Policing kids with autism is a new challenge on the beat

Shawn Doherty  —  7/16/2008 8:09 am

A barefoot girl in her nightgown is picked up wandering along a dark Dane County highway. Sheriff deputies have no idea how the little girl got there, who she is, what happened to her, or where to take her.

A young man walks out of a camp for adults with cognitive disabilities and into the woods. It takes thousands of searchers a week to find Keith Kennedy -- naked, weak, covered with scratches and ticks, but alive.

A 7-year-old with blue eyes slips out of the basement of his house in Saratoga. On the fifth day of a massive search, rescue dogs find Benjamin Heil in a nearby pond, drowned.

These recent Wisconsin cases all involved individuals with autism, a devastating brain disorder that impairs judgment and communication. Over the past decade, the number of children diagnosed with this disorder has multiplied tenfold, and the national Centers for Disease Control now considers autism to be a public health crisis. Autism frequently wreaks havoc not just on a child's entire family, but on law and safety enforcement in the streets. The problem is expected to get worse as this population grows up.

Today, the number of children diagnosed with autism has soared to one out of 192 in Wisconsin, and across the state, law enforcement and safety officials report more and more of these confusing situations on the beat. According to a 2001 bulletin from the FBI, individuals with autism have up to seven times more contact with law enforcement than others. And police officers don't always know what to do.

"She looked just like a normal kid, but she wouldn't talk to us or engage with us," recalled Lisa Antoniewicz, deputy chief of the Deer-Grove EMS, who ended up reuniting the child in the nightgown with her mother. "It was very odd and very difficult. We didn't know if she had been abused or dumped on the highway, or what had happened to this little girl."

Next week, the Dane County Sheriff's Office will launch an electronic tracking program called Project Lifesaver that should help unravel these puzzling encounters. Participants in Project Lifesaver -- most of whom have autism, Alzheimer's, or Down syndrome -- will be fitted with personalized bracelets that emit tracking signals 24 hours a day. In an emergency, trained personnel can use radio antennae to hone in on the signals within minutes. Already in use in a handful of other Wisconsin counties, as well as in parts of 42 states and Canada, Project Lifesaver boasts a 100 percent success rate in finding 1,708 missing people over the past eight years, according to Tommy Carter, a former police officer in charge of training for the Virginia-based organization.

The launching of Project Lifesaver caps a year of training sessions offered by the Dane County Sheriff's department and other local municipalities. Led by parents of autistic children, these sessions are aimed at teaching police, firefighters, ambulance crews and other safety officials across the region how to recognize and deal with the confusing behaviors of autism. "There are so many more people out there with autism that we decided we needed to be proactive rather than reactive," said Sgt. Lorie Wiessinger, director of the Dane County Law Enforcement Training Center. "These days, we need to be almost like social workers. We need to be sensitive and in front of the changes happening in our community."

Startup costs for Project Lifesaver in Dane County, which will be covered by donations and grants, total about $8,000, Wiessinger said. Maintenance of the batteries worn by participants adds about $300 a year for each client. Wiessinger figures the program will cover about 26 participants in its first year and grow by about 10 each year afterward. But an old-fashioned search costs much more, officials said. The hunt up north for Keith Kennedy racked up almost $30,000 in overtime for rural Burnett County. Food and a semi-trailer of water for volunteers looking for Benjamin Heil in Wood County cost nearly $26,000.

Supporters of the program say Project Lifesaver will streamline searches in crowded urban areas like Madison as well as in rural areas, where vast stretches of cornfields and woods, and brutal winter temperatures can -- and have -- killed a missing person in hours. "You can go for miles up here without running into a house or a road," said Deputy Eric Peterson in Taylor County. "It makes it a pretty massive effort to do a search." Peterson said a recent 24-hour search for a missing hunter cost the county $1,500 an hour. But the main benefit of Project Lifesaver, which covers 12 people in his rural area, is what Peterson calls its "amazing" recovery time. The odds of survival drop dramatically if a missing person is not found within 24 hours, Peterson said. A couple of summers ago, an autistic boy went missing in Medford, about 30 miles west of Wausau. Project Lifesaver located him less than 30 minutes later, hiding in his own basement under a pile of blankets.

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he young man lost in the woods up north spoke only four words, loved Curious George and had the cognitive ability of a 3-year-old. When Keith Kennedy ran away from home in urban Minneapolis, his family knew to look in the local McDonald's. But in the wilderness around his camp, nobody had a clue. To this day, deputies are still trying to recover his clothes. Thousands of searchers joined by helicopters, ATVs, canoes, cadaver dogs and horse teams scoured marshes, rivers, lakes and woods full of poison oak, brambles and mosquitoes to track Keith down.

