My Son's Not Rainman: One Man, One Boy, a Million Adventures

by John Williams

  We all want people to love our children. We want people to tell us that they’re the most beautiful, the most intelligent, the most advanced. And, in some messed-up way, it felt like my brother was saying he didn’t love him. If he thought there was something wrong with him, how could he love him? He was perfect, wasn’t he, my boy?

  It was unfair to my brother to think that. There was always going to be someone who would say the word first and it just happened to be him. Maybe I felt it should have been me, in my role as parent. I should have been the one to speak the seemingly unspeakable. We drove back to his house in silence. This new word, ‘autism’, that I’d barely even known moments earlier, now hung in the air like the fragrance of a cheap, crappy air freshener. I returned home and fired up the computer.

  Ten minutes later, Windows 98 burst into life. I dialled the Internet connection, the reassuring buzz of the line temporarily drowning out the noise in the background as my wife tried to settle my son for the night. I opened up AltaVista and I typed those six letters on the keyboard. A-U-T-I-S-M. Seeing the word appear across the screen for the first time, I hit search.

  CHAPTER FIVE

  Lesson One

  Today The Boy is unwell. It’s not a regular occurrence really. It starts in the night, a barbaric yelp in the dark at two in the morning. I rush into his bedroom, standing on the obligatory piece of Lego en route just to ensure I am in fully sympathetic mode by the time I reach his bedside. He is all scrunched up in bed, pulling his knees into his chest.

  ‘My waist,’ he howls. ‘My waist really hurts a little bit.’

  Now, I’m no medical expert, but I’m guessing if I phone NHS Direct with the symptoms ‘It really hurts a little bit’, they too might well be stumped. However, the screams into the night suggest the pain might be closer aligned to the ‘really’ part of the sentence than the ‘little bit’. Never fear, son, the doctor will see you now. I shall investigate further.

  I know from past experience that I am only awarded three questions to get to the root of the problem. Any more and the additional pressure of having to answer questions he doesn’t know the answer to will cause a meltdown to accompany the deathly screams we are currently experiencing. I break it down into simple, easy-to-manage sentences. Once again this boy – who can speak so well about subjects that mean so little – can’t find the words to express himself when it really matters.

  ‘Show Daddy where it hurts.’

  ‘Everywhere!’ he screams, clutching himself tighter.

  ‘Is it inside or outside?’

  ‘Both!’ his voice going up an octave to remind me I only have one more question left before we go to that place we don’t want to go.

  I offer the solution I always offer. The only thing I know.

  ‘Let’s try to go to the toilet.’

  And off we hobble to the bathroom, the change of scenery, the cold tiles under bare feet helping to calm him. The pain still comes in waves, but quieter now. He’s going to live.

  So we’re off school today. He still has pains in his stomach. I think. And that’s just it – I think. It’s just guesswork. I’m still none the wiser as to what’s wrong. Everything manifests itself as pain in the stomach for him. Anxiety, stress, depression, appendicitis – all have the same symptoms. And they just serve as a reminder that, despite his fluency, the words just won’t come when it really matters. This boy who can talk until the end of time itself about how to make a diamond pick axe in Minecraft can’t find the words to tell someone he’s hurting.

  And that makes me really sad a little bit.

  MY SON’S NOT RAINMAN BLOG

  Now, settle down class. It feels like this should be the part of the book where I offer up the definitive answer to ‘What is autism?’ I will enlighten you with my wit and wisdom as I describe perfectly the condition and how it affects those with the diagnosis. (Worldwide diagnosis rates vary hugely. Currently, it’s estimated there are 1 in 100 people in the UK, and as many as 1 in 68 in the US.) Except I just can’t do it.

