You are here

Mind the gap - I am fascinated by autism and love my sons, but it is relentless. I cope by making sure I still have a life outside

Return to Vaccination News Home Page

Subscribe to the Vaccination NewsLetter

View past & current Scandals (columns by Sandy Mintz)

Search This Site using keywords,3605,955251,00.html

Guardian Unlimited


Mind the gap

I am fascinated by autism and love my sons, but it is relentless. I cope by making sure I still have a life outside

Charlotte Moore
Wednesday May 14, 2003
The Guardian

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 perspective.

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 2004.



Return to Vaccination News Home Page

DISCLAIMER:    All information, data, and material contained, presented, or provided here is for general information purposes only and is not to be construed as reflecting the knowledge or opinions of the publisher, and is not to be construed or intended as providing medical or legal advice.  The decision whether or not to vaccinate is an important and complex issue and should be made by you, and you alone, in consultation with your health care provider.


Daily News Navigator