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could have been standing on him and I wouldn't have known it," one searcher grumbled. After seven days, they found him in brush they had already searched four times. Sheriff Dean Roland, who lead the effort in Burnett County, suspects part of the problem was that Kennedy was moving and hiding from his searchers. "It was like looking for a needle in a haystack, and we didn't know which haystack to look under," he said. Roland, who expects to get "more and more of these calls," is now looking into electronic tracking programs, including Project Lifesaver.

Minutes can mean the difference between joy and tragedy in these searches. Many autistic individuals are fascinated by water but oblivious to its dangers. Drowning is the leading cause of accidental death among people with autism. A few weeks ago, when an east-side Madison neighborhood heard that an autistic boy in dinosaur pajamas was missing, local families rushed to the Yahara River to head him off. That was the right thing to do, say veterans of such searches.

Sgt. Dave Laude of Wood County was one of the deputies working overtime looking for Benjamin Heil last summer. He figures the boy, who never could sit still for church services, made a beeline for the pond as soon as he escaped his house. Laude has seen plenty in 31 years of law enforcement. But finding the boy's body hit him hard. "I went into the field and had a good cry," he said.

Would Project Lifesaver, which was just getting started in the county, have saved Benjy's life? There was a silence. "There's enough grief and guilt already," Laude finally said. "You can speculate all you want if it would have made a difference -- we think it could have, but that's all hindsight. Nothing's going to bring that little boy back."

Benjamin's death has raised awareness of autism across the state. Dane County looked into Project Lifesaver, Wiessinger said, partly because of alarm over that case and another like it a week later across the border in Minnesota, where a 5-year-old autistic girl drowned in a pond yards from her home. In Benjamin's home county, eight people are now signed up for the Project Lifesaver program, Laude said. Many more donated to it. Benjamin's mother was one of them.

"I am learning more about autism every day," Laude said. "It's amazing what these families have to live with. One mother came into my office to sign her son up. The first thing she did was walk around shutting all the doors so he couldn't get out. Can you imagine having to live like that every day?"

Laude said another local family built a high fence around their home to prevent their autistic son from running away. The boy dug a hole under it. Vicky Kaczmarek's son figured out how to climb over the fence on their dairy farm outside of Green Bay. So she put a giant net on top of their yard. Kaczmarek and 11 other families with autistic children are currently trying to raise funds so Project Lifesaver can protect them in Brown County.

Families living with autism must transform their homes into virtual fortresses. "It's not that we're abusive. We're just trying to keep our children safe," explains Chris Lacey, who put special doorknob covers and double locks on the windows and doors of her Deerfield home. "These kids are little Houdinis."

On a recent morning, Lacey could barely keep up with her 4-year-old son, Sam, as he rushed around. Several times she grabbed dog food away from him before he ate it, once he scaled a book case before she could catch him, and minutes later when his brother Jamie came home from summer school, Sam was right there, waiting to dash out the open door.

No matter how vigilant parents are, children with autism get away. In fact, escape stories are family lore. "He was running, and his therapist was running after him, and I was running after both of them," sighed Lacey, recalling one afternoon when Sam got loose. "I'm so afraid one of these days he'll just run right into a car."

Nancy Alar's tale sounds like a classic Marx Brothers caper. She and her husband were at a shopping mall when their son disappeared. "At one point Matt was going up the elevators, and we passed him going down!" recalled Alar, who lives in Cottage Grove and is a former president of the Autism Society of Wisconsin. Families laugh, but in the moment, these episodes can be not only terrifying but humiliating. When the Alars finally caught up to Matt, an out-of-breath security guard running after Matt scolded the parents for not disciplining their son better.

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andering is just one of the problems law enforcement runs into with this rapidly growing population. Officers must often make snap judgments about confusing behaviors. Take the following real-life scenarios several police officers described. Was an agitated young man tearing off his clothes a criminal high on drugs, or an autistic patient upset by the flashing lights and sirens? Was the woman hovering over cans in the food store a shoplifter, or someone with autism trying to line them up in neat order? Was the teenager lunging toward a police officer trying to grab his gun, or trying to touch his awesome shiny badge?

Misunderstandings are common. Matt Ward, who has autism, has been fascinated by the mouths of dogs for over a decade. Ward has a degree in mathematics from the University of Wisconsin-Madison and a job at the Madison Public Library downtown. But some people find his gait, his behaviors, his lack of eye contact and his halting language unusual and frightening. Recently he followed a couple walking their dog in downtown Madison and asked if he could handle their dog. They called the police. Luckily, Matt was able to give his mother's name and phone number to the police officer, and Nancy Alar explained that her son was autistic. "People find his behavior weird, but he means no harm," Alar said. "The situation is still very upsetting for him."

Adding to the confusing picture is the fact that some people with autism look normal, yet lack normal communication and cognitive skills. They don't necessarily recognize uniforms. The flashing lights and sirens of emergency vehicles, or the touch of a medic, can send them into a panic. Laughing rather than crying might be a response to pain. If ordered to stop, someone with autism might flee. If asked if he wants to waive his rights, he might wave his right hand.

