‘Look, Billy, moss!’

‘Look,’ said Billy.

And after he had sunk his baby fingers into it, Eve said, ‘Soft, huh? Just like your cushion.’

That smell, she might say, was skunk cabbages flowering in the damp ground. And that whistling sound in the maple was a robin singing. The bird sang, cheerily, cheer up, cheer up, cheerily, cheer up.

He listened attentively. He smiled and giggled and responded to everything around him.

But within weeks, at home or outside, Billy altered. The change announced itself by a gradual silencing. Billy was losing words.

Perhaps it was all in her head. She’d misheard. But no, it wasn’t, she hadn’t. Well then, he was losing them momentarily, to a bad mood or a head cold. So he’d swallowed ‘cookie’ and dropped his ‘cup’ and mislaid his ‘car’. Any day now he would utter them again, and others besides.

Only, once lost, the words never returned. ‘Milk’ and ‘hi’ and ‘thank you’ and ‘all gone’.

He was assessed twice.

The doctor at Massachusetts General Hospital, all starch and stethoscope, couldn’t find anything wrong. Billy’s ears were fine, his coordination was fine. He knew as well as any two-year-old how to get a cookie out of his mother.

‘He’s not what you think,’ the doctor said, when Eve raised the possibility of autism. He sounded very sure of himself.

Eve didn’t know what to think.

A slow developer, people said, boys sometimes are. Give him a bit more time to straighten out. More time didn’t help. What bothered Eve as much as the missing words, or more, was that Billy wasn’t his grinning, charming self. He didn’t react when she cooed; and, sometimes, as she went to touch him he made an angry sound, shrilling. Then she sat beside him and felt the rawness of his senses, the absence of language’s second skin as he retreated from her, as if he had been stung.

Dr Margaret Bauman was different from her colleague. The first doctor had spoken too quickly, she said. Billy’s symptoms were consistent with autism. Eve tried her best to listen as Dr Bauman explained. A developmental disorder of brain function, not a disease. Certain features become apparent over time, notably delayed use or absence of language. Intelligence on nonverbal tests may be in the normal or above-normal range. A condition of constant ups and downs, setbacks are common. Until that instant, Eve believed she had prepared herself to hear what the doctor was telling her.

Afterwards, while Billy slept in the car, she drove the long way back to the house. She could cry with abandon here, her crying swallowed up by the noises of the road. She could feel a strange gratitude for the orange cones, the construction work, that delayed her.

She was afraid. There had been some talk of an institution. A chill passed through her as she pictured her son imprisoned within himself, left to his own panic and confusion in the dark corner of a room.

Autism. Neurodevelopmental. A child quiet and withdrawn described as being ‘on the spectrum’. Words later widely heard and spoken, but which sounded obscure in 1992, muffled within the heavy covers of manuals bearing forbidding titles, in closeddoor conferences for specialists only, in reams of journal paper in German or jargon equally impenetrable.

She did not know the first thing about autism (or only the first, not the second or third). She remembered a movie she had seen, not the recent Rainman starring Dustin Hoffman, but an old French film in black and white. L’Enfant sauvage by François Truffaut. When had that been? During her college days at Chapel Hill. She would sometimes go to the little arts cinema there which showed pictures from Europe. Fellini. Bergman. The French new wave.

It was the boy in the film, the ‘wild child’, that Eve remembered, an infant abandoned to the woods of revolutionary France and whom a doctor, several years later, takes in. Her eyes would not leave the boy as the doctor tried teaching him to dress, sit in a chair, hold a spoon. No subtitles came up when the boy’s sensitive face filled the screen, because he never would learn to speak. Too late. Too late for language.

The child’s awful silence was the true star of these scenes, it seemed to Eve, a character in its own right, a baddie upstaging the youngster and drowning out all his lines. ‘All ears on me,’ the Silence cried. ‘Fear me and shudder for the boy.’

Reading the newspapers – articles Eve would have previously skipped or skimmed – was enough to endorse a mother’s worst fears. Two autistic pupils in Japan had died of heat prostration after their principal locked them in a windowless storage shed for two days. ‘Strange and disquieting’ was how a report in the Washington Post described a group of autistic children.

