Autism: A mother's story
When my eldest son, George, was born, the Berlin wall had just
fallen and Nelson Mandela was about to be released. Sometimes, those
great images of freedom seemed ironic comments on my own situation.
As I cradled my alert, healthy, bright-eyed baby, I had no way of
knowing that he had an invisible lifelong condition that, 19 years
later, would keep him almost as dependent as a toddler.
George is autistic. So is his brother Sam, born 22 months later.
Knowledge of autism has galloped forward since their early days.
Then, it hadn't even been established that it was a genetic
condition, with structural differences to the brain. Soon a prenatal
test may be available, to indicate whether a fetus is likely to
develop autism. I'm glad that test wasn't available to me.
My first pregnancy ended in a termination. A mid-term scan showed
the baby had no limbs. Such a child, I thought, would have no option
but to be a hero. I considered this an unfair burden, and I ended
his life, with great sorrow but without regret.
It would seem logical, then, that I would have made the same
decision about an autistic fetus, that I would have chosen to
sidestep a lifetime of dependency of a different kind. And yet there
is no part of me that wishes away my sons' lives, or the life I have
with them.
I have a third son, Jake, 10, who is as unautistic as they come.
When I outlined the abortion debate, he was indignant. "George and
Sam aren't sad about being autistic because they don't know they
are," he said. "Anyway, what's wrong with being autistic?"
Jake accepts the life he's always known. His brothers break his
possessions, gobble up his chocolate, render the lavatory unfit for
use. But he blames them no more than he blames his beloved cat for
tormenting baby rabbits. They're autistic; that's what they do.
Many articulate autistic people would argue that Jake's right;
there's nothing intrinsically "wrong" with being autistic, it's just
that our neurotypical society is ill-adapted to their needs.
Unlike my sons, who I believe have no perspective on their
condition, the more able often suffer from awareness of their
differences. I doubt that a prenatal test would be able to
distinguish between severe autism and the "high-functioning" kind,
but in any case it's a mistake to think that life is easier for the
more able. However, would able autists agree that their potential
suffering should have been terminated before birth? I suspect not.
Most autists are physically healthy. A minority have epilepsy, and
gut problems are quite common, but, for most, "quality of life"
depends on quality of care and understanding, appropriate education,
and a living environment that takes account of their sensory
hypersensitivities.
Such conditions are achievable - but at considerable cost to the
careers, usually the parents. Not only is the caring hard work, but
there's no cut-off point. My friends' children are away on gap
years, starting university, finding partners. George and Sam are
giant children, and my responsibilities towards them will continue
until I die.
A prenatal test without a termination would have prepared me a
little for what lay ahead; I would have wasted no time in barking up
the wrong trees, which would have been a good thing. But the thought
that I might well have opted for termination makes me shudder. I
view abortion pragmatically. It's always happened, and it always
will.
When the prenatal test is introduced, it will make no sense to
decree that a mother can choose to terminate, say, a Down's baby,
but is obliged to keep a potentially autistic one. It's inevitable
that many will be terminated.
Autism often means sleeplessness, eating problems, self-harming,
aggression, destructiveness, bizarre behavior of all kinds. It can
destroy marriages, and it certainly doesn't help your finances. I
would never condemn a mother who decided that she couldn't cope with
these possibilities.
But autism also means unique perceptions, special talents, weird
humor, a view of the world untainted by greed, envy, malice, vanity,
ambition. Our family life is as rich and as meaningful as any other;
my sons' lives are not tragic, and nor is mine. A society that aims
to remove all the variables that make human life so fascinatingly
complex is not a society I want to live in.