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The Writer's Life

Postcard of My Life


Writing at 6.00 am and I suddenly need reminding of the coldest of cold for this scene. I want to hear another writer’s description, what they chose to pick out among the myriad of details available.

Normally easy: I’d rush upstairs and retrieve Barry Lopez’s Arctic Dreams from my bookshelves. Lopez is a writer I return to for any reason at all, and Arctic Dreams remains among my favourites. It’s an enchanting exploration of the arctic.

But my husband isn’t feeling well and, even though he’s the reason I was up at 5.30am, fetching a hot drink and some painkillers for his sore throat, I’ll be damned if I will wake him. So instead, I read what I can of Lopez’s stunning book off the Amazon “Look Inside” feature. I get about six pages of it with Amazon, mostly about whaling.

However, even within six pages, I am reminded of the rest of the book, and of Lopez’s means of weaving story and discovery, of the place and people he describes, of the history that has been.  I feel the cold now; can write about it, and I’m where I need to be to continue my own chapter.

Something about this situation — it’s odd hour, my earnest efforts, the make-do nature of everything despite having what anyone would describe as abundance — is kind of what my life is like, but in miniature.




Night At The Theatre



My son’s illness arrived abruptly one evening with every sign of stomach virus: vomiting, exhaustion, sweating, terrible bloating and pain. I said, Ring the café and tell them you’re not coming. I said, Stay in bed, don’t worry. I’ll bring you soup when you’re better.


He got better; he got worse. I had that feeling every mother knows: a sense that we hadn’t reach the bottom yet, that things would worsen, that my child was very ill.


I talked myself out of it. Why did I always assume the worst? What was the use to listening to all my think-positive podcasts if I couldn’t even weather my grown son’s ’flu when it arrived?


Then we noticed this virus was missing a few important features. Where was the fever, the diarrhoea? Why did we find him suddenly drenched in sweat? His pulse felt small and too deep inside his large wrists. I couldn’t keep up with its rhythm. His veins were disappearing; his skin yellowing. He was in wrenching pain, a violence within him that was mysterious and terrifying. No, he didn’t want food, nor water even. We urged him to drink, and then chased him to the toilet as he vomited again.


Rule out the appendix. Like American astronauts, the boy has no appendix. It disappeared in the middle of the night years ago, flying across four quadrants of his abdomen before being suctioned by the surgical staff of the same hospital where we finally arrived, weary from two days of our son’s violent illness, worried that he can barely walk now. We show the receptionist’s our doctor’s referral. We usher our son into the crowd of emergencies and tell him he’s going to be okay, not to worry, as he collapses into a chair and is sick between his knees.




You don’t need Becket. You don’t need Ionesco. Just spend the night in the annex off of your local hospital’s A&E and imagine you are in the theatre. You are in the theatre.


Your patience and tenacity are the price of your ticket. You pay first in the waiting room where you sit – that is, if you can find a seat. A&E queues feature a deceptiveness evidenced also in lines at Disneyland. You think your turn is coming, that finally you will gain entry through the big wooden doors that separate you from the doctors (the stars of this theatre), but you aren’t anywhere close. There is a whole other room that you hadn’t seen until now, as you angle yourself carefully in front of the receptionists’ thick glassed walls and assess just how long this may take.


There are ways around long waits: a head injury will do it, but also my son’s savvy manoeuvre: vomiting three litres of green bile in full view of dozens of horrified members of the public. Suddenly, the wooden doors open and he is ushered into a quieter corridor in which people with clipboards and stethoscopes busily attend those lined up in beds and chairs along the walls.


He is moved into an observation annex adjacent to where the paramedics park their ambulances, a room the size and shape of a Victorian factory workshop. The hours deepen into midnight and beyond. Spotlights from behind thick curtains light up one by one. From the dark recesses of the long room come voices. An old man with dementia calls from behind the blue curtains.


“Is there nobody to help me? Does nobody pay any attention?” He grows louder as the nurses pass him, bellowing at the top of his lungs, “HELP ME!”


When they don’t stop he tells them they weren’t worth saving, that the good men who went into Poland to save them should have left them to die.


“Does nobody here speak English?” he yells into the darkness. “Are you all a bunch of monkeys on vines?”


Across from him is young man he calls “soldier”.


“Soldiers like you,” says the old man, and then mutters more about the war, about Poland, about those who would be speaking German if not for the British. “You’re a good lad,” he tells the young man.


The young man doesn’t mind being called soldier. He must sense that the old man has no idea what is going on and he addresses him in a patient voice, trying not to contradict him lest the old man start yelling again. But the young man has had a seizure and is, himself, confused. I can see him under the spotlight, his buzzed hair revealing scars on his scalp, his teenage acne that has persisted into adulthood. He looks underfed and anxious, sitting unsteadily on the mattress with his big feet hanging off the edge. He asks the staff why his girlfriend hasn’t arrived. Where is his mother, too?


“Can someone tell my girlfriend, Jaz, where I am?” he says to any nurse who will listen. “I’m sure she is here. She is probably in A&E. Can someone go to A&E and ask for Jaz?”


He can’t call her because he has lost his phone and he can’t remember her number. He can’t remember when he last spoke to her either. After much persistence, a nurse goes to A&E and asks if a Jaz is waiting, then returns and tells the young man his girlfriend is not in A&E.


“Then can you call her?” he asks.


“What is her number?”


The young man says he doesn’t know, can’t remember, lost his phone. “Has anyone seen my phone?” he says. “Can you ask if someone has seen my phone?”


Hours later the paramedic who picked him up after the seizure wheels in another patient strapped onto a heavy gurney. The young man recognizes him, calling him over. “Have you seen my girlfriend?” he asks.


“Your girlfriend?” The paramedic is in a forest green uniform, his heavy belt stocked with medical equipment. He has black boots, thick arms, a dense moustache and a resonating voice that seems to fill the cavernous room in a way that all the people within it cannot. I love this voice; it has a workingman’s quality to it. It’s the voice of the guy who starts the car, fixes the pipe, stops the leak.


“Jaz,” says the young man. “My girlfriend, Jaz.”


“That the woman with you when we collected you? You told her not to come.”


“I never!”


“You specifically told her not to come to the hospital.”


“But she’d want to be here,” says the young man.


“You told her, Son. You told her not to.”






The old man begins bellowing again. He calls out that he is dying, that he wishes someone would come and give him a needle and end his life because that is how much pain he is enduring. “Not that you lot care!” he says.


He has a bacterial infection on his lower leg. I know this because I overheard the conversation he had with the doctor about it, a conversation the old man can no longer remember.


“That looks awfully sore,” the doctor had said.


“Yes, it’s bloody sore! That’s what I’m telling you!”


“We’ll clean it up for you—”


“I don’t want to get contaminated by these nurses! I might catch something from them!”


“—we’ll clean it up and get you some antibiotics.”


The doctor had moved along to the next bed and the next. The antibiotic was taken as a tablet and the cream ordered from the pharmacy. Now the old man can’t remember that he’s been seen at all. Perhaps he also can’t remember that he is too young to have fought in the war to which he is referring.


“Is nobody ever going to help me? HELP ME! Does anyone – anyone at all – speak English?”


The nurses try to tell him he’s seen the doctor but he won’t hear it. “Does nobody help anybody around here? Who is the General? And I mean the tip-top. I want to speak to the General!




Those who are very ill say nothing. My son exhibits a dangerous quiet while we hover around him making sure he is responsive to his name. We count out his pulse to the stopwatches on our phones, gaze at his chest as it rises and falls with each breath. His pulse is 127. His respiratory rate is just above 20. His hair stands with sweat. His skin beads with it. I am thinking sepsis and ask specifically about that. I am told no, it isn’t sepsis and not to worry about sepsis because they are very clued up about it.


“But you haven’t really seen him,” I say with as little accusation as I can muster. “And if you don’t get him an IV I think he will collapse.”


We get the IV. We wait for the doctor. We watch the drip and our son’s face and we listen as people from across the far ends of the room argue and explain and plead. We hear the nurse ask a woman to tell her what her name is, what her date of birth is.


“What’s the difference?” she says. Then, “Helen.”