And then a fierce determination succeeded her initial shock, a craving for facts, knowledge, understanding. Hardly an hour now passed, half an hour, a quarter, without her thinking about Billy, and every spare minute not spent on calls from her siblings, or parents – how are you all holding up, Evie? – went into driving to and from, and combing through, bookstores, then returning home with the wares to read. None of the refrigerator mothers rubbish that you could still find then on certain shelves. Instead, Temple Grandin and Oliver Sacks. (How well, how thoughtfully, he could write about his subjects, and then, in the pages that interested Eve, how cruelly. One passage compared two autistic men, twins, to pantomime puppets.)

But there is hope, she thought, when she read about Clara Park and her daughter Elly. This was an old book, an expanded, updated reprint of Clara’s memoir of Elly’s early years, The Siege, which had first been published in the sixties. Eve had been drawn to the cover, the black-and-white photo showing a small child with fair hair and eloquent eyes, the mother looking through thick glasses at her offspring, protective and professorial. Elly’s parents were both academics in Williamstown. Eve recognised the name – Williamstown is on the western side of Massachusetts (her own family lives on the eastern side). Like Billy, Elly had grown more or less silent by the age of two, devoting herself to her senses to the exclusion of people, playing by herself in ways that quickly became repetitive. But the Parks had not despaired. They had taken Elly to England, London, to 21 Maresfield Gardens and the Hampstead Clinic where they had received no end of reviving encouragement. Their efforts during their year in England, and then back in the US, to play and play and play with their daughter, in competition with her inwardness, to school and to stimulate her with pictures and gestures, signs and words, had been enormous. They would be compensated. Elly would grow more responsive, to the point of finally recovering her speech (though never speaking with much fluency). By the end of the book, Elly was a young woman who painted houses (that is, she painted beautiful, multicoloured pictures of houses she saw), and was holding down a job as a part-time mail clerk. She still lived with her parents, requiring constant care and supervision, and always would.

The last word in the book, in Elly’s story, was ‘love’.

Eve read its pages several times, though she knew it would not be sensible to get her hopes up too much. Billy wasn’t Elly. His name wasn’t in a book.

Outside the family circle she shared next to nothing about Billy, her thoughts and cares turned towards her son and home, her hope hugged tight.

Word would get out, though. It was only a matter of time. Soon neighbours would stop her in the street, or turn away, embarrassed, as she passed. The nosiest might sneak looks of commiseration at her son. How could she show her face in church? They would all crowd around, get in her way and on her nerves, the well-intentioned pity in their voices, saying, ‘So sorry for you and Matt,’ ‘anything we can possibly do,’ ‘he’s still your son,’ and the furrows across their brows, aiming for solemn. She didn’t want to be asked again and again how Billy was doing, or what the doctors had said or which treatments might be undertaken.

She put on her best face and let no one see a thing. She continued favouring clothes that flattered, making the most of her thick curls, wearing earrings that caught and dispersed the light as they dangled. Creams and powder masked the angry red blotches that invaded her cheeks and nose and forehead – the months of stress and anguish catching up with her.

Therapists. Special educators. After Dr Bauman, she consulted widely. She canvassed their views, opinions, advice. She asked them to help her help Billy learn to tie his shoes, recognise words and, why not, use a computer one day – it being the nineties and everything. The specialists listened. They leaned back in their chairs then forward and said she should lower her expectations. They said this as if she had suggested something outlandish. Tie his shoes? Velcro would do the job.

Eve persevered. She asked what she might do to support her son more generally. What did she mean? She meant help him learn to communicate so as to be a full member of the family and society. And grow into a thoughtful, attentive young man. The specialists shook their heads. Hadn’t her doctor explained what Billy’s condition entailed? He would probably never learn to speak. Not speak, she said. She hadn’t said learn to speak. Communicate. Surely Billy could be taught in some other way to communicate his needs, wishes, thoughts.

What thoughts? asked the specialists.

Their goal was to teach him to comply, she was told.

