Boy in a bubble

IMAGINE an unfamiliar world in which little is recognisable and you feel constantly frightened.

Faces are impenetrable masks, the expressions on them both threatening yet devoid of specific meaning. You do not understand your position in this place you find yourself. You are a square peg in a round hole, constantly crammed into someone else's space that simply doesn't fit. The faces talk to you but their language is alien and you are frightened of misinterpreting their words. In fact, fear defines your world. You take comfort in ritual and repetition and scream when it is interrupted. Often you simply withdraw inside yourself to an internal world that contains only you.

This was Dale Gardner's world. As a child he was severely autistic. He is 20 now and it is fascinating to sit in his house in Gourock listening to him describe a world he finally emerged from. Autism is a complex condition that affects roughly one in 110 people in Scotland – that's 45,000 – and causes sufferers to have difficulty with social and linguistic interaction. The symptoms and severity of the condition vary; some autistic people will never learn to speak, others will function relatively normally. But it is very rare for someone like Dale, who at one time couldn't talk to his parents or empathise with others, to be able to unzip the autistic brain, show you what's inside, then zip it up again. His descriptions are often very simple and to the point. "I would say," he says, "that autism is a disability that makes people scared at the wrong times."

Two things prompted Dale's remarkable progress: the determination of his parents, Nuala and Jamie; and the help of a rather special dog called Henry. The story of how Henry helped bridge the gap between Dale's world and his parents' was first made into a film, After Thomas, starring Keeley Hawes, Ben Miles and Sheila Hancock, and Nuala later went on to tell the full story in her book, A Friend Like Henry. Now, she has taken things further. Dogs have long been used to help blind people and epilepsy sufferers. But she is working with Dogs for the Disabled to develop a full training course to reach autistic children. Results have been encouraging and she is now looking at the possibility of sourcing gun dogs.

Research Autism is also carrying out its own systematic evaluation of dog programmes and Richard Mills, the charity's director, says there has been an improvement in the quality of life for both the children involved and their families. "We're not building up hopes that this is a cure for autism but we really think there's something worth looking at. And while some interventions for autism are extremely expensive, this isn't."

Dale simply didn't communicate verbally as a child and Nuala and Jamie bought Henry in the hope that their son might relate to the dog in a way he couldn't to humans.

It worked better than they dared hope. Henry became the conduit for Dale's communication after Jamie hit on the idea of adopting Henry's 'voice' and talking to Dale through the dog. Dale began talking back to Henry, though really the message he was giving was often directed to his parents. All these years later, Dale explains that he was simply too frightened to talk to his parents. Henry was easier to interpret.

Experts suggest 80% of human communication is nonverbal.

Most of us interpret the myriad signals – facial expressions, body stance, eye movements – instinctively.

But for autistic children, those signals are both baffling and frightening. Dogs are estimated to have only five basic facial expressions and their faces are therefore much simpler to read. "The reason I spoke through my dog was that I found the human face scary," explains Dale. "Most autistic people are scared because they might read the emotions wrong. They won't see the hidden emotions, just the visible ones. But Henry had a very natural look on his face, very calming. A very trusting look in his eyes as well.

There was no fear in talking to him."

Dale seems shy but composed and very polite. He is not chatty in the normal sense but he answers questions and maintains eye contact well. Perhaps when you smile, his reaction is sometimes unexpectedly deadpan. But autistic people respond very literally to language and it is only when talking to someone with the condition that you suddenly realise how layered language is, how often throwaway 'jokes' are based on sarcasm and irony. Dale's parents fought hard to get him a place at a mainstream secondary and by then he was able to manage the condition so successfully that many of his peers failed to detect there was anything wrong.

He said something once that chilled his mother to the core: had they not 'talked' to him through Henry, he would have chosen never to talk at all. Dale still has to battle his condition. Occasionally he can walk into a shop and feel that old fear. "But I can fight it and it's not as difficult any more. I know I still have autism. I'll never get rid of it and can only overcome it. But I like to tell people my story because it gives hope. I don't like to keep it hidden." So what is left of the autistic child? "I don't actually think there's anything left of him."

BUT LET'S NOT make this a fairytale. The ending is wonderful because of how desperately it started out. But there was no magic wand, only hard graft and a love that wouldn't give up. Dale is right: this is a story of hope. But hope had to triumph over messier emotions. There was anger and despair and hurt. There were relationship stresses and a near-suicide attempt. Once, in an ironic reversal of the usual custody tussle, Nuala told Jamie he could leave if he wanted to but he needn't think he was going without Dale.

