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Autistic Children with Epilepsy: Higher Risk of Unexplained Death

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Unexplained Deaths Attributed to Autism, and Autism with Epilepsy

Tyler, a 17-year-old autistic boy, was found dead by his mother after possibly having suffered a seizure in his sleep. When the autopsy report came back, it said "no apparent cause for death." An article about this sad situation was published by The Simons Foundation Autism Research Initiative.

This is what’s known as a sudden unexpected or unexplained death in autism or, where the case involves a known diagnosis of epilepsy as well as autism, sudden unexpected/unexplained death in epilepsy (SUDEP).

Disturbingly, unexplained deaths in people with autism are not uncommon. In fact, deaths in autism-only people are 2.4 times higher compared with the general population. (4)

A study conducted by Autism Speaks also showed that in 2006, 2007 and 2009, 50 percent of recorded deaths in California in otherwise healthy individuals with autism were attributed to unknown causes. (4)

SUDEP “is believed to be responsible for the deaths of more than 4,000 people in the U.S. each year, most of them younger than 22 years. Sudden death is at least 20 times more common in people who have epilepsy compared with the general population ...” (4)

Living with Autism and Epilepsy

The Centers for Disease Control and Prevention estimates that autism spectrum disorders affect about 1 in 110 children in the United States (or about 8.25 percent of children), and epilepsy impacts nearly 3 million Americans. (3)

Autism Speaks reports that as many as “one in 20 children diagnosed with autism by age 3 could either already have epilepsy or develop epilepsy later in life.”

People who have both autism and epilepsy, which is up to 39 percent of people with autism, have more treatment-resistant seizures and a much higher death rate than people living with just one of the conditions. (1,2,3)

Interestingly, more than 50 percent of people with autism who don’t experience clinical seizures demonstrate unusual, epileptic-like, brain wave patterns. (4) Researchers do not know, yet, whether these unusual brain wave patterns bring with them an increased risk of sudden death.

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We value and respect our HERWriters' experiences, but everyone is different. Many of our writers are speaking from personal experience, and what's worked for them may not work for you. Their articles are not a substitute for medical advice, although we hope you can gain knowledge from their insight.


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