by James Best
James Best lives in Sydney with his wife, Benison, and three sons. His youngest son, Sam, was diagnosed with autism spectrum disorder, aged three, in 2004. James has been a general practitioner for over twenty years, and his medical practice has a special focus on children with disabilities. In the years since Sam’s diagnosis, he has become an advocate for people with autism, presenting regularly at seminars and conferences. His articles on autism and parenting have been published in the medical and mainstream press and he has contributed to guidelines for doctors on the management of autism.
First published in 2017
Copyright © James Best 2017
All rights reserved. No part of this book may be reproduced or transmitted in any form or by any means, electronic or mechanical, including photocopying, recording or by any information storage and retrieval system, without prior permission in writing from the publisher. The Australian Copyright Act 1968 (the Act) allows a maximum of one chapter or 10 per cent of this book, whichever is the greater, to be photocopied by any educational institution for its educational purposes provided that the educational institution (or body that administers it) has given a remuneration notice to the Copyright Agency (Australia) under the Act.
Allen & Unwin
83 Alexander Street
Crows Nest NSW 2065
Australia
Phone: (61 2) 8425 0100
Email: [email protected]
Web: www.allenandunwin.com
Cataloguing-in-Publication details are available from the National Library of Australia
www.trove.nla.gov.au
ISBN 9781760113148
eISBN 9781760639013
Map by MAPgraphics
Set by Bookhouse, Sydney
Cover design: Romina Panetta
Front cover photograph: James and Sam astride a rocky outcrop on the Nile River, Murchison Falls, Uganda.
Dedicated to my son, Samuel Thomas Best
A young man braver than Harry Potter
Contents
Prologue
1 Passengers only beyond this point
2 Hell for leather
3 Training wheels off
4 The Baz Bus
5 Tension in the Transkei
6 The Mountain Kingdom
7 Thinking outside the square
8 I don’t want to be normal
9 Lion country
10 Sand safari
11 Namboobia
12 Easy eights
13 Marshmallows and googols
14 Zim
15 The dementor at the falls
16 Jungle Junction
17 Two wazungu
18 Mr Friendly
19 Mushroom-Farm style
20 The lake of stars
21 Ten out of ten
22 The Shire
23 Zomba
24 Bordering on the ridiculous
25 Expect the unexpected
26 Swings and roundabouts
27 Fever!
28 The greatest waterfall of the Nile
29 Let’s get lost
30 Playing Quidditch
31 Prayers and chickens
32 The Africa of dreams
33 When September ends
34 Rolling with the punches
35 Life lessons
36 Sam in charge
37 Zanzibar
38 A boy to a person
39 Life skills
Epilogue
Acknowledgements
Resources
‘If a man can keep alert and imaginative, an error is a possibility, a chance at something new; to him, wandering and wondering are part of the same process, and he is most mistaken, most in error, whenever he quits exploring.’
WILLIAM LEAST-HEAT MOON, BLUE HIGHWAYS
‘In my experience, the best thing parents and educators can do for a child with autism is to get the child out into the world—with the appropriate supports. Of course that’s true of all children, not just those with autism: the children who progress the most, who develop to their fullest potential, are those who are exposed to a variety of experiences.’
BARRY M. PRIZANT, PHD, UNIQUELY HUMAN: A DIFFERENT WAY OF SEEING AUTISM
‘…in a society that seems to expect all our children be high achievers it’s easy to imagine that a disabled child might be harder to love. Instead I’ve found the reverse to be true. Watching our little fellow struggle and overcome all the challenges thrown his way has made him so much more precious in our eyes. We despair at his occasional setbacks and triumph at his successes. I will expect you will find the same and come to love your little person more than you could ever have imagined. Good luck on your journey.’
BENISON O’REILLY (SAM’S MOTHER), THE AUSTRALIAN AUTISM HANDBOOK
Prologue
1985
It’s the orange vinyl chairs I remember clearly. The rest blurs in my mind, receding into shadows that I want to shine a light on, but also don’t.