Thursday, November 14, 1991. A small bowl. Two spoons. Bottles of paracetamol that have been bought and hidden.

Sleeping tablets. Painkillers. Nuala is a nurse. She knows how these things work. She tries to make calculations as she crushes the tablets between the spoons. She has to get it right because she has seen the results of botched suicide attempts – the people who end up surviving but with organ failure and brain damage. And she can't work it out, her brain simply won't let her work out how much she needs, and soon she's curled into a foetal position, sobbing. Just as she thinks she'll get up now and crush some more tablets, she sees Dale's toy truck on the floor and grabs it to her as if it's her baby.

"I look back now and know I was somebody else," she says. "I was very ill, very exhausted. People say, 'My goodness, did you not think what you were doing?' But you don't. You just want out. Having worked in renal units with failed suicide attempts is what saved me… having that insight of 'what if this goes wrong?'. And then I saw the toy and thought, 'God almighty, what am I doing?' I've heard that from other victims – there's some little trigger. It's the ones who don't have that trigger, that little bit of rationality left in them, who do kill themselves, because you don't think of anybody else. It sounds very selfish but you are that ill and that exhausted."

In recent years, Nuala has come to offer support to other parents with autistic children and now knows just how common those suicidal feelings are. There was the wellpublicised case of a woman who jumped from the Humber Bridge with her 12-year-old son in her arms. Her son suffered from Fragile X, a condition that causes autistic behaviour. "The story of that poor girl haunts me, because I know what it's like to be there, standing on that bridge, or with pills. I know what it's like. The child in her arms. It just haunts me."

Autistic children's behaviour makes them simply exhausting to manage. They are often obsessive and ritualistic, and their fear and anger trigger massive tantrums that to outsiders can seem like mere bad behaviour. Often, they suffer a kind of sensory overload, in which noises seem much louder than they do to the rest of us, rain seems like a terrifying plague and ordinary fabrics irritate their hyper-sensitive skin. They are also hugely resistant to change. If Dale needed new clothes, Nuala had to buy things that were identical to his old ones and dirty them to take away their newness.

But when she was lying on her kitchen floor with crushed paracetamol, her despair was actually directed at the system rather than Dale – a system that preferred to think she was attention-seeking than that her son had autism. Any diagnosis had obvious resourcing implications for the local authority. "But there was medical arrogance as well," says Nuala. "I was a nurse and how dare a nurse tell psychologists and consultants what is wrong with her child."

Nuala Gardner has very obvious warmth and energy. Yet because she wanted to discuss the implications of Dale's problems, rather than simply cry, her relationship with him was deemed cold. "I had to fight the system, hold down a job, and I was losing my son to severe autism because he was not getting the help he deserved. Whatever I did was futile and I just couldn't bear it any more." When she sought help immediately after her suicide bid, she realised that, too, was going to be used against her. Ironically, that increased her strength.

"I just thought, 'Right, if that's the level this has got to, you've given me the strength to take you all the way. I have nothing to lose now. I've lost my dignity, lost everything.

I will do whatever it takes to get this sorted out.' " She took Dale to a nationally recognised autism expert in Nottingham and was immediately given the all-important diagnosis that unlocked the help he needed.

All parenting is tough. Multiply that by 100 for children with autism, says Nuala, who wants people to understand "the horror" of living with the condition. Normal children drain you. But they unleash a tide of love and affection that is enormous recompense. Autistic children do not. If she is honest, did she ever struggle to love Dale because he was so self-contained? "Loving him was a natural instinct the moment he was born. I think because of that overpowering love I would not write him off. It was actually my love that drove me. But there's no denying that my heart was broken with that desire to be loved. The two things were in unison. I loved him so much it was worth the effort. But I was desperate for the love back."

Nuala's late mother had been a big help with Dale. It was she who had unlocked his very first word. Tree. "That one word was like winning the lottery. And it was her saying, 'We can get another one.' I thought, 'She's right. We can get two.' I sometimes think if I hadn't got that word, I wouldn't have been driven as much. It's quite different to get that bit of hope."

Nuala and Jamie's relationship took a battering in those early years. They were constantly exhausted. There were times when Jamie would walk in the door from work and Nuala would walk out of it, unable to stand another minute in the house. Yet something fundamental survived.

"We still have a fantastic relationship. And regardless of the physical side of our relationship going, we had still found our soulmates. We were both driven to help our child and I think that's the reason we got the result we did. I needed a soulmate who was with me all the way. We definitely had our moments but he grafted and went for it and embraced whatever he could to help."

