him to join the local aquatic centre. There he discovered the sauna. Here he found a captive audience to practice his social and conversation skills. The longest time he spent in the sauna in one session talking was three hours! I don’t know how he did it.
I was also intrigued to read a study published in 2015 that found “individuals with autism spectrum disorder (ASD) sometimes acquire a new behavior or skill only in a specific context, but they have difficulty transferring that learned skill or information to a new context.” Basically, children learn specific skills in a familiar environment, but are unable to transfer those learned skills to unfamiliar environments. This study dovetails well with what Dr James Best postulated, that children need to be exposed to unpredictable environments to be able to learn how to expand their adaptive skills.
Ultimately as a parent we want our children to be independent. As Dr James Best said “it is much more likely that Sam will be able to do things like have a relationship and have a job now than it was at the beginning of the trip.”
It is a competitive market out there for jobs, especially for ASD individuals, as not many organisations are autism friendly. Acceptance will take time, and time is not something that ASD children have on their side. Anything you can do to prepare them to give them an edge to get a job, have a relationship and independence, has got to be beneficial.
Link to the video of the story. Only available for a short time.
Link to the transcript of the story.
Here is the link to their blog.