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.
But as people with autism grow older and begin navigating the social world on their own, they are naturally in danger of falling victim to physical danger, crime, or social exclusion.
Jodie Bouvery, a board member of Community Services for Autistic Adults and Children, an aid and advocacy group in Washington, D.C., has an autistic son who was a "wanderer." When he was very young, Bouvery would often use a leash in public so he would not get lost.
"People really give you a lot of grief for that," Bouvery said. "There is not practical awareness in the community at large. It's not just losing a child. ... It's never to find him again."
People with autism tend to have poor impulse control and can wander at will, touching whatever they find interesting, irrespective of social norms.
Wandering, coupled with their affinity for water as a fascinating, interactive element, can put people with autism at risk for drowning. In fact, drowning is the leading cause of death in the autistic community, Debbaudt said.
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