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http://go.rrstar.com/fe/0424autism.asp

The world of autism

Families live with heartbreak as they struggle with the complex and

growing disorder

By GERI NIKOLAI, Rockford Register Star

Meet Shirley , mother of 4-year-old twins Ethan and Dylan. Read

how she describes a routine event in her life, an afternoon when she

took her boys to a doctor.

" Ethan had a total meltdown while we were in the examining room.

Dylan was hyped and sang as loud as he could to drown out Ethan's

screams. He also played with all the equipment and banged the

stirrups on the examining table until my head was about to explode ...

" When the doctor did come in, I was barely able to hear or speak to

him over the noise and trying to keep the room in one piece. Ethan

tried to push the doctor out of his chair and out the door and then

handed me my purse and car keys. "

What do you think? Were the boys due for a nap? In some kind of pain?

Spoiled rotten?

None of the above. Ethan and Dylan are beautiful, loving, smart and

often charming little boys who have autism.

They look like normal kids, but they cannot understand why they have

to wait for a doctor or why they should sit still.

They hate changes in their routine and may throw a tantrum for

reasons no one else comprehends.

They don't play well with other children, they'll chew on just about

anything and they try to run away.

Like a growing number of Americans, they suffer from a complex

disorder that even doctors don't understand. Researchers know autism

affects brain development in the areas of social interaction and

communication skills, but they don't know why.

Autism ranges from severe to mild, and therapy can help. But there is

no cure.

The disorder is growing at what experts call an " epidemic " rate.

The Autism Society of America says it affects two of every 1,000

individuals.

The U.S. Department of Education says the occurrence of autism

increased by 644 percent between 1992 and 2001.

And of the 116 families receiving family services for children with

disabilities from Easter Seals Children's Development Center in

Rockford, 58 -- a full one-half -- are dealing with autism.

'It felt like death to our dreams'

Those numbers became personal to Shirley and her husband, Tod

Gourley, one day two years ago when a doctor brusquely diagnosed

their sons.

As they recall, the doctor said, " I'm sorry. Your children have

autism.

" Don't worry. They won't be in diapers the rest of their lives. When

they're older, they'll be institutionalized. "

Then he shook Gourley's hand and left the room.

It was, the couple say, the worst day of their lives.

" I drove home, but I don't remember how we got here, " said Gourley.

Were they supposed to throw out all the things they'd looked forward

to, they wondered. Would there be no grade school basketball games,

high school proms, college, grandchildren?

" It felt like death to our dreams, to our children's future, " said

.

Even as they learned about autism and that there was hope despite the

doctor's dire prognosis, they struggled with their emotions.

was 40 when the twins was born. She questioned whether she was

responsible by waiting too long to have children. Gourley kept hoping

the doctor was wrong.

" I'd want to talk about it, but he wasn't ready to hear about it, "

said .

Gradually, the couple came to terms with the fact their boys were not

just late bloomers. They continued with speech therapy and got them

into special play groups at the Easter Seals center. When the boys

turned 3, they enrolled them in Fairview Early Childhood Center,

where they get special help.

The goal right now is communication. The boys are learning to " talk "

with picture cards that denote " I want " and the item they want. They

sing songs and repeat language but can't use it to express a need.

and Gourley have regained hope for their children. If the boys

continue to get therapy through the school system and other sources,

they can make it through high school and even college, the parents

believe.

" They are both so smart, " said . " I think they have a great

future, but it will come more slowly than for most children. "

In the meantime, the parents treasure every small victory.

" Ethan said 'Mommy' once, " said . " I cried and cried. It was the

greatest day of my life. "

'Extraordinary talent' remains the exception

Because there is such a range of ability among autistic people, it is

impossible to classify them. Parents of autistic children often point

to Temple Grandin, who earned a doctorate degree in animal science at

the University of Illinois and is a leading expert on humane

treatment of animals. Grandin, diagnosed with autism at age 2, is an

assistant professor at Colorado State University. She has written

about her struggles with autism and speaks about it nationally.

People like Grandin are the exception, said pediatrician Basil

Okoroji of Rockford's Crusader Clinic.

" Some autistic children have extraordinary talent, " said Okoroji. The

vast majority do not, he said, despite popular beliefs based on such

things as the 1988 movie hit " Rainman " in which Hoffman played

an autistic math whiz.

Okoroji practiced family medicine three years in Nigeria and had two

autistic patients. Since he became a pediatrician and came to

Crusader five years ago, he has seen many, he said, although he has

no numbers.

" There is an epidemic of autism now, " he said.

Researchers don't know why. There are theories, but none has been

proved.

The neurological disorder generally is diagnosed around the age of 30

months, after parents have noticed problems and sought help.

Autistic children may appear normal until around the age of 1,

Okoroji said. Then their ability to talk seems to recede and their

behavior departs from that of normal children. They prefer playing

alone to being with others. They may be preoccupied with doing the

same thing over and over and over again. They don't make eye contact,

and they throw tantrums for no apparent reason. As they grow, they

might develop aggressive behavior, depression, anxiety disorder or

other emotional problems, Okoroji said.