Four out of five children with autism are boys, and this growing male population can be a real challenge for law enforcement officers who have had little training in recognizing this disorder. "We've made progress, but there still is a terrific need for more education of law enforcement officers," said Dennis Debbaudt, author of Autism, Advocates, and Law

Enforcement Professionals, and the speaker at a recent training for first responders held at MATC. "In some cases where first responders have not been trained, things have gone tragically and fatally bad."

In the Madison training session, Debbaudt cited the case of Calvin Champion Jr., a 32-year-old man with autism who suffocated in police custody. Unaware that he was autistic and incapable of responding to their commands, Nashville police used pepper spray and what courts later ruled was excessive force to subdue Champion. His family was awarded $4.4 million in damages.

The potential for such lawsuits scares Wiessinger. "People with autism" don't understand what's going on, so they don't respond to commands. They're not following directions, but it's not because they're noncompliant," Wiessinger said. "The biggest danger I see is that autism can mimic the way someone high on drugs might act. Someone with autism could run around with no clothes on or act highly agitated. Someone high on drugs who might become violent, we use a taser. But someone with autism we don't want to taser. You don't want to use brute force in a situation like that."

Shortly after attending Debbaudt's training session, Captain Tim Ritter got a 911 call from the grandmother of a 13-year-old in the town of Dunn. The child was throwing and breaking things, and threatening his grandmother. Without the autism training they had just received, Ritter said in an interview, his officers would have put the violent young man in handcuffs and charged him with disorderly conduct. Instead, they quickly realized that he was autistic, calmed him down, and called his caseworker. "That made us feel pretty good," Wiessinger said. "That's the kind of situation that could have ended badly. Our training is paying off."

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et, local families of children with autism say much more awareness and education is needed. At an autism training session she ran for McFarland emergency technicians and firemen last month, Lacey asked participants if they had any experience or formal training in dealing with autism. Only one individual raised his hand. "After Benjy's death, I realized that if I wanted people in my community to be trained, I'd need to do it myself," Lacey said. Over the past year, Lacey has founded an organization dedicated to training first responders, the Autism Alliance for Local Emergency Responder Training (Autism ALERT Inc.)

She opened her program in McFarland last month with photos of two adorable children. "Both of these boys are my sons," she said. "Can you tell me which one has autism?" Nobody could.

But then Lacey catalogued Sam's unusual behaviors, many of them the classic signs of autism. Sam, 4, doesn't speak. He constantly is in motion. He might scream if he is being restrained. He has trouble sleeping at night. If he's hungry, he'll swipe a banana off a store shelf. He takes off his clothes in public -- "maybe it's cute now, but it won't be when he is an adult," she said. And she noted that her son is more at risk than other children of ending up a victim of a crime: Autistic people are 12 times more likely to be the victims of a robbery and 80 percent more likely to be the victims of sexual assault.

Participants joined in a series of role-playing exercises that mimic real-life situations on the street. In one, a volunteer pretended to be Sam, lost. He wandered wordlessly around as frustrated firemen and medics used a teddy bear, picture cards and singing to try to communicate. What finally worked was realizing "Sam" was wearing a medical alert bracelet with identification, and telling the boy in a calm voice that his parents would be called to come get him.

The session ended with a meeting with Calvin Aertes, an 8-year-old with autism who lives just a few blocks away from the McFarland Fire Department. These kinds of meetings are crucial steps in helping first responders and families with autistic children get to recognize and know each other before a crisis, so that they can work out an emergency plan, Lacey said. As his mother, Pam, spoke to the first responders, Calvin walked around and around the firehouse. Frequently he jiggled the closed doors, trying to get out. Calvin seemed oblivious to everyone except his mother, though every now and then he would stop and gently tap someone on the back. He then continued circling the room, giggling every now and then, humming and flapping his hands in a repetitive motion that his mother called "stimming."

Calvin was wearing a special backpack with extra straps, Pam explained, so that she could grab him if she needed to stop him from dashing away or if he started to become anxious or violent. "He's a runner," she said. "I've had to be an extremely vigilant, overprotective parent."

Sam and Calvin will be the first to receive new bracelets Wednesday, July 23, when Project Lifesaver gets off the ground.

Their families, who have been lobbying for the program ever since they heard of Benjamin Heil's drowning last year, are thrilled. "One of my biggest fears was that he would just run off. He's not afraid of cars," Pam told the first responders in McFarland. "We would do anything to make his life better. Raising him is a very big challenge, but he's a wonderful, wonderful little guy. We love him so much ... " Pam paused, overcome by emotion. "Thank you for helping us take care of him."

Shawn Doherty  —  7/16/2008 8:09 am