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Left Without 

One New Orleans mom says that her autistic son is facing his 18th birthday with few skills and fewer services. Autism advocates say autistic adults rarely get the help they need.

The police didn't know what to make of Terry Wharton when they found him last June, wandering near the I-10 bridge in eastern New Orleans.

His mom, Dianne Huntley, says that, since Terry was wearing only his underwear and acting strangely, the police didn't know if he was on drugs or what exactly was wrong with him. They took him to Charity Hospital.

She guesses, from the police report, that it was around 4 a.m. when Terry slipped out from under his covers, left his bedroom with its barred windows and walked to the front door, which he unlatched. He then scaled the sideyard's fence and began to run.

"Everybody has a different say on why he ran," says Huntley. "Maybe he's a teenager and just like any teenager he wanted to go."

Huntley's son Terry is a teenager, a tall 17-year-old. But Terry is autistic. So he doesn't understand some elemental things -- like looking both ways for cars. He rarely speaks. Before June, he had never left the house on his own before.

Terry was born in 1985. Huntley thought he couldn't hear and took him to Children's Hospital, where he was diagnosed with autism in 1988, just before Dustin Hoffman's character in Rain Man gave many Americans their first look at the disorder. Huntley remembers the movie's release. "I guess that's when I started really hearing about autism," she says. "Watching that movie gave me hope that Terry might have a gift. Now I know that he doesn't. Lots of others don't either."

It's estimated that only 10 percent of autistic kids are savants like Dustin Hoffman's character, Raymond, who could count cards in a casino or calculate the number of toothpicks spilled from a box. Most children -- and their parents -- struggle with autism's challenges without those special talents.

Even a decade ago, autism was considered a relatively rare condition. Up through the early 1990s, advocacy organizations like the Autism Society of America estimated that autism affected approximately 1 person in 2,500. Within the past few years, the Society adopted a much higher figure -- 1 out of 500.

That's because, for unknown reasons, the number of autistic kids has been rising. Last fall, a study by the University of California-Davis found a 273 percent increase in the number of autistic children entering that state's treatment centers within a 10-year time span.

Autism advocates are acutely aware of these new cases. But they are adamant that older kids like Terry not be forgotten. In July 2001, the Autism Society of America issued a position paper on what they called "the national crisis in adult services for individuals with autism." The Louisiana chapter of the Autism Society has devoted a committee to the topic.

"Certainly, services in general are lacking in this state," says Julie Bourgeois from the Autism Society's Louisiana chapter. But at least during childhood, federal law mandates that schools provide education and services to autistic kids. After that, there is almost no vocational training, no job services, no kind of continuing education, and no community-living homes, according to Bourgeois. "We really have nothing for adults," she says.

A transition team is supposed to move kids from school into the "real world," says Bourgeois, but making that transition is nearly impossible if there's nothing to transition to, she says.

Dianne Huntley knows full well that Terry's needs won't stop at 18, even if most programs do. "I get all teary-eyed," she says, "because it hurts. I try to get him all the help I can." And for Terry to progress into adulthood and maybe even a job, she believes, will require more help, not less.

Huntley says that she has no idea what sort of job Terry could do. Because he isn't interested in much of anything.

"Except the radio. That's going to be every night," she says. Huntley bought Terry a little transistor radio when he was 6 or 7, and he fell in love. New radios have replaced worn-out models over the years, but Terry's affection has never waned. He loves to turn the knob on it at night. Rap, talk radio, classical, soul -- he listens to them all, for a while. When he finds something he likes, he'll listen until it loses favor. Then he'll tune to something else.

The radio is for night only, says Huntley. "If I turned on the radio now, he'd turn it off." She's also not allowed to sing or dance along with his radio, she says. If she does, he'll turn it down.

Temple Grandin doesn't know Terry personally, but she can explain some things about his behavior. Grandin is an assistant professor at Colorado State University. She's also autistic. For her, hearing is like a hearing aid with the volume control stuck on "super loud," she says. About a decade ago, Grandin wrote a book called Thinking in Pictures. It's considered a groundbreaking explanation of how autistic people perceive the world.

"People with autism have a lot of sensory problems," she says. "Like certain loud noises may bother them; fluorescent lights may bother them because they see flicker in the fluorescent lights. They can see the TV screen scan, like a discotheque flickering on and off."

As a result, many autistic people live in a world where their sensory systems are oversensitive and distorted, she says. Some autistic people -- especially nonverbal people -- can't hear detail in speech, she says. "Like if I said, 'The dog walked down the street,' they might be hearing 'The og awked awna eet.' Their sensory information is coming in all garbled and jumbled. And certain sounds -- especially high shrill noises -- hurt their ears." In some cases, vision is also garbled, she says, like looking through a kaleidoscope.

Autistic kids try to block out that confusing world with repetitive behaviors, like rocking or hand flapping, she says. "You know when you tune into a really bad TV station -- the sound is all terrible, the picture's terrible and it kind of fades in and out? Well, you would have a hard time too if that's how you experienced the world."

It's no wonder that most autistic people experience anxiety, she says.

Huntley sees that in Terry. A few years ago, he started crying for a few hours every day. No one has been able to figure out why. Doctors think he might be depressed. Huntley wonders if he's just bored.

Grandin can relate. She experienced intensified anxiety during adolescence "when the hormones hit." Terry could be experiencing a similar sort of step-up in anxiety, she says. "Autistic kids have a lot of fear," she says. "They have emotions, and fear is often one of their main emotions. They can panic really easily, the way a horse can panic."

Often, when Grandin is explaining a point, she makes comparisons to animals. She says that her disorder, along with her studies in psychology and science, helps her better understand how animals see, react and behave. She earned a doctorate in animal sciences and now makes a living designing livestock facilities.

