(LONDON) Revised by Paula Tooths
So. The child psychologist across the desk has just told you that your three-year-old is “presenting behaviour consistent with that of an individual on the autistic spectrum”. You feel trepidation, sure, a foreboding that your life as a parent is going to be much tougher than the one you signed up for, but also a dash of validation. At least you now have a 10-page report to show to friends and relatives who have been insisting that boys are slower than girls, or that late language is to be expected in a bilingual household, or that you were just the same at that age. It’s a relief that your child’s lack of eye contact, speech and interest in picture books now has a reason and a name. You send some generic emails to people who ought to know first containing the words “by the way”, “looks like”, “has Autism”, “but don’t worry” and “confirmed what we thought anyway”. The replies come quickly but read awkwardly: condolences are inappropriate in the absence of a corpse, and there aren’t any So Sorry Your Offspring Has Turned Out Autistic e-cards. People send newspaper cuttings about autism, too – about how horse-riding and shamans in Mongolia helped one kid, about a famous writer whose son has autism and is doing fine, about a breakthrough diet based on hemp and acacia berries. The clippings go in the compost.
You read books to learn more – until now, the closest you’ve come to autism is watching Rain Man or reading The Curious Incident Of The Dog In The Night-Time. Autism proves to be a sprawling, foggy and inconsistent field. Causes are unknown, though many careers are fuelled by educated guesses. MMR is the elephant in the room, but you’ll get to know a number of people with autism who never had the injection, so you draw your own conclusions, like everyone else – until such time as harder data emerges from the vast control group of MMR refusers’ children created by the scare. Symptoms of autism appear to be numerous. Some are recognisable in your own son, but just as many are not. You learn that luminaries such as Bill Gates have “high-functioning autism”: “low-functioning” people with autism lead less visible lives. You hope for the best.
There’s quite a marketplace for autism treatments, you find. Some sound rational, others quasi-deranged. One claims that autism is caused by allergens entering the bloodstream through a perforated bowel and inhibiting cerebral development. You FedEx a blood sample to a laboratory in York, and quite a long list of prohibited foods comes back,
including lamb, kiwi fruit, pineapple, gluten, red meat and dairy products. Your family adopts the regime, and although you feel a little healthier, you see no change in your child. Ditto the benefits from the ionised water you’ve ordered from the US, which a friend passionately recommended. You feel a new pity for the medieval unwell, who limped from one shrine to another, hoping to find the right saint to pray to, when what they really needed was a quantum leap in medical science. Such a leap has not occurred in autism research yet.
Autism therapists enter your life. Some work for local care-providers, some are freelance; some are occupational therapy specialists, some focus on speech and language, some advocate Floortime™ (a play-based treatment), some “applied behaviour analysis” (rewards and measurements); some are evangelical about one approach, some take a more pragmatic “whatever works, works” approach.
You learn that treatment is called “intervention”, and that while 10-15 hours a week are recommended, your local care-provider has the resources to offer only about 15 hours per year – and, after sickness and staff training, this will become 10 hours. One afternoon, a therapist from the care-provider is so fazed by your kid headbanging the kitchen floor that she flees before the session is over, and you realise you’ll have to pay privately. You don’t begrudge the money – the therapist you find has a horse-whisperer’s gift for teaching children with special needs – but 10 hours a week is going to cost upwards of £10,000 a year. (How much is Eton again?) Some is refundable, if the official criteria for the tutor are satisfied, but for the most part you’re on your own. Therapy during school holidays is not repayable, because the authorities believe autism ceases to exist outside term time.
Things get challenging. Your sleep is broken and stays that way. Kids with autism don’t really do bedtime – they keep going, Duracell bunny-style, until unconsciousness sets in, often after midnight: 3am “parties” are common, where your child wakes up refreshed and jumps on the bed for an hour, laughing and crying. After one rough night you take your kid out for a spin in the car to give your partner a rest – 45 minutes of nonstop screaming later you give up and come home. Worst is the headbanging – against the hard floor, up to a dozen times a day. Your kid’s bruises are earning you dodgy looks at the supermarket checkout. It is suggested that you keep a self-harm diary to identify the triggers, but these seem numerous and obvious: hunger; tiredness; frustration at dead batteries in a toy; a scratched Pingu DVD; not being allowed to play with kitchen knives.
