Wednesday May 14, 2003
As autism is a spectrum disorder, autists exhibit wildly differing
traits. Their idiosyncrasies, deficits, and abilities can make one
autist almost as unlike another as he is from a non-autistic person.
But if autists themselves often have little in common, there is one
experience that unites all their parents: being asked the question
"how do you cope?"
I cope with help. I can, and often do, manage my three boys on my
own, but our quality of life is much better if there are other
adults around. On my own, I cannot let my vigilance slacken. Sam
might pull a boiling pan off the stove, or drag Jake across the
floor, or take himself off for an unannounced walk, destination
unknown. George is less dangerous, but he'll let the hamster out, or
raid the dustbin to augment his litter collection. Only yesterday,
George peed on his toybox. "Sorry!" he grinned, using my sweater to
mop it up.
Coping alone is possible, but it's more about keeping them alive
than about having fun. Help from other adults expands their range of
activities, and gives Jake the non-autistic playtime that is his
life's blood. I get help from relations, friends, neighbours, our
ABA tutors, and from Ian the nanny, the most recent addition to the
household. It's important that the boys have good relationships with
several adults apart from me. I'm lucky; I haven't had to clamour
for respite care. But there is respite help to be had: pester social
services and your local Autistic Society.
Don't be too proud to ask. You need to grow a thick skin, both to
ask for what you need, and to deal with the extraordinary situations
that arise every time you take your child out in public. I have had
the odd confrontation in shops or on public transport, along the
lines of "Can't you control your children?" (Answer: No.) But most
people are kind and helpful, especially if you explain the
situation. And it really is up to you to explain. Autism doesn't
announce itself with a wheelchair or a white stick. It isn't
immediately obvious why a good-looking 13-year-old must dive behind
the counter to grab a discarded till roll (George), or why a
physically able 11-year-old cannot stand in a queue (Sam). You need
to play your part in educating the public.
Having a child with any disability throws your life off-balance.
It's easy to become obsessive, to let outside interests wither away.
I'm fascinated by autism, and I observe my sons with keen interest,
but I also need breaks from it. An important part of my coping
strategy is to maintain an active mental and social life which has
nothing to do with autism, and which restores my sense of
I am constantly searching for an equilibrium between striving to
conquer aspects of their condition and accepting them for what they
are. I've tried many therapies and interventions, and most have
brought benefits, though none have amounted to a cure. I hope I was
never looking for a cure; now, I'm sure I'm not. I want Sam to stop
scattering his food and biting his hands, but I don't dream of a
neurotypical Sam with the usual emotional and intellectual range of
a boy of 11, because no such Sam could possibly exist.
What do I want for my children? I want them to be happy, and to
be allowed to be the kind of people that they are. This applies to
all three of them, but for George and Sam, happiness won't be made
up of the usual ingredients. When you look after autistic children,
you have to throw away the child-care recipe book and reach your own
conclusions based on patient observation. Loving them is the easy
part; what is harder is to square their desires with what those
around them can tolerate.
My final coping tip is to enjoy your child as much as you
possibly can. You may be saddened to relinquish the ideal of a
playful, sociable, imaginative childhood, but there is a refreshing
absence of the neurotypical nasties - no competitiveness,
possessiveness, envy or spite.
Many, many readers have sent me interesting and supportive
letters and e-mails. It has been my intention to reply to them all;
if I have failed to do so, I apologise. This week is autism
awareness week, so it seems appropriate to thank the Guardian for
improving public awareness by running this column for the last two
years. For me, it has been a treat. I have been allowed to rabbit on
about my children, uninterrupted. Isn't that every mother's dream?
· This is Charlotte Moore's final column. She is writing a
book about autistic family life, to be published by Viking in March