by James Best
Throughout primary school, Sam’s progress was like a game of snakes and ladders: a general upwards trajectory with some slips down along the way. While we tried to remain positive, there was no denying autism was often hard work. With Sam, the normal activities of childhood were all exercises in hyper-vigilance: on holidays, would he have a tantrum on the plane? During a trip to a shopping mall, would he disappear, forcing us to call security? At the beach, would he wander off and drown? When going to children’s birthday parties, would he join in the games or hide in a bedroom? Visiting the park, would he push that little girl off the swing? Some days we’d arrive home pleasantly surprised. Other days…well, there was always alcohol. While our friends managed their children’s or perhaps even their own disappointment at not making the cricket team or missing out on the ballet prize, we reframed our expectations to simply avoiding crises.
His ‘stims’ also proved resistant to intervention. Self-stimulatory behaviour is a repetitive action that’s calming. All of us stim to a certain degree—chewing pencils, doodling, twirling our hair—but for people on the autism spectrum stims are a way of shutting out overwhelming sensory stimuli, as their nervous systems find it hard to filter out sounds, smells and certain lights. Sam especially likes colours and can line up or shuffle coloured pencils or cards for hours. Often he hums along. And unfortunately, unlike hair twirling or nail-biting, Sam’s stims aren’t subtle and just come across as odd.
Sam went to a private special-education school with small classes and a comfortable, supportive environment, where he thrived academically and the teachers grew fond of his quirky ways. Still, no school is perfect. Sam suffered subtle bullying from the more able kids—even among special-needs kids there is a pecking order—and he became increasingly anxious. After a McDonald’s birthday party with his classmates, Benison arrived home distraught: a group of children at the party had deliberately frozen him out. As he wolfed down his burger, one little girl, herself on the autism spectrum, had called him disgusting and was forced by her mother to apologise. Sam, insulated by his lack of social awareness, missed the worst of it but his mother did not.
When he was about ten, his anxiety manifested itself as a strange tic: eye blinking combined with a stuttered ‘tic, tic, tic’. We were gutted, fearing Tourette’s syndrome. Tourette’s can occur with autism but is more often linked to Attention Deficit Hyperactivity Disorder (ADHD), which is another common co-diagnosis with autism and which Sam also has. These connections make intuitive sense, all being neurological conditions, but our boy, with his obsessions and stims, provoked enough backward glances without adding tics to the mix.
Off we went to Dr Greg again, only for him to determine within a few minutes that Sam’s apparently involuntary ‘tic’ was entirely within his control, in other words another stim. I felt equal parts relieved and embarrassed, but that’s why doctors should never treat family members: it’s impossible to be objective. A few sessions with a speech therapist and the problem was fixed. The anxiety, however, persisted. We started Sam on medication and took him to see a child psychologist to manage the worst of these stresses.
As high school approached, where he should go posed a new dilemma. We visited a special-needs high school only to be told by the principal that Sam was too bright to attend. A ’satellite’ autism class in a public high school was an option but places were limited. The fact was there was no ideal place for Sam. With our options narrowing we wondered whether we should try mainstream schooling. Benison wasn’t sure but I, being a glass-half-full sort of person, wanted to give it a go, so we enrolled him at De La Salle College, a mainstream Catholic boy’s school in the inner Sydney suburb of Ashfield, which boasted a veritable mixing pot of cultures. With his colour-coded books and laminated timetable, scratchy grey woollen trousers and a backpack emblazoned with the school crest, he went off to high school in 2014.
In the first months, Benison felt physically ill with anxiety. How would Sam cope with the frequent bells and period changes, and a different teacher for every subject? He was less street-smart than the average six year old and was now at the mercy of over six hundred teenage boys. Every day she deposited him at the school gates, she said, was like letting go of him on a trapeze. Would he be rescued by other caring hands or fall crashing to the ground?
Most days, there were hands out to catch him. The wonderful learning support team helped Sam to navigate this confusing new environment. Guiding, redirecting, intervening when Sam needed help. Sam was eased into the school day gradually over the course of the first term: initially attending for two periods, then home for lunch, then staying for three periods, and then finally sticking out the whole day. It was exhausting for him and it was exhausting for us.
Unfortunately, the thing about autism is its unpredictability. A brilliant day, where Sam was switched on and engaged and compliant, could be followed the next by a spaced-out Sam, who shut out the world with stims, refusing to even open a schoolbook. He’d lie down on the ground in class and not get up, or simply abscond. On more than one occasion he was found wandering aimlessly in the playground when he should have been in class. In an early science lesson, he became terrified by a lit Bunsen burner and ran screaming from the lab. The ‘old-school’ teacher was not impressed. How could we explain to him that we’d taught our son—whose fearlessness as a young child had almost been fatal—the danger of fire a little too diligently?
