Sunday, February 07, 2010
A weighty diagnosis
Their young daughter's autism diagnosis has taken a toll on Karen Wu and Ben McConnell, but they say her first year of intensive behavioral therapy has made all the difference.

At right, Karen Wu and Ben McConnell give Molly her allergy medicine and a small dose of melatonin to help her sleep at night. Molly has never slept through a full night, but her parents say keeping her on a strict bedtime schedule helps out. Below, Wu helps Molly put her shoes on as Peter gets his out before they go outside to play. Peter is a great help for Molly, Wu says, often deciphering what she says and helping to show her how to do things.

Photos by JEANNA DUERSCHERL The Roanoke Times
Since Molly began school at the Blue Ridge Autism and Achievement Center, her parents have seen great advancements but say she still has a long way to go. Molly spends half a day with a therapist at the peer-model center, down from a full day when she first started there last year.

Ben McConnell and Karen Wu say they wonder where Molly will be in a year or five years and whether she will be able to one day get a driver's license or go to college. Molly has made progress at the Blue Ridge Autism and Achievement Center, but her parents are uncertain whether she will enter kindergarten with Peter in two years.

Photos by JEANNA DUERSCHERL The Roanoke Times
Molly plays with her mother in the living room of their family home. Molly struggles with some concepts during play, and her mother Karen Wu sometimes finds it difficult to explain those things to her.

Molly and Peter McConnell, 3-year-old twins, play with puppets in their preschool class at the Blue Ridge Autism and Achievement Center in Roanoke County. Molly has autism, while Peter is unaffected.

Photos by JEANNA DUERSCHERL The Roanoke Times
Ben McConnell rocks his daughter, Molly, after bath time. Molly, now 3, was diagnosed with a moderate form of autism when she was 2.

