Parent's view on genetic link to autism

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Parent's view on genetic link to autism: 'I don't want it to be eradicated'

Charlotte Moore, who has two sons with autism, reflects on newly discovered genetic links to autism
* The Guardian, Thursday 10 June 2010


Charlotte Moore and her three sons, George, Jake and Sam. Sam and George are autistic. Photograph: Linda Nylind for the Guardian

As the mother of two sons with autism and a third son without it, do I welcome this news? Yes, if it helps kill the idea that autism is somebody's "fault". Autism isn't caused by neglectful parenting; not only that, but parents passing on autistic genes is less significant than had been thought. Although some of these gene variations are inherited, others are found only in children. This helps explain why in some cases autism "runs in the family", but in others it comes out of nowhere. If you have an autistic child, strip away those shreds of guilt. Your child is what he or she is. End of story.

The findings will enable some families to get more precise genetic counselling, and that's good. When I debated whether to have Jake, my third child, doctors could only give me vague advice. I'm delighted I took the risk, but it's better to make such decisions armed with as much information as possible.

I'm concerned, though, that the information will bolster the idea that autism is a disease that should be cured. Caring for autistic people is hard. Self-harm, destructive outbursts, intense anxiety, sleeplessness ... who wouldn't wish those away? But autism can also mean originality, creativity, an innocence ... Do I hope that early interventions can be devised to wipe the human race clean of autism? No, I do not.