The Dangers of Autism

"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."

Autism Dangers Persist

The Tembenises were diligent about caring for Elias's seizures and autism alike, trying different treatments and changing his diet. By the time he was seven, Elias only had about three short seizures each year. His autistic behaviors also improved dramatically in that period.

"He became so independent, strikingly so," Harry Tembenis said. "Every day was met with new games."

"He was more engaging, he wanted you to play with him," Gina Tembenis said. "He'd just gotten back his first spelling test, which he got a 100 on."

But the seizure disorder was always lurking in the background.

In November 2007, the Tembenises took Elias to the hospital to check out a sore throat for strep. At the hospital, after he had a throat culture to test for strep throat, Elias started having seizures. Two short ones were immediately followed by a longer seizure that went on for 75 minutes.

Elias went into cardiac arrest and died. His brain had been damaged to the point where it showed no activity.

"It was really, really unexpected," Gina Tembenis said. "We've been dealing with [the seizures] since he was tiny."

Harry and Gina Tembenis have since spoken many times about their son and are active in raising funds to support families who live with autism spectrum disorders.

As parents, Harry and Gina Tembenis said they did everything they could for their son. But some parents don't just do everything they can; they may try to do everything, period, to care for their vulnerable child.

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