Relief and reality

Relief might sound like a strange response to the news that your child has a lifelong, potentially debilitating condition for which there is no cure. But that was exactly how Magteld and I reacted to the news. It was as if we had been fumbling around in a darkened room for four years and suddenly somebody had switched on the lights. We understood for the first time what we were dealing with.

There is widespread resistance among teachers and carers towards labelling people, particularly when it involves young children. The sentiment is well meant, and in the sense that it's a reaction towards the historic tendency to define people by their limitations rather than their capabilities it's well founded. But as Clare Sainsbury, who has Asperger's Syndrome, comments in her excellent book Martian in the Playground, "someone with undiagnosed Asperger's still has Asperger's" (the difference between autism and Asperger's is hazy, and most professionals seem to treat the two as different manifestations of the same condition). For us, a label wasn't a branding iron but a key to understanding Euan's behaviour.

When the nursery first raised the subject, autism was one of the first things that cropped up in our minds. We considered it, and dismissed it. We were aided in our denial by well-meaning friends and relatives who reassured us that Euan couldn't be autistic because he was obviously intelligent, or remarked that he was just a happy, self-sufficient little boy. Neither of these, as I now know, precludes autism.

As perverse as it sounds, it was easier to deny the truth and look for some deficiency in our child-raising techniques than to accept the reality of having to care for an autistic child. Magteld and I blamed ourselves and blamed each other; we tried to shake Euan out of his entrenched routines and his closed world, sometimes literally. We waited with growing impatience for his speech to catch up with other children of his age. We felt ashamed every time an adult spoke to Euan and he looked up at them blankly, or when we watched him at birthday parties, standing mutely at the side of the room or absorbing himself in the workings of the CD player while other children joined in pass the parcel. His interests became obsessions, sometimes built around intricate and meticulous routines, and any attempt to divert from them triggered a storm of protest. The plain truth is, we barely knew our own son.

When I say that autism is incurable, I don't mean in the sense that science and technology haven't quite round to overriding its effects, and it's just a matter of waiting. My belief is that autism is incurable because one cannot simply isolate and remove the autistic element from someone's neurological system. For an autistic person, autism is their system. It can be managed and alleviated, but never "cured". For this reason, having the right label is crucial to our chances of bringing up Euan successfully.

First reaction

The first person to use the word autism in connection with Euan was his speech and language therapist. I will never forget driving to the clinic to pick him and Magteld up after his first session. Magteld came out clutching Euan in one hand and a blue folder in the other, wearing that special smile she reserves for awkward social occasions.
When she got into the car I saw the words "autistic spectrum disorder" on the cover of the folder. She told me later she had burst into tears when the therapist raised the possibility at the end of the one-hour session that Euan might be autistic. At the time, all I could feel was a numb sense of bewilderment.
What are the emotions that autism gives rise to in the family of an autistic child?
There is, first of all, an overriding sense of fear. A fear of not being able to cope. A fear of not knowing what to expect. A fear that your child might go through their whole lives as a kind of alien, unable to comprehend the basic social functions of life. A magnified fear of failure: think of the anxiety all parents have that they might not be up to the task of equipping their child for adulthood, and multiply it by 100. A fear that your child might never be able to live independently of you, and a fear that there might be no-one to look after them once you're gone. A fear, all in all, of the unknown, in your life and in theirs.
There is also grief - specifically, what Magteld calls grieving for the child we wanted Euan to be. When Euan was a baby, we looked forward to watching him thrive and flourish as he trod the familiar path of childhood: walking, talking, inquiring, challenging, reasoning, understanding. Then, somewhere in this process, things became stuck. We watched other children learn to talk, ask questions and hold conversations with their parents. We reassured ourselves that Euan was simply a "late developer"; that as a bilingual child (English and Dutch) he would catch up before long; that he was otherwise a bright boy, so it was surely only a matter of time. Being told he was autistic extinguished these hopes: what we thought was a slight kink in the course of his development had turned out to be a shift of direction towards a new and alien landscape. Before we could move forward with raising him as an autistic child, we first had to let go of all our expectations of how his childhood should progress. It is hard to overstate just what a seismic shift this is.
The fear and the grief had their by-products: anger, self-recrimination, helplessness and despair. There were times when it looked as if the cumulative effect would sink our marriage. But there was also relief at finally having a label for Euan's difficulties and a first substantial clue towards solving the puzzle.