My family were gathered in a quiet room off the side of the emergency department, my parents having taken a call from the police telling them to come to the hospital straightaway. Something to do with my seventeen-year-old brother, Matthew. Something serious.
A camping accident, a stupid accident.
We huddled, trembling together on the orange chairs, as the social worker quietly told us that he was gone. My mother and father fell against each other. The rest of us, the other five kids, gravitated towards them, a scrum of screaming, crying. There is one noise I can never erase from my memory: the low wounded animal moan that came from my mother.
It rained at the funeral. The whole school was there.
I always believed I should have prevented it, the accident. I should have helped. I had always helped Matthew. We were Irish twins, born within a year of each other. He was a vulnerable, sensitive boy, and I was not. I was his protector, and I had failed him.
I cannot visit the grave. I never have.
2004
The paediatrician phoned me at my general practice surgery. I was between patients. I knew my wife, Benison, was taking our youngest son, three-year-old Sam, to see him today and was, as always, apprehensive about such visits.
He didn’t beat around the bush. ‘James, I think Sam is on the autism spectrum.’
My head swam. I felt sick.
‘Why don’t you come over and I’ll have a chat with you and Benison together?’ he continued calmly.
I stood up and tried to leave, but dizziness overcame me and I clutched at the doorframe. My colleague Jenny looked up from the adjacent consultation room. ‘James, what’s wrong?’
I told her and started to weep. ‘Oh my God, Jenny, my child has a disability.’
I am still grateful for her perfect response. She sat me down and said, ‘James, he is still your Sam. He hasn’t changed today; he is still your lovely boy. You just get over there; I’ll cover the rest of your patient list. We’ll sort everything out at this end.’
In the car, thoughts and questions tumbled into each other like a pile-up on a freeway. I drove past the old brick stack on Corunna Road in Stanmore, its crimson and umber bricks rising like a minaret against the blue sky, its intensity and sharpness mirroring my feelings.
At Dr Rowell’s surgery, Sam waded among the scattered toys on the waiting-room floor, lost in his own world. The door to Greg’s room was open and I walked in. Benison sat upright, red-eyed, beseeching me to provide some sort of answer, some reassurance, but I had none. Greg showed me to a seat and started to tell us about our new future. Our education in autism had begun.
No one wakes up one morning, turns to their partner and says, ‘Hey, let’s have another child, one with a disability. That will make our lives more interesting.’ Autism is one of those
random twists of fate, a mixing of the wrong, or at least different, combination of genes. It’s not uncommon though; at least one in every hundred people are on the autism spectrum, ranging from the intelligent but socially awkward geeks who populate high-tech industries to severely disabled people who may never speak and will need support throughout their lives.
Sam, it’s transpired, is neither of these: he sits somewhere in the middle, but beyond that description defies categorisation. He is uniquely, unapologetically Sam.
He was our third son, born by caesarean section on 1 February 2001. Right from the word go he appeared ‘different’ to Benison: distant, and difficult to settle. Not worryingly different, but it was there. At his six-week baby check, she queried his poor eye contact with the paediatrician, concerned about developmental delay. Autism was not on our radar. How that would change over the years.
Between six and twelve months of age, Sam seemed to be okay, even friendly, social. We have photos from that time that show a friendly, smiling, engaged bub. We started making plans for a major home renovation.
Then, around his first birthday, the difference returned, although we didn’t immediately notice. It sneaks up you, ambushes you. Photos from his first birthday celebration show him surrounded by his smiling big brothers but his own expression is blank and uncomprehending. He became a tearaway who, if not strapped into his stroller or mesmerised by a Wiggles video, would run and run and run. Toys held no appeal for him, except to scatter across the floor. He learnt a few words only to forget them.
One day, when we were living in our rental house, our own house half-demolished for renovations, I glanced at him in his high chair and the word ‘autism’ entered my mind for the first time. I shook my head and dismissed it.
