Tuesday, May 27, 2008

Our son's hidden world: Living with a child with autism

There are more than half a million people in the UK with autism. No one knows what causes it and there is no universally effective treatment.

But what is certain is that living with an autistic child is a daunting challenge. In a new book, CHRISTOPHER STEVENS writes poignantly about life with his autistic son. It's a moving account of the boy's struggle to cope with a world that confuses him - and the extraordinary leap forward that gave them all hope...

The first time we dared face the idea there might be something wrong with David, he was 16 months old.

The community nurse gave him the once-over, weighing him, prodding him and listening to his lungs. She asked how many words he'd mastered, and we said: "One - 'a-duh'. It means 'dog'."

His older brother James had about a hundred words at this age, but then, David was earlier to walk. They all have different talents, don't they?

The nurse made a note, showed David some flashing lights and spinning toys, then stood behind him and called his name. He didn't react.

She called again, more sharply. David ignored her. The nurse shook her head.

"He ought to turn around. It should be instinct. And his speech is slow to develop - have you noticed any hearing problems?"

Had we noticed? The whole street was painfully aware that David suffered from ear infections.

The screams that signalled pain were even more piercing and relentless than his usual howls of protest.

He had screamed since he was a baby. Whimpering and bleating gradually built into head-splitting wailing which went on and on until it burned itself out and David fell asleep.

One day we bumped into two of our neighbours, telling them we had just returned from the ear clinic.

The husband, a man in his 60s, said: "We've always said that baby had something wrong with him."

Other people were less rude, but they gawked when David shrieked in shops or parks. The idea of admitting that people like that man might be right was unthinkable.

But after the nurse's visit, my wife Nicky started to search for information on speech and language delays. There were many possible causes - and the most devastating was autism.

She found the standard medical textbook on mental health, Diagnostic and Statistical Manual Of Mental Disorders (DSM-IV).

It catalogued the criteria for autism: David would have to match at least six of them from a list of 12. We worked our way down the page; David matched point after point.

He never held our gaze and rarely made eye contact, his face revealed his feelings only when he was screaming and he didn't use gestures like waving or pointing.

He ignored dogs, cats and his brother ("failure to develop peer relationships").

If he had ever brought a toy to show us, we couldn't think when ("lack of spontaneous seeking to share enjoyment").

He was oblivious to our attempts to play games like peek-a-boo or chase, and didn't copy other children ("lack of social reciprocity and appropriate play").

He couldn't talk, and showed no sign of understanding anything we said ("lack of language development").

He watched the same videos repeatedly, spent hours stepping back and forth across bumps in the path, and was fixated on slamming doors ("abnormally intense and focused preoccupations").

He shrieked if we turned left instead of right when we stepped outside the door ("inflexible adherence to specific routines").

He fluttered his hands in front of him when agitated ("repetitive motor movements").

I made a last attempt to laugh it off by underlining fragments of the criteria which could apply to me.

"I've got dodgy social skills," I said. "I like to be solitary. I've got a million rituals. He's not autistic, he'll just grow up to be a journalist."

"Stop making a joke of it," Nicky told me. "We need to see a doctor."

We were referred to a consultant paediatrician at Bristol's Royal Hospital for Children, but our appointment was an agonising nine months away.

Everything that Nicky had read about autism emphasised that "early intervention" was essential, so we booked a private consultation.

After examining our son, the BUPA paediatrician told us to go back to our GP and insist on seeing a specialist as soon as we could.

We took David to the children's clinic to be assessed, but felt like frauds. He was grinning and bouncing. There were two other children in the waiting room, both in wheelchairs.

One little girl was bald, with dark rings around her eyes. She looked exhausted.

The other might have been a boy or a girl - thick curls, round face, a clear bag on a stick which fed a liquid through a tube under the child's jumper.

I smiled at the mother. "Who's this?" I asked. She just stared at me. "Kayley," she said at last.

"Hello, Kayley. You've got lovely hair." The child's head lolled from side to side. "She's deaf," the mother said, "and blind. She can't move on her own. She has to be fed through a tube in her belly."

She said each fact like an accusation. Whatever was wrong with our child, it was insignificant compared to her daughter's ailments. I wanted to take my child away. He didn't belong here.

Finally, after several weeks, the initial diagnosis came through at yet another appointment.

"Your son is probably not autistic, or only mildly so," Dr Smith said. "He has a communication disorder, but my opinion is that he's outside the autistic spectrum."

This was the headline news as far as I was concerned - "Nightmare over: screaming boy of Bristol is not a fruitloop, say medics".

Nicky was less trusting. She wanted to see the written report. That came two weeks later by post.

It described David's "significant difficulties" with communication, his "unusual" behaviour and his way of treating others "more as objects than people".

"All these aspects clearly put David within the autistic spectrum," the report concluded.

We read it over and over. Dr Smith at least had the grace to visit us and apologise. He admitted he had based his conclusions on his brief inspection of David six months earlier, in our kitchen.

He hadn't looked at the stack of reports from the assessment. Now he revised his diagnosis: David was moderately to severely autistic.

By the time the specialists called us to a meeting, the final stage of the report, David's diagnosis had been revised upward again. He was now "profoundly autistic".