On the other side of the thin curtain is a small, balding older man who looks perfectly harmless so it is a shock to hear him speak to his wife, who has dementia. He paces her bed, wrings his hands. He stares out at the doctors then back at his wife. She is doing something to annoy him.


I hear him say, “Don’t touch that! Don’t be so stupid!”


I hear him say, “Now look what you’ve done! That’s a needle, you know!”


She has removed the cannula in her hand. He hisses to her that she is a silly bitch.


“You fucking stop that, you silly bitch!” he says.


She answers as though he has just told her she’s baked a beautiful cake. “I know what I’m doing!” she says brightly.


“Yeah, you know what you’re doing!” He thinks nobody can hear him but his wife’s pillow is only a few feet from where I sit on a plastic hospital chair on the other side of the curtain. “Don’t listen to me when I tell you not to touch it! What do I know? Silly bitch!”


She tries to reassure him that nothing is amiss. “Nothing is wrong,” she says. Again, the bright voice.


“What do I know? Don’t listen to me.”


“I know what I’m doing!”


The husband emanates hatred and despair in equal measures. His wife, the one who once did bake cakes, who once really did know what she was doing, has been replaced by this new wife, who carefully strips the tape from her hand.






The old man with the leg is taken down a hallway. The soldier who is not a soldier spends the night where they first put him, near the arrivals by ambulance. He continues to fret over his girlfriend. We pass by him, curled anxiously on the gurney, looking buggy and confused, so thin he might have been admitted for any number of causes beyond his seizures.


Now we are in a windowless annex room with four yellow walls and no call button waiting for our son to be properly admitted to a ward. Once again, we can hear the old man. His bed must be just down the hall. He is apologising to the nurses, telling them he is sorry his has been yelling so much, that he is in pain. He sounds bewildered, lost. He begins to cry and I feel sorry for him. But even when he’s nice, he’s nasty. To one of the nurses he says, “Be a good girl or I’ll cuddle you as punishment.”


Ten minutes later he is back to his old self, insisting they take him for a wee. “I am desperate! I am going to burst, not that you care!” he yells to no one in particular.


Minutes pass; no one arrives. “I need a wee! HELP! HELP!”


The nurses come, but not in a hurry. It turns out the old man is incontinent. He has no idea if he needs to pee or not. “Get me to the toilet!” he yells. The nurse explains that he has already peed into the pad they provided for him and nothing is left, which is why they haven’t taken him to the toilet.


“We’ll clean you up and get you a fresh pad,” says the nurse.


He tells them they are hurting him, that they are stupid and Polish and ought to have been left to the Germans. “We lost good men!” he growls, then apologizes again.


“Sorry,” he says. “It’s not you. Not you, exactly anyway.”


His voice carries down the dark hall, croaking out his complaints: that he is being neglected, injured, ignored, left to die. That everyone here is foreign. “Good men!” he says. “They were a brave lot.”




My son’s condition worsens and he lies in quiet agony. We will later learn that his problem is an obstructed bowel. We will eventually watch as he is taken through x-rays, then CT Scans, then as he endures a nasal-gastric tube that is inserted into his nose. We will watch as he lies unmoving for the x-ray, nods consent to the scan, swallows the tube in painful gulps.


We hear the footsteps of the night staff that scramble to cope with the numbers arriving. We hear cries and shouts from people who are angry nobody is bothering to help when they are in so much pain. A broken hand, an ear that has been split on the rugby pitch. Many have chronic conditions that have flared up overnight: breathing, blood sugar levels, lymphodoema. The yellers are often not in terrible condition, not physically, that is.


I walk down a dark corridor and am stopped by a woman with wild hair moving stiffly along in her walker. She wants to know how my son is doing. “I saw him in casualty when you came in. He looked very serious.”


“He’ll be fine,” I tell her. I don’t know that this is true, but why not say he will be fine, that his gut will one day function again? It can’t hurt to believe he will be okay, can it? And he will be okay, won’t he?


The old man has started again. But now his inane shouts feel almost comforting. They distract me from my growing fear. I understand that the old man has dementia, that his racial slurs and ugly words toward anyone female are the result of his tangled mind. I can’t help wondering if this was always who the old man really was, however. That the dementia has simple removed a veneer of politeness that once hid his deeper self.


This is my own prejudice evidencing itself against old people, sick people, feeble people. I admire the nurses who ignore him as he tells them they weren’t worth dying for in battle. Who persist with his body, which is falling slowly apart as his mind dips and wanders.


His leg is the least of his troubles – I knew that from the beginning. But here is what I did not know: he is a regular visitor here. He must be because I now hear one of the nurses call him by his name as though he is familiar to them. Is that you, Roger? I hear. How’re you doing, Roger? Their voices are Polish, Portuguese, Irish, Australian, English. And they all know Roger.


A doctor arrives, a young guy whose bicycle helmet attaches to his knapsack and whose glossy hair is combed just like my son’s hair. He says an x-ray suggests an intestinal blockage but they are not sure. They need more tests and, yes, he will be admitted.


All night Roger continues, and I almost welcome his song of complaint because it helps keep me from thinking more darkly about my son’s condition. The nurses indulge Roger, “Thank you,” they say as he tells them good men died to save their blasted country. Or “How could we look after you, then?” when he tells them to go back to wherever they came from.


My son says nothing. I say nothing. We wait in the yellow annex. I make sure the drip is working. My son closes his eyes against the harsh light above. The woman in the walker offers a little wave as she passes by once again. Roger starts bellowing just as the doctor comes to tell us that we need to go to the surgical assessment ward.


“Are you trying to kill me?” Roger screams. Then, “Are there any English here? Are there any English?”









Pet Sheep? Sure, what could possibly go wrong?

I began keeping sheep as pets because I had almost four acres of very hilly pasture studded with trees and bushes. Even a tractor struggled to mow it and very few of the farmers thought it worth their while to try.


The previous owners of our property had tackled the pasture using a quad bike with a mower attachment, but they also kept big horses that could eat grass year round, while my native cob and her small pony friend were on restricted grazing more often than not. While the ponies’ patch of allowed grass was eaten down to stub, the rest of the field grew wild with coarse, stemmy grass, docks, nettles, buttercups and other weeds. By the edges of the stream that flows weakly along one side, bull rushes grew on the bank beneath a growing crop of blackberry bushes. Trees became choked by ivy and prolific, flowering vines. The ancient Perry tree dropped its fruit in autumn where it rotted, killing a circle of grass that was replaced in spring with fresh weeds.


Occasionally, I’d venture out with my favourite gardening tool—an Austrian scythe—and mow down bind weed and thistles and stinging nettles as high as my head. Or I’d get out a petrol-powered strimmer and knock back the thickening brambles. A circumference of mad growth widened around the trees and bushes with every season until a jungle of thorny vines crowded out all but the most intrepid gardener.


Along the borders, branches pushed against the fence lines, the woods threatening to push in. Come winter, the ponies nibbled on the long, browning grass that bent over new growth, but it wasn’t a satisfactory solution. The hillsides gathered a greater number of docks and thistles, growing impervious to my scythe. Herbicides could sicken the plants, making them droop yellow and brown where they stood, but they did nothing to decrease the numbers come spring, and something in me became unwilling to poison the land I’d volunteered to care for.


The farmers laughed at me when I suggested they could use my land for their lambs through the summer. Four acres turned out to be either four too few or four too many—it wasn’t worth their while to keep lambs on such grass and, by the way, what was the condition of my fencing?


I considered getting my own sheep I was told this was a terrible idea. Sheep would exhaust me by constantly pushing their way through fences, or jumping clean over them. I would race through woods with a feed bucket looking for them or, even worse, charge down the road by night hoping to persuade them to follow me before headlamps appeared and an accident occurred.


Anyway, the sheep would all die. I was assured that only farmers had the necessary knowledge to maintain a healthy flock. Farmers understood how to round them up and keep them in, how to dose, drench and, bathe and pour-on all the potions necessary to ward off such killers as liver fluke, foot rot, lice and scald. Only farmers could shear and crutch and dag in order to prevent the inevitable fly strike that killed in numbers in spring and autumn.