At right, Karen Wu and Ben McConnell give Molly her allergy medicine and a small dose of melatonin to help her sleep at night. Molly has never slept through a full night, but her parents say keeping her on a strict bedtime schedule helps out. Below, Wu helps Molly put her shoes on as Peter gets his out before they go outside to play. Peter is a great help for Molly, Wu says, often deciphering what she says and helping to show her how to do things.
When Karen Wu found out she was pregnant with twins, she and her husband, Ben McConnell, envisioned the children growing up side by side and doing all the same things together -- from starting kindergarten to getting driver's licenses.
The twins, Molly and Peter, are 3 years old now. They both attend preschool at the Blue Ridge Autism and Achievement Center in Roanoke County. Wu and McConnell are uncertain whether the twins will enter kindergarten in a public school together in two years.
Molly has an autism spectrum disorder, a neurological condition that affects communication, social interaction and behavior. The Centers for Disease Control and Prevention estimates an average of one in 110 children in the U.S. is diagnosed with autism spectrum disorders each year, and boys are affected four times as often as girls. It is called a spectrum disorder because it affects individuals differently, ranging from mild to severe.
Molly's diagnosis falls in the moderate range. Peter is unaffected by autism.
The cause of autism is unknown and there isn't a cure, but thousands of Virginia families are caring for children with the disorder. Many of the families struggle to pay for therapies and other out-of-pocket costs not covered by health insurance. Virginia's lawmakers last year voted down bills that would have required insurance companies to cover treatments, but one proposal is still on the table again this winter.
Looking at the Roanoke twins, it is difficult to detect much of a difference between them. Molly is considered high-functioning: She talks, she plays and she is toilet-trained. She greets guests and gives hugs. According to McConnell, Molly has made a complete turnaround since starting intensive applied behavior analysis therapy a year ago at the achievement center.
Molly and Peter have attended the center's peer-model preschool class since summer.
"Most [peer models in the preschool class] are employees' kids," said Angela Leonard, who started the center in 2002 after her son was diagnosed with autism. "We want them there so our autism kids will follow their lead. They might not know what the teacher says but can follow what the peer models do."
At school, Peter stands up, puts his right hand across his midsection and recites the Pledge of Allegiance with as much intent and gusto as the youngster can muster. Molly follows the lead of her preschool classmates and stands up, but she doesn't put her hand over her heart and she doesn't say the words. Instead she stares somewhat blankly ahead.
"I think it's good she can mimic her classmates, but I'm looking forward to the day when she really knows what she is doing," Wu said.
There's a good chance Molly has learned the words to the pledge, but getting her to recite it at the right time can be challenging. It is just one of the mysteries of autism spectrum disorders. Molly has the ability to memorize and retain the words; later she throws her head back and belts out the words to "Row, Row, Row Your Boat" while riding a tricycle in the school's gymnasium.
"You can just tell his brain is clicking at a faster rate than hers," McConnell said. "She just still has a hard time grasping some things -- things we try to tell her to do, or just stuff that a lot of us take for granted, stuff that she doesn't quite get yet and we're not really sure she ever will. We struggle with that."
A financial strain
Molly's parents, both 39 years old, said they have been fortunate financially. The couple dipped into their savings to pay Molly's tuition at the Blue Ridge Autism and Achievement Center. Molly has Medicaid, but the insurance does not cover the applied behavioral analysis therapy she receives there.
Angela Scarpa of the Virginia Tech Autism Clinic said intensive therapy can cost between $20,000 and $50,000 a year.
"If a family is trying to pay for that on their own, it can be devastating," Scarpa said. "In most cases, at least one parent gives up their job. But it is an added burden -- you are paying for therapy and less money is coming in. It is a double whammy in some ways."
Getting Molly to and from school and therapies created scheduling and transportation issues, so the couple decided it would be more effective to have one parent stay at home even though that meant losing an income. McConnell became a stay-at-home dad when Molly started at the center and Wu kept her job with the Occupational Safety and Health Administration.
When Molly started at the school a year ago, it cost $3,000 per month for her to spend the full day with an applied behavioral analysis therapist. A therapist worked with Molly at home for a while, too. Molly's progress has reduced her need for a therapist to half a day, which cut her tuition in half. It costs $250 a month for Peter to go to the center with Molly.
McConnell said the financial impact has been like sending Molly to college -- 15 years early.
"We hope that she does go to college one day, and when the time arrives, we'll figure out a way somehow to try to pay for that," he said. "But right now, this is what we have to do. Families with autistic kids, they sacrifice, and you just try to do the best you can for your kids."
On top of the financial strain, McConnell and Wu were just plain exhausted. As babies the twins were naturally handfuls, but a full night's sleep always has been a struggle, for Molly especially. Most nights -- even with a small dose of melatonin, a natural sleep aid -- Molly wakes up between midnight and 3 a.m. Some nights, she wakes every two hours. The lack of sleep makes it hard for McConnell and Wu to function through the day.
"Not having sleep for us has been hard," Wu said. "That was one of our biggest concerns in the beginning. We just weren't getting any sleep, so we couldn't work with her the way we knew we had to work with her."
Molly's sleep pattern has improved; there was a time when she would wake during the night and become agitated and violent. McConnell and Wu covered Molly's bedroom walls and door with padding and installed a dead bolt lock on the outside of the door to protect her.
A year of change
The basement of the family's home is a playroom, overflowing with toys. Peter is naturally bossy with his sister, saying, "Sit here. Do this. Sing this song." Molly chooses a book, takes it to the sofa and babbles, pretending to read to herself. She finishes flipping through the pages and gets up to get another book. She is content not inviting anyone else into her world.
Peter enjoys playing with tractors, trains and building blocks. The twins got Lincoln Logs for Christmas. Molly couldn't grasp the concept of building a dwelling with four sides. Instead she built a single wall but became agitated when the roof wouldn't fit. Wu said both she and Molly became frustrated because Molly couldn't understand when Wu tried to explain. Even though Molly is verbal, there are sometimes barriers to her communication.
Just as there are differences between Molly and Peter, there are differences in the ways each parent handles Molly's diagnosis. McConnell is comfortable telling others Molly has autism. Wu, on the other hand, is hesitant.
"I'm kind of private," Wu said. "I am not embarrassed by Molly's diagnosis, but I don't think I processed it very well."
She said she tried a support group, but felt guilty because even though Molly's diagnosis fell in the moderate range of autism spectrum disorders, she functions at a relatively high level. Wu said she sometimes feels guilty because she encounters other parents of children with autism whose symptoms are much more severe.
Because Molly's symptoms are not always discernible, some people McConnell and Wu encounter have questioned the diagnosis. Whether it raises her hopes for Molly or exacerbates her own doubts of a misdiagnosis, it is a heart-wrenching example of a mother who yearns for the best for her child.
Still, the signs and symptoms are there.
When the twins were about 18 months old, Wu said she noticed differences between the toddlers. Molly would not turn her head when Wu called her name. At the same time, Peter could understand what his parents were saying and he was able to answer their questions. Peter began to speak, but Molly did not. When she wanted something she grunted, but it often was a guessing game for her parents to figure out why she was pointing or crying.
Molly began receiving speech therapy and other federally funded early intervention services before her second birthday. She was formally diagnosed with autism shortly after turning 2. Four months later, McConnell and Wu enrolled Molly at the autism center, where she received six hours of applied behavioral analysis therapy daily. McConnell said Molly has blossomed in the past year.
"She still has a long way to go," he said. "Sometimes she will just ask you the same question, like 10 times and you answer it. There are still some connections not being made."
Now Molly speaks sentences with six or seven words and she spends only half a day with a therapist at school. She has responded well to the therapy, but her parents live in fear of her progress lapsing or worse, regressing. They wonder where she will be in a year or in five years, whether she will get a driver's license, whether she will go to college -- questions that go unanswered for now.
"At the end of the day, she talks and she can play. She is a happy little girl and that's all that matters," Wu said.