The worst days were those when the school’s phone number appeared on my mobile screen, the heart-sink call. Schools, we’ve found, rarely call with good news. Sam had ‘lost it’, had a meltdown, was uncontrollable. Could we please come and pick him up? Late one term, he swatted at a learning-support counsellor because she disagreed with him over whether a bear would beat a shark in a fight. These were the weighty topics that occupied Sam’s mind. She wasn’t hurt and took it in good humour but the school had no choice but to suspend him for a few days.
We naturally worried about bullying, but to our unending joy the boys responded to Sam’s oddness and the inevitable class disruptions magnificently. They were patient, understanding and supportive. The teachers explained that the boys in his year had cocooned him. ‘No one touches Sam,’ they said. We cried when we were told.
There were teachers, too, who went the extra mile. A young maths teacher saw Sam’s potential and took him aside for extra tuition. Sam thrived in maths that year.
Still, attempts by the school to get Sam to socialise were hitting a brick wall. At recess and lunchtime, he sat alone with his computer, ignoring the banter and games of handball, alone in his online world. Language, especially social language, had always been a problem for Sam, and as he grew the gap between him and his peers became more evident. He found conversation difficult. Sam could talk at length about the history of Disney films, but if you asked him about his weekend you’d likely be met with uncomprehending silence. While for most of us the best conversations are those that take us to new places, novelty was only confusing for Sam. He preferred predictability, conversations where you knew the answers because you’d had the same discussion over and over again. Would a bear beat a shark in a fight? Who was worse: Lord Voldemort or Hitler?
In class, he needed to be prompted to get his books out, to write notes, to listen. He couldn’t buy his lunch at the tuckshop, make a phone call or catch a bus. Anxiety and avoidance were his default settings. Despite all our efforts, we wondered if we were mollycoddling him. Did we need to take away the guardrails, to push him further towards independence?
Sam was now approaching puberty. He was a combustible cocktail of hormones and childlike innocence. There were pimples, there was talk about girls, there was a deepening voice, and then there was more talk about girls. And while Sam matured, the scientific world was becoming increasingly aware of the importance of the teenage years to neurological development.
Adolescence is a time of huge physical changes, not least in the brain. Only in the very first years of life is the res
haping of our neural wiring more profound. It’s for this reason adolescence has been described as a second infancy or a second spring. One such transformation in the brain is the formation of the covering, myelin, around the long thin extensions of neurones called axons. When a nerve grows this insulating cover, the electrical transmission down the axons increases in speed by up to one hundred times, making the neurones much more efficient. Myelination, which starts at the bottom and back of the brain and works its way up and forward, starts to reach the frontal cortex—where much of our social skills, our planning and our strategic thinking is based—during adolescence.
Neuronal growth also increases in early puberty, particularly in the number of connections between neurones, followed by a period of ‘pruning’, where less-used nerves, connections and pathways are cleared away. In The Primal Teen, New York Times science and health editor Barbara Strauch described the teenage brain as ‘still very much a work in progress, a giant construction project. Millions of connections are being hooked up; millions more are swept away. Neurochemicals wash over the teenage brain, giving it a new paint job, a new look, a new chance at life.’
In mitigating the effects of autism, attention has traditionally been focused on intervening in the earliest childhood years, when the brain is inherently more plastic and able to be remodelled. This, it seemed, was the best opportunity to improve outcomes and scientific evidence largely backs this theory up. But then why not during adolescence as well?
Combining what we knew about autism, and what we knew about adolescence and neurobiology, it just made sense to Benison and me to seize this opportunity. We decided on a prolonged and intense exposure to uncertainty, to unpredictability, to a dynamic environment, in the form of an epic journey during the peak of adolescence, with the objective of expanding Sam’s horizons and reducing his disability for the rest of his life.
That was the theory. We had no scientific evidence that it would work. Nobody has performed an intervention of this sort; well, not that we were aware of. Our plan was a punt, a stab in the dark, albeit one underpinned by scientific understanding.
Over time, we formulated what our intervention would actually look like. One of us would need to stop work and apply ourselves full throttle to this, just like in the early days. We both knew I was the logical choice.
We realised that I had already intuitively been taking on the role of Captain Uncertainty throughout his primary school years: taking Sam camping, or anywhere away from screens, away from the security they provided. Spontaneously, we would up and go on day trips here, there and everywhere. He was always on my hip. If I went somewhere that wasn’t work, he came too. Exposure, exposure, exposure.
If Benison was the engineer, I was the mechanic, the grease monkey applying the theory in practice. I’d always played the role of the helper, even as a child with my brother Matthew, just eleven months younger than me. I had been his protector and his death had only magnified this impulse, known in psychology circles as a helping drive. Carl Jung wrote of a wounded healer that only a wounded physician could heal effectively. Perhaps that was me? It had been hard-wired, shaping my career as a family doctor. Now I was presented with a chance to direct my helping drive to my own son.