Even if I could figure out what they were talking about and stay on top of all the requisite managing, I was told that chances are the sheep would die. Sheep have a million inventive ways to die and they are reputed to regularly practice their death wish, dying by misadventure or fright or pneumonia. They would get bloat—a build-up of gas inside their gut that must be carefully reduced lest the sheep suffer an internal explosion. They would get worms that would require chemical treatment and strict pasture rotation to keep under control. They would contract any number of diseases, a few of which can affect humans. They would get fly strike, a condition in which flies laid eggs on their wool and the resulting maggots ate through the sheep’s flesh, emitting fatal toxins.


They weren’t only passive recipients of death, but active pursuers of it. My sheep would eat poisonous plants, actual garbage, get caught in fencing, become “cast”—that is unable to get up from the ground—until their organs failed and corvids plucked out their eyes. This could happen in a matter of hours, I was assured. I would come back from dinner party to find the remains of my sheep laid out in pieces on the ground. What the corvids left, the badgers would have.


They would die quickly and in agony, ill-suited for the natural surrounds that I had hoped they would manage.


Besides which, they made terrible pets. Pet owners did not know what to do with sheep and ended up with sick and dying animals in breach of every regulations set out of by the government with regard to farm animals. Sheep are food, not pets. Put lamb in your freezer, not your little pony paddock. Pet owners were too soft, misguided and inexperienced to even consider taking on sheep. You will be miserable, I heard over and over. You will regret it!


It was a bad idea, perhaps the very worst of ideas, to put them on my property.


And yet, I did.


The lamb in the photo at the beginning of this blog is the youngest of four that arrived a week ago. And below is a photo of me with some sheep from the first flock I bought, nine years ago. They came to as “shearlings” (year-old ewes) and we’ve been pals ever since. If you happen to want to keep sheep as pets, you’ll be delighted to know that this greenhorn managed somehow, though not without some trepidation. I’ll write a few blogs to give you an idea of what is required, and maybe persuade you to give it a try.


Photo by Jane Starnie


What’s not on your CV?


My CV is a long list of publications, teaching gigs and speaking events. It is barely more informative than the business card I never use, one that lists my name, phone numbers and the word “writer” where others would put their job title.


Wanting to be a writer is a pursuit whose success is unlikely. It’s like wanting to be an astronaut. So few people survive the final cut or make any kind of living doing it that the job sounds fanciful, like something a child invents. I want to be an astronaut. I want to be a writer. Both sound the same to me: improbable and babyish.


Okay, some writers are journalists and that is a real profession, attainable if competitive. But mostly, I am a novelist. That’s just kooky. Astronauts and novelists exist, however, and while our careers may sometimes be short-lived, we certainly see things others do not.


But what isn’t on my CV? What other things can I do that are never mentioned to anyone? We all have hidden talents; some of them grow into actual businesses. My friend, Lone Hudson, is a qualified architect but she is also an amazing artist who made the pot in the photo above. Lone’s ceramics are not only beautiful but inhabit a kind of Buddha calm within their pale aquatic colours and soft geometry. They bring an energy with them, and their presence in a room seems larger than their size should permit.


Lone’s CV will tell you she has been an architect, and it is true. She even built her own large, airy eco-house with slate floors and giant glass doors and a tall, open staircase as wide as my entire downstairs hall. But I think she only built the house as a backdrop to her beautiful stoneware. Lone is almost always in the garden or near the kiln. She’s either sculpting or planting or cooking. What wasn’t on her CV—artist, potterer—has finally been added, but it is late in its announcement. She has a rare gift. I am determined to buy yet a few more of her pieces before they become too expensive to consider.


What’s not on your CV? I bet there is something important, if not awesome. My friend, Simon, has a very high-level job with a major accounting firm, but you’d never know from his Facebook page. There you see what isn’t on his CV, that he is an ultra-marathon runner. His wife and he travel the world, rather swiftly it would seem, running for days at a time. He’s not just a little good at this; he is remarkable.


I’m not sure if there is any feature more outstanding about my life than the words I produce. I have a few small talents: I am a competent hoof-trimmer. Bring me a pony with terrible hooves and years of laminitis, and I will sort it out. I am a careful shepherd, managing my sheep so that they are friendly, cooperative, and live long lives. I am a gifted teacher. If I had taken up high school teaching there would now be hundreds, even thousands, of kids who would have benefitted. As it is, I only teach small numbers on course that is a bit of a sideline for the University of Oxford.


My brother wrote me recently and said something so nice I am going to repeat it here. I hope this isn’t bragging. He wrote, “You’ve always been a person who would help someone if they needed help.”


It’s true. If I think I can help someone, I generally do so without even having to be asked. This trait isn’t on my CV, but I think it ought to be. It may be the best thing about me.



How I Win (& Lose) for My Son With Autism


Since Nick was diagnosed with autism in 1999, various education caseworkers have been assigned to him. There was a gentle man with a white goatee who retired to Yorkshire. Then we had a disheveled, overworked woman who was genuinely kind-hearted but always on the brink of a heart attack. I think she may have quit. There have been many with brief careers at the Local Education Authority’s Special Educational Needs Department whose names I barely learned before they disappeared, along with whatever progress we’d made in negotiating an arrangement for my son’s education.


I’ve fought with them all, it seems, even the ones I liked. Their job was to grant Nick the minimum he needed to continue in school while my job was to make sure he had everything to which the law entitled him. I don’t know how many times I’ve sat in meetings and repeated these words: I will not make deals, nor negotiate away, my son’s rights.


Nick has an Education, Health and Care (EHC) plan. EHC plans identify educational, health and social needs for kids with disabilities and set support to meet those needs. Theoretically, the plan stays in place until the child reaches the age of 25. However, the latest LEA caseworker seems determined to remove Nick from her roster. Let me explain.


Nick was nineteen when he interviewed for a place on an introductory IT course at a local community college. He was accepted. Several months into the programme, a caseworker emailed me to say that Nick could not continue with the course. Apparently, because Nick had achieved 2 A-level grades at Level 3 (one in French and one in Greek) in secondary school he was overqualified to take the IT course at the local community college. The IT course was for Level 2 and Level 3 students. This level was at or below his previous level of education and therefore the education authority had decided he must leave it.


I wrote back, explaining that while Nick had indeed achieved two “C” level grades in French and in Greek in secondary school, he’d done so because he has an obsession with foreign languages. Obsessions are part of the collection of traits associated with autism.  Nick studies languages for hours every day using his phone or computer to access websites and verb tables. His obsession is so extreme, we have to interrupt his drills to get him to answer us.


As obsessions go, this is a good one. He speaks with a beautiful Parisian accent, talks like a Greek when in Athens, and charms everyone at our local Ethiopian restaurant with his attempts at Amharic. It also means he has a couple of A-levels. It does not mean he can do IT.


Nick’s languages are a splinter skill. They do not reflect a high level of academic achievement generally on his part. He was dragged through his GCSEs, achieving very few on first try. His GCSEs were so bad in fact, that when he applied to study languages at A-level, he was refused. The only reason he ended up studying for those A-levels in French and Greek was because I begged the secondary school—literally pleaded—until at last they begrudgingly allowed him to study French and a few other languages there. “We’ll try it,” they warned me. “But we won’t continue if we feel he can’t succeed.”


What a luxury to be able to drop a person because they won’t succeed. Parents of autistic kids can’t do that.


But back to my current argument over the IT course at the community college. The local education authority (LEA) would not support him in IT because he wasn’t able to begin at Level 4. Or even Level 3. Months into the computer course (one he loves), Nick was struggling to pass at Level 2. His teachers liked him; he got along in class; he went to college with pride every morning, and he tried his hardest. But the Local Authority was now refusing to fund him. Unless I could convince them otherwise, Nick would have to leave the college mid-term.


You might be asking yourself a few valid questions. First, why isn’t this kid with A-levels going to university and studying languages?


I have to admit, I had once greatly hoped he would apply for a university place. But it was a dream of mine, not his. Anyway, the requirement for language students may too high for him right now. He can’t write long essays. He can’t speak for lengthy periods, which is why he didn’t get higher grades at A-levels. The oral exams required him to talk for three solid minutes in Greek when he can’t even speak for two minutes at a time in his own language. Even if he lived at home and commuted to university, he could not cope with the pressure. It’s autism—you know, the disability he has. It gets in the way.


Here’s something else you may be thinking: If university is too hard for him and the LEA won’t fund him at the community college, why not pay for the course out of our own pocket?