  Apparently the family have lived with autism for coming up to thirteen years now, but I don’t know if I’m any closer to defining the condition than I was when I first typed the word into that ageing computer all those years ago. Each and every day The Boy continues to baffle, amaze, frustrate and confuse me in equal measure. And that’s just the way things should be. I can’t describe autism to you as if I’m some sort of expert, because all I know is his story. He no more represents every autistic person than I represent every middle-aged man with green eyes. If I’ve become an expert on anything over the years, it’s him. Just him. And even he evades me most of the time.

  The Internet is a strange and mystical place where you can find pretty much anything if you want to. Fancy finding a link between the speed of toenail growth and the likelihood of a cardiac arrest before the age of forty? Search for long enough and it’s there. The same applies to autism – enter the behaviour that is of concern and soon enough you will have documented proof that there exists a link between that and autism. I’d like to tell you that when I read the search results ten years ago as they tumbled on to the screen, it felt like someone was describing my son perfectly. It didn’t. And in so many ways it still doesn’t.

  Much of what I read didn’t match my son at all. The repetitive body movements, an intense interest in certain objects, the lining up of toy cars. He was more likely to smash a toy car to pieces than place it in a perfect line with others. For each of the criteria he seemed to meet there were another two he didn’t. Maybe if things had been more straightforward we’d have pushed for more help earlier. I’m not a clinician or researcher, I’m just a parent, but in many ways the term ‘autism’ seemed to be an umbrella term to describe a range of conditions that didn’t always fit elsewhere. As an educational psychologist once said to me, ‘Show me a child with autism and I’ll show you a child.’ (Don’t worry, you’re not alone, I thought she was a smart arse too.)

  I guess this is where I’m putting in a kind of health warning. If you’ve picked up this book thinking that you’re going to better understand autism, then I’m not sure it’s right for you. All I can ever share with you is the story of one boy. There will be behaviour that might just be that exhibited by a little boy just doing as little boys do; some of it might be the result of autism; some of it may be the cerebral palsy that was diagnosed further down the line, and some of it will be a result of the unique conglomerate of cells that is The Boy.

  But how much is age, how much autism, how much upbringing, how much cerebral palsy, how much personality? I used to think of autism in terms of an impenetrable cloak that surrounded him and if I could just discover how to remove it there would be this ‘cured’ being on the inside. But over the years I’ve learnt there isn’t any one point where the autism ends and he begins. He’s just him. And that’s the way it should be.

  So there may well be behaviours and situations that people can relate to but I’m afraid that’s about as good as it gets in terms of my being able to describe the condition. Just as an example, it’s estimated that over twenty-five per cent or one in four of all people with autism have no or very limited speech. Twenty-five per cent. Another huge percentage of those with autism have associated learning difficulties. There are people who will need a lifetime of support, while alongside those are some who are savants, with incredible skills and memory (who coincidentally might also need a lifetime of support).

  This story I’m telling of The Boy can’t possibly represent everyone’s journey, no matter how much I’d love it to. That’s why I said earlier that this isn’t really even a book about autism. It’s just the story of one boy, told through the eyes of one man. That’s all it can ever be. I’m not sure how useful it will be in years to come to continue to have one word to describe such a cross-section of society. In forty years’ time maybe the term autism won’t exist, much as the term used to described it fifty years ago, ‘childhood schizophrenia’, doesn’t exist now.r />
  There was one behaviour that never appeared on the ‘How to tell if your child has autism’ checklists. Yet, as well as the dribbling and the slight speech delay, it’s probably been the thing that has defined autism for us as a family over the years. And that behaviour is biting.

  That’s right, The Boy is – and has been ever since he procured his first tooth – a biter. Maybe one of the least attractive (if that’s even the right way of thinking about it) of the autistic traits. He doesn’t just bite other children – he’s fairly indiscriminate in that sense – he’ll go for anyone. Joking aside, it’s a behaviour that The Boy dislikes immensely and I’ve struggled about including it in the book because of that. But I feel I can’t tell his story without it, since it’s what has caused us the most difficulties.