Once, Jamie even took Dale on a 60-mile round trip to the transport museum, knowing it was closed, just so Dale could understand the concept. Dale's obsession was Thomas the Tank Engine. (The trains from the series are often popular with autistic children because of the engines' easy-to-understand faces.) "It just encapsulated that wonderful daddy thing," says Nuala. "I don't know that even I could have driven a round trip of 60 miles just to avoid a tantrum. He said to me, 'You're exhausted, have a bath,' and he did things like that a lot."

Then along came Henry. Dale's conversations with Henry eventually led to conversations with his parents. He called them 'Mum' and 'Dad' and so began a process that culminated in him being able to tell his parents that heloved them.

Despite everything, Nuala and Jamie wanted another child. They had difficulty conceiving, so in addition to their problems with Dale, they undertook the emotional rollercoaster of fertility treatment. When Dale was 12, his sister Amy was born. Autism affects four times as many boys as girls and Amy seemed entirely different from Dale: lively, sociable and communicative. But at the age of two she seemed to regress, actually losing language and becoming withdrawn.

One day, Nuala went into Amy's bedroom and saw her lying on the floor watching a spinning carousel. She smiled at the sight, but then caught sight of Amy's eyes and froze. Amy seemed in a trance, simply transfixed by the spinning motion. She was completely silent with no facial expression and Nuala recognised that look only too well.

"I'll never forget it. It was like somebody walking over my grave. Scary… just this unravelling. You've been there before. It shouldn't be happening. It's like being in two air crashes in your lifetime. I couldn't believe it but I couldn't deny it either." Amy was autistic too.

NUALA HAS GONE to pick up Jamie, so Dale comes in to talk to me. The family's two retrievers are jumping exuberantly, a mass of wet tongues and big, soft eyes. Henry and Thomas. But not the original Henry, who died in 2006. Dale sleeps with the late Henry's collar under his pillow. In the hall there's a picture of the dog that Dale drew. "I am not scared of the thought and responsibility of being an adult," Dale wrote for Nuala's book. "I've decided that for the rest of my life, I'm never going to let my amazing dog down, so he'll be proud of me, as I always will be of him."

When his father 'talked' as Henry, Dale had believed in much the same way older children believe in Santa – because they want to. "I knew it wasn't Henry but I just liked to believe it." Henry was a trigger for change, for expressing other emotions. "I think I just understood that everyone has feelings." And what about his feelings for his mother and father during all those years when he appeared to barely recognise who they were – inside, did he love them? It's the past tense of the question he seems to focus on. "I still love both of them," he says quietly.

Dale has an understanding of his sister, Amy. But her autism has been different. She is more outgoing, less severely affected than Dale was. When her condition emerged, the awful thing for Nuala was not confronting autism again but confronting the system. It was 15 years on and things had changed a bit, but the stories she heard from other parents still made her despair. In 2006, HM Inspectorate of Schools found targets set for autistic children were too low. But teachers are in a difficult position.

Not only is resourcing an issue, but the report also criticised the lack of training available. Consequences would be serious, the report said, if reforms were not carried out.

When Jamie comes home, Amy dances round him. She wants everyone to stop talking now and pay her some attention. Jamie seems as calmly laid-back as Nuala is driven, a fuse to her energy. He talks very quietly, with a little edge of dry humour, but you're in no doubt about the serious stuff, the unconditional nature of his love for his children. He recalls those frequent journeys to the transport museum, Dale sitting beside him in the car. "We'd go there a lot and he'd just sit there and look at me. Sometimes, if I put my hand on the gear stick, he'd put his hand on mine and just look at me. He'd never say anything, but you kind of knew that he knew where he was going and he was happy and this was his way of letting me know."

Jamie remembers walking around the local neighbourhood with his son when Dale was about three and there was a man out mowing his lawn. He had piled the grass into little pyramids. Dale twisted free, ran over and kicked it all. "I was really worried. I thought, in 15 years' time I am going to be walking along here with Dale and they'll say, 'Look, there's that sad guy with his sad disabled son.' I thought, 'Is that what is ahead of us?' "

But it wasn't. Because here's Dale sitting communicating gently, patiently, with a stranger. He has seven Standard Grade passes to his name and is studying for an HNC in childcare. He is a volunteer for Barnardo's and is involved in the development of Nuala's dog training programme.

His mother is bursting with pride. When she first found out about Dale, part of her grieving process was to wonder if it would have been better if he had never been born. "But just look," she says, "at the son I've got now."

Nuala Gardner will be talking at the Edinburgh International Book Festival on Sunday, August 10, at 2pm. Tickets (£7 and £9) from www.edbookfest.co.uk or 0845 373 5888