by James Best
Familiar folk we encountered remarked on the difference in Sam. Lee, the manager of The Backpacker in Cape Town, sat down with Sam for an interview in front of the video camera. Sam fired off question after question for minutes, until I had to stop him and tell him to wind it up.
I thought back to the interviews we’d struggled over in the early months of 2015. The thirty-second pauses, Sam scrambling to think of ten questions to ask, his inability to follow a lead in the conversation.
Lee was stunned. ‘He couldn’t talk anything like that before. He couldn’t even keep still.’
A week later, at breakfast on our first morning at Chameleon Backpackers in Windhoek, we ran into one of their drivers, Fernando, the same one who’d picked Sam and me up from the airport on our first visit to Windhoek in 2015.
‘He is much better now,’ Fernando said without prompting. ‘He is much calmer than the last time.’
Benison and I shared a look of satisfaction. ‘Yes,’ I replied, ‘he seems to be enjoying this trip much more.’
We were worried, you see, that much of the hard work of that earlier trip had been undone by the realities of life back in Sydney. The year 2016 was a difficult one for our family, and as Benison and I dived back into our workaday lives we just didn’t have the time and energy to focus so totally on Sam.
Fortunately for us, we stumbled across an amazing teacher’s aide, Virginia, who we employed privately two days a week to support Sam at school. Virginia had worked as a behavioural therapist with children with autism previously but, more importantly, just got Sam and his needs.
Throughout the past year, Virginia has built on the hard work Sam and I put in during our first African trip, extending him further and encouraging independence. She has engineered conversations between Sam and all his teachers, coordinated movie dates with his peers and supervised his work experience placement at Target. In short, she’s been a life saver.
On the final afternoon of last week’s holiday, we visited an animal sanctuary an hour’s drive from Windhoek. Sam, who’d been whinging all morning about going, ended up loving it. ‘Things go fast when you enjoy yourself,’ he said.
‘Yes,’ Benison explained. ‘There’s an expression for that: Time flies when you’re having fun.’
As we were preparing to leave the next morning for the airport, I filmed Sam having one last conversation with Rosa, a staff member at Chameleon. Sam had spoken to Rosa on our first visit, once again in front of the camera. She was astonished at the difference as he casually chatted with her about her family and work. She asked whether we had been doing a lot of therapy of some sort. Well, yes, we had, of course.
On arriving back home in Sydney, I checked my emails, and was stoked to receive one that Benison and I had been sweating on for a while. It was from David Trembath, the Griffith University researcher, outlining the preliminary results from his research on the video interviews recorded with Sam during 2015.
A comparison of the videos taken early and late in the trip demonstrated that speech skills critical to good conversations—such as staying on topic, body position and eye contact—all increased in Sam over the course of the six months, while abrupt changes in topic reduced. One key parameter, ‘cues from Dad’, dropped from twenty per cent of conversations early in the trip to zero later in the trip. The research’s conclusion was that ‘the journey was associated with positive changes in social-communication skills.’
That is, it worked.
For all that, Sam remains Sam. He still talks way too loud, and way too much about his obsessions (currently Tintin and 1980s children’s videos, but no doubt that will change). He still doesn’t get that it’s not a great idea to comment on all the ‘black people’ in South Africa! While he’s holding his own in maths, school work presents an increasing challenge. And while we’ve been teaching him about sarcasm and idioms, he can still be delightfully literal.
One night in Stellenbosch, the picture-postcard perfect university town in the wine region near Cape Town, Sam scanned our dinner menu, then looked up at us with a slightly pained expression on his face. ‘There is nothing here I want to eat.’
‘Yes, there is,’ I said. ‘What about the Monster Burger?’
Then it dawned on Benison and me. ‘Sam, it’s not a burger made from monsters. “Monster” just means it’s big.’
‘Oh,’ said Sam, with visible relief. When his monster-sized beef burger arrived he happily chowed it down.
