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.
The Autism Speaks study also “concluded that when epilepsy and autism occurred together, the mortality rates increased by more than 800 percent.” (1)
Patients with treatment-resistant epilepsy experience seizures earlier (about age 6). Also, about 54 percent of those with treatment-resistant epilepsy had motor skills delays and 72 percent had more language delays, compared to 35 percent and 65 percent of those with treatable epilepsy, respectively. They were somewhat more likely to experience development regression. (2)
Conclusions about Autism and Autism with Epilepsy
Autism Speaks Vice President of Clinical Programs Clara Lajonchere, Ph.D. warns that sudden, unexpected or unexplained death in autism is often, but not always, related to epilepsy and that caution should be used in interpreting published study results. (1)
Indeed, more study is required because the cause of sudden unexplained death in epilepsy deaths still remains unclear, and it is even more unclear when it comes to sudden unexplained death in individuals with autism who do not have a history of seizures. (4)
“It’s not fully understood why seizures can be deadly,” said Orrin Devinsky, professor of neurology, neurosurgery and psychiatry at NYU Langone School of Medicine and the director of the NYU Comprehensive Epilepsy Center. Researchers surmise that the seizures interfere with breathing, brain function and heart rhythms. (2)
While there are still more questions than answers related to sudden unexplained death in autism and SUDEP, studies out of the NYU Comprehensive Epilepsy Center and Autism Speaks demonstrate the need to further understand risk factors that may affect patients with autism. This may include eventual recommendations that all autistic children be tested for epilepsy.
Dr. Josephn Sirven, chair of the Epilepsy Foundation’s Professional Advisory Board, says that more research is needed into both autism and epilepsy so that treatments can be developed that will improve the quality of life for those patients.
1. Mortality Rate is Increased in Persons with Autism Who also Have Epilepsy. AutismSpeaks. Web. Retrieved Dec 12, 2013.
2. Many with autism also have treatment-resistant epilepsy. Goodwin, Jenifer. USA Today. Web. Retrieved Dec 12, 2013.
3. Difficult to Treat Epilepsy and Higher Death Rate Common for People with both Autism and Epilepsy Says New Studies. Epilepsy Foundation. Web. Retrieved Dec 12, 2013.
4. Sudden deaths in autism and epilepsy baffle researchers. Rudacille, Deborah. Simons Foundation Autism Research Initiative. Web. Retrieved Dec 12, 2013.
Reviewed December 16, 2013
by Michele Blacksberg RN
Edited by Jody Smith