Trust can be a dangerous virtue, but autism also brings with it other traits, including some that are not behavioral, that can spell disaster. In these cases, the monster lurks inside.
When he was four months old, Elias Tembenis had his first bout of seizures, the day after Christmas 2000.
Elias was diagnosed with seizure disorder and his parents, Harry and Gina Tembenis, soon learned that their son was autistic as well.
"We could see he was starting to change," Gina Tembenis said. Elias went from an active, laughing boy to a quiet child, fascinated by ceiling fans. Seizures were a frightening facet of his diagnosis.
According to Elias's pediatric neurologist, Dr. Ann Neumeyer, the associate director of the LADDERS program for people with developmental disabilities at Massachusetts General Hospital in Boston, up to 25 percent of children who have autism have seizure disorder as well. But she said that seizures typically occur after age 10.
By contrast, Elias had 45 seizures before he was 2 years old. The seizures became less severe and less frequent as he grew older, but they never stopped occurring.
"Leading up to it, it's almost like he knew what was coming," Harry Tembenis said. "I've never been more terrified in my life."
Sometimes, the seizures are caused by tiny ropes of fibers that form like tumors in the brain, a genetic syndrome called tuberous sclerosis, which is often seen with autism.
Elias did not have this syndrome, but there is a higher rate of seizures in people with abnormal brains -- such as those who have autism, mental retardation and cerebral palsy -- according to Dr. Shlomo Shinnar, professor of neurology, pediatrics, and epidemiology at Montefiore Medical Center in New York.
Shinnar said seizure disorders do carry the risk of sudden death, although it is rare. But he questioned whether it is wise to inform parents of this fact.
"Do you tell parents about the risk of death?" Shinnar said. "It's not really preventable."
Though Elias was unlikely to grow out of his seizures, treating them had significant benefits.
Hear Harry and Gina Tembenis tell their story.
"When seizures get worse, the autism gets worse," Neumeyer said. "When we have control of seizures, the autism behaviors get better."
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