Africa was good for Sam, good for me. Part of me wants us to remain there forever, but we have two other sons in Australia who need us, aging parents and work commitments. The challenge will be to sustain the good work, to somehow recreate our own Africa at home, to challenge Sam to embrace independence and to get the most possible out of life.
He remains a work in progress.
Sam on the beach at Camps Bay, Cape Town, on our first full day in Africa. He calmed himself by running his fingers through the sand.
Our first encounter with African animals on a visit to a game reserve north of Cape Town. (Photographer: Max Bourke)
At Robben Island prison, where Nelson Mandela was incarcerated for eighteen years.
Sam shares a joke with Madam Tofu, near Chintsa, on the Garden Route, South Africa.
Sam outside the immigration office at the Lesotho border. Wrapped in his rug he looked like a local.
Sam’s postcard to his aunty and uncle from Windhoek, Namibia. Writing postcards proved to be a good way to develop Sam’s handwriting and narrative skills.
Sam strolls down the ‘endless’ beach where the dunes of the Namib Desert meet the South Atlantic Ocean.
Climbing a dune ridgeline near Deadvlei, in the Namib Desert.
Exploring the waterways of the Okavango Delta, Botswana.
Sam shares a joke with Alex, our guide to Livingstone Island on the Zambezi River, overlooking Victoria Falls.
A primary school in a village near the Zambezi River, Zambia. The kids are being taught outside in the sun, under a Zambian flag on a pole.
Sam teaches some Zambian teachers computer skills.
Public transport near Livingstonia in northern Malawi. Sam is at my feet, and the compulsory chicken is on the right.
Sam wanders along a street market near Lake Malawi, intriguing the locals.
Waiting on a beach on Likomo Island, Lake Malawi, for our launch to the Ilala.
Juliette, Sam and I wait in the tray of a utility in a remote town in Malawi, hoping to hitch a ride to the Mozambique border.
A curious crowd gather around Sam as he plays on his DS while we wait for a minibus back to Lilongwe from the Mozambique border.
Sam chats on film in Lilongwe, Malawi. The footage of such conversations was used by researchers at Griffith University to study Sam’s speech and communication skills.
Sam and I try to talk above the roar of the rapids, Murchison Falls, Uganda.
Sam encounters a posse of warthogs at Murchison Falls National Park. ‘It’s Pumbaa!’
Sam up close and personal with some rhinos in Uganda. Experiences like this fired his imagination and broadened his horizons.
Sam and I riding whitewater rapids in the upper reaches of the Nile, Uganda.
Sam towers over some children in a Ugandan village. The boy with the slingshot was the same age as Sam.
Sam meets a baby in Uganda.
Sam attends a lesson in a Tanzanian special needs school.
Sam inside Ngorongoro Crater, Tanzania.
A nervous Sam smiles for the camera in Ngorongoro Crater, as a lion lies outside his minibus window.
The ‘ferry’ to Mafia Island, off the coast of Tanzania.
Sam reads Animal Farm while sitting in Stone Town, Zanzibar.
Sam studies a 192-year-old Aldabra giant sea tortoise, born before the American Civil War.
Naomi from Heiress Films shoots footage of Sam aboard a dhow off Stone Town, Zanzibar. Morton, our travelling companion, chills out behind him.
&
nbsp; A sunset dhow cruise off Zanzibar Island.
Acknowledgements
This book only exists because of the astute judgement of my literary agent, Jane Burridge, who saw its potential when she first heard of our planned adventure. My publisher, Jane Palfreyman of Allen & Unwin, has been unwavering in her support, and her editorial colleagues Christa Munns and Aziza Kuypers have done a magnificent job in realising its potential.
It should be acknowledged that this adventure was more than a book. Sam’s progress was recorded and analysed by leading autism researcher Dr David Trembath, from Griffith University, and we are very grateful for his experience, knowledge and patience in guiding this research project to completion.
