Home >  Lifestyle

Sunday, July 13, 2003

By Anita Srikameswaran, Post-Gazette Staff Writer

"Hi! Where do you live?" asks Andrew Duch. There's seems to be a hint of urgency to the 8-year-old's question. He looks intently at the stranger sitting on a couch in his Penn Hills home. Andrew seems satisfied with the answer, and the conversation is abruptly over. He disappears.

"That's the first question he asks every adult," says his mother, Cindy Duch. She notes that he had been standing a little too close. "He has trouble with personal space."

	Andrew Duch is fighting through the wall of developmental problems built by autism. (John Beale, Post-Gazette) All About Andrew: A photo journal

In an earlier foray, Andrew couldn't quite work up to a hello. He circled the perimeter of the living room, burying his face into sofa cushions or into the carpet, not even peeking at the visitor. Sometimes, his mother says, he hides under the dining-room table.

Duch is candid with people, including her son, about what makes Andrew different.

"I want him to hear the word, know the word, not be scared of the word," though he doesn't really get it yet, she says.

"Autism."

Andrew, the elder of two boys, was born three months prematurely after Duch developed preeclampsia, a high blood pressure condition, during her pregnancy.

He breathed with a machine for six weeks of his first two months of life, which he spent in an intensive care unit. His parents learned to use oxygen monitors that he needed when he finally went home.

Doctors warned the first-time parents that their baby could have developmental delays, so they were not surprised that he didn't walk until he was 18 months old. At 3, Andrew babbled but didn't say any clear words, so his pediatrician recommended an assessment for speech delay at the Child Development Unit at Children's Hospital.

The night before the appointment, the Duches watched a video of "Mercury Rising," in which an FBI agent protects an autistic boy. Cindy Duch turned to her husband.

"I think that's what Andrew has," she said.

Her guess was confirmed the following day after a three-hour assessment. "There's nothing to prepare you, though, when you hear the doctor say that," Duch says. "And then you have to figure out what you have to do next."

	Resources for autism Autism Society of America (ASA), Pittsburgh Chapter, 4371 Northern Pike, Monroeville, PA 15146; e-mail: asapgh@aol.com; Web site: autismsocietypgh.org; 412-856-7223. The Web site Autismlink.com, featuring categories such as "New Diagnoses," "Local Research" and "Legislative Info"). Alliance for Infants and Toddlers, an early intervention case management program for children, birth to 3 years. Alliance for Infants and Toddlers, The Hough Building, 2801 Custer Ave., Pittsburgh, PA 15227; Web site: afit.org; 412-885-6000. Project DART (Diagnostic Assessment Referral and Treatment) is the Allegheny Intermediate Unit's special education program for preschoolers, 412-394-5736. Local Task Force on the Right to Education, 412-394-5817. ABOARD (Advisory Board on Autism and Related Disorders), Web site: 1-800-827-9385; www.aboard.org E-mail PHASE (Penn Hills Advocates for Special Education at PHASEgroup@aol.com

Cindy Duch will be talking about what she has learned on a parent panel at the five-day national conference of the Autism Society of America, which begins Wednesday and is based at the Westin Convention Center Hotel.

"If you can use what you've learned and save someone one or two steps, maybe their kids will get services faster," she says. "I wanted to be able to do that for other parents. You feel like you know what they're going through."

A California study found that the number of autism cases doubled in that state between 1999 and 2002. Research conducted by the U.S. Centers for Disease Control and Prevention found an autism disorder in three out of 1,000 children ages 3 to 10 in Atlanta in 1996 and almost seven out 1,000 children in Brick Township, N.J. in 1998.

Autism, says Cynthia Johnson, director of the Autism Center at Children's Hospital, is a developmental disorder of the brain that leads to difficulties with social interactions, language problems and "an array of atypical behaviors."

The hospital's child development unit diagnoses about 300 children from the area and neighboring states every year.