  It’s the behaviour that has led to exclusion after exclusion from childminders, nurseries, after-school clubs, mainstream schools and even special schools. Yet still it’s a behaviour that people don’t often talk about. Given its prevalence you will probably find information about biting on the websites of most autism charities, but it will never be on the front page. It’s like the unacceptable face of autism that must be kept hidden behind closed doors. When autism is talked about in the media, it is too often discussed in terms of ‘quirkiness’ and even of being ‘just a bit nerdy’ like that bloke off The Big Bang Theory.

  There will be a young boy (it’s always an autistic boy on the telly, the ever-increasing number of girls being diagnosed seem to never get a look in), and he’ll be around the age of six or seven. He’ll be a very solitary child, who doesn’t like mixing with others. He’ll prefer to spend his days sitting alone in the corner of the room, facing the wall, reading train timetables. He’ll sit his maths GCSE around the age of eight and three quarters, learn to play grade eight piano by the time he’s eleven, sit A-level advanced physics at the age of thirteen, and in between he’ll just fill his time memorizing the phone book. Well, there’s another side to autism that isn’t mentioned enough: incredibly difficult behaviours, behaviours that cause harm to both the individual and those around them.

  Does every person with autism present with challenging behaviour? Certainly not, but there are many that do. Those behaviours can vary enormously, from physical aggression (such as biting) and self-injury (such as banging their own head on the walls and the floor), through to smearing (the commonly used term for smearing excrement on walls and furniture). It’s difficult to comprehend, but right now there are still many men and women (and in some instances children) with autism and/or associated learning disabilities who are being held in hospitals and institutions around the world because they are deemed to be at such a high risk of harming both themselves and those around them. That’s the reality of autism for some families. Yet if we don’t talk about it those people are in danger of being kept hidden away from society for years to come. Through openness comes understanding and through understanding comes change.

  The reasons for challenging behaviour can be as complex and varied as the condition itself. Sensory issues, anxiety, frustration and sometimes just learned behaviour all play their part and trying to unpick these effects can take years.

  I think, certainly here in the UK, we’re getting better at recognizing challenging behaviour as a form of communication (most schools will nowadays chant back the mantra ‘all behaviour is communication’ in meetings), but applying that knowledge to the everyday seems to be a difficult process. Take biting as an example. If you have communication difficulties and don’t feel you can always get yourself heard, in many ways biting is the perfect solution.

  Let’s say you’re at preschool and you’ve just had the time of your life in the sandpit. Later in the afternoon, if you play your cards right, you may well dabble in a spot of finger-painting. You don’t really have a care in the world. But first, it’s snack time. Time to munch away on twelve raisins stored in a box that is the perfect size to store twelve raisins. And when raisin number seven puts up a fight and refuses to budge out of the box, your fingers are just the right size to pluck him out of there. There’s a contentment to the world. Just being alive, in the here and now, three years of age, there’s no finer place to be. Then you look up and across the table sits Shane.

  You’ve been coming to this place with Shane for a while now, and he’s always sitting across the table. But today Shane has put down his raisins. He’s discovered something far more important to fill his time than a snack of dried fruit. Shane is a maverick who chooses not to live by the nursery rules. Or he’s just forgotten they existed and is so carried away with the joy of the moment that nothing else matters; it’s difficult to say. Either way, Shane has disregarded the No Toys Allowed At The Snack Table rule and is pushing a toy car back and forth along the table top.

  You discard your raisins. Any sense of hunger or enjoyment from eating has vanished. Your eyes are just drawn to that small, orange car. Mesmerized, you watch it going back and forth in Shane’s hand, gliding along the table top. Each turn of the small rubber wheels takes you further and further into your hypnotic trance. Seconds earlier you didn’t even know that car existed but now, right now, you know your life will never be complete without that orange car in your hand. You want it. More than you’ve wanted anything for at least twelve minutes. And this is where the problems start. Because you want that car more than anything in the entire universe. But Shane has the car. It’s Shane’s car. But you really, really want the car. And you can’t find the words inside yourself to ask Shane for the car. Without even thinking, a solution comes to you. If you can’t find the words, there is another way you can get the car. You lean across the table and sink your teeth into Shane’s arm. Shane makes a yelping noise, but you ignore that. Like magic, his hand releases its hold on the car. Perfect, job done. You have the car. Thanks, Shane.

