Condition of which we know so little

Simon Baron-Cohen, professor of developmental psychopathology at
the University of Cambridge, has a theory that autism may be an
extreme form of “maleness”. Perhaps. At present, it’s accepted that
about one in 167 children may be affected (“may” because these are
shifting sands) and it is four times more common in boys than
girls.

What’s also clear is that diagnosis often comes too late when much
damage has inadvertently already been inflicted on a young person.
Autistic children are not asking for more than other children in
the way of education and support, they are only asking for as much.

One reason why there are so few services for them is that the issue
of what really helps the autistic individual is barely addressed in
many areas of the UK. That’s why Dame Steve Shirley’s efforts are
so vital.

Shirley, aged 71, is a software millionaire and came to the UK as
an unaccompanied child refugee. She was the mother of Giles who
died, aged 35, in 1998, after an epileptic fit. He was diagnosed as
autistic in the 1960s. He was violent as a toddler and, over the
years, lost the power of speech. Shirley told the Daily
Telegraph how she had a nervous breakdown when Giles was
11.

Sadly, mental fragility is often the ultimate destination of many
unsupported parents of autistic children. Eventually, Giles went to
live in a hospital. “It was him or me,” Shirley says.

She went on to set up a therapeutic home which is now the Kingswood
Trust, caring for 39 profoundly disabled young adults. She also
established Prior’s Park, a school which equips severely autistic
children for simple work.

Now, she is trying to raise £400m to enable the National
Alliance for Autism Research to fill in the many gaps in our
understanding of the condition. Last year, the Shirley Foundation
commissioned a survey of all research in the field and found there
isn’t much that is satisfactory.

Shirley believes that autism, like cancer, covers a very wide
spectrum of conditions. She has dedicated £50m of her own
money to provide a more accurate map of that spectrum. “When Giles
was alive, 99 per cent of my efforts went on being his mother,”
Shirley says. “Now I can concentrate on being a friend to
autism.”

It is to be hoped, 10 years from now, we’ll look back in wonder at
how we understood so little about this condition.

• Further information www.naar-uk.org
• Yvonne Roberts’ novel, Shake!, is out in paperback,
  Headline, £7.99