03-25-2008, 04:36 PM
10:00 PM PDT on Saturday, March 22, 2008
By JANET ZIMMERMAN
The Press-Enterprise
The diagnosis explained everything -- the fits and frustration, the lack of friends, the childhood obsessions with everything from chimpanzees to multiple births.
For 24-year-old Kelly Londenberg, it was a long journey from the quirky behavior of her childhood to finally being labeled at age 18 with Asperger's syndrome, a high-functioning form of autism.
With that revelation came answers to questions that had long puzzled the Lake Elsinore woman and her family about Kelly's tendency to rock side to side and line up objects and why she had ignored or grunted at her classmates when they greeted her.
Asperger's falls on one end of the autism spectrum, a range of behaviors associated with the neurological disorder that hinders a person's ability to communicate and relate to others. People with Asperger's have normal or above-normal intelligence and often are preoccupied with a narrow topic such as train schedules or Civil War battles.
Kelly's obsession was autism. When she started reading about the disorder at 14, Kelly knew the traits described her, and that's why she loved the subject.
She learned about therapies, volunteered in autism classrooms and attended national conferences. It was no wonder she related to fellow conference-goers, many of them authors, professors and professionals who had learned to manage their odd social behaviors and overactive senses; she was one of them.
Four years later, when a friend who has Asperger's urged her to get tested, Kelly already had figured it out.
Autism affects 1 in 150 children and is the fastest-growing disability in the United States. Much time and money has been spent trying to identify and address the needs of those children, most of them between 6 and 9 years old now.
The disability-benefits system is bracing for the next challenge: How to accommodate the oldest children, who were at the front end of an unexplained explosion of autism cases that hasn't stopped growing since the early 1990s. But the numbers don't include Kelly and many others with Asperger's who don't meet the disability criteria for services.
For Kelly's mother, Debby Londenberg, the diagnosis was a blessing.
"She used to tell me she could hear the fluorescent lights and it bothered her. I thought she was nuts," Debby Londenberg said. "Once we found this out, it not only answered so many questions for me, Kelly was able to know what to do to get along in the world, to control her anger, make friends. It has changed her life from night to day."
Autism Insight
Even a simple task like getting a drink of water at home cannot go unplanned. Kelly first creates a scenario in her head, calculating for obstacles en route to the kitchen, from tables and lamps to her German shepherd.
One unanticipated hurdle or distraction, and she has to start over.
"That's why kids with autism get so frustrated when things change, because they have to work so hard to re-plan everything," Kelly said.
That kind of insight is what makes Kelly both a wonder and a value to her co-workers at David Brown Middle School in Wildomar, where she puts in 30 hours a week as an instructional aide in a special education classroom.
When the other aides need help with autistic students, they turn to Kelly. She is not just well liked, but respected for her ability to verbalize the baffling behaviors associated with autism.
"She gives us insight into the mind of an autistic child, which is a gift," said fellow aide Fran Kestly. "She's probably the most amazing person I've ever met."
Kestly and other staff return the favor by helping Kelly with the social skills that aren't intuitive for people with autism.
They tidy Kelly's curly brown hair, straighten her clothes and remind her to not lick people -- one of those oddities that contributes to the social awkwardness that comes with Asperger's.
One of Kelly's co-workers took her to a nightclub for the first time, though she didn't know how to dance and the noise was overwhelming. Kelly remembers that no one wanted to talk about autism. She is uncomfortable talking about almost everything else.
Her co-workers also taught her appropriate ways to greet people. Now, she squeezes a visitor's hand in greeting, and returns a few moments later to squeeze it again, nervously mumbling "Hi, hi, hi."
Being in a special education setting, allowances are made for Kelly's differences.
When she first started, she hadn't learned to control inappropriate behaviors such as yelling when she was frustrated and not respecting authority. Her co-workers corrected and redirected her.
"I don't think I could work in a regular job. I would end up getting fired. If something happened the wrong way and I was already stressed from the job I would have a meltdown," she said.
For two years, her boss filled out her timecard so all she had to do was sign it. She gradually learned to fill out more sections until she was doing it on her own. Everything has to be learned -- slang words, the subtleties of jokes, what constitutes flirting.
Standard conversations are pre-scripted in her head. Go off-topic and she's lost for words.
