Alone with autism

[Guest guest]

http://www.statepress.com/issues/2007/10/31/style/702521

Alone with autism

One in every 150 American children is born with autism, but the

disorder creates a feeling of profound isolation for those who have

it. Here is the story of a student living with the puzzling disorder.

by Pantak

published on Wednesday, October 31, 2007

Mechanical engineering senior Demouy's daily routine is much

like any other students. He gets up, goes to classes, studies in the

library and heads home among the sea of other students at ASU.

But Demouy says he often feels very alone. Demouy spends most of his

free-time on campus in the Noble Science Library, where it's quiet

and social skills are rarely necessary.

" I don't really have a lot of friends, " he says.

When he was in middle school, Demouy was diagnosed with a form of

autism, a complex neurological disorder that specifically impacts

social interaction and communication skills. As a result, though one

in every 150 American children is born with autism, most people with

the disorder feel profoundly isolated.

People with low-functioning autism are too impaired to live on their

own and attend college in adulthood. However, those with high-

functioning autism, including some Arizona State University

students, often perform well in a university setting.

But even high-functioning autism is considered socially crippling.

For ASU students living with autism, attending one of the largest

universities in the nation can make each day a difficult feat.

'The obstacles are huge'

When Demouy was diagnosed with Asperger's Syndrome, a form of high-

functioning autism, he says it came as " a package deal. " Demouy has

Attention Deficit Disorder, Obsessive Compulsive Disorder and

Auditory Processing Disorder, in addition to AS. " The deeper you go

into the [autistic] spectrum, the more it becomes a disorder, " he

says.

Those with high-functioning autism are often characterized by

obsessive routines, insistence on sameness and an unusually high

interest in a particular subject, according to the National

Institute of Neurological Disorders and Stroke. AS, specifically, is

characterized by impairment in language and communication,

restrictive patterns of thought or behavior, and repetitive

routines, according to the Institute.

Those with the disorder may also have an inability to interact

successfully with their peers, problems with non-verbal

communication, uncoordinated motor movements and the use of peculiar

speech and language, such as speaking in a monotonous tone or taking

figures of speech literally.

The obstacles that college students with autism face are huge,

engineering professor says. is the director of the

Autism/Asperger's Research Program at ASU and president of the

Greater Phoenix Chapter of the Autism Society of America. His 15-

year-old daughter was diagnosed with severe autism when she was

about 2 years old.

There is no way of gauging how many college students have autism,

according to Bridges4Kids, an organization that aims to bridge the

gap between schools and communities. The organization says that many

students with autism go undiagnosed and are perceived as simply a

little strange.

" It's not a question of ability. It's a question of fitting in, "

says. The research is grim for autistic college graduates, he

adds.

" Ninety percent [of autistic college graduates] are unable to hold

down a job and live independently, and most have one or less social

interaction per month, " he says. " I knew a student [with high-

functioning autism] who had a 3.5 GPA and a bachelor's degree in

mechanical engineering. After he graduated, he couldn't hold down a

job in computer-aided design, and now he's doing janitorial work. "

Because of extreme social anxiety and a general inability to

interact normally with others, people with autism are usually not

prime candidates for job positions that require social skills.

Demouy says it's not easy for him to socialize with people because

of the stress it causes him.

" I can't work in the social aspect, " Demouy says. He doesn't fully

understand the concept of " breaking the ice " when first meeting

someone. " What is the ice? How do [people with autism] approach

that? It's just not as easy to get my foot in the door. … I am sort

of a loner. "

A disorder with many misconceptions

Because the general public typically knows so little about autism,

people often have many misconceptions about what the disorder truly

is, according to the Autism Research Institute.

Those with autism simply learn and develop slower than those without

the developmental disorder, says. " An 18-year-old [with low-

functioning autism] may be at the developmental level of a 6-year-

old, " he says.

There are also many assumptions that people with autism are

antisocial, don't make eye contact and lack affection, according to

the Autism Research Institute. Janet Kirwan, director of family

services at Southwest Autism Research and Resource Center in

Phoenix, says this is a misconception.

" A lot of people with autism are affectionate, especially with their

immediate families, " says Kirwin, whose 19-year-old son is autistic.

She says that most ideas of autism come from the popular film " Rain

Man. " The film is based on Kim Peek, an actual autistic man with a

photographic memory.

But Peek's autistic symptom is rare. " Fewer than 10 percent of

people with autism have [this ability], " Kirwan says.

Unlike the film, those with autism are also not necessarily easily

identifiable. The symptoms of high-functioning autism are rarely

apparent within the first few years of life, so it is diagnosed much

later than most neurological disorders. Most high-functioning autism

is detected and diagnosed between 5 years of age and early

adolescence, Kirwan says.

The general public cannot recognize people with autisim by

distinctive facial characteristics, like some disorders such as Down

syndrome.

