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Kathy Lette: Raising a child with Asperger’s is like putting together a giant jigsaw puzzle
Author Kathy Lette reveals what it’s like to raise an autistic child.
My son Julius was diagnosed with autism aged three. The word ‘autism’ slid into me like the sharp cold edge of a knife. This is a diagnosis that drags you down into the dark. The doctor had reduced my cherished child to a black-and-white term. But to me, my little boy was full of the most vibrant colours. I felt disbelief, followed by dismay and then by a fiercely protective, lioness-type love. Finally, many, many experts, tests and schools later, my son was rediagnosed with Asperger’s syndrome, the high-functioning end of the autism spectrum.
Jules was my first born, so it took me a while to realise something was different. Before Jules was born, all I knew about autism is that it’s a lifelong disability chiefly characterised by an inability to communicate effectively. I now know that it means not getting a joke, not knowing what to say then saying the wrong things, being told off but not understanding why, doing your best but still getting it wrong, feeling confused, frightened, out of sync all day, every day. As a mum, well, sometimes I feel I didn’t give birth to Jules but found him under a spaceship and am raising him as my own. It’s like trying to put together a giant jigsaw puzzle, without the benefit of the coloured photo on the box. There is no owner’s manual.
My new book is a work of fiction but inspired and informed by my own experiences. I only write because it’s cheaper than therapy, so it has been a relief to finally talk about the heartbreak and hilarity of raising a child on the spectrum. As the mother of a child, your guilt gland throbs. Was it something I ate while pregnant? Soft cheese? Sushi? Was it the glass of wine I shouldn’t have drunk in the final trimester? If only I’d feng shui-ed my aura in yogalates classes chanting to whale music like Gwyneth Paltrow and Organic Co. But then you come to accept your child for the exceptional little person he is. I no longer think people are normal or abnormal. I think they’re ordinary and extraordinary. And people with Asperger’s are quite remarkable. My own son is Wikipedia with a pulse.
The increased awareness around Asperger’s is helpful. And I hope my own novel helps de-stigmatise the condition while also promoting tolerance and understanding. And that it gives some comic comfort and much-needed camaraderie to the thousands of parents struggling to raise special children. Because trying to cope on your own is as effective as standing up to Voldemort with a butter knife.
People with Asperger’s may not contribute to society in conventional terms but that doesn’t make them less valuable and it’s up to us to help them flourish, starting with stamping out the bigotry that excludes people with disabilities from mainstream life. It’s criminal to squander their considerable talents. People with Asperger’s often feel they’re drowning in their own brain waves. I hope this novel, in its own small way, acts as a small literary life raft.
The Boy Who Fell To Earth is published in paperback on April 11. Kathy is promoting Quick Reads, which produces bite-size books to encourage people to read. www.quickreads.org.uk
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