The first signs

The first signs of Euan's autism weren't confined to the nursery environment, but it was at nursery that they were most apparent. His interaction with adults and other children was minimal: he would play happily on his own with toys or books (the book corner was a favourite haunt) but it was almost impossible to engage him in group activity. When he was potty training he wouldn't tell anyone when he needed the toilet, so at first he wet himself like other children; but once he had mastered the mechanics of going to the cubicle, taking down his trousers and excreting, he would simply take himself off without announcement and return with just as little ceremony. The first anyone would know that he had been was when the next person went in and saw the evidence (unfortunately, washing his hands afterwards is still not an established part of the routine).
More seriously, when Euan was attacked by another child (a mercifully rare occurrence) he said nothing: he didn't even cry. It was only much later in the day that a member of staff spotted the large mark in his face – and, of course, Euan was unable to explain what had happened. The thought that your child is unable to defend themselves, either during or after the event, is a profoundly worrying one, particularly as they approach school age.
My wife, Magteld, and I denied the signs at home for a long time. The fiercely competitive sport that is bringing up small children does not easily admit the suggestion that your child might be in some way abnormal. I remember Euan at a birthday party at the age of two: while all the other children joined in a game of pass the parcel, Euan's interest was entirely taken up with watching the CD player that the music was playing on. On a visit to my parents a few months later, Euan became interested in watering cans: he took a can to the water butt in the courtyard, filled it up, then poured the water very carefully into an empty flower pot. He repeated this routine over and over again, seemingly absorbed in studying the flow of the water from the can into the pot.
Euan has taken an obsessive interest in numbers since he was very small. For his fourth birthday my parents bought him a blackboard. Once he had been shown how it worked, he picked up a chalk, handed it to me and said: “number one.” He showed no interest in watching people drawing or scribbling on the board, or doing it himself: the only thing he wanted was to see the numbers written in sequence, from 1 up to 99, which was as far as he could count. Or so I thought. The next time my parents were staying with us, Magteld and I got back from a shopping trip to find Euan effortlessly reading off three-digit numbers which his grandfather had written on the board.

My name is Gordon Darroch. I am the father of two children.

About a year ago we began having our elder son, Euan, then approaching the age of four, assessed for difficulties in his social development. He has always been a quiet, self-contained boy, rarely aggressive or anxious, happy to play by himself but equally content in the company of other children. His intelligence was normal and he seemed to be thriving at the nursery he had been attending since he was 10 months old.

But now the manager was telling us he showed little interest in the other children: he would play alongside them, rather than with them; if the nurses managed to persuade him to join in a group activity, he would quickly drift away back into his own world. And he rarely spoke. It was as if he was enclosed in a bubble: he could look out, and others could see in, but actual contact was all but impossible.

“Are you worried about him?” I asked the manager.

“A wee bit,” she said. It was the fairest answer she could give.

So began the long, exhausting and still unfinished process of having Euan assessed for autism. Even now I hesitate to use the words “Euan is autistic” to people because an actual diagnosis is still some way off. But the odds are shortening. Every specialist who has seen him so far has observed autistic traits in his behaviour, but the difference between suspecting your child has autism and having it diagnosed are as wide as the autistic spectrum itself.

This is intended to be a blog about living with autism in the family. Unlike some, I am not particularly interested in trying to work out who or what might be to blame for my son’s condition or whether it could have been avoided. The irrevocable fact is, it exists, and my prime concern is to learn how to deal with it.

There is a danger, too, of becoming so consumed with Euan’s condition that we end up seeing the condition and not the child. It’s true, as people often say, that there are worse things that can happen: he is not terminally ill or severely handicapped; his intelligence seems to be unaffected; he does not have a shortened lifespan, which I think must be the hardest thing for a parent to face. But at the same time, there are a lot of popular misconceptions of autism that lead people to dismiss it as just a mild hindrance, like walking with a limp or learning with dyslexia.

Perhaps dyslexia offers the most meaningful parallel: a generation ago, whole swathes of children were labelled as stupid, lazy or ill-disciplined when a little understanding and assistance could have saved them from a lifetime of under-achievement. I hope that with the right intervention and support Euan will be able to enjoy an independent and fulfilling life, rather than being written off as weak-willed and socially inept, as such children once were.