A special and heartfelt acknowledgement goes out to Jennifer Cummins and her team at Heiress Films, whose dedication to documenting this journey on film has been outstanding. The two producers who travelled to Africa with Sam and I, Max Bourke and Naomi Elkin-Jones, will always hold a special place in our hearts.
Also, a thank you is needed for hundreds of people who allowed themselves to be filmed with Sam. We were not refused on a single occasion.
On the road we met countless friendly fellow travellers, but I want to especially acknowledge Anka, Ed and Lana, Andy, Harri, my darling niece Juliette, Mike and Lenneke, Morton and Professor Matthew Rickard. We also stayed at many wonderful establishments, and our gratitude goes out to the staff of The Backpacker (Cape Town), Chameleon (Windhoek), Jollyboys (Livingstone), Jungle Junction (Zambezi River), Mabuya Camp (Lilongwe), Mushroom Farm (Livingstonia), Red Chilli (Kampala) and Noah’s Arc (Kapchowra), as well as the many other places we stayed.
Throughout Africa, Sam and I were blown away by the relaxed and welcoming manner of the local people. A special mention goes out to Etienne, Petra and Michael, Godfrey and Manga, Onesmo, Mama Grace and Erick, Kerri, Sr Leonida and Jerimiah. Our travel guides made time to connect with Sam and I acknowledge the wonderful efforts of all of them, but in particular Gabriel, Milner, Tuhafeni, Juma, Joseph and Ian.
Thanks to the teaching and support staff at Sam’s school, De La Salle College, Ashfield. They have been so supportive of Sam, before, during and after the trip.
Special thank you to my extended family for supporting Benison and my other sons while Sam and I were away. Particular gratitude goes to Roslyn and John Driscoll, without whom this trip would not have taken place, and Linda and Brendon Gregor, who backed us every step of the way. A big thanks also to Matthew and Nicholas, my older two boys, who also had to make many sacrifices for this ‘mad’ undertaking to occur, but never (or perhaps only rarely) complained, knowing of the importance of helping out Sam.
Finally, and most importantly, I would like to thank my wife, Benison O’Reilly. She is quite amazing, really. Her dedication and mother-love to Sam led to this quite extraordinary gift, and her superhuman resilience, intellect and compassion is what got us all through the process. She also gave me unending advice on the writing of this book; she is almost a co-author. Sam and I owe her so much, and we acknowledge her for the amazing person she is.
Resources
Temple Grandin, Thinking in Pictures: And other reports from my life with autism, Doubleday, New York, 1995.
Temple Grandin and Richard Panek, The Autistic Brain: Thinking across the spectrum, Houghton Mifflin Harcourt, Boston, 2013.
Roy Richard Grinker, Unstrange Minds: Remapping the world of autism, Basic Books, New York, 2007.
Lynn Kern Koegel and Clare LaZebnik, Growing Up on the Spectrum: A guide to life, love and learning for teens and young adults with autism and Asperger’s, Penguin Books, New York, 2009.
Anthony Macris, When Horse Became Saw: A family’s journey through autism, Penguin Books, Camberwell, Vic., 2012.
Kamran Nazeer, Send in the Idiots: Stories from the other side of autism, Bloomsbury Publishing, London, 2009.
Benison O’Reilly and Kathryn Wicks, The Complete Autism Handbook (3rd edition), Ventura Press, Sydney, 2016.
John Elder Robison, Look Me in the Eye: My life with Asperger’s, Crown Publishers, New York, 2007.
Steve Silberman, Neurotribes: The legacy of autism and how to think smarter about people who think differently, Allen & Unwin, London, 2016.
Andrew Solomon, Far From the Tree: Parents, children and the search for identity, Scribner, New York, 2012.
Barbara Strauch, The Primal Teen: What the new discoveries about the teenage brain tell us about our kids, Doubleday, New York, 2003.
Daniel Tammet, Born on A Blue Day: Inside the extraordinary mind of an autistic savant, Free Press, New York, 2007.
Michael Whelan, The Other Country: A father’s journey with autism, Macmillan Australia, Melbourne, 2013.