You’re warned against stopping the headbanging by force, in case this reinforces the self-harm by teaching your kid that headbanging = attention + a hug, but you’re also afraid of brain injury and concussion. A wise therapist suggests placing your foot between head and floor, so that the impact is softened. As your feet get tenderised, you recall an influential American psychologist who preached that autism is caused by “refrigerator mothers” not loving their children properly. You hope that Lord Satan has something special planned for that learned gentleman. You envy acquaintances who have hands-on family members living nearby, able and willing to roll up their sleeves and help: like many others, you and your partner are on your own. Self-pity, however, makes you feel wretched and is a rudeness to single parents coping with a child with autism while being forced by the bedroom tax to search for one-bedroom flats.
Your social horizon dwindles. Friends assure you, “Bring him over. It’s fine – our place always looks like a bomb’s hit it” but you know they’ll be less laid-back when a curtain rail gets used as a gym bar and comes down in a shower of plaster. Babysitters, air travel, hotels and B&Bs are off the menu. You are offered respite care, but it feels too much like dumping your four-year-old among minimum-wage strangers in Mid Staffordshire, and turn down the offer. Soon after, you read about a teenager with autism who died at a nearby respite facility. He choked to death on a rubber glove and wasn’t found until the morning. You feel a fuzzy anger at autism itself, for denying your kid so many childhood pleasures: making friends, trips to the cinema, birthday parties, a day at a theme park.
Your kid suffers from a period of acute hypersensitivity, when clothing appears to feel like cheese-graters, and sitting or even lying down to rest causes intolerable distress. People suggest massage oils, swinging your kid around at high speed, and waiting for the sunspots to subside. Others say, “Thanks for telling me” in a consoling tone of voice. A potty-mouthed Edinburgh friend says he hasnae got a fockin’ clue how fockin’ hard that must fockin’ be fer all o’yer, which cheers you up a bit. The hypersensitivity lasts about a fortnight. That was the nadir.
‘One afternoon, a therapist is so fazed by your kid headbanging the floor that she flees. You realise you’ll have to pay privately. (How much is Eton again?)’ Photograph: Adam Patterson for the Guardian
Your kid turns five. One day, he traces a finger over the VW insignia on your car and remarks “V and W”. A few days later, you hear him sing
“Cork 96 FM” – the cheesy jingle of a local radio station, but it is pure music. Soon after, there’s a cup held under your nose and the word, “Juice.” Two weeks later your therapist brings your child into the kitchen to say, “Can I have apple juice, please?”
Life’s still far from Mary Poppins – there’s no dialogue as such, and while many people are tolerant, your partner reports unfriendly vibes from other mothers at the Jumping Beans Preschool Song and Dance Circle. Au revoir, Jumping Beans. The shoe shop lady rolls her eyes in contempt at your child’s meltdown at the foot-measuring stool, and the owner of a hair salon doesn’t hide what she thinks of such a big kid getting freaked out by buzzing clippers. Nonetheless, you are aware of your son growing into who he is. Life gets better in small increments. Your child likes standing on your feet to chop vegetables; baking; reciting long, half-clear chunks of Wes Anderson’s Fantastic Mr Fox; gazing at the sky, fascinated, through the fingers of trees; and leaping with delight at the Archers omnibus theme tune every Sunday. One day your child replaces the name “Dora” with his own name in Dora The Explorer, and gives you a crafty smile to see if you noticed – a first joke. He is entranced by the numbers on the microwave display panel, and counts the stairs in English, Spanish and Japanese. One day you notice he has scored 79,550 points on a tricky iPad game, Doodle Jump. This is 50,000 points higher than the top score achieved by any “neuro-typical” member of the household.