It is, he added, a " heartbreaking " diagnosis.

Difficult to break through and treat

One of the frustrations in helping people with autism is the

inability to assess their intelligence, said Tera Wenner, family

support service director at Easter Seals in Rockford.

" They cannot communicate effectively what they know, so it is very,

very hard to assess what they know, " Wenner said.

She recounted the story of one little boy with autism. She and his

family were convincedhe could read. His teachers didn't believe it.

Then they got him a computer and the school staff came back

saying, " this kid can read. "

The only way to ascertain his ability was using a computer, Wenner

said. For some reason, that was the only tool the boy responded to.

Not too long ago, Wenner added, the boy might have been termed

retarded and never given the opportunity to show what he could do.

While researchers haven't come up with the cause or cure for autism,

improved treatments and therapies are evolving. For families, the

challenge is figuring which is best for their child, getting access

to it and, often, paying for it.

Locally, as in many cities, services for people with autism are

fragmented, Wenner said.

" There is no place here to get a comprehensive look at a child with

autism, " she said. " You get one piece here and one piece there.

" Each provider may know the best practice for their piece, but the

treatment overall is not coordinated. "

Easter Seals tries to help by keeping up with research, letting

families know what their options are, informing them of their child's

right to be educated, linking them to community resources,

coordinating support groups, helping parents and siblings understand

a child who has autism, and acting as an advocate with insurance

companies to get coverage for treatment.

The agency also provides therapy for children with autism and other

disabilities and often helps families acquire therapeutic equipment

for their homes.

Families who deal with autism need all the support they can get, said

Wenner. They face public scrutiny in a way parents of children with

other disabilities do not.

" Autism does not come with a wheelchair. There's no obvious

disability, " she said.

So when a child with autism throws a tantrum in public, many people

assume the child is undisciplined and the parents are irresponsible.

For that reason, many families leave autistic children at home, if

possible. That's no solution, said Wenner. How will children learn to

act in public if they're not exposed to people.

It would be easier, Wenner added, if the public wasn't so quick to

judge.

" Some of our parents have been told they should try spanking once in

a while, " she said. " Well, spanking doesn't cure autism. "

You can learn a lot in an hour's conversation with .

is an expert at schedules and routes of everything from

Rockford city buses to transcontinental airlines. Fascinated with

transportation systems, he has a vision of Rockford that includes a

busy airport and express railways.

He loves architecture, too. Ask him about the Faust or the Brown

building. He can tell you when they were built and what it costs to

rent an apartment in them.

If you like number games, tell him your birthdate and the year you

were born, and he'll tell you what day of the week it was.

is handsome and friendly. At 22, he lives on his own, goes

out socially, enjoys picking up new trivia on the Internet and keeps

looking for work.

He also is autistic, which he describes as a shortage of

communication and social skills.

Or, as he puts it, " book smart but not street smart. "

is struggling to find his niche. He dreams of designing

monorails but lost a job packing bags in a grocery because he

couldn't resist looking at expiration dates on every item. A phone

solicitation job didn't work out, either.

Looking for work, said , " gets overwhelming.

" With autism, I'm going in with one point against me. A lot of people

look at social skills instead of intelligence. "

A graduate of Boylan High, finds this part of his life --

transitioning from a student to an independent young adult -- the

most difficult.

It's not easy for his mother, either, whose ears perk up during an

interview with in which he tells of meeting a new " friend " at

a local nightspot.

has taken every step with . He was her first-

born, a baby who couldn't sit up at age 1 and didn't talk until 4

when he started repeating others' words.

When boys in 's class in school were collecting baseball cards,

he was memorizing telephone area codes.

Always pushing for the best could be, got so involved

she dropped her work as a dental hygienist, went back to school and

became a special education teacher.

Her " education " into the needs of special ed students changed her

life. After trying unsuccessfully to get into private schools

or regular classrooms, she got acquainted with 's classmates in

a special ed room.

She wishes she could change society the way that experience changed

her.

" I started hanging around with those kids and I realized, they are

not vegetables. They have potential, they have personalities, " she

said.

" That's when my perspective started to change. "

became a powerful advocate for , convincing Boylan to

give him a chance. She had to read textbooks to him, but he graduated.

From the time was small, worked to free him from the

rigid schedules many autistic people depend on. She trained him to

take care of himself -- making him use the phone to schedule dental

appointments, for example. She once was told there was a 30 percent

chance would be able to live on his own. Now she is sure there

is a place for him in society that will include a job and a home,

with limited supervision.

" There will be some failures, some struggles, " she said. " But I want

to give him a chance and see how far he can go. "

Contact: gnikolai@...;

Autism Awareness Month Events

11 a.m. Saturday, Riverfront Museum Park, 711 N. Main St., Rockford:

