When Lesley Henderson's fourth child was diagnosed as autistic she thought his furture would be bleak. Now, after going to America and learning how to help him, she is passing on her knowledge through a trust she has set up. She talks to Women's Editor Sarah Foster.

THERE is a gallery of pictures at the Toby Henderson Trust. In one a cherub-faced young boy sits smiling sweetly with his brother and there are others of the child in which he's clearly full of life. Then, as your gaze moves slowly down, the boy's expression starts to fade. The light goes missing from his eyes and he looks blank and far away. This marks the point in Toby's life when he began to be autistic and the point at which his mother felt her world come crashing down.

"I can remember when he was born thinking 'God, I've had four kids and I've been so lucky there's nothing wrong with them'," recalls Lesley, who's 49. "Toby's autism was very late onset - there were no worries about him at all until after two-and-a-half. He was just like a chip off the old block - loud, sociable, completely verbal - then over a period of about three months it seemed as if his personality changed."

As Lesley watched with helpless dread she saw the little boy she loved lose all his confidence and skills. It was "like someone had switched the light off" and she ended up distraught. "He stopped saying very much and what he was saying wasn't coming out right, then pure frustration took over and he just used to scream," she says. "Then he just stopped talking. It was a weird thing. I just felt powerless, absolutely powerless to stop whatever was happening. It was a horrific time. I remember just walking around the house bursting into tears all the time."

When Lesley sought professional help she found that answers weren't forthcoming. As doctors struggled with his case her son's condition only worsened. "He was terrified of everything - he wouldn't go in the bath, he wouldn't go to sleep anymore and he seemed to be terrified of leaving the house," she says. "I couldn't clean his teeth, I couldn't get him to put his shoes on, he kept stripping his clothes off... Suddenly here was this little person who just seemed to be turning into a little animal and I didn't know what to do with him. Because you had pinned all your hopes on professionals coming you would wait for them forever and then they would turn up and you would get no answers from them."

At last the diagnosis came but there was little help on offer. Sheer desperation prompted Lesley to attempt her own solution. "I thought 'hey, I've just got to do something about this myself'," she says. "I went over to America to do some training and came back and thought 'this is very expensive, I don't think there's any magic in it and I think I should be telling other people about it'."

From just the germ of an idea she formed the Toby Henderson Trust to offer help for families struggling with autism. As she explains, from her experience, Lesley knows just how it feels to have a child who is autistic and the sense of fear it brings. "I do completely identify with the families and that's why I just love helping them," she says. "I want to be able to say to them 'look, it's going to be all right'."

When Lesley first acquired her centre, based in Stannington, in Northumberland, it was just an empty shell. To turn the former children's farm into a space that she could use required a lot of outside funding, but in the early days at least it seemed that this was not a problem. "We were very fortunate when we started up - we were very successful with grants," says Lesley, who lives in Widdrington, Northumberland. "They aren't as easy to come by these days because after a period of time you have to be seen to be self-sufficient and there's a lot of people after a lot of money."

Despite the scarcity of funding, this year the trust is five years old. Its base is welcoming and bright - a place designed to be child-friendly - and every day it offers services to clients and their families. As Lesley says, there is no limit on the age of those who use it. "We go from two to 80 and we work with children and young adults who have an autism spectrum disorder and very much their families and other supporting professionals. People come to us via a number of different routes - they can just pick up the phone and ring us and we get a lot of referrals. There's no strict rule. We tailor each programme to the individual because everybody's family situation is different. We look very holistically at the family."

Among the fixtures at the centre is a school-age children's fun club and another for young adults, which they've christened Bond at the Barn. There are also several playrooms with equipment for pre-schoolers and it's this group, more than any, that Lesley feels the trust can help. "We often find that if people are worried about their children and the word 'autism' is being bandied around it can be the best time for them to come," she says. "We can help them realise it's not a horrific situation after all."

Alongside offering parents hope is the desire to tap potential. As Lesley knows, autistic children can be trapped in their own world yet with appropriate support, the barriers can and do come down, which sets them free to live their lives. Providing ample proof of this is Lesley's son, who's now 13. Though he will always be autistic he's progressed in leaps and bounds - he is a well-adjusted child no longer fearful of the world. When Lesley speaks of him today it is with undiluted pride and there's a sense that he is all she'd ever want as a reward. "Toby is differently-abled and he takes pleasure from life in a different way, but everybody is absolutely captivated by him because he's so easygoing," she says. "He used to be so frightened of everything and now he's relaxed in his own skin."

* The Toby Henderson Trust, The Old Barn, Whitehouse Farm Centre, Stannington, Northumberland NE61 6AW, 01670-789753, www.ttht.co.uk