After Sam’s second birthday, Benison started him in swimming lessons. In a class alongside children the same age, his differences became impossible to ignore. It was more than disobedience: he didn’t even seem to understand what the instructor was saying.
Another trip to Dr Greg, the paediatrician. This time Sam was diagnosed with global speech delay. Speech therapy commenced and Sam began attending a playgroup for kids with developmental problems. But it was like a bandaid for a gaping wound: what small progress he made in language was more than counteracted by his increasingly abnormal behaviours as he retreated into his own world.
Another year passed, until that fateful day in February 2004 when Dr Greg changed Sam’s diagnosis to autism, and with it our lives.
A few days later we held a belated third birthday party for Sam. The invitations had been delivered weeks earlier and it was too late to cancel. As the children from his day care laughed and bantered, Sam sat in a corner repetitively brushing his face with the paper decorations for an hour—this was ‘stimming’, an autistic behaviour we would soon learn much about. Not engaging, not communicating, not socialising. Of course it was autism. As a doctor I felt incredibly stupid. I’d let denial cloud my judgement.
For months we struggled, grieving. Grieving for the loss of our parallel son Sam—the one who didn’t have autism. All the other aspects of our lives didn’t go away. There was work for both of us, school and sport for our two older boys, Matthew and Nicholas. We plodded on, trying to keep our heads above water, trying to manage Sam’s increasingly challenging behaviours and everything else, trying to deal with this unwelcome stranger in our lives, autism spectrum disorder.
We were learning fast about autism. For Sam, it manifested as deficits in social skills, in communication skills, in coping with the sensory challenges the world throws at us: lights, sounds, touches, smells, tastes. It was screaming at the sound of hair dryers and vacuum cleaners, refusing most foods except bread and milk. It was repetitive behaviours, obsessive behaviours, tantrums, and just being weird, different to other kids. Sam, sitting in the corner, lining up his Thomas the Tank Engine trains.
In our darkest moments we wondered what the future held. Would he have friends? Would he ever have a job, a girlfriend, independence, any quality of life? Most of the autism literature of the time was relentlessly bleak, talking about institutions, profound disability, offering little or no hope. Would this be the life for our Sam? We were lost in a fog.
A few months later, Benison picked herself up and started to read, determined to find out all she could. She immersed herself in all of it: the useful, the relevant, the scientifically valid, and the other junk too. As a medical writer, she knew how to analyse and scrutinise, to question and to doubt.
Intensive early intervention, we discovered, was the answer. Otherwise known as bloody hard work and bucketloads of money. The version of intervention we chose was Applied Behavioural Analysis—at the time, in 2004, this was pretty much the only evidence-based game in town. For thirty hours a week, Sam worked on his social and communication deficits one on one with a therapist. If he sat still for two minutes in a chair, or completed a puzzle, he would be rewarded with a treat, such as a play with Dorothy the Dinosaur or Thomas train, or just a swing around in the air and a whoop. Thirty hours a week, week in, week out.
I was still carrying the guilt for failing my brother, but Sam was not lost forever, only missing, and I began to wonder if I could heal my own wounds by helping my son. For Benison, it became her mission, her passion. We became a team: Team Sam. And our therapists—young university undergrads, male and female—became our friends, our brothers and sisters in arms. Benison quit her job to effectively become the office manager of this new small business, with Sam’s social and communication skills our stock in trade. She joked the neighbours would start gossiping about the stream of young men entering our house while I was at work. My medical practice changed: I became a family doctor focused on autism. Both Benison and I wrote books and articles, gave talks and presentations, became supporters of Autism Awareness Australia and lobbied for funding and research.
Sam learnt to sit still and complete puzzles and games, to hold a pencil, to spell simple words and know his days and months of the year. He began talking in short sentences. Our confidence grew hand in hand with Sam’s development. In a soul-crushing day for us soon after his autism diagnosis, he’d undergone testing with a psychologist and been assessed as moderately to severely developmentally delayed. Twenty months later he was retested and had made leaps and bounds, his IQ now in the borderline normal range. As we’d always suspected, Sam had intelligence; we’d just had to learn how to reach past the autism and tap into it.