"If I'm with people my age it gets even harder because they don't like to hear about autism. They want to just talk about boys and clothes and partying and I don't really have anything planned to say about that."
Ordering pizza over the phone is out of the question because if the person on the other end gets her request wrong, she can't respond quickly enough.
Kelly also has learned appropriate ways to act and feel from the many books she reads.
"When I read an autism book, it's a way to study normal people. And I think, 'Oh, that's how I should act.' "
She has begun to share her knowledge at a monthly social group she helped start for teens and young adults with autism. One month they went bowling, another they had a police officer help them role play about what to do if they are pulled over while driving, one of Kelly's fears.
Thinking In Pictures
Over the years, Kelly has learned to not take things so literally.
When pressed for an example, she relates the story of her first solo trip in a car. Driving around Lake Elsinore, she saw a sign that said "Do not pass" and assumed it meant the sign, not other cars.
So she turned around and drove all the way back around the lake. About 20 minutes later, she figured it out.
The constant remembering and self-control are exhausting. Kelly sometimes has to take breaks at work and no longer allows her friends to come to the home she shares with her mother, a place where she doesn't have to worry about what to say or how to behave.
On some days, her senses are magnified. Sometimes she can hear another person's heartbeat or electricity humming through the wires, and even the softest touch feels prickly.
"It feels like a really bad sunburn, and I can feel someone's heat from their skin and their presence coming toward me," she said.
Kelly has learned calming techniques for irritations that sent her into rages as a child. Hugs and squeezes bring her back to center. Floating in water is the best because it gives deep pressure without anything touching her.
"The world's not as confusing," she said.
Like many people with Asperger's, Kelly thinks in pictures.
Say the word "dog" and it triggers a photo album in her head. When she first learned the word at 4, she saw the dog that lived next door. But the picture in her mind also includes the grass, the sun, a bird and the grandmother of the boy who lived at the house.
And when she hears the word "big," she remembers a children's book comparing the size of a mouse to an elephant.
"If I'm not careful, I might say something like, 'The bird in the sky is an elephant.' That's the same thing to me as, 'The dog is big,' " she said, her blue eyes conveying a mixture of innocence, curiosity and knowledge, a combination that connects her instantly to those around her. "I have to be careful when constructing sentences that I get the right word."
Despite the effort it takes just to manage the day-to-day, Kelly also provides respite care to families of children with autism, sits on the board of the local Autism Society and is a state representative for Unlocking Autism, a national education and advocacy group for parents of children with autism.
Kelly has 70 units from San Jacinto Community College but long delayed transferring to a university because she was stumped by paperwork, even after asking for help at the campus disabilities office. They told her which forms to fill out, but just thinking about gathering all the information necessary overwhelmed her and she put it off for months.
"Anything with a lot of steps is really hard for me," said Kelly, whose younger sister finally filled out the forms for her. "A lot of times I don't understand the information they're asking for."
Part of the delay in transferring was researching colleges, but Kelly finally found something that would work and ended the search. The private Azusa Pacific University is based in Azusa, in Los Angeles County, but has a Murrieta program that would allow Kelly to take one night class at a time for six weeks and not have to commute or give up the job she loves. She will continue through the program with the same classmates, a plus for someone with Asperger's who doesn't like change.
She wants to do behavioral therapy for autism or teach special education.
She is independent, though her mother still reminds her when it's time to pay her bills and helps her navigate the way to new locations.
Eventually she may move out on her own.
"And...what else?" Kelly asked. "That's all."
Reach Janet Zimmerman at 951-368-9586 or jzimmerman@PE.com
BY THE NUMBERS
36,952
Number of people with autism served by state Department of Developmental Services in January.
45 percent
Those served who were between age 6 and 13.
7 percent
Those served who were older than 32.
The younger group will begin entering adulthood in the next five to seven years, and will require different and more costly services like transportation, job training and residential placement, experts said.
$29,787
The average per-person amount the state paid for services to 22- to 41-year-olds with autism.*
$17,336
The average per-person amount for people in the same age group with other kinds of disabilities.*
$8,555
The average spent for services to 3- to 21-year-olds with autism.*
*Figures are for 2004-05, the last year for which the statistics are available
[source: http://www.pe.com/localnews/inland/stori...826eb.html ]
Online news for Inland Southern California
By JANET ZIMMERMAN
The Press-Enterprise
The diagnosis explained everything -- the fits and frustration, the lack of friends, the childhood obsessions with everything from chimpanzees to multiple births.