In hindsight, Johnson says, parents often describe one of two scenarios: the "really good" baby who's not interacting and the "challenging infant who's fussy and can't be comforted."

Affected children may not make much eye contact or may do so unusually, such as with a stare. They don't point or gesture while looking to a parent for a reaction.

"The other red flags early on are a lack of imitation and lack of pretend or symbolic play," Johnson says. Instead of choo-chooing a train along the floor, a child like Andrew might be fascinated by endlessly spinning its wheels.

In many cases, it's speech delay that triggers an assessment for autism.

During an appointment that can stretch to three hours, an expert interviews parents to learn about the child and then, while the parents fill out standardized questionnaires, plays with the child. Where possible, the clinic also gathers information about the child from other sources, such as speech therapists or preschool teachers. Other tests, such as brain scans, are performed if there is a medical need. There is no blood or imaging test to check for autism.

Johnson says that often a diagnosis can be made and given to the parents by the end of the assessment. About 60 percent of the children seen in the clinic turn out to have an autism spectrum disorder, meaning symptoms can vary from mild to severe and functioning varies from low to high.

After a chaotic mealtime, Cindy engages Alex and Andrew in a card game. (John Beale, Post-Gazette)

Some of their parents are not surprised, having anticipated bad news, and others are shocked. All are saddened, she says.

"After we devastate a family," Johnson says ruefully, "we go through all the services. We also write a pretty detailed report."

With a diagnosis in hand, families such as the Duches can start to access services.

Five years ago, when Andrew was assessed, his mother called ABOARD, the Advisory Board on Autism and Related Disorders, which was the only contact number she was given. Armed with information from ABOARD and an application for Andrew to qualify for state-funded services, Duch took the first steps into a new world.

Now, terms such as early intervention (intensive behavioral treatments to develop language and social skills at an early age), wraparound (government-funded psychological treatment services provided in the home or community), IDEA (the Individuals with Disabilities Education Act) and IEP (Individualized Education Plan) pepper Duch's conversation.

She quit her job because of Andrew's medical problems and is now a stay-at-home mom to him and his brother. Her husband works for PNC Advisors. Andrew's therapies, which include speech and occupational therapy, are covered by the school district and state funds. According to the Center for Autism Research, it costs $50,000 per year to care for a person with an autism spectrum disorder in Pennsylvania.

Largely because of parental activism, the paperwork paths to get services in place are becoming clearer. Waiting lists are still the norm, Duch says. Battles are still being fought to get more funding for mandated programs and to fill treatment gaps, and frustration is growing because private insurers generally don't cover medical expenses for autism.

To help Andrew, his bashful mother became involved with parent groups, first to seek support and then to offer it to others. She and other parents of special needs children in the Penn Hills School District have formed their own group, called PHASE (Penn Hills Advocates for Special Education), to advocate for them and help each other.

"It's like you join a club almost," Duch says. "Most of your information is going to come from other parents."

Speaks his mind

Among the first interventions after Andrew's diagnosis was speech therapy. Still, his mother says, he was 4 1/2 before his words were understandable. Since then, he seems to be making up for lost time.

"We wanted so much for him to talk, and now he doesn't stop," Duch says, chuckling. She knows parents whose children don't say "Mom" or "Dad" or "I love you" as Andrew does.

Some of his chatter is what experts call self-talk, which helps Andrew deal with transitions. Even seemingly small changes, such as going to his next class at school or meeting a new person, can be a challenge for him. With self-talk, he reassures himself and tries to organize his thoughts, explains Rob DePolo, Andrew's "TSS," or therapeutic staff support person.

"It's a behavior that's a lot like drinking coffee or tapping your fingers on a table or playing with your hair," DePolo says. "You might be thinking in your head. He'll verbalize it."

DePolo accompanied Andrew to first and second grade at Forbes Elementary School, a Penn Hills public school, and will be at his side for about the first month of third grade, which Andrew begins in the fall. Last year, a classroom aide worked with the children in Andrew's math class, Duch says.

