An adult with autism crusades, adjusts

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An adult with autism crusades, adjusts

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 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 '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.

's obsession was autism. When she started reading about the

disorder at 14, 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, 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 and many

others with Asperger's who don't meet the disability criteria for

services.

For '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,

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. 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, " said.

That kind of insight is what makes both a wonder and a value to

her co-workers at 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

. 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 with the

social skills that aren't intuitive for people with autism.

They tidy '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 '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.

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 '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.

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

's fears.

Thinking In Pictures

Over the years, 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.

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.

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, 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, 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.

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 ,

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

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 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? " asked. " That's all. "

Reach Janet Zimmerman at or jzimmerman@...