Yet along with this intelligence came a complete lack of street smarts and a fearlessness that was at times life-threatening. Children with autism frequently wander from care and come to grief; drownings, in particular, are frighteningly common. Twice, after only a moment’s inattention on our part, Sam had escaped and wandered onto roads. On the second of these occasions, he’d climbed through an open window and followed our cat down the street, to be rescued by a stranger as he wandered across a nearby busy road.
His interest in cats led to another near miss. Benison had been in the kitchen when there was a knock on the door. It was our neighbour two doors down. In the space of five minutes, four-year-old Sam had placed a stepladder against our back fence, climbed up onto the neighbour’s roof and then somehow jumped across a four-foot gap onto the adjacent neighbour’s roof! No one was game to follow him and to this day we have no idea how he did it. Like the cat he was following, he somehow had nine lives.
As kindergarten approached we had to accept that Sam was still not ready for a mainstream schooling. Yes, he knew his numbers and letters and days of the week, but even in kindergarten you have to sit still and pay attention to the teacher and this was still way beyond Sam. Like so many kids on the spectrum, he was a mixed bag.
Meanwhile, newer approaches to autism that focused on relationship skills and social development had begun to emerge. While a solid evidence base was still developing, the theory and concepts of these approaches fitted in with mainstream ideas on child development, itself very well gr
ounded in evidence.
We pursued one of these programs, Relationship Development Intervention, with Sam for a few years. It was parent-driven, rather than relying on paid therapists. We read, we studied, and we applied our new skills as parents and teachers.
One of the key principles behind these programs is that a core deficit of autism is an inability to cope with uncertainty. Individuals have trouble filtering out all the information that the world throws at them, and so will gravitate towards activities and situations that are predictable: computers, maths, lining up blocks. One plus one always equals two. If you hit the R button on the keyboard it always types R. This security of binary certainty was a warm blanket that kept confusion at bay. Because social interaction with other human beings is so unpredictable, this is what people on the spectrum withdraw from most.
Imagine landing on another planet where everyone else knows the lingo except you. That’s what it’s like having autism. Of course you’re going to reach for safety, to go where you feel competent. Unfortunately, this withdrawal, while comfortable, is a double-edged sword: if you avoid your fellow human beings, you fall further behind in developing the communication and social skills required to negotiate our ever-changing world.
These new theories suggested the remedy was a gradual and controlled exposure to uncertainty and unpredictability. The terminology used in this emerging branch of psychology is ‘exposure to a dynamic environment’, rather than a static one: to expose your child to graduated doses of uncertainty and, if they coped okay, to reinforce their success by acknowledging it.
This took time. People on the autism spectrum often process information, especially when conveyed as speech, slower than the rest of us. In practice this meant, basically, that you had to slow down, and you had to shut up. The normal one- or two-second delay in response to a question like ‘What is your name?’ or ‘How old are you?’ in a small child could take five or ten seconds for someone on the spectrum.
For parents, this meant waiting. Lots of waiting. I remember the first car trip where I put this into action when Sam was aged five. Previously I would have opened the door, helped him up onto the seat and put on his seatbelt. But this day I just waited, standing next to the unlocked car, while Sam looked at the ground and toed lines in the gravel. Thirty seconds passed. Then he noticed we weren’t moving and looked up at me. Without talking, I looked at the car door handle and then back at him. A light bulb switched on. He opened the door and climbed up onto the seat himself, even attempting the seatbelt. I’ve never opened a car door for him since. The importance of this lay not in the fact he learnt to get into the car by himself, but that he turned to me, his father, for guidance in how to learn a skill for himself. Finally, he was learning what humans have known for millennia—that you learn best from other people.
