WEST END producer Katharine Dore is telling me about the day she discovered her three-year-old son Toby was profoundly autistic. "He'd been a relatively normal baby but seemed slow.
Then he began to regress rapidly to the point where he had almost no communication with the outside world." Not only do you feel pain, loss and confusion at the initial diagnosis, she says, you can be consumed by anger at a system that seemingly devalues you and your child with special needs. "Your child is isolated by autism and you, too, feel very alone."
Yesterday new research brought the prospect of prenatal testing for autism significantly closer, potentially allowing women to terminate babies with the condition. For Katharine, this is hugely controversial. "Toby is exactly the sort of child they would plan to abort," she says, "and just look at the great life he has. It's about understanding what is a full life to that person. If we get rid of every member of society that we don't feel fits into our nice little box, isn't this rather terrifying?
Haven't we been here before with eugenics?" And if she had known about Toby's condition while pregnant? "It wouldn't have made any difference, because I would have gone ahead and had the child. The thing that concerns me is that there's so little public information about autism even now. We should be telling people what autism is and showing you can make an environment for these young people to flourish."
Twelve years on from his diagnosis Toby, 15, blond and handsome, cannot speak or spell his name and can never be left alone for a moment. Unlike some people on the high-functioning end of the spectrum, he does not have special "savant" skills, such as an extraordinary talent for mathematics, but he leads a full, involved life. He loves to ski and swim and deep-dive. And he is currently volunteering at Kentish Town city farm.
Seeing the sheer joy he takes in being useful inspires all who see him, says Dore. "Toby has no concept of paid employment. What he does understand is the satisfaction of completing a functional task, of being a cog in a bigger wheel, of having somewhere to go where people are pleased to see him, where the environment is manageable and where other people are unfazed by his sudden outbursts or unpredictable behaviour." I meet Dore, 49, at her waterfront apartment on Clink Street, just off Borough Market, where she lives with her partner Christopher. A statuesque 6ft in black velvet tunic and funky leopardskin shoes, she is a descendant of the 19thcentury
French illustrator Gustav Dore; her late father was a vicar. There are no false heroics. "A lot of people say, 'Oh Katharine, disabled kids are given to people who can look after them.' Well that's the biggest load of hogwash. I don't want to have to bloody cope! But you are where you are, you're given the child you're given." When Toby was diagnosed, her relationship with his father collapsed. She never thought another man would want to take them on. But seven years ago, an old friend, Christopher Allen, declared his feelings for her. "He said, 'I've been trying to seduce you and you haven't even noticed.'" Allen has a property development at Bankside and built the riverside flat where they live (they spend weekends in Monaco, where his business is based). She acknowledges that financial security has made her situation easier. Long-term the plan is to provide care for Toby to live independently in his own home, "when one or both of us go under the Clapham omnibus", as Dore puts it cheerfully.
Dore is best known for producing shows with choreographer Matthew Bourne. She's the woman behind the award-winning all-male Swan Lake, as well as hit shows Cinderella and The Car Man. Together she and Bourne have won three Tony awards on Broadway and two Olivier and Evening Standard awards.
It was on the day of the West End premiere for Swan Lake her greatest theatre triumph that Toby was diagnosed. …