  And once biting works for you in one way, it starts to work in lots of other ways too. There are so many things The Boy struggles with – day-to-day sounds, noise, lights can all become too much – as if he has a heightened sensitivity to it all. Ever since he was born he has regarded the vacuum cleaner as a mobile torture unit. The noise it made was unbearable for him. It’s like he experiences the world on a different frequency and everything is intensified. And when it all becomes too much, when the sensory overload reaches fever pitch and he feels he might explode as the turmoil rages and builds inside him, sinking his teeth into something soft is a release. All that tension, that built up fear and anger inside of him, is released.

  And writing this now makes me come across as some kind of super parent. Ooh, isn’t he brilliant to have such insight into his son’s mind? But really, I’m a fraud. It’s taken years to get to this point. Years of dragging him around soft-play centres, with their bright lights, screaming children and activity, and wondering why he always hit out when anyone came near him. Years to finally understand just what he was trying to tell me. If indeed all behaviour is communication, then for years I didn’t listen. It wasn’t because I didn’t want to, it was because I didn’t know how to. I couldn’t grasp that someone with the power of speech couldn’t use it to express their basic needs and desires.

  When I typed the word ‘autism’ into the computer that night after returning from my brother’s house, it just didn’t seem to match, probably because I didn’t want it to. Son of John was just a few months behind his peers, that was all.

  I’m sorry I didn’t have the answers, son. For so long, I’m not even sure I understood what the questions were.

  CHAPTER SIX

  Distant Relatives

  Sometimes in life we can’t avoid trauma. Sometimes we just have to face the things we fear the most and deal with them. We know it will be hard, but through adversity comes strength. When we face our fears, we overcome anything.

  Today was Haircut Day.

  I have managed to keep Haircut Day to a biannual affair. There was one year when I felt particularly brave and I took him quarterly. I couldn�
��t do that now. I’ve lost the fight.

  There’s a fine balance between hair-cutting and letting it grow. If there’s one thing The Boy hates just as much as Haircut Day, it’s Hair-Wash Day. And sadly Hair-Wash Day comes around a lot quicker. And the longer the hair, the longer Hair-Wash Day takes. It’s a balancing act.

  Now, I have been to most barbers in the south-east London area with The Boy over the last ten years. Most of them we only visit once. The battle scars for both cutter and cuttee have been too much.

  ‘Why not cut his hair yourself?’ I hear you cry. I did. Once.

  I’m sure I made my ex-wife cry many times during our marriage but nothing will compare to the tears she cried when she saw the results after I’d cut her son’s hair. I think it was using nail scissors for the fringe that tipped her over the edge.

  Now there is only one barber we go to. Nicholas, the Greek Cypriot. He is an old, gentle man who has been cutting hair for years. Nobody under the age of seventy goes near him. He is slapdash, has bad breath and is grumpy. He has no patience with children whatsoever. He is, however, the fastest barber I know. Oh and he’s seven quid. And there’s never a queue.

  Nicholas reacts to the sight of me and The Boy like an illegal hot-dog seller might greet a Food Hygiene Inspector. Hiding his scowl, in one movement he removes The Boy’s coat, whips out the gown and bundles The Boy into it like a straightjacket. Nicholas knows getting in there early is key. He gets The Boy in the chair and spins the chair away from the mirror so The Boy can look out of the window. We learnt four years ago not to bother with the mirror. Then Nicholas attacks with the scissors. The dexterity of this old man’s fingers as the scissors dance over The Boy’s hair leaves me stunned every time. As he goes he repeats constantly, ‘Look at the big dog. Look at the big dog,’ while gesturing through the window with his elbow. We have never seen the big dog.