For 24-year-old Kelly Londenberg, it was a long journey from the quirky behavior of her childhood to finally being labeled at age 18 with Asperger's syndrome, a high-functioning form of autism.
With that revelation came answers to questions that had long puzzled the Lake Elsinore woman and her family about Kelly's tendency to rock side to side and line up objects and why she had ignored or grunted at her classmates when they greeted her.
Asperger's falls on one end of the autism spectrum, a range of behaviors associated with the neurological disorder that hinders a person's ability to communicate and relate to others. People with Asperger's have normal or above-normal intelligence and often are preoccupied with a narrow topic such as train schedules or Civil War battles.
Kelly's obsession was autism. When she started reading about the disorder at 14, Kelly knew the traits described her, and that's why she loved the subject.
She learned about therapies, volunteered in autism classrooms and attended national conferences. It was no wonder she related to fellow conference-goers, many of them authors, professors and professionals who had learned to manage their odd social behaviors and overactive senses; she was one of them.
Four years later, when a friend who has Asperger's urged her to get tested, Kelly already had figured it out.
Autism affects 1 in 150 children and is the fastest-growing disability in the United States. Much time and money has been spent trying to identify and address the needs of those children, most of them between 6 and 9 years old now.
The disability-benefits system is bracing for the next challenge: How to accommodate the oldest children, who were at the front end of an unexplained explosion of autism cases that hasn't stopped growing since the early 1990s. But the numbers don't include Kelly and many others with Asperger's who don't meet the disability criteria for services.
For Kelly's mother, Debby Londenberg, the diagnosis was a blessing.
"She used to tell me she could hear the fluorescent lights and it bothered her. I thought she was nuts," Debby Londenberg said. "Once we found this out, it not only answered so many questions for me, Kelly was able to know what to do to get along in the world, to control her anger, make friends. It has changed her life from night to day."
Autism Insight
Even a simple task like getting a drink of water at home cannot go unplanned. Kelly first creates a scenario in her head, calculating for obstacles en route to the kitchen, from tables and lamps to her German shepherd.
One unanticipated hurdle or distraction, and she has to start over.
"That's why kids with autism get so frustrated when things change, because they have to work so hard to re-plan everything," Kelly said.
That kind of insight is what makes Kelly both a wonder and a value to her co-workers at David Brown Middle School in Wildomar, where she puts in 30 hours a week as an instructional aide in a special education classroom.
When the other aides need help with autistic students, they turn to Kelly. She is not just well liked, but respected for her ability to verbalize the baffling behaviors associated with autism.
"She gives us insight into the mind of an autistic child, which is a gift," said fellow aide Fran Kestly. "She's probably the most amazing person I've ever met."
Kestly and other staff return the favor by helping Kelly with the social skills that aren't intuitive for people with autism.
They tidy Kelly's curly brown hair, straighten her clothes and remind her to not lick people -- one of those oddities that contributes to the social awkwardness that comes with Asperger's.
One of Kelly's co-workers took her to a nightclub for the first time, though she didn't know how to dance and the noise was overwhelming. Kelly remembers that no one wanted to talk about autism. She is uncomfortable talking about almost everything else.
Her co-workers also taught her appropriate ways to greet people. Now, she squeezes a visitor's hand in greeting, and returns a few moments later to squeeze it again, nervously mumbling "Hi, hi, hi."
Being in a special education setting, allowances are made for Kelly's differences.
When she first started, she hadn't learned to control inappropriate behaviors such as yelling when she was frustrated and not respecting authority. Her co-workers corrected and redirected her.
"I don't think I could work in a regular job. I would end up getting fired. If something happened the wrong way and I was already stressed from the job I would have a meltdown," she said.
For two years, her boss filled out her timecard so all she had to do was sign it. She gradually learned to fill out more sections until she was doing it on her own. Everything has to be learned -- slang words, the subtleties of jokes, what constitutes flirting.
Standard conversations are pre-scripted in her head. Go off-topic and she's lost for words.