A great idea. Here’s why: they wouldn’t let us. And when I found out that his Education, Heath and Care Plan meant he couldn’t just purchase education like any other private citizen, I went a little crazy inside.


And finally, you might be asking this: What does one’s ability to speak a foreign language have to do with one’s ability with IT?


A great question. I kept asking that. I was told he had to demonstrate that he was showing “stretch” and “progression.” Of course, taking a course in a subject you’ve never done before is showing stretch and progression but the LEA didn’t see it like that. They wanted him at Level 3 as a minimum. No matter how hard he tried, he couldn’t achieve Level 3. His teachers told me there was no chance. And while, they were happy to have him at Level 2 (other kids in his class were doing Level 2) they LEA would not agree. Because Nick had achieved Level 3 in two foreign languages, he was expect to study at Level 3 in IT. That was that.


I won’t bore you with all the events that transpired to enable Nick to stay in his course. They took days, weeks, phone calls to lawyers, meetings, assessments, and the kind of tenacity that wrings you dry.


More recently,  I’ve spent hours with Nick, pouring over textbooks and websites and blank screens at home in order to help him pass the course even at Level 2. It’s hard for him, but he’s doing it. He has remained in class. It’s worked out  reasonably well. But I am still recovering from the trauma of convincing the LEA to keep him there.


What do these kinds of events to a person over time? And now I am speaking of myself, not my son. What does it take from a person to have to constantly argue, cajole, convince, beg, and threaten? It is painful enough to have a child with autism, to watch as he struggles with things other children find easy, to know that the future is (at best) uncertain, to fear that at the time of your own death, your adult child will be in real danger. Must the people who are supposed to help thwart your every effort?


The woman at the LEA wrote long, horrible emails to me. I wrote long horrible emails back to her. She wanted him out of that classroom. I wanted him in.


I guess you can say I won, but it didn’t feel like winning.


How did it feel to this new young woman at the LEA to capitulate at last and allow a young man she has never met remain at a community college? It must gall her that he is now attending college against her will. It must anger her that someone with an A-level in French is doing a lower level course in Information Technology. Imagine how difficult it must be for her. Imagine how hard.


I bet she goes home at night and complains to her partner about parents like me: autism parents. Who do they think they are, standing up for their kids like that? Being willing to argue for as long as it takes, being willing to spend every waking hour, as though their whole lives are about helping their children?


Who are we? A significant minority, if we stick together.














The supreme art of war is to subdue the enemy without fighting — Sun Tzu


It started with The War For Talent, McKinsey’s 1997 announcement that the world of commerce was now at risk. With increasingly emotive language, McKinsey described a “severe and worsening shortage of the people” resulting in unfilled jobs, failed business objectives, skyrocketing compensations packages, and CEOs who could not sleep at night. All are vulnerable, they wrote in bold. And while it would be possible to win the war for talent, this could only happen if you “elevated talent management to a burning corporate priority.”


Did you hear that? Burning.


The problem was unlikely to resolve, not during the tenure of our working lives anyway. The forecast, grim and uncompromising, promised that “companies (were) about to be engaged in a war for senior executive talent that will remain a defining characteristic of their competitive landscape for decades to come.”


Why such an apocalypse? The reasons included a shortage of 35-44 year olds to replace the baby-boomers who were retiring, competition from smaller companies, and increased job mobility. Oh, there were people around, but not enough good people. Anyway, good was the enemy of great; good was the new bad. You had to get rid of good, explained Jim Collins in his 2001 book Good To Great; you had to rinse the cottage cheese (make tiny changes that add up). And you had to do it now. Don’t forget the sleepless CEOs, striving to heed Collins’ advice and get the best people on the bus. They could have fatigue-induced cardiac arrest—and who on earth would replace them?


Firing was as important as hiring. McKinsey was bold enough to state it outright: “Our research suggests that taking action to deal with poor performers is…the least exploited talent-building lever for any company.” Building talent through firing concentrates the talent, you see, increasing productivity of those remaining if only through necessity.


Letting go, constructive discharge, downsizing, there is no nice way to describe firing. But the important thing was to get rid of unwanted talent-blockers, even whole departments (blockages) through whatever legal means possible. Use velvet gloves; trot out executive coaches and outplacement advisors. Make a note that you have fired them so that you don’t accidentally re-hire them again in your effort to recruit the best talent. Rinse that cheese…


So how are we doing twenty years past McKinsey’s critical call to action? Is the war for talent over? It is, sort of. But all wars leave casualties. As Josh Bersin from Bersin of Deloitte explained, “The war for talent is over. The talent won.”


In case you are not aware, companies moved from the war for talent to a crusade for engagement. The word crusade sounds lofty, but it is important to remember that crusades are just wars with passion. In this new crusade, companies must become charismatic, irresistible magnets for the best people (not good, not even great anymore, but the best). Luckily, Deloitte can help a company become irresistible. After two years of research and discussions with hundreds of clients (where did they find the people to do this?) they uncovered five major elements and underlying strategies that makes organizations irresistible.


Compensation is part of it, sure. Breathe easy: you can still buy people. But salary is just “a hygiene factor”, not an “engagement factor.” You have to make the best and brightest happy, not clean. Work has to be self-directed, dynamic, creative, all the things we don’t normally associate with the word work. In fact, let’s not call it work anymore. Let’s call it mission.


How do we get people to join our mission? Of course, training and support, autonomy, “clear and transparent goals”, but you also need to create a “humanistic environment.” Admittedly, I don’t know what a humanistic environment is; Deloitte seems to have borrowed the term from studies run by dental schools, but I believe it means having respect and compassion for those around you.


Google’s idea, and one that could only come from this extraordinary thinktank, was to give engaged people time “to think, create, and rest” and, frankly, I’m already feeling the draw. But you can only give such time to the best people—those with passion and mission and purpose, those given to moments of brilliance and inspiration. There is no point in allowing people time to think if they can’t think. Those people have to go.


Luckily, automation is helping companies get rid of people who shouldn’t be given time to rest and think. Companies may still be losing the war for talent, but they are progressing on the firing front. Advancements in data allow companies to tag individual employees in various ways to predict whether they will be useful five or ten years down the road. Through a series of complex algorithms and predictive analytics, companies are able to sift through their mission-supporters and deselect those they wish to exclude from their flexible, person-centric, humanistic environments. With the removal of the good (enemy to great) and with a closely focussed digitally enhanced eye on the great, it is possible to clear the way for the best.


Or so we hope. Recently, McKinsey launched a new look at the war for talent (see The New War For Talent), explaining that many of the old problems haven’t gone away, and adding more challenges to the mix. It would seem that the talent is still not cooperating. The new soldiers on the talent-front are millennials and, according to Forbes, “Millennials don’t want jobs. They want lives.” If companies seek to recruit them, it isn’t enough to be irresistible and woo them. If you are lucky enough to succeed in wooing them, you have to convince them the whole enterprise is their idea. To that end, companies are striving to create an entrepreneurial culture, as 72% of millennials want to be their own boss.


What have all those managers and C-suite leaders actually achieved since 1997? Their expectations on employees were so high, their standards so rigid, their firing so efficient, they’ve convinced the new generation of talent to self-exclude. Maybe the talent didn’t want predictive analytics that value them one against the other. Maybe the talent preferred to make their own luck than be subject to constant evaluation. While recent graduates struggle to find any work at all, millennials are stepping away from opportunities. In an interview with McKinsey, Ann Robie, global head of Human Resources at StubHub said, “The future of talent is that people are not actually wanting to be employees.”


And so it evolves, as war often does. Perhaps we can no longer call it a “war for talent” or a “crusade for engagement.” The landscape has changed, the battleground no longer defined by its original architecture. What we see is that command control originates from the opposing side. We’ve reached the age of “talent at war”. Or talent@war, if you prefer. #NotInterested



Neurodiversity & Early Intervention



All human brains are similar in structure and function; it is the microscopic variation in how they connect internally, synapse to synapse, that defines our individuality and what we consider to be our “self.” What we hold in our imaginations, what thoughts are triggered by our senses, that make us uniquely ourselves.