DePolo's services, funded by the Department of Public Welfare, will be phased out of the classroom and a one-on-one aide will be provided by the district instead in keeping with Andrew's individualized education plan, which is developed by a team including parents, a teacher and a school psychologist.

Duch suspects that Andrew's behavioral problems would be better addressed by a TSS, but wraparound providers and some parents contend that the school district should be responsible for classroom services. So DePolo won't be spending 35 hours a week with Andrew anymore but will continue to see him after school.

For now, they are together regularly during summer vacation.

One sunny day, the two take turns shooting at a basketball hoop from spots marked in chalk on the driveway. Two misses mean going back to the beginning. Andrew has to be reminded of the rules several times, but he lofts the ball underhand, granny-style, with respectable success. When DePolo says the three chalk squares at the end of the driveway are too far from the basket, the boy stops playing and draws a line through them to be clear that they no longer count.

When Andrew's brother, 5-year-old Alex, tries valiantly to get enough power behind the basketball to reach the hoop, Andrew says, "Good job, bud. Good job." Earlier, Andrew had run into the house to complain to his mother that neighbor kids were stepping on his road. It's everybody's road, she answered. He went back out and told them to go to their own houses.

Andrew has to be taught how to make friends, how to play, how to greet someone. Through hard work, he has learned to make eye contact when he's talking to someone.

DePolo guides him through the social niceties and explains the rules of games. He sometimes has to tell other children that they can and should talk to Andrew directly rather than use him as a quasi-translator. For now, the boy doesn't make much effort to talk with kids his own age.

"How do you make somebody interested in the child sitting next to him?" Johnson says. "We can give him basic skills and teach him how to start a conversation, even how to maintain a conversation, but what we can't give him is that intrinsic need to interact, which most of us have."

Andrew's mother is worried that interaction will become harder as he and his peers get older.

"He'll still talk about telephone poles and stop signs, which don't interest most kids," Duch says. "Most kids are going to think it's kind of odd to be asking about telephone poles."

From some of the things Andrew has told her, such as where the driver lives, Duch suspects that he's chatty on the school bus, which he rides alone.

"He wants that rapport with people, the communication, but he won't know what to say," she says. "So he'll concentrate on something like the buttons on the bus."

Clues and cues

Conversations do not come naturally to people with autism.

"You're either having social collisions or fly-bys," as Dr. Nancy Minshew puts it. She's the director of the Autism Research Project at the University of Pittsburgh School of Medicine.

She says the autistic brain doesn't seem to realize that someone else could be having a different thought, or what that thought might be. That's the crux of social interactions.

"Their brains cannot make inferences about what other people think, feel and know," Minshew says. "They haven't a clue what we're thinking."

That missing piece can leave an autistic person vulnerable. Imagine a scenario in which an autistic person tries to make a friend by playing pool with him for money without recognizing the threat of a scam. Then imagine the pool shark holding the autistic person's textbooks hostage until more money, obtained from an automatic teller, changes hands.

It happened to one of Minshew's patients, who holds a doctorate but can't hold a job. He has little insight into what a client might want and has difficulty solving problems.

"Even very high-functioning individuals have that social impairment," she says. "They may have a very large and extensive vocabulary, but they don't get the gist of what's going on."

So Andrew can easily read a story aloud to his classmates, but afterward he can't explain what it was about. Alternative strategies, often incorporating visual cues, can help him figure it out.

For example, an exercise in one notebook is color-coded. A question and the sentence that contains the answer are highlighted in green. Another question-answer pair are in yellow. It's not yet obvious to Andrew that he can answer questions by looking back at the story he just read. Eventually, he may get the idea and no longer need the colors.

"He's very visual, very concrete," Duch says. "He learns differently."

And like about 20 percent of people with autism, Andrew is not retarded. People often assume that the two always go hand-in-hand. That's one of the reasons Duch has attended the school's open house since her son began kindergarten.