Time to find a primary school. You take your child to the therapist at the local care-provider for an updated needs assessment. In due course you receive a list of what a primary school will need to provide: occupational therapy, speech and language work, and a one-on-one SNA (special needs assistant) within a special needs unit. You ask which schools in the area can provide all this. The therapist looks cagey and names two schools. School A is 20 miles away, school B is 30 miles away. Over the phone the principal of school A asks whether or not your son is verbal. You say, “A bit.” The principal tells you they work with non-verbal children only, and wishes you a nice day. You visit school B, where the special needs unit has six places, though three are already filled. You realise that every five-year-old kid with autism from your half of the county has to compete for three places. The principal is impressive and her son has autism so she knows what’s needed, but the application form warns that the school “upholds the Catholic ethos” and asks for the name of your parish and priest, if applicable. It isn’t, and you doubt that 79,550 points at Doodle Jump will help a whole lot.
As you drive off, you think you can hear the distant thunk of your application form hitting the bottom of the bin, but that can only be imaginary. Later, you call the care-provider therapist to tell her you don’t think your kid has a school to go to in September: what should you do now? She says, “Well, you might hear from school B.” You say that you both know that won’t happen, and ask what she would do if the shoe were on the other foot. You badger her into admitting that she has no idea. Later, you regret it. It’s hardly her fault.
At the 11th hour the Department for Education sniffs legal action and media scrutiny, and realises it has to respond. Or maybe that’s far too cynical; maybe the policy-makers were motivated by altruism and concern. A nearby primary school is approached with a proposal to host a new unit for children with autism. The principal, whom you’ve known for a few years, is dedicated, focused and indefatigable. She agrees, and thanks to her, your six-year-old has a school when September rolls around. Everyone involved is on a learning curve, but the underfunded, underpaid team do a great job. Your kid has classmates for the first time, and by hook and by crook each student acquires an iPad. These prove to be godsends. Beside the specialist apps, the built-in video camera allows the teacher to record your child achieving goals in the classroom that you never imagined were attainable. You and your child love watching these video clips at home.
Two other things help a lot: an analogy and a book. The analogy comes via a Jewish friend’s rabbi, and compares expectations of parenthood to planning a long sojourn in Italy. Prior to your holiday, you read up about Italy, speak with experts on Italy, plan your route, gen up on Italian and anticipate the pleasures of your time there. Having a life-redefining diagnosis – like autism, Asperger’s, Down’s, whatever – is like getting off the plane and finding yourself not in balmy, romantic Rome but… Schipol Airport, in Holland. What the hell? My wife and I booked our holiday in Italy, like everyone else. But time passes and the penny drops that hankering for Italy is stopping you from seeing Holland. Your attitude shifts. You begin to discover that Holland possesses its own singular beauty, its own life-enriching experiences.
The book that helped me the most to “think Dutch” about my own son’s autism was written by a 13-year-old Japanese boy called Naoki Higashida. It’s called The Reason I Jump. The author would be classed as severely autistic, and writes by pointing to a “cardboard keyboard”, one character at a time. A helper transcribes the characters into words, sentences and paragraphs. Part one adopts a Q&A format, where the
author answers questions about life with his condition. Reading it was illuminating and humbling; I felt as if my own son was responding to my own queries about what it’s like to live inside an autistic mind. Why do you have meltdowns? How do you view memory, time and beauty?
For the first time I had answers, not just theories. What I read helped me become a more enlightened, useful, prouder and happier dad. Part two of the book is a story, I’m Right Here, about a boy called Shun who discovers he’s dead and can no longer communicate.
My wife and I translated The Reason I Jump clandestinely, just for our son’s therapists, but when my publishers read the manuscript, they believed the book might find a much wider audience. For me, Naoki Higashida dissolves the lazy stereotype that people with autism are androids who don’t feel. On the contrary, they feel everything, intensely. What’s missing is the ability to communicate what they feel. Part of this is our fault – we’re so busy being shocked, upset, irritated or looking the other way that we don’t hear them. Shouldn’t we learn how?