"If I'm with people my age it gets even harder because they don't like to hear about autism. They want to just talk about boys and clothes and partying and I don't really have anything planned to say about that."
Ordering pizza over the phone is out of the question because if the person on the other end gets her request wrong, she can't respond quickly enough.
Kelly also has learned appropriate ways to act and feel from the many books she reads.
"When I read an autism book, it's a way to study normal people. And I think, 'Oh, that's how I should act.' "
She has begun to share her knowledge at a monthly social group she helped start for teens and young adults with autism. One month they went bowling, another they had a police officer help them role play about what to do if they are pulled over while driving, one of Kelly's fears.
Thinking In Pictures
Over the years, Kelly has learned to not take things so literally.
When pressed for an example, she relates the story of her first solo trip in a car. Driving around Lake Elsinore, she saw a sign that said "Do not pass" and assumed it meant the sign, not other cars.
So she turned around and drove all the way back around the lake. About 20 minutes later, she figured it out.
The constant remembering and self-control are exhausting. Kelly sometimes has to take breaks at work and no longer allows her friends to come to the home she shares with her mother, a place where she doesn't have to worry about what to say or how to behave.
On some days, her senses are magnified. Sometimes she can hear another person's heartbeat or electricity humming through the wires, and even the softest touch feels prickly.
"It feels like a really bad sunburn, and I can feel someone's heat from their skin and their presence coming toward me," she said.
Kelly has learned calming techniques for irritations that sent her into rages as a child. Hugs and squeezes bring her back to center. Floating in water is the best because it gives deep pressure without anything touching her.
"The world's not as confusing," she said.
Like many people with Asperger's, Kelly thinks in pictures.
Say the word "dog" and it triggers a photo album in her head. When she first learned the word at 4, she saw the dog that lived next door. But the picture in her mind also includes the grass, the sun, a bird and the grandmother of the boy who lived at the house.
And when she hears the word "big," she remembers a children's book comparing the size of a mouse to an elephant.
"If I'm not careful, I might say something like, 'The bird in the sky is an elephant.' That's the same thing to me as, 'The dog is big,' " she said, her blue eyes conveying a mixture of innocence, curiosity and knowledge, a combination that connects her instantly to those around her. "I have to be careful when constructing sentences that I get the right word."
Despite the effort it takes just to manage the day-to-day, Kelly also provides respite care to families of children with autism, sits on the board of the local Autism Society and is a state representative for Unlocking Autism, a national education and advocacy group for parents of children with autism.
Kelly has 70 units from San Jacinto Community College but long delayed transferring to a university because she was stumped by paperwork, even after asking for help at the campus disabilities office. They told her which forms to fill out, but just thinking about gathering all the information necessary overwhelmed her and she put it off for months.
"Anything with a lot of steps is really hard for me," said Kelly, whose younger sister finally filled out the forms for her. "A lot of times I don't understand the information they're asking for."
Part of the delay in transferring was researching colleges, but Kelly finally found something that would work and ended the search. The private Azusa Pacific University is based in Azusa, in Los Angeles County, but has a Murrieta program that would allow Kelly to take one night class at a time for six weeks and not have to commute or give up the job she loves. She will continue through the program with the same classmates, a plus for someone with Asperger's who doesn't like change.
She wants to do behavioral therapy for autism or teach special education.
She is independent, though her mother still reminds her when it's time to pay her bills and helps her navigate the way to new locations.
Eventually she may move out on her own.
"And...what else?" Kelly asked. "That's all."
Reach Janet Zimmerman at 951-368-9586 or jzimmerman@PE.com
BY THE NUMBERS
36,952
Number of people with autism served by state Department of Developmental Services in January.
45 percent
Those served who were between age 6 and 13.
7 percent
Those served who were older than 32.
The younger group will begin entering adulthood in the next five to seven years, and will require different and more costly services like transportation, job training and residential placement, experts said.
$29,787
The average per-person amount the state paid for services to 22- to 41-year-olds with autism.*
$17,336
The average per-person amount for people in the same age group with other kinds of disabilities.*
$8,555
The average spent for services to 3- to 21-year-olds with autism.*
*Figures are for 2004-05, the last year for which the statistics are available
[source: http://www.pe.com/localnews/inland/stori...826eb.html ]
Online news for Inland Southern California