"I try to explain to [parents], as much as I can in the three minutes of open house that I have, that if they ever have any questions, just ask," she says. "I try to be open because I think it's better for him."

Duch has tried hard to give her son an environment in which he can learn. To that end, she asked the school district to make sure Andrew rode the school bus with no more than a few children, especially in the morning. For logistical reasons, he rides the bus alone.

"I'm afraid that his anxiety would increase with all the noise and overstimulation," she says. "He would have trouble coming down from that and focusing on his school work during the day."

To prepare for third grade, Duch took Andrew to meet his new teacher and will take him to see his new classroom a few times before fall. Every day during summer break, he has to do an hour of schoolwork or another activity that requires him to focus.

"Even if it's coloring," his mothers says. "Just something where he has to sit still and do it for that hour. I want to keep Andrew interested and on task about doing schoolwork."

Becoming functional

Back outside, Andrew becomes intrigued by the way DePolo has parked his car. His tires are partially on the sloped curb and the front ones are turned inward slightly.

"Why did you park like that?" he asks, but the boy doesn't wait for an answer. Andrew hops on his bike, helmet a little askew, and pedals up the block. He circles back, pulls in behind DePolo's car and carefully positions his bike tires on the curb. He climbs off, adjusting his tires so that the front one is angled inward. He checks his position against that of DePolo's car.

"That's how you parked, Rob," he says to the TSS, who is watching him from the front steps. DePolo agrees.

The boy hops back on his bike and parks again. And again. Each time, he chatters about it to himself, with occasional queries to DePolo, who tells Andrew that he's not going to talk about it anymore and doesn't.

"Andrew's behaviors just aren't typical," acknowledges his father, Jim Duch. "It kinda makes it uncomfortable when you're out in the public."

At a restaurant, for example, Andrew might get up to look at or touch something or want to ask people questions. Duch has found that helping him ease his curiosity works better than issuing an order to behave. He often reminds himself that his sons learn in different ways.

"Yelling doesn't do anything with Andrew," Duch says. "I have to tell myself to go over and explain to him what he did wrong, why it's not appropriate."

Some of Andrew's sensitivities seem incongruous, his mother says. He sneaked out to enjoy snow on his bare feet and wasn't fazed by the numbing cold, but he had a tantrum when the dentist tried simply to look into his mouth. His parents are grateful that he is comfortable giving and receiving hugs.

"Everybody thinks of autism as people sitting in a corner, rocking," Andrew's father says.

The experts, parents and clinicians know otherwise. Minshew knows an autistic man who regularly rides the bus and goes to the mall but doesn't interact with anyone there. People wouldn't know by looking at him that he had autism.

"He's got about 15 different phrases that he uses," Minshew says. "He talks in scripts. I know exactly what he's going to say to me."

Johnson has met autistic people with advanced degrees, some who can live independently and a few who are married.

"We're not all put on this earth to be social butterflies," she says. "We just have to have some basic skills to be functional in society."

Parents typically ask her how severe their child's autism is after she gives them the diagnosis.

"I call that the million-dollar question," Johnson says. "I've had families with a 2-year-old asking me if they need to build an apartment over the garage."

At this point, the experts aren't good at predicting which child undergoing intensive services will take off and which one will have a slower rate of improvement. She has had patients whose IQ scores jumped up by 20 points, probably because the children were diagnosed early and were taught basic skills that they wouldn't otherwise have learned.

And research into the workings of the autistic brain are under way, as are projects to identify the responsible genes, Minshew says.

"Sometime in the next 50 years or less there will be a chemical developed to correct brain development," she predicts.

Meanwhile, Andrew's parents take one day at a time.

"I want him to be out there, to be independent, for people to accept him," his father says. "Sometimes it's a little depressing."

"I don't want to be let down, but at the same time I want to give him the benefit of the doubt," his mother says. "He has shown me he has so much potential by things that he's done, I don't try to guess."