Charlotte Moore
Wednesday April 23, 2003
The Guardian
I've been talking to a woman whose son has been diagnosed as
autistic. He is her only child. Like my George, as a baby he was so
attractive - almost magnetic. He seemed exceptionally bright;
gifted, even. Now he's three and a half, and she's watching in
dismay as he undergoes a classic autistic regression, losing the
skills of which she had been so proud.
Should she go ahead and have the second child she'd always
planned? She knows there's a real chance she might have another
autist. After our first two sons were both found to be autistic, we
had genetic counselling at the Maudsley Hospital. They estimated the
chances of it happening a third time as one in twenty. But this is
only an estimate; the genetic component of the condition isn't fully
understood. We took the risk, and I'm very glad we did, because in
addition to George and Sam I now have my almost pathologically
un-autistic Jake.
My caller was wondering whether she could cope with another child
with such complex and exhausting needs. But I suspect that what she
was most frightened of was "losing" another child to autism, of
being forced to relinquish her hopes for the child she thought she
had in the face of mounting evidence of abnormality.
Few parents know they have an autistic baby. I didn't; nothing
was spotted by any of the health professionals who dealt with George
and Sam. It is only with the benefit of hindsight and the experience
of Jake that I can recognise that my first two babies were, indeed,
born autistic. The condition takes a while to show its true colours.
Unlike a physically obvious condition, such as Down's syndrome,
autism can only be diagnosed by behavioural observation. With a
young baby, you'd have to be extremely clued up to know what to
observe.
This means that most parents have months, even years, of false
belief about their child. The extreme physical attractiveness of
many autistic infants can add to the impression that a marvellous,
normal child had been somehow "lost". For some parents, the process
of grieving for the child you thought you had takes years to
complete. There's a nagging residual feeling that the child could
snap out of it; you almost wonder, sometimes, whether they're just
putting it on. Documentary-maker Saskia Baron's autistic brother
Timothy is now in his 40s. Her recurring childhood fantasy was that
he was some kind of spy, just acting his autism, and that one day he
would unmask himself.
This fantasy was fed by moments - or hours, or even days - when
Tim would suddenly seem a lot more normal. He'd always return to his
autistic ways, but these flashes gave the misleading impression that
there was a "real" Tim inside, that you only had to find the right
key to let him out. All of us who deal with autists have experienced
this. Out of the blue you get some great eye contact, some clear and
meaningful speech, even some action which feels empathetic. Sam is
not very verbal and is usually emotionally aloof or indifferent, but
once, when George was upset he went over to his brother and patted
him on the head. "Don't cry, Georgie sweetheart," he said.
Autists who've written autobiographical accounts describe
occasions when the mists lift, when the neurotypical world suddenly
seems to make more sense. But, like most autistic experiences, such
moments are only fragments. Autists can learn some coping
strategies, but their condition will never be "cured". And the rest
of us must learn to stop wishing for a cure. Acceptance is all.
That natural early assumption that your baby is normal affects a
lot of things. Many parents choose mainstream school for their
rising-fives because they haven't shaken off the impression that a
mainstream child is what they have. Inclusion in the mainstream
rarely works, but it takes some of us years to understand that
"special needs" means exactly what it says.
I wasted a great deal of time with my two, thinking they were
only "mildly" affected. They're not. They're both profoundly
handicapped, both George, the "gifted" baby, and Sam, the cheery
toddler. If I had my time again, I'd intervene straight away with a
gluten-free, casein-free, additive-free diet, and as much
interventionist behavioural therapy as I could manage. I'd keep them
out of mainstream school until I was certain they were ready for it
- and I'd try to accept that that day might never come. And yes, I'd
go for that next pregnancy. No question.