In this way, we are defined not by our genes, but by our brains. To be sure, genes play their part, influencing the way our brains are formed and how we behave, but they are highly responsive to our environment and experiences. Even while we are in the womb, genetics are being affected by the way in which our mother is responding to her environment. Is she anxious? If so, we are likely to arrive in the world with a predisposition toward anxiety, ourselves, not necessarily because of genes but because of the endocrine processes that influenced our experience as a foetus. Is she hungry? Nutritional deprivation in the mother can create a child whose metabolism is so efficient that he or she can become obese far more easily than another child. The reason for this adaptation is that it enhances the likelihood that the offspring will thrive in the anticipated environment it is born. While the adaptation, called phenotypic plasticity, may be a manifestation of the human genome, our mothers experience was not.


We are all different, unique in small ways and large. These subtle distinctions among people in a population are sometimes described as “neurodiversity”. Neurodiversity is all about propensity and likelihood. The word seeks to embrace differences: intellectual strengths and weaknesses, various ways to respond to phenomenon, strong preferences, disparities in taste. It expresses the difference between me and my level of anxiety or happiness, for example, compared to you and your levels of anxiety or happiness.  In his 1987 book, Fears, Phobias and Rituals, Issac Marks likens the number of words in the English language that denote anxiety with the number of words the Inuit use for snow. Just as the Inuit encounter so much snow they have invented names for its many manifestations, we have done the same with our myriad representations of anxiety. The exact number of words that mean anxiety depends upon what you consider anxiety, of course. To give you some idea, Joseph LeDoux, a New York University neurologist who publishes extensively on emotions and the brain,  states in his 2017 book, Anxious, that there are three dozen English words that are synonyms or variants of “fear” and “anxiety”.


As anxiety is a significant feature in autism, let’s pause there for a moment. Freud saw some forms of anxiety as normal, manifested in  peculiarities or moods, while others were a source of mental illness,. Kierkegaard regarded it as both therapeutic and a sign of “some sort of disorder.” He writes that experiencing anxiety enhances one’s understanding of possibility and is part of a successful life.


It all depends on how much anxiety you have. It’s a spectrum, though not a linear one. I can be anxious about riding airplanes but not about riding horses. This makes no sense, nor does it show a degree, or depth, of overall anxiety that may or may not place me in the category of being an anxious person. If I have enough anxiety about a great variety of things, however, I might be considered an anxious person.


When might one’s anxiety require some kind of intervention? Perhaps Kierkegaard can tell us something there, too. LeDoux  acknowledges Kierkegaard’s belief that a well-adjusted person faces anxiety and moves ahead. In other words, anxiety isn’t pathological unless it stops you, limits you, keeps you managing your life successfully.  Maybe we should adopt the same notion.


We can look at depression in a similar way. Everybody gets depressed—how deep must a depression be before a person is considered ill with it? Those with serious, debilitating depression might get exasperated by those who say “I’m depressed” when what they really mean is that they are in a bad mood or disappointed or even just bored.  Of course, we know the difference between suicidal depression and someone who is having a bad day. But where is the point at which we can decide that a person who suffers a low mood on a regular basis is diagnosable as “depressed” or, to create a more global and apparently permanent description, that he is “a depressive”?


Fear, anxiety, low moods, even bouts of short-lived depression are perfectly normal. Would the notion of neurodiversity mean that even in their more extreme manifestations we must not seek to interfere with the progression of such conditions? Or would those of us who advocate we embrace a world that is accurately described as neurologically diverse understand that treating a person with anxiety or depression is not a judgement against, nor a damnation of, the people whose experiences of these conditions hinders them in life?


Now, I come to autism. Always to autism. Here is a word that has sometimes been used to mean a person who is “quirky”, who may be very focussed on a single subject to an extent that he or she finds it difficult to talk about anything else. This person—let’s say he is a teenager—may also have certain fears or anxieties. He may have lifestyle habits that differ from the norm. Perhaps he finds social situations awkward or confusing. Certain sounds, textures, lights, and levels of crowding may affect him. He may find school difficult, or find it hard to make friends. He could perhaps decide he is on the autistic spectrum. Or maybe his parents take him to a specialist and he gets a diagnosis of Aspergers Syndrome (back before the DSMV did away with the term).


This doesn’t mean the teenager has what I think of disability. The very dated word, disability, suggests “inability” and this person is not incapable of managing his life. He has some challenges but the scope of those challenges, however uncomfortable at times, may be balanced with other strengths that his particular, unique brain offers.


In his highly engaging and beautifully argued book, The Age of the Infovore, George Mason University economist Tyler Cowen suggests that autistic people who have a tendency to impose structure on data, may be at an advantage in today’s world with its increasing emphasis on information. He rightly states that there is a joy to organising information, whether you are autistic or not. He also argues that the notion that autism is necessarily an impairment is wrong. “There is a deeper approach that sets autistics into broader understanding of the human condition, namely as striving people who learn all sorts of wonderful things, know many kinds of joy, and experience tragedies large and small.” Who can argue with that? Just as Kierkegaard argued that experiencing anxiety was important in attaining success in life (“Whoever is educated by anxiety is educated by possibility”), Tyler argues that there are a great number of advantages for an individual with autism, and even more for society at large. His myriad examples of the way in which we have misunderstood neurodiversity, have prejudiced ourselves against a group of people, and have completely mischaracterised the way they think and feel, makes for stunning reading.


However, Tyler’s description of autism doesn’t entirely match that which I’ve experienced in my own life with my son, who was diagnosed at the age of three. My son had no language—verbal or otherwise. He did not respond to spoken language, not even his own name. He spun objects in front of his eyes and isolated himself. He was often unreachable, zoning out as though no one else was in the room. He cried a lot. He did not seem to be developing mentally or emotionally. He missed many significant developmental milestones. He was not “quirky”, in my view. He appeared to present something far more theatening to his future than an idiosyncratic brain function, or neurological difference. He seemed neurologically impaired, cognitively impaired.


There is no question that in my experience autism presents “a lot of problems and bad outcomes”, an expression that annoys thinkers like Tyler Cowen, who argue that understanding autism as a disorder is fundamentally misleading. Tyler writes, “If we define autism in terms of its problems, we will find it harder to understand how those problems come about, how to remedy them, and how to appreciate and build upon autistic strengths.” I cannot see the causal link between defining autism by its problems and preventing us from understanding, remedying, etc. I agree with him that defining autism by its problems creates an unfortunate social stigma and may demoralize parents and educators who would otherwise be willing to make an effort with their children with autism.  Too often, children with autism are excluded from schools, events, or social groups. My son was the one person in his Chinese language class in secondary school who was not invited on a trip to China. Why? Because they didn’t think they could ensure his safety—or so they said. He wasn’t invited and we didn’t argue. Why would I send my son to China with a group of people who didn’t want him there? You might wonder how we explained to him why he could not go. Sadly, we didn’t need to. He’d always assumed he would not be invited.


This isn’t an unusual situation. People are often wary of someone with autism. While I am happy to report that there are a great number of groups that  will include people like my son even though his is autistic, they will only do so as long as he can act like he is not autistic. That’s a bit of a trick. And Nick is considered “high functioning”. The reason we wanted him to go to China was because he speaks Mandarin. What chance would someone whose condition presents a more complicated picture? Who couldn’t speak at all? Tyler Cowen knows the answer, I’m afraid. As long as we “define autism in terms of impairments or failed outcomes” we end up using the “hammer of science to brand a group of people as ‘inferior’ as a preordained social consensus.”


He’s right. But these impairments are very serious. I would paint a very distorted picture if I only spoke of  the teenager with Aspergers who may find certain aspects of life difficult, but whose overall condition may be just as “normal” as any neurotypical person, if indeed we can use the term neurotypical.


There is also the autistic person who manifests more traits on the spectrum, including many of the complex ones associated with social and communication impairments and cognitive problems. The “autistic spectrum” is often presented in a linear manner, with the teenager being described as “very high functioning” while the second person is lower down the line. However, the spectrum charted in this linear fashion is not accurate.


Remember my description of anxiety—a person can be anxious about riding planes but not about riding horses. A person can be anxious about work but not about their appearance. These are trivial examples of manifestations of anxiety that may have real consequences in a person’s life, but do not render them generally anxious. Nor could we say which person is more anxious—the one worried about work or the one worried about planes.


