Rise in autism sparks call to action
Ten years ago, one out of every 10,000 children was diagnosed with autism or one of its disorders. Today, it's one out of every 166. In Nebraska, the number jumped from 37 in 1993 to 838 at the end of last year. Now state legislators are considering a law to help pay for the effects of what some are calling a crisis.
Diagnosis keys | Autism primer
Derek McLeans paces in circles. It's time to go home.
Acting class is over, but his parents, Ian and Maggie McLeans, are talking to someone. Derek tilts his head to the right, avoiding straight-on eye contact with a stranger. He paces. Slouches in a chair. Gets up. Walks back to his parents. "Now?" the 12-year-old asks.
Not yet.
Derek glances askew at the stranger. He paces back to the chair. Sits. Slouches. Gets up. Walks over to his parents. Asks again.
He repeats the process several times, his agitation growing when 9-year-old sister Eileen tugs at his hand and urges him to go in the hallway with her.
He raises his hand, holding it limply upside down as if it were both contaminated and injured.
This is not your average aggrieved adolescent.
Derek has Asperger syndrome, a a form of autism.
Ten years ago, one out of every 10,000 children was diagnosed with autism or one of its disorders.
Today, one out of every 166 children has some form of autism.
In Nebraska, the number jumped from 37 in 1993 to 838 at the end of last year. The 2004 number represents a 27 percent increase over 2003, when 660 children were diagnosed with autism in Nebraska.
In the past year, Lincoln Public Schools saw a 25.9 percent increase in autism cases, from 181 in 2003-04 and 228 this school year.
Boys are four times more likely than girls to have autism — a neurological condition that affects the ability to learn, relate to others, cope, interact with the outside world, and, ultimately, become productive members of society.
Peter Bell calls it a national emergency.
Bell is director of the Cure Autism Now, a national parent advocacy organization, and father of a 12-year-old boy diagnosed with autism nine years ago. Bell continues to be dismayed at the increasing rate at which autism robs families of their children, and children of their potential. He sees the way it drains families emotionally and financially, the struggles they encounter as they search for answers and remedies.
In Nebraska — and many areas of the United States — neither treatment nor therapy for autism is covered by private medical insurance or Medicaid.
Families can:
* Rely solely on special education services provided by public school districts.
* Pay for more specialized, expensive services out of pocket.
* Move to a state that provides such programs and has Medicaid waivers for their services.
A bill introduced this year by Nebraska Sens. Jim Jensen, Dennis Byars and Ernie Chambers would provide funding for intensive early-intervention therapy for children with autism spectrum disorders.
LB101 is in the Legislature's Health and Human Services Committee.
If such a law had been on the books five years ago, Roger Kuhn might still be living with his family.
Instead, the assistant director in charge of parks with the state Game and Parks Commission moved his wife, Sheila, and their three kids to Madison, Wis., so son Slader could get help for his autism. Roger Kuhn stayed here.
In Wisconsin, Slader gets one-on-one help in the classroom, plus 35 to 40 hours a week of at-home assistance.
If Nebraska paid for specialized autism therapy, Bill and Jennifer Dick might not be tens of thousands of dollars in debt today.
The Lincoln couple mortgaged their home and borrowed $20,000 from their parents to pay for applied behavioral analysis for their son Jared.
Jennifer Dick recalls the day she told her husband Jared's therapy would cost $40,000 to $60,000 a year.
"There's no question," he told her. "We can't afford it."
But then 3-year-old Jared's out-of-control behavior convinced them they needed to risk it all to try to reclaim him from autism.
Jared is 6 now, and in first grade at Belmont Elementary School.
Jennifer Dick tells people her son had autism.
She knows there is no cure, but she also knows the happy, social and academically on-target little boy is a different child than he was three years ago.
That Jared ate crayons, twirled his hair endlessly, lined up cups, spun the wheels on his Matchbox cars without ever driving them, fixated on things for hours at a time, didn't talk, threw things, screamed.
He began receiving special education services from Lincoln Public Schools shortly after his diagnosis, but schools can only do so much, his mother said. The more she read about autism, she said, the more she worried time was running out for Jared because the older children are, the harder it is to help them overcome autistic tendencies and retrain their brains.
Jared completed the applied behavioral analysis program in two years and was discharged January 2004.
"He conquered autism," his mother said. "We were fortunate that Jared thrived.
"Not every kid is going to do that, but every kid makes progress."
Every child with autism needs treatment and educational help, said Dr. Doug Ebers, a pediatrician with Lincoln Pediatric Group.
"Autism cannot be cured, but it can be modified," he said. "We try to improve the condition of whatever the child has got and make life better for them and their caregivers."
Four months ago, 3-year-old Alexander Geiger was diagnosed with autism. Since then, his parents Chad and Pam have taken him off all dairy products and say he is much happier.
He is doing well at childhood special education preschool at Sheridan Elementary, but the family is contemplating a move to Minnesota, which, like Wisconsin, pays for intensive therapy.