We wondered how long the intervention should be. I thought twelve months, similar to a gap year, but Benison knew we wouldn’t last that long, we’d burn out; she’s always been the sensible one. Anyway, we wouldn’t be able to afford it. Sam’s autism and early intervention had left us much less well off than we should have been at this stage of life. However we had been planning to sell the family home and downsize one day, given our older sons were seventeen and twenty years old. We decided to fast-track the plans and use some of the money from the downsizing to help fund the trip.
My work was an obstacle. I was a partner in a medical practice, and a prolonged absence would inevitably have an impact. After involved negotiation with my partners we eventually reached an agreement.
Where would we go? Sam and I had to get away so he couldn’t constantly access the internet and it would have to be somewhere where he would have to deal with novelty, unfamiliarity. Camping around Australia? The usual backpacker jaunt around Europe? No, if we were going to do this, we needed to do it properly. The developing world, we decided, would be better, but nothing too unsafe. In South America, language was a barrier, as it was in East Asia. India was a possibility, but…how about southern and eastern Africa? The classic overland route from Cape Town to Nairobi usually took around six to nine months. That Sam had a minor obsession with African animals, complaining bitterly that Australian native animals were boring in comparison, was the clincher. So, the decision was made: Africa, for a minimum of six months, and then we’d see how we go. The objective was twofold: to expose Sam to uncertainty and a dynamic environment, inherent in backpacking in the developing world, and to also use the time to work actively on his neuroplasticity by undertaking activities that required him to use multiple parts of the brain at once.
As disciples of science, Benison and I of course wanted to measure it. Soon we were speaking to leading autism researcher David Trembath at Griffith University in Brisbane. David’s special interest is in novel approaches to autism, and particularly N=1 studies, where there is only one individual being studied. While studies of this type give limited information, their flexibility allows greater potential for new concepts to be explored. Sam was to become a pilot study, if you like.
David designed a study which required me to record videos of Sam on the road, which David’s team would randomise and then study to see if a significant improvement could be measured over the trip.
We sold the house and set the ball in motion.
As word got out, it seemed everyone became interested. Reactions ranged from jealousy to ‘What about lions/Ebola/crime/disease?’ People started telling us it should be a blog, a book, a documentary. In time, it became all three. A patient of mine set up a blog for us. A book contract was signed with a publisher. Another patient told a documentary film company she’d previously worked with about our plans and the next thing we knew Benison, Sam and I were being filmed at length. On camera, the interviewers asked us some confronting questions.
‘How do you know it will work?’
‘How will you feel if it doesn’t work?’
‘How will this affect your relationship?’
Some of these questions we hadn’t even asked ourselves. There was only one way we were going to find out.
CHAPTER 1
Passengers only beyond this point
Seven months, nine countries. Roughly a month in each, backpacking through South Africa, Namibia, Botswana, Malawi, Mozambique, Tanzania and Kenya, with quick transits to Lesotho and Zambia, and possibly Uganda. That was about as detailed as the plan got. Our trip was meant to be unpredictable, uncertain. I had booked one-way flights and accommodation for the first three nights in Cape Town, but after that it was up in the air.
Soon I started to doubt myself. I was planning to take my disabled teenager backpacking around Africa when I could barely look after myself travelling!
As departure day loomed I was also becoming increasingly stressed about the potential dangers involved in what we were doing. Could it end up being useless, or harmful, or even disastrous? I suspected Benison was worried too. Was I being too optimistic and glossing over real risks? Would I be putting Sam in harm’s way? Was I doing this more for the kudos, more for myself, at the expense of my son? Was I simply kidding myself?
As part of planning for emergencies, Sam and I began practising making phone calls and role-playing how to find and approach appropriate people for help. I drafted an emergency letter for Sam to carry everywhere, which contained contact details in Australia as well as the Australian embassies and consulates in the countries we planned to visit.
We got Sam to practise finding the letter and presenting it to an imaginary passer-by. It read:
EMERGENCY LETTER—PLEASE HELP!
To whoever is receiving this letter,
The boy who is in possession of this letter is a fourteen-year-old Australian tourist by the name of Samuel Best. He has an autism spectrum disorder, which means he has difficulties with social skills and communication. He is meant to be travelling with his father, Dr James Best.
He has been instructed that if he is separated from his father for whatever reason, or his father should become incapacitated in any way, he should give this letter to a person who seems responsible or is in a position of power (eg. policeman, manager of hotel). Please, please assist him in any way you see fit—he will not be able to manage on his own. Any finances incurred by helping him will be reimbursed, and a healthy reward will be given for any assistance.
Watching Sam struggle to read the letter and effectively get the message across, I fretted further. I thought of a confused African on the receiving end of Sam’s disjointed and at times mumbled delivery, struggling with his accent, perhaps not having the literacy or English skills to read the letter themself. While the letter was a good idea, it was anything but foolproof.