Autism is much the same. We meet people with certain traits and others with very different traits. As Steve Shore of Sonrise program has said, “When you’ve met one autistic person, you’ve met one autistic person.” It is difficult to generalise. Even Temple Grandin, who famously described all autistic people as thinking in pictures, has retracted this generalisation, along with many others.


Tyler Cowen does a great job of showing the strengths of autistic people as thinkers and contributors to society, as well as the need to embrace neurodiversity. “Please do not talk about autism as if it is a broken arm, a defect to be repaired or destroyed and nothing but a plague upon the world,” he writes. I have been guilty of describing autism in exactly this way, seeing the manifestation of autism in my son whose development was arrested at an early age and who, by all appearances, was unable to learn. I saw autism as an impairment because it appeared to be so. Why couldn’t my son speak? Autism. Why wouldn’t he play with toys? Autism. Why didn’t he respond to any spoken or non-verbal language, even his own name? Autism. Why did he spin, rock, “self-stim” and disappear? Autism. It was hard not to see it as an impairment. When every other three-year old is speaking to their parents in sentences and you can’t get your son to notice you in a room, it certainly feels like an impairment.


For me, his lack of development was also a call to action. We embarked upon an intensive intervention of him because we couldn’t imagine his future if we did not. If we dared hope he might develop into an independent adult, it required us to teach him all the things he appeared unable to learn on his own—like language and communication, like play and physical activities (throwing a ball, jumping on a trampoline). Otherwise, he lied on at the carpet and moved trains or cars in front of his eyes. Should we have done nothing, instead, as an indication that we accepted him just as he was?


I don’t think so. When Tyler talks about those on the spectrum who have been described by researchers as having  weak executive function or “weak central coherence” as a subsection of a much larger group of autistic people, I recognise my son as part of that subsection. Had I not imposed upon him the incredibly intensive, exciting, demanding, exhausting education that helped him learn language and play and music and social skills, I think we’d be in a very different place right now. Or rather, he would be.


Can I both embrace autism as a “difference” while doing everything I can to lessen its negative aspects?  Maybe not. But it seemed to me that my son was entitled to an education and therefore I provided it. To decide not to intervene would have been  as much a manifestation of my own prejudices and assumptions as was the provision of an early education that gave him an opportunity of him to learn what “neurotypical” children learn. If there was a means by which I could enhance his language skills, why wouldn’t I intervene, and urgently, too?


So, how do I reconcile these two thing: embracing autism while simultaneously identifying what I judge as deficits and addressing them in the most positive, affirming way I can?


I’m not sure I have an answer other than to point out the obvious: that my son is not a thing, but a dynamic, living, evolving person. The phrase, “accept him as he is” assumes that he is a static being.


He has surprised us at every turn, not only in demonstrating an aptititude for learning that far surpassed anything we could have imagined at the time of his diagnosis, but by bringing into our lives his passions and enthusiasms, and for showing us that almost everything we once imagined about what it means to be autistic is wrong. Strangely enough, he and I still talk about language every day–how do you say, “I want to go to the museum” in Arabic, I ask him. “Can you look at this for me?” I say to him. “It’s in French and I cannot understand.”


Alfred Hitchcock And How To Teach Autistic Children



Alfred Hitchcock has something to tell us about educating children—I know that is hard to believe.  I learned that during the film-making process he worked off two scripts. He had the normal script, what he called the “blue script”, which included all the parts of an ordinary script: scene locations, dialogue, action, character names. But he also had a “green script”, and this was much different. The green script kept track of the emotional aspects of the film, what he wanted his viewers to feel as they watched the film. The logistics of the blue script—the action, props, setting, lighting and camera angles—could be changed, but the green script was more important. His focus was on how the viewers felt, whether those feelings were excitement, intrigue, fear or relief.


The emotions of a child are always what matters. As parents and teachers, we have to be focussed on the “green script.” Most children are born with a powerful desire to learn, a curiosity about the world, and a need to engage with everything within it. However, even with neurotypical children, our schools mostly fail to foster this natural curiosity. Among regular high school kids, some studies indicate that only 37% of kids are engaged in their subjects. This may seem like a digression from talking about autistic kids, but it isn’t really. Former Dean of the Ontario Institute for studies in Education, Michael Fullen, who advises policymakers and local leaders around the world to provide leadership in education, tells us the solution for education is “to be irresistibly engaging for students…”


If this is the case for a neurotypical child, it is a hundred times more so for one with a learning disability or autism. It makes no difference if a child learns to speak in sentences today or tomorrow, as long as he is progressing. It makes no difference if he learns to clap or sing or point or clap or sing, as long as he is moving toward a goal. But that goal isn’t really about speaking or pointing. It’s about the learning process itself, about influencing how the child with autism feels as a learner.


What matters is that he speaks because he has learned that speaking is fun, useful, and that he can do it. He points because he wants to share something. He repeats all these behaviours and comes back to learn more because he likes to learn and is enamored by the process.


I’m not arguing with anyone who wants to bring their children through all the important developmental milestones. I am not saying that pointing or speaking or counting or reading don’t matter—they do. I remember all too well what it was like to have a non-verbal child who couldn’t point or communicate in any way, screaming on the floor. It was sheer hell.


However, we don’t have to sacrifice the emotional side of learning in order to achieve specific outcomes. We really need to value the green script. It tells us that when we are teaching a behaviour—pointing for example—that the child must feel pleased with this pointing stuff, happy to comply, and enjoy it so much he or she will want to point in the future. Let’s start with pointing for an object he wants but that he cannot reach. Let’s move onto him pointing to share information. This is all good, but only if he feels great about pointing, great about the person who is teaching him, and great about learning.


So, there are really three scripts here. What he learns, how he feels about the people with whom he is learning, and how he feels as a learner.


Every time I work with my son Nick—and this has been going on over a dozen years now—I think about the process of his learning. The process is the most important thing. If he feels confident and curious as a learner, he will carry on learning years after I am gone. This is what matters to me.


I am looking for signs of stress because if he is getting stressed he is not learning. Stressed adults don’t learn well, and for children it is even more profound. If a child feels threatened or worried it affects her ability to learn the thing in front of her, and plowing on regardless will inform her future response to the process of learning, itself. Oh, she will still learn. But she will learn to fear the situation (the people and setting and materials at hand), and not much else.


Not all stress is bad. Writing on the Johns Hopkins School of Education website, Victoria Tennant says, “Stress is positive when the person feels stimulated and able to manage the situation. This positive response prepares the body for action and activates the higher thinking centers of the brain. A positive response to stress can provide the energy to handle emergencies, meet challenges, and excel.”


All of us love a little stress—especially kids. They often like mildly scary movies or short rides at theme parks that whizz them up or spin around. My son loves electronic games which create a world of threat around the player who is trying to survive. I asked him just now why he likes them so much and he said it helps his focus and attention.


I can remember all those years ago when I would ask him a question without a specific rote answer and hope he could say anything, even “I don’t know”, which had to be taught to him like everything else until he fell in love with learning.


But back to stress. Ongoing stress, especially in what is supposed to be a learning environment, creates poor learners of children. For autistic children, stress can switch them off so fast that an entire teaching session is lost. Repeat that stress, and their relationship to learning and to the people who insist upon it will be seriously damaged.


This is why any interaction with children in education has to be positive. Goals have to be attainable; success has to be ensured. There is no place for coercion or intimidation with children—they will only learn to avoid teachers and anything they associate with a soured experience of learning. For children with autism the stakes are higher. They need skills that they cannot access without help, so that help—in the form of parents, teachers or therapists—has to come with positive feelings.


Those who criticise the use of applied behaviour analysis (ABA) do so because they imagine it is coercive or very boring. It can be. So can all teaching. Years ago, I spent a morning in my daughter’s year 2 primary class. The kids were treated as though they were little criminals under gag orders. Their only hope of getting through the day without being criticized or humiliated was to say nothing “out of turn.” One cannot imagine twenty-five adults in a room “being taught” and saying nothing (no movement, no goofing off) for hours on end, yet this was expected of seven-year olds.


It was appalling. I removed her from the school the next day and home-schooled her for a couple of years before starting her again elsewhere. She’s now a very high-achieving young adult, despite a poor start at what amounted to a contemporary example of Victoria schooling.


