‘I think it’s autism.’ My wife and I heard those words a long time ago now, 13 years to be precise, but the gut-wrenching feeling never completely leaves you.
Sam was just three when he was diagnosed and the future for a time looked grim. He spoke only a few words and he could not sit still long enough to learn.
My wife, Benison O’Reilly, a contributor to Mamamia, quit her job and dedicated herself to running a home-based intensive early intervention program for Sam.
At six, he began kindergarten at a private special education primary school and we continued speech therapy and occupational therapy, eventually adding a psychologist for social skills. It was exhausting and horrendously expensive but through all this Sam continued to improve. How could we possibly stop?
Then came high school and adolescence, typically the hardest time for kids on the spectrum. We were told Sam was too bright for special education but would struggle in the mainstream.
As always, we went for the tougher option and thanks to his amazing school — an ordinary Catholic boys’ high school — and its teachers, he has done remarkably well.
Yet still …
As I doctor, I discovered that, like early childhood, adolescence is a time of major neuroplasticity when the brain is most receptive to change. That’s when I hatched a plan (some may say hare-brained) to take Sam out of school for several months and go travelling in Africa, to expose him to new challenges and experiences.
Benison agreed and we sold our house to fund the trip. The early years had been primarily her responsibility, now was my turn.
Six months, 10 countries, some terrible days when Sam struggled and I felt like the worst dad in the world, but gradually a blossoming of skills and language and independence. Sam got better the longer the trip went on. I, on the other hand, got worse! It was exhausting.
Over the six months we lost or broke almost all our possessions, got ill, were extorted by border guards and ended up stranded without visas on the Malawi/Mozambique border. We also experienced the breathtaking landscapes, the wildlife and the incredible people of this amazing continent.
My wife and I enlisted Dr David Trembath from Griffith University to follow Sam’s journey, me providing him with video evidence to be independently assessed. This will be the subject of an academic paper as well as a book and hopefully will add to the body of research around autism.
We are told that people with autism like routine and sameness, but I like beer and Twisties and I know it’s not always a good idea to give in to my desires.
Sam still has autism and still needs support at school to learn. But he also is funny and quirky and feisty and the language gains he made in Africa have been retained. As he said of his trip ‘I’ve changed from a boy to a person.’
All kids need to be challenged and kids with autism are no different. Leading autism advocate Temple Grandin agrees, calling it the ‘the loving push’. We hope she would approve.
The tale of James and Sam Best's journey across Africa will be told on Australian Story on ABC at 8pm tonight.
A book about the father-son journey, titled Sam's Best Shot, will be released by published Allen & Unwin on Wednesday. RRP $32.99.
LISTEN: Paralympian Jessica Smith shares how she talks to kids about disability.