The Dangers of Autism

Nov. 6, 2008 — -- Liane Willey's father always told her that, if she was ever in trouble, she should find a policeman and ask for help.

In college, Willey befriended a young campus policeman. Recalling her father's advice, she asked him to escort her home late one evening rather than walk alone. Instead, the officer drove away from campus, took her to his trailer home, and raped her.

"I don't get the warning signs. I don't feel the creepiness," said Willey, who has Asperger's syndrome, a mild form of autism. "I get lured into the dark places."

Failing to recognize social cues -- that a "creepy" man might not be safe to go home with, for instance -- is a classic example of how people with autism spectrum disorders can get into troublesome situations. And trouble can rapidly become dangerous.

Most people may not associate having autism with being in danger. But many of the 1.5 million Americans with autism spectrum disorders face potentially life-threatening issues as a result of their inherent traits and behaviors.

"[Danger] is not the first thing that comes up, nor should it be," said Dennis Debbaudt, a lecturer on autism for first responders. "You're thinking of a lot of things when your beautiful child is diagnosed with autism. It's tough to get through the first 90 days or six months or one year.

"But we can't ignore this," he said. "It's when we ignore risk management ... that you're in deep trouble."

Autism lends itself to guileless and trusting behavior, which makes people with the disorder prime targets for abuse, thievery and scams. According to the Department of Justice, people with developmental disabilities, including autism, have a four to 10 times higher risk of becoming crime victims and are twice as likely to be sexually abused as people without those disabilities.

Making matters worse, sexual assault crimes are already underreported. The Rape, Abuse, and Incest National Network estimates that only 300 out of an estimated 1000 rapes that occur each day in the United States are actually documented. Hampered by poor communication and language skills, people on the autism spectrum may never be able to speak out about abuse, even if they are not held back by feelings of shame.

The incident with the policeman was not the only time Willey was the victim of sexual assault. She was kissed and groped on two other occasions, once by a professor and once, years later, by the director of a play she was taking part in.

Following her professor's assault, Willey felt so disturbed that she became suicidal for a time. Her sense of disorientation ballooned to the point that she felt things were not as they seemed.

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"It's almost like a drug induced trip," Willey said. "I go to touch things and find it's not there. I turn around and it's a monster."

Physical Dangers Lurk for Those With Autism

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."

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.

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.

Autism Affects Pain Response

Self-injurious behavior can be another frightening consequence of being on the autism spectrum, because these individuals do not process pain signals the same way a neurotypical person would.

"A lot of individuals with autism have reduced sensitivity in the hands and feet," said Ian Paregol, executive director of CSAAC, citing examples when autistic people will stomp around or tap on walls. "They want to figure out where they end and that wall begins."

But while repetitive behaviors, such as tapping on walls or rocking back and forth, are hallmark behaviors of autism, the problem occurs when these behaviors escalate and the autistic person begins hurting themselves or someone else. And constant vigilance can be draining to a parent or caretaker.

"You don't get a break, and it can be draining," Shinnar said. "They need a lot of structure. Left to their own devices, their lack of ability to communicate in the social sense, even when they can talk, is when they get into trouble."

But leaving people on the autism spectrum to their own devices is one of the goals of the educational and therapeutic picture for a family, which can be the most challenging and frightening part of the disorder.

"As a parent, your nature is to protect," said Marguerite Colston, a spokeswoman for the Autism Society of America. "Sometimes fear of these risks ... can cause you to exclude a person with autism from their community.

"Our biggest sin is we're so protective."

Even after three higher education degrees, marriage, and three children, Willey said she can still feel uneasy, never quite knowing whether something is true or not.

Read/Watch the Entire Series: Autism in America

"I think some of the vulnerabilities are forever," Willey said. "I don't know if we learn not to be vulnerable, but we learn to cope with it."