I couldn’t take such chances with my son. Had I seen ABA being “administered” in a manner that upset him, I would have stopped it immediately. But this wasn’t what happened. Instead, we kept one eye on the blue script—what he really needed to learn—and one eye on the green script—what we wanted him to be feeling while learning.


And now he loves to learn, which is a good thing because it is clear that life-long learning is going to be vital for all of us as our society moves ever more swiftly. And because, even at the age of twenty, he is forever catching up.


I will never forget begging a committee at his high school to let him study at A-level, trying not to cry as I explained that while he wasn’t necessarily A-level “material” he loved his chosen subjects and ought to be allowed to continue. They stubbornly insisted that he couldn’t get an A-C grade and that he wasn’t welcome to continue. I   became increasingly exasperated with the notion that the anticipated grade should be the criteria by which they made their decision whether he could continue. Finally, I told the committee that if they won’t allow him to study any longer at his own school, they would have to tell him that news, because I would not.


In the end, they allowed him to study after all. He later achieved a total of two A-levels and four additional GCSEs, some of them A’s, some of them C’s. He loves to learn, and believes he can learn. This is what we need for all kids–especially those with autism, who cannot afford to ever stop learning, and for whom the world of things, people and ideas must be imagined as a place to understand with joy, not a threat to be avoided.






Autism: Say Hello to Grandma & Other Things I didn’t Teach my Child with ASD


You have to hand it to kids with autism: they won’t tolerate being bored. From early in life my son made it clear that if a person wasn’t interesting, he would disregard them. Visitors arrived to the house but he stayed where he was on the floor, pressing his thumb into the carpet, swiping a train in front of his eyes. If someone said hello to him he might look up. But if the greeting was followed by nothing particularly interesting, he saw no reason to stand up, say hello, much less smile.


Oh, I could get him to do so, of course. I could walk over to him, take him by the hand, lead him toward the visitor. He was a particularly compliant kid for one with autism. Once he was able to speak, I could even encourage him into a greeting. “Say, hello!” I’d instruct. “Hello,” he’d say, flatly.


But that was just a prompted greeting with nothing to encourage him to repeat the behaviour. He didn’t want to say hello. He wasn’t invested in it.


In a neurotypical child, working through a rote response might cause him or her to feel dutiful or grown up. It might  encourage the habit of social greetings, in fact, as the child learns there are social benefits to being polite.


But rote social greetings didn’t do much for Nick. Not at first, anyway. At that time there was no social benefit, you see. He didn’t really care.


Sand running through a glass timer was interesting. Certain shapes—in my son’s case, circles—were interesting. He collected coins, bottle caps, checker pieces, buttons. You’d find tiddlywinks and milk bottle tops bingo markers hidden under the bed. He’d throw all these things in the air, collect them back up, throw them again. It delighted him, but he didn’t share the delight with anyone else. He didn’t say, “Look at this!” He didn’t say anything, in fact, because he couldn’t. However, not even his non-verbal communication invited me.


He should be interested in people, we were told. That is what is wrong with him. I agree he should have been interested in people, but those who were monitoring the extent of his autism and everything else about him were wrong to imagine he wasn’t interested in people. His threshold for what made them interesting was just very high. People had to do something to be interesting. They had to do more than just be.


I’ll give you an example. Back to his grandparents…they would arrive to the door. First, they would greet their own son (my husband), then me, then our daughter, and finally Nick. There was no changing this, by the way. The grandparents were more rigid than my autistic child. If I tried to persuade them to say hello to Nick, to get down on his level, to think of something rewarding to associate with their arrival, they looked at me as though I was being rude. Grandparents were to be respected, not instructed.


They wanted Nick to wait a reasonable amount of time it took them to get inside and speak the adults before turning to a child. That was how it was done. That fact that his attention span was about five seconds, after which he lost interest, was something he needed to learn to expand. And had he been neurotypical, he would have expanded it. Or he would have called out to be heard, ran up and hugged his grandparents, bursting through whatever barrier existed in order to get the attention he craved.


But he did none of this. The value of the interaction was so low that he walked away.


Once the grandparents settled down in the living room with their tea and their talk, they may as well have been pieces of furniture they were so boring. He didn’t want to show them his toys like our daughter did. He didn’t want to show them his drawings or the clay model he made or the award he won at school. It wasn’t simply because he didn’t draw or sculpt or win any awards in school. He didn’t seek their praise because it didn’t really matter to him (though I must add that it would very much matter in later years).


Anyway, he had stuff to do. We called his flapping his hands and strange ways of looking at objects close up to his eyes “stimming.” He might have called it “fun.” Anyway, he had to do something with his time, right? And before we started the constant social stimulation and learning through a play-based ABA programme, he didn’t have the imagination to go beyond very simple means of occupying himself.


Sometimes, he didn’t seem to be doing anything. He would zone out entirely, staring into space with such apparent disregard to those around him that the head teacher in my daughter’s primary school once remarked that “there didn’t seem to be a lot going on.”
Maybe there wasn’t. He was autistic. Not “high-functioning” either, not yet. He would grow into the HF label, but that took a year or two of hard work. Hard for him, because learning was quite difficult for him (at first). Hard for us because we had to be super fun and engaging, proving him to him over and again that interacting with people was worth it.


I keep hearing people who dislike applied behaviour analysis (ABA) as a teaching tool for autistic children because it is “dehumanising” or doesn’t take into account the way the child feels. But that was not how we were taught to teach our own child even seventeen years ago, when we began. We were always looking for how Nick felt as a learner, as a beloved child, as a person who is deserving of respect and care, but also deserving of an education.


We had to somehow persuade our son that people were fun, that learning was fun, that communication was fun. We had to convince him that experiences were always enhanced in the company of another, that games were best when shared. Did it work? Hell, yes, it worked. He loves being around people–the problem we have is that there aren’t that many kids his age who really want to be around him. He even shares computer games. “Hey, it’s your turn, Dad,” he now says, passing his father an electronic game of Scrabble on his iphone. He doesn’t want to play by himself.




Why You Shouldn’t Wait For An Autism Diagnosis


My son was diagnosed with autism early here in the United Kingdom, where the current wait for an assessment for autism is over two years. In fact, Network Autism recently published an article indicating parents “tended to wait around 3½ years before receiving an autism diagnosis for their child.”


Our appointment at the now-defunct Battle Hospital in Reading was pushed forward because I’d embarked on a programme of early intervention with Nick, something the health authority in my area felt was egregious and unethical. It turned out that if you began teaching your child as though he was autistic without the actual diagnosis, it triggered alarm bells in the system. That isn’t a reason in itself to embark in a programme, but some parents currently enduring that two year wait might want to go ahead and embark on a programme of early intervention before the diagnosis. Why?


Because teaching your child is always a good thing. And because, in my experience, it can sufficiently annoy people that they bring the diagnosis forward so that they can apply their own notions of therapy.


Beware, however. Their good ideas may not be any better than your own. In fact, they may not have any good ideas at all.


I am often asked what we did for Nick in those early years. The combination of interventions we used fall generally under the category of Applied Behaviour Analysis. In short, ABA doesn’t ask what caused the autism. It is in direct opposition with the psychodynamic approach, which seems to me wholly inappropriate (if not scandalous) for young children with autism, though that is for another blog.


ABA looks at how to address all the deficits a child with autism has, whether those deficits are in attention, social interraction, language, play, or in how to use their body. It should NEVER use coercion or intimidation or “aversives” (punishment). The skill of a good therapist is in making the learning experience fun, not frustrating. Done well, it’s fantastic.


Most people think of ABA as drills. (“Touch the table.” “Well done.” “Touch the table.”) That is not how ABA is done—not in my house and not in any of the houses of parents I know who have embarked on such programmes. These days, good ABA is wildly imaginative, “out-of-the-box” therapy in which a person with a whole lot of knowledge of normal child development escorts a young child 1:1 through the milestones he or she has missed. You’ll know if it is good ABA because a child will love it. If he or she does not, fire everyone involved (and get retrained yourself).



In some ways, ABA is just like any parenting and coaching—just better, more informed, and with more of an eye on how our child was feeling during the learning process. My husband, our therapist, and I even used ABA to teach Nick how to ride a bike, for example. We did this not because riding a bike is essential to a child but because the balance and coordination required is very useful. We also hoped that he’d like it, once he “got it”.