Anger and surprise took turns inside her. But why was she surprised? It wasn’t like she had been born yesterday; she had met this attitude before, most often in men. ‘You’ve got me all wrong,’ she wanted to say. ‘Me and my son.’ She feared they were making a naive fool of her, one of those deluded women who blindly swears her child can do anything; why couldn’t they see that she was for real? Imperfect, like any mother, she would allow, but always serious. And stubborn. Excuse her if she didn’t bow down at once and truckle to their cold-eyed pessimism.

Family lore said Eve had always been something of a rebel. Her aunts liked to repeat the story of the time long ago when she and her sisters had stayed at Grandma Edwards’. The grandma could be stern, and she and Eve, who must have been nine or ten, hadn’t seen eye to eye. Eve told her sisters, who had just received a scolding, to pick up their things and follow her. Chin held high, she escorted the sisters several blocks to the bus stop, put them and herself on the next bus, and rode home.

So before the specialists were even done saying all that her son would likely never learn to do or be, Eve had determined to prove them wrong. Big time.

✲

I listen to Eve Megargel in Framingham as she gives her keynote and am glad I found her name. I have a fairly good view of her from where I’m sitting. She can’t see me, though, not at all, even were she to scan every audience member at the back; I’m sitting further away still from the stage, five years away in the future, not to mention the little thing of the Atlantic Ocean between us.

Time and space concertinaed. The Internet can be wonderful like that. I close the video and send Eve an email asking whether she’d have some time to answer my questions. I tell her I’d like to write about them: her and her now adult son Billy. I don’t tell her about my writer’s block. A book has been waiting in my head for me to wrap up years of research, assume my ambitions, and commit it to paper. It is a collection of stories, real-life narratives that will explore the neurodiverse experience from many angles, with scenes and themes whose success will depend on my finding, for each story, the right form and face and voice.

After an exchange of messages, Eve and I find dates in our diaries to video-call regularly. Which we do over several months.

I watch home movie footage of Billy at three, six–seven, at ten, as a teen and young adult.

I learn all about electronic augmentative and alternative communication systems.

I feel words quicken and travel inside me, to the tips of my grateful, typing fingers.

The rest is this story.

I haven’t any idea whether Eve knows very much about me, whether she has read any of my books, whether she sees any of Billy’s autism in mine. I’m drawn to his experiences partly because they are so different.

I live by words, make my living from them, but sentences and syntax – as we define these traditionally – do not belong in Billy’s language. His way of thinking and feeling and perceiving bypasses words. This inarticulacy has nothing to do with any lack of intelligence or curiosity or the desire to reach out to others. It has to do with an inner world that is pictorial, musical, and the many meanings he is able to find in shape, colour, motion, tone and rhythm.

Chess players, those with a facility for the game, access their own inner world – the chequered board and its pieces – somewhat like this. Not like a beginner, who loses himself in internal monologues as he contemplates the next moves; his patzer’s prolixity – bishop up a row, take, take, if knight goes there, castle – is more muddling than enlightening.

In bright tensions, lines of pure energy, structures – that is how the grandmaster thinks.

✲

‘They just don’t get it,’ said Eve, one Sunday afternoon when her parents were over for lunch. By ‘they’ she meant some of the staff at Billy’s school. ‘I take Billy’s device in to show the teacher and she’s like, “What’s the point? Look at all those buttons. He won’t know how to use this.” Trust me, he does. Just give him some encouragement. Then she goes, “Perhaps you think he does but anyways we don’t go in much for these gadgets in class.” Well, then, I say, I guess there’s no time like the present to change that. “Mrs Megargel, we hear you.” I’m not sure you do hear me. “We absolutely do.” So I bite my tongue and I say to her, please do as I ask. Let Billy have his device with him in lessons. It’s on her desk. She picks it up like it’s mega heavy and it isn’t heavy at all. “Okay, we’ll give it a try,” she says. “No promises, but we’ll give it a try.” Hallelujah!’

Come what may, the world could be sure of one thing: she would never give up on her son. She did not know the meaning of ‘give up on her son’. He was their ward, hers and Matt’s, would always be; anyone who imagined her beat and dejected couldn’t be more mistaken. He would not be shoved to the margins, his potential left to moulder until it vanished – she would not allow it.