In the following months, Nicky and were desperate to treat David' problems. We were ready to consider any treatment.

There were two main contenders: behaviour and diet. We heard about applied behavioural analysis (also known as the Lovaas technique).

This method involved a parent or teacher spending 30 to 40 hours each week with the children, mirroring every gesture and sound.

I went to a lecture on it, but the more the lecturer talked dismissively about our son, the more I thought: "I love my son, it's you I can't stand."

We didn't want to make David invisible, as this lecturer was advising. The therapy sounded like an expensive way of making sure he was never happy again.

So we tried every day to broaden his diet: chocolate, pineapple, buttered bread, Sugar Puffs. But all he drank, from a baby bottle, was full-fat milk diluted with boiling water, and dry Weetabix. If we had banned these foods, he would simply have starved.

The one story that sums up how David's mind works is when we went to the beach at Aberdovey in Wales. The waves were no more than ripples, and the shallow water was warm - perfect for toddlers to paddle in.

It was a few weeks after David's third birthday. If we could only get David's toes into the water, we'd have achieved something normal as a family: we'd have gone paddling at the seaside together.

David let Nicky carry him on her hip, while she splashed with James at the water's edge.

Faced with a little brother who won't let go of Mummy in the sea, a healthy five-year-old can't restrain himself for ever. James managed 90 seconds.

Two-handed, he sloshed a pint of seawater straight at David's face.

We braced ourselves for a shriek that would freeze the whole beach like a panoramic photo. But David didn't scream. He blinked, then chuckled.

Nicky seized her chance and dipped David's legs in the water. He chuckled some more.

At last, she let him down and held his hand as he stood waist-deep in the water. We cheered as Nicky let go of his fingers. David sat down. He disappeared. Even as his face vanished below the surface, he looked serene.

He must have been certain, until he was submerged, that the water level would go down as he sat - the truth didn't hit him for a couple of seconds.

He then lurched to his feet and strode out of the water in outrage. He wasn't frightened of the sea, he was simply disgusted at its behaviour.

If the water didn't have the sense to remain waist-high, David was having nothing to do with it.

Years later, I was watching James play a video game and realised that, although the cartoon hero seemed to be leaping, ducking and running, he really remained dead-centre of the screen all the time.

We expected to see the man move, not the world, because that's how life is. But that's not how things happen in cartoons.

And it's not how things happen in David's life, either. He is always dead-centre of the screen. The world flows around him.

Nicky and I laughed until we hurt that afternoon, but David never saw the funny side. He refused to be carried on to Aberdovey beach again.

Yet David was full of surprises. One day, when he was five-and-a-half, he started talking. It was as simple, and as unexpected, as that.

We had always insisted he didn't have learning difficulties, only understanding difficulties. He could learn to do anything he wanted, such as unbuckle a harness or operate a video player.

He wouldn't learn to do anything we wanted because he didn't see why he should. David didn't understand - and without words, we couldn't make him.

When he started talking, we realised the problem was more complex. But it hardly mattered, because we were so overjoyed to hear his voice.

He paraded his vocabulary for the first time just after Christmas, in the sitting room.

I'd slipped away to the kitchen and when I came back with mugs of tea, Nicky was wiping tears from her eyes. She shushed me before I could speak.

"Watch this," she said: "David, what is it?" Nicky held up a toy Kawasaki. David glanced at it and said: "Motorbike."

I gasped. "And he isn't copying me," Nicky added. "That's what is incredible. He knows the word. Look - David, what is it?"

"Racing car." "Good boy! And there, in the toy bucket - what's that?"

"Ambulance." He was saying the words perfectly, without prompting, and though his eyes only flickered at the toys, he was clearly loving the game and waiting for each challenge.

Nicky worked through every bucket of toys that morning and David knew almost every name. He came out with words that would have taxed any five-year-old - "narrowboat", "rhinoceros", "steamroller".

How long had he known "rhinoceros"? And how was he able to say it so beautifully, without any practice? For months, or years, he must have been secretly listening to words and taking them in. Now he could say them, but couldn't tell us why.

As David has grown, we have hung on to one hope. His autism ebbs and flows, and whatever improvements he makes soon fade away - but the improvements always come back more strongly. "If he did it once," we say, "eventually, he'll do it some more."

There's one sign of this which renews our hope every year: each Christmas, he remembers how to join in the fun.

David unpacks the decorations and races round the coffee table on a scooter, while Nicky and James hang baubles on the tree.

He sings along to carols, and curls up in a ball with his fingers in his ears when we pull crackers, and wears bangles and braces made of tinsel.

There'll be hugs as well. David has become very fond of hugs. He doesn't often put his arms round anyone, but he loves to be grabbed and squeezed.

He likes to make other people hug, too - he'll grab my wrist, drag me to Nicky, clamp his hands against the smalls of our backs and compress us.

For one day of the year, he will sit on Nicky's lap and watch James and me playing with presents, and listen to all of us talking and laughing.

He falls about laughing himself, sometimes because we are tickling him and sometimes because life is worth a good giggle.

For one day of the year, all his routines are suspended. David lets us control the show. He is happy to join in, one of the family.

Hopefully, a time will come when he understands that he can live like that all year round. Until then, corny as it sounds, we really do wish it could be Christmas every day.

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