It took a long time. We nearly collapsed with exhaustion on several occasions. However, Nick learned and he now rides his bike with the same ease as anyone else. How did we do this? We looked for external rewards (the bike was not at first intrinsically rewarding as it is with a neurotypical child) to incorporate into the process of bike riding. We formed a large cheering squad of well-wishers (or at least three of us) . We did it with patience and fun,  and with a view to how he was feeling throughout the “lesson.” Same as everything else we taught him, frankly.


But you won’t start with a bike. You may start with trying to get the child to notice you in the room. And the people who are supposed to help you (the diagnosing paediatrician? The health authority? The local education authority? Someone? Anyone?) probably won’t help you, though please let me know otherwise if you have a good experience because I would be thrilled to hear it!


If you are in the UK, think about giving the people at Child Autism a ring. I visited them back when they were called PEACH and Nick couldn’t talk or play or interact with anyone except me (and usually only to sit on me).


They helped me. I didn’t use any particular programme they were selling, but I did get a lot of encouragement. Their reading list is good on its own (though they might want to include the novel, Daniel Isn’t Talking, if only for inspiration).


You can check out an entire youtube channel from the Autism Behavioural Intervention Association to watch ABA in action with autistic children. I cannot tell you how much I wish I’d had this resource as a young mother.


Are these therapists perfect? No. Sometimes, they concentrate too much on discreet trials. Sometimes they are too verbal for the child with autism. They can forget to reward non-verbal communication or fail to wait long enough for a child to work something out. They are humans, after all, and they are on camera. But most of them are good. Very good. If you watch them you, as a parent, you will learn. And even if you don’t “do ABA right”, your child will learn, too.


Here is another reason not to wait for the diagnosis to start teaching your young child with autism: the diagnosis isn’t initially all that helpful.


For us, the diagnosis was a gruelling two hour procedure during which they tested our three-year old in various ways which were entirely ridiculous as he wasn’t paying attention anyway. They probably knew he was autistic in the first two minutes but went ahead and tested him for other, additional deficits. I really don’t know what they were doing, other than satisfying themselves that he was an uneducable timebomb that would grow into a somewhat dangerous member of the family from whom we’d need to protect our other child.


Why do I believe they thought that? Because they told me so.They said Nick’s IQ was low, that if he developed any verbal language at all it would be purely functional. They said only kids with Aspergers have any hope of higher education.  Concentrate on my normal child, they advised, as though Nick were already a lost cause.


They also told me using applied behaviour analysis to help him would mean I trained him to ape the development of a neurotypical child, ignoring the fact he had a permanent, insurmountable disability that required the sensitive handling of one of their own professionals. They were wrong about all of this—time has proven as much.


Luckily, I am a tenacious, hard-headed, opinionated woman. I was even back then in my early thirties. While they were assessing Nick,  I was assessing them. I decided they had no ongoing interest in helping children with autism. The paediatrician was there to sort through children, discarding some, referring others. Nick was pretty much on the discard pile. Even in his best Winnie-the-Pooh jumper and shiny Clark’s shoes.


“Research shows ABA works,” I told them. “If you embark on an intensive programme and generalise what the child learns into lots of environments—”


They disagreed. They’d done their own research. It didn’t work. I might have considered one of their own professionals but they had no one available—and nothing was on offer except possibly a place for Nick in a special school nursery within the next six months. Ah, a special school nursery! Surely, that would help him, right?


Wrong. They didn’t really have great ambitions to help Nick. They wanted him to interact with other children, but those children had to be autistic, too, because Nick was autistic. Nursery school wasn’t really school and it wasn’t really play. It was just a place to put these kids.


Was “autistic” some special social group, a subset of society that required their own closed quarters? If he interacted with another child (which was unlikely at that time) and the other child didn’t respond (very likely), how did that help Nick?


It didn’t. It helped the local education authority tick a box or complete a file. Maybe they thought they were doing me a great favour by relieving me of my awkward child for a few hours a day. Who knows what it helped. Not my son, who needed help urgently, who was now missing milestones at a rate of knots even with the ABA (because neurotypical children develop faster than autistic kids playing catch-up), and whose social isolation and remoteness from the family had been decreasing since we began the intervention.


Which brings me to my third reason not to wait for a diagnosis: you don’t have the time. Your child doesn’t have the time. The brain remains plastic for his (or her) entire life, but the best time to encourage learning and to improve your child’s relationship and access to learning is as early as possible.
I carried on with the ABA. The local authority hated me, the wretched special needs coordinator hated me, a whole host of speech therapists who never taught him anything but arrived every few months to audit his progress, hated me. Or maybe not “hate”. They resented me and talked about me and disapproved of me and discouraged me.


Eventually, I began to hate them back. We’d squabble over little things. The special ed coordinator wanted me to teach him to communicate using PECS (picture exchange communication system) instead of words, even though he’d been picking up sounds and trying to make words since we began ABA.


“Why should he use pictures when he can talk?” I asked.

“PECS are very useful.”

“So is language.”

“PECS are language.”

She was right about that. PECS are a form of language. So is sign. So is screaming on the floor. But I like words.

“I mean verbal language,” I said.

“Why is it so important that he talk?” she demanded.

“Because he can.”

Did I need another reason?


Clearly, I was insane to teach this child through ABA when I was not a teaching professional nor a psychologist. I hired private ABA specialists (a couple of whom also hated me, but that is another story) and had them teach me what to do. I kept records and when Nick’s proress was so fast that the record-keeping became onerous, I dropped that.


By age 4 (1 year from being non-verbal), he was regularly speaking in sentences of 5-10 words. By then, I’d hired teenagers and was training them to interact with him for an hour or two at a time so I could have a break. We had a 4th birthday party, all those young therapists and Nick. He stood on the chair and blew out the candles. He smiled at all of them.


There were no children present. I wanted him to have friends—of course, I did. But what could I do? Other parents mostly avoided me just in case I asked if their child would like to come over to play or go out to an event with us. Nobody wanted to hang out with me. Why wasn’t my child in special school anyway? What was wrong with me? Was I in denial?


Yes, I was in denial. Or maybe I can beef up the description and say I had vision. If you are going to embark on a many-years project without any support from anybody you aren’t directly paying, you better have vision.


I remember that nursery at the hospital. We saw it on the winter morning in December when he received his diagnosis. Through the window on the door, under the laboratory-style lights that hummed rom the ceiling, there it was: a chaotic room of clearly very unwell children. Neorological abnormalities, chromosome abnormalities, bizarre ways of moving and standing. They weren’t playing or interacting with each other, but moved around one another a bit like how Richard Feynman describes atoms moving, like little particles “in perpetual motion, attracting each other when they are a little distance apart, but repelling upon being squeezed into one another.”


Any one of those children on their own would have presented a teacher or therapist with a world of possibilities and hope. Crowded together in the awful classroom on the ground floor of the hospital, they seemed doomed. How many months would go by before their parents moved them to yet another room? Then another? And at what point would these parents cotton onto the fact nobody was actually going to try to do very much for their child? They couldn’t, you see. There were too many of them. Anyway, it was more important to accept their condition, wasn’t it? Much better to accept it than improve upon it?


Not for me. All neurological conditions are very serious but some are far more profound. I know there are conditions about which I could do nothing. However, it seemed to me that to agree with the special ed people and the grossly incompetent paediatrician that Nick’s condition was already a done deal, that no significant progress could be made, was an assumption with little scientific backing. Yes, he was a non-verbal three-year old who swiped trains in front of his eyes instead of rolling them across the floor, who flapped his hands instead of waving, and who did not respond to a single word I said—not even his name. But he was only 3-years old. I could accept he was autistic, but not uneducable.


I didn’t wait for a diagnosis. When it arrived, I didn’t follow the advice of those who gave it. I am not telling any other parent how to raise their child. But what I will say is that in my experience, dedicated parents who teach their children are the best teachers around. You can do this—you may not see your child develop so well that he or she loses the diagnosis of autism (though I have seen this in some children). I’m not sure that should ever be a goal, as many autism traits are really quite useful if they aren’t accompanied by all sorts of impairments often associated with the condition.


However, in my experience a child with autism who is engaged and communicative is a far happier adult, with far more possibilities for his future.