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Iʼve heard anecdotally that adults with autism sometimes die unexpectedly.

In last weekʼs Science magazine (subscription required), I read a well-reported piece about sudden death associated with epilepsy and how poorly studied it is, even though it was first reported in 1868. According to the article, as many as 40% of people with frequent seizures die suddenly.

And that got me thinking: is there a connection here?

A significant proportion ― estimates vary between 5 and 40 percent ― of those with autism have epileptic seizures, so it would make sense that the sudden death observed in autism may be the result of epilepsy.

But I havenʼt been able to find much about whether this is true.

A PubMed search of “autism” and “sudden death” retrieves 19 papers, many of which are not relevant to my query. There is one intriguing abstract about a 20-year-girl with Rett syndrome.

The author, Roger Byard, says there are many potential problems associated with Rett Syndrome, including epilepsy and cardiac arrhythmias, but none that you can conclusively link to a death after the fact. He suggests, in fact, that “ʼComplications of Rett syndrome’ may, therefore, be the most accurate designation when individuals with this condition are found unexpectedly dead.”

I can appreciate that this is a particularly thorny problem to study, but surely there must be more information about this. Any of you know any more about this?