With disorders like autism, the skills of individuals can differ widely along a spectrum. "Autism is very variable, from an Einstein to mentally retarded and very, very severe," says Grandin. Grandin's abilities fall at the higher end of that spectrum. She also credits early intervention and antidepressants for helping her overcome the disorder.

Terry is lower functioning than Grandin. But he too has been on various prescriptions since he was quite young. Recently, he's become calmer, says his mom. He doesn't tear curtains off the wall or break tables anymore. For that, she credits the staff at the New Orleans Adolescent Hospital, who worked with him and adjusted his medication shortly after he ran away.

Grandin says that the best thing for autistic children is structure. "The worst thing you can do with an autistic kid is to let him sit in the corner and just do his own thing all day," she says. "Because he'll just sit there and twiddle or spin a dime or spin on something all day if you let him."

Huntley wishes that she had been able to get Terry more help early on. At the time he was diagnosed, she was working for some nuns, she says, and they suggested that she take Terry to stay with a woman who could help him with behavioral training. "Me, not wanting to give up my baby, didn't do it," she says. It's a decision that she now has some regrets about. "Who knows?" she says. "He might be talking now."

She does not, however, have doubts about Terry's ability to learn. Because Terry is able to understand her. He goes to bed when she tells him, he gets his bath ready when she tells him to.

Yet Terry has spent very little time in school, she says. That's because, starting in about third grade, the teachers started calling her, nearly every morning. "By the time the bus got there, the phone would be ringing, saying, 'You'll have to come get Terry,'" she says. "It got to the point where I was going to get him every day.

"His teachers would call and says, 'He's crying; he's hitting his head," she says. "That is what autistic children do. How can you put him out of school for that?" Huntley knows that in some school districts, autistic kids have teacher's aides devoted specifically to them. He's never had that, she says.

Local autistic kids simply don't get one-on-one aides, say local school advocates like D.J. Markey. "Orleans Parish takes the position that they don't do that," says D.J. Markey, who with his wife, Ursula, and their organization, Pyramid Parenting, trains parents how to deal with schools and special-needs programs. Orleans Parish Schools did not return calls by press time.

Huntley has almost given up on the school system. She is now looking beyond that. She's heard, for instance, that many nonverbal autistic kids take easily to the computer, especially ones adapted for autistic kids with hundreds of picture images. Terry's on a waiting list for a computer, she says, but she doesn't know how long that list is, she says. She thinks a computer would allow Terry to express himself at a higher level, to tell her the things she would love to know -- "like what he feels and what he thinks."

Huntley may be waiting a while. Karen Duhon, who has a 21-year-old autistic son, works with the Autism Society's Louisiana chapter on getting services for adults, "The lines for computers are very, very long. It can be years."

Over the years, Huntley has received help from the staff at a local nonprofit organization called For Better Life. Then the staff at the adolescent hospital connected Huntley with Developmental Neuropsychiatric Program-Outpatient Services, better known as DNP. At DNP, Terry has his own doctor, a case manager there that Huntley can call in times of crisis, and a social worker who comes out once a week.

The social worker helps Terry work through bad habits, says Huntley. Like the garbage thing. "He likes to clean up," says Huntley. "But he would throw garbage behind my dresser or into the neighbor's yard." The social worker has tied some garbage bags in targeted areas, and Terry is now using them, Huntley reports.

But once-a-week visits may not be enough. Huntley would like to see Terry receive intensive individual attention, something she's trying to get from another local program. Each time a new person enters Terry's life, there's new promise, she says. "Maybe one day he'll get somebody who'll put some effort in and work one-on-one."

Duhon says that even if a parent has the proper funding -- typically through Medicaid -- this kind of searching and waiting is common. "There's nothing out there for our kiddos once they exit the school system. My son is in that position this year. We don't know if we'll be able to get the proper staffing for him. You have all this stuff on paper, but organizations often don't have persons to back it up or they don't have the qualified persons to back it up." Even if the organizations exist, says Duhon, it's not uncommon to find staff people who are inadequately trained, especially to deal with low-functioning kids.

The Louisiana Center for Excellence in Autism was formed in July 2001, partly to address the need for training throughout the state. "Our role here is to provide training for existing service agencies and parents," explains Bart Sevin, the center's director. "With the increasing prevalence of autism reported over the last 20 years, there's a pressing need for staff development across the country and all around the world," he says. The center, which was established as a result of a partnership between the Louisiana Department of Health and Hospitals and the Louisiana State University Health Sciences Center, is currently pursuing additional funding in order to make that an actuality.

Until the day that Huntley and Terry secure a computer or receive one-on-one assistance, mother and son will continue with their routine. When Terry wants his bath, he goes into the bathroom and puts out his bubble bath, towel, toothbrush, soap and mouthwash. If he wants a sandwich, he puts out the jars of peanut butter and jelly. Occasionally, he'll pour his own bowl of cereal, but he hasn't quite mastered that yet -- "he always overflows the milk," says Huntley.

Dianne Huntley clearly adores the young man who stands just across the living room, rocking from foot to foot, his hands folded on his mouth. He stops rocking and clicks a little with his lips, then starts rocking again.

"I love him just the way he is," she emphasizes. "I'm crazy about him. But I wish he could get some help."

click to enlarge "Watching Rain Man gave me hope that Terry might have a gift," says Dianne Huntley. "Now I know that he doesn't. Lots of others don't either." - TRACIE MORRIS/YOUNG STUDIO
  • Tracie Morris/Young Studio
  • "Watching Rain Man gave me hope that Terry might have a gift," says Dianne Huntley. "Now I know that he doesn't. Lots of others don't either."
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