Demouy says he feels like most people aren't aware that there is an

autistic spectrum with ranging intensities of symptoms. " You can't

even spot us unless you know what to look for, " Demouy says. " We

come across as eccentric. "

To deal with AS and the social anxiety it entails, Demouy says he

has worked with Tai Chi, a Chinese form of meditation. Ultimately,

he says he came to terms with his capabilities. " You have to accept

what you can and can't do, " Demouy says. " I can't take on the world. "

Demouy says there are a few ways people with autism learn to cope in

social settings. These methods include mimicking people without

mental disorders and learning how people without autism operate in

order to better understand.

Many people with low-functioning autism don't have the ability to

master these coping techniques and can't live completely

independently or deal with social settings such as a college campus.

Trying to compensate

Another common characteristic of those with high-functioning autism

is obsession with one particular subject that may seem irrelevant or

bizarre to people without the disorder. Often, they are trying to

compensate for a common inability to interpret and make sense of the

world around them.

Demouy says that the better a person with autism is able to

compensate, the more high-functioning his or her autism is.

Demouy copes by using what he calls his " human behavioral model, "

which he says he formed based on observing other people and

observing himself.

In the model, Demouy lays out what he believes to be the basic

operating system for human beings. He says that the model is how he

makes sense of the human behavior he observes every day. He refers

to people without mental disorders as " neurotypicals, " in that their

brains function in a way that is typical of the masses.

Pages and pages of tables, diagrams, research, quotations and

commentary make up the model, in which he often compares humans to

computers. Demouy keeps the model on his computer, where he can add

or change information.

" Just like a computer will not operate properly without the proper

scripts and drivers, so it is with a human when they're operating in

this lower-path processing, " Demouy explains in his model. " This is

part of the problem with people with Asperger's Syndrome being able

to adapt, as they do not possess the built-in scripts and drivers to

deal with neurotypicals in the same way neurotypicals can. "

Demouy says he thinks the brain is the same among people

universally. " There are just different biases in how the [brain] is

operated among individuals, " Demouy says.

Demouy's observations in his " human behavioral model " help him to

cope and understand the way in which " neurotypicals " work and behave.

There was a certain amount of angst involved while forming

his 'human behavioral model,' Demouy says. " I didn't want to believe

people were so simple that I could construct a model, " Demouy says.

He says making the model was more out of necessity than fascination.

Often, concentrating on one particular subject is the only way

people with autism can concentrate at all.

Going against expectations

But college students living with autism can overcome the obstacles,

as Yeou-Luen Ni, a 40-year-old ASU graduate, has proven. Ni was

diagnosed with high-functioning autism when he was 5 years old. At

6, Ni began to speak for the first time.

Ni was born in Taiwan, where there is even less research and

treatment available for those with autism, says Ni's sister, Yo-Yi.

When Ni's family suspected that he might have a mental disorder,

they went to a doctor who diagnosed him with autism and told them

there was no cure.

" Our extended family members tried to convince us to give him up, "

Yo-Yi says. " They said there was no future for him, no future for

our family. "

Yo-Yi says people with autism in Taiwan are often disregarded and

institutionalized at an early age. " Our parents sacrificed a lot, "

Yo-Yi says. " My mother made three times the average salary in

Taiwan, and she gave up her career to care for my brother. [Our

parents] couldn't find a school that would teach him. "

Ni went on to earn a bachelor's degree in mathematics in Taiwan, and

moved to America in 1992 when he was 25 years old. In August 2004,

Ni graduated with a masters' degree in computer science, after

beginning the program in August 1996.

He says he went through language therapy for many years and worked

with ASU's Disability Resource Center to get help for the things he

needed. " They made accommodations for me, " Ni says. " I would

sometimes get double the time to complete assignments, especially

exams. "

Yo-Yi says Ni was the first autistic person from Taiwan to attend a

four-year American university and graduate. " It changed the way

people [involved in the autistic community in Taiwan] viewed

autism, " she says. " It meant that their [autistic] kids had a

chance, too. "

A blessing in disguise

Despite the social inconveniences that autistic people face, there

are certain characteristics of the disorder that enable students

with autism to go above and beyond non-autistic students.

, with the Autism/Asperger's Research Program at ASU, says that

autistic students are generally persistent, loyal and do what is

asked of them. " I knew a girl [with high-functioning autism] that

was asked to write a three-page paper on a particular subject, " he

says. " She ended up writing a 20-page paper because she was very

interested in the topic being discussed. "

Demouy says he feels that people with high-functioning autism are

often more logical, perceptive and intelligent in general. " Because

you've had to fight, you can work so much harder, " he says.

Demouy is planning to graduate in December.

Many families, like Ni's, say they feel that having autistic

children creates a close bond between family members because of the

intense involvement required in the lives of their autistic children.

Yo-Yi says that having a brother with autism brought her family

closer together and reinforced a strong trust among her family

members.

" It's unfortunate that [my brother] Yeou-Luen has autism, but in a

way, it's a good thing, " Yo-Yi says. " The love and caring we

experience is so strong and powerful. "