"Otherwise we're thinking of taking out a massive loan," Pam Geiger said.
Mark Stephens, 10, remembers with disdain his seasons in micro soccer and T-ball. He attributes it to a dislike of sports.
His mom, Valerie Stephens, sees his Asperger syndrome as a contributing factor to an early end to his athletic career.
But Mark likes acting. Every Friday, he attends a class at the Lincoln Community Playhouse designed specifically for elementary kids diagnosed with autism. All three boys in the class have Asperger syndrome.
The boys are writing their own play, which they will perform at the end of the six-week session. It is a play of Super Heroes versus Super Villains.
Mark, who was diagnosed with mild autism at 7, plays the ghost of the Green Goblin.
"The good thing about it is that I seem more creative," he said of having autism. "I have a lot of energy. I make a lot of jokes.
"The disadvantage is that I take these weird little pills that look like shotgun shells. ... And when I'm at school I get these annoying little score sheets about how my behavior was in class."
He calls the scoring system insulting and complains he's the only kid who gets them.
Most people who meet Mark would think he's just a bit quirky with a hyperactive nature and a mind that takes him down a maze of tracks, making him seem unfocused. He says few of his classmates at Sheridan know he has autism.
Until recently, LPS provided all of Mark's therapy and federally required educational accommodations. Now, his mom, Valerie Stephens, takes him to a private speech therapist and has enrolled him in a special social skills program to help him better decipher body language, facial expressions and other clues.
Both programs are mostly out-of-pocket expenses for his mom.
Derek McLeans goes to Villa Marie, a small school operated by the Catholic Diocese for kids with special needs, but is enrolled in the same acting class as Mark. He'll play Shrek in the play. His sister jokes they can save the costumes and she'll be Shrek's wife, Fiona, for Halloween.
The McLeans transferred Derek to Villa Marie when he got to fourth grade. Mainstreaming was great for him when he was in primary grades, said his mom.
"But I don't believe in mainstreaming in fourth grade," Maggie McLeans said. Kids really notice the differences then, she said, and they can be cruel.
At the very least, they tend to ignore and isolate the odd ones, said Derek's dad, Ian.
"When you talk to parents, they all say the same thing," he said. "They talk of the loneliness of these kids."
But if kids with autism get the right treatment early and intensively, Jennifer Dick said, it doesn't have to be that way.
She worries about all those who have yet to be diagnosed.
"We cannot wait for next year to get this bill passed," she said of LB101. "Each day is a day they can learn something new. The earlier you start the more success you have."
Reach Erin Andersen at 473-7217 or eandersen@journalstar.com.
Diagnosis keys | Autism primer
Derek McLeans paces in circles. It's time to go home.
Acting class is over, but his parents, Ian and Maggie McLeans, are talking to someone. Derek tilts his head to the right, avoiding straight-on eye contact with a stranger. He paces. Slouches in a chair. Gets up. Walks back to his parents. "Now?" the 12-year-old asks.
Not yet.
Derek glances askew at the stranger. He paces back to the chair. Sits. Slouches. Gets up. Walks over to his parents. Asks again.
He repeats the process several times, his agitation growing when 9-year-old sister Eileen tugs at his hand and urges him to go in the hallway with her.
He raises his hand, holding it limply upside down as if it were both contaminated and injured.
This is not your average aggrieved adolescent.
Derek has Asperger syndrome, a a form of autism.
Ten years ago, one out of every 10,000 children was diagnosed with autism or one of its disorders.
Today, one out of every 166 children has some form of autism.
In Nebraska, the number jumped from 37 in 1993 to 838 at the end of last year. The 2004 number represents a 27 percent increase over 2003, when 660 children were diagnosed with autism in Nebraska.
In the past year, Lincoln Public Schools saw a 25.9 percent increase in autism cases, from 181 in 2003-04 and 228 this school year.
Boys are four times more likely than girls to have autism — a neurological condition that affects the ability to learn, relate to others, cope, interact with the outside world, and, ultimately, become productive members of society.
Peter Bell calls it a national emergency.
Bell is director of the Cure Autism Now, a national parent advocacy organization, and father of a 12-year-old boy diagnosed with autism nine years ago. Bell continues to be dismayed at the increasing rate at which autism robs families of their children, and children of their potential. He sees the way it drains families emotionally and financially, the struggles they encounter as they search for answers and remedies.
In Nebraska — and many areas of the United States — neither treatment nor therapy for autism is covered by private medical insurance or Medicaid.
Families can:
* Rely solely on special education services provided by public school districts.
* Pay for more specialized, expensive services out of pocket.
* Move to a state that provides such programs and has Medicaid waivers for their services.
A bill introduced this year by Nebraska Sens. Jim Jensen, Dennis Byars and Ernie Chambers would provide funding for intensive early-intervention therapy for children with autism spectrum disorders.
LB101 is in the Legislature's Health and Human Services Committee.
If such a law had been on the books five years ago, Roger Kuhn might still be living with his family.
Instead, the assistant director in charge of parks with the state Game and Parks Commission moved his wife, Sheila, and their three kids to Madison, Wis., so son Slader could get help for his autism. Roger Kuhn stayed here.
In Wisconsin, Slader gets one-on-one help in the classroom, plus 35 to 40 hours a week of at-home assistance.
If Nebraska paid for specialized autism therapy, Bill and Jennifer Dick might not be tens of thousands of dollars in debt today.
The Lincoln couple mortgaged their home and borrowed $20,000 from their parents to pay for applied behavioral analysis for their son Jared.
Jennifer Dick recalls the day she told her husband Jared's therapy would cost $40,000 to $60,000 a year.
"There's no question," he told her. "We can't afford it."
But then 3-year-old Jared's out-of-control behavior convinced them they needed to risk it all to try to reclaim him from autism.
Jared is 6 now, and in first grade at Belmont Elementary School.
Jennifer Dick tells people her son had autism.
She knows there is no cure, but she also knows the happy, social and academically on-target little boy is a different child than he was three years ago.
That Jared ate crayons, twirled his hair endlessly, lined up cups, spun the wheels on his Matchbox cars without ever driving them, fixated on things for hours at a time, didn't talk, threw things, screamed.
He began receiving special education services from Lincoln Public Schools shortly after his diagnosis, but schools can only do so much, his mother said. The more she read about autism, she said, the more she worried time was running out for Jared because the older children are, the harder it is to help them overcome autistic tendencies and retrain their brains.
Jared completed the applied behavioral analysis program in two years and was discharged January 2004.
"He conquered autism," his mother said. "We were fortunate that Jared thrived.
"Not every kid is going to do that, but every kid makes progress."
Every child with autism needs treatment and educational help, said Dr. Doug Ebers, a pediatrician with Lincoln Pediatric Group.
"Autism cannot be cured, but it can be modified," he said. "We try to improve the condition of whatever the child has got and make life better for them and their caregivers."
Four months ago, 3-year-old Alexander Geiger was diagnosed with autism. Since then, his parents Chad and Pam have taken him off all dairy products and say he is much happier.
He is doing well at childhood special education preschool at Sheridan Elementary, but the family is contemplating a move to Minnesota, which, like Wisconsin, pays for intensive therapy.
"Otherwise we're thinking of taking out a massive loan," Pam Geiger said.
Mark Stephens, 10, remembers with disdain his seasons in micro soccer and T-ball. He attributes it to a dislike of sports.
His mom, Valerie Stephens, sees his Asperger syndrome as a contributing factor to an early end to his athletic career.
But Mark likes acting. Every Friday, he attends a class at the Lincoln Community Playhouse designed specifically for elementary kids diagnosed with autism. All three boys in the class have Asperger syndrome.
The boys are writing their own play, which they will perform at the end of the six-week session. It is a play of Super Heroes versus Super Villains.
Mark, who was diagnosed with mild autism at 7, plays the ghost of the Green Goblin.
"The good thing about it is that I seem more creative," he said of having autism. "I have a lot of energy. I make a lot of jokes.
"The disadvantage is that I take these weird little pills that look like shotgun shells. ... And when I'm at school I get these annoying little score sheets about how my behavior was in class."
He calls the scoring system insulting and complains he's the only kid who gets them.
Most people who meet Mark would think he's just a bit quirky with a hyperactive nature and a mind that takes him down a maze of tracks, making him seem unfocused. He says few of his classmates at Sheridan know he has autism.
Until recently, LPS provided all of Mark's therapy and federally required educational accommodations. Now, his mom, Valerie Stephens, takes him to a private speech therapist and has enrolled him in a special social skills program to help him better decipher body language, facial expressions and other clues.
Both programs are mostly out-of-pocket expenses for his mom.
Derek McLeans goes to Villa Marie, a small school operated by the Catholic Diocese for kids with special needs, but is enrolled in the same acting class as Mark. He'll play Shrek in the play. His sister jokes they can save the costumes and she'll be Shrek's wife, Fiona, for Halloween.
The McLeans transferred Derek to Villa Marie when he got to fourth grade. Mainstreaming was great for him when he was in primary grades, said his mom.
"But I don't believe in mainstreaming in fourth grade," Maggie McLeans said. Kids really notice the differences then, she said, and they can be cruel.
At the very least, they tend to ignore and isolate the odd ones, said Derek's dad, Ian.
"When you talk to parents, they all say the same thing," he said. "They talk of the loneliness of these kids."
But if kids with autism get the right treatment early and intensively, Jennifer Dick said, it doesn't have to be that way.
She worries about all those who have yet to be diagnosed.
"We cannot wait for next year to get this bill passed," she said of LB101. "Each day is a day they can learn something new. The earlier you start the more success you have."
Reach Erin Andersen at 473-7217 or eandersen@journalstar.com.
Copyright © 2002-2009 Lincoln Journal Star. All rights reserved.