People with autism and learning disabilities can die up to 20 years prematurely. So how can we help carers and health workers diagnose illness in non-verbal patients?
“Oh, he’s been so brave and good. He’s not made a fuss at all.” That’s what the well-meaning care worker said about my autistic older brother after he broke his nose in an epileptic seizure some years ago. Except that Timothy wasn’t being brave or good – he’s just not able to tell us when something is wrong; he doesn’t have the words for it. Like a third of people on the autistic spectrum, my 58-year-old brother has very limited verbal communication. He can speak, but usually only when prompted, and in learned, short phrases or single words. And like the majority of people with autism, he has unusual sensory responses. We suspect that he doesn’t feel pain in quite the same way we do.
There is a saying that when you’ve met one person with autism, you’ve met one person with autism – it is notoriously hard to generalise about a condition that takes in such a wide spectrum, from the highly intelligent but socially awkward adult to the profoundly learning-disabled child who will need lifelong support. But there are certain health issues that crop up so often that all those with autism, their advocates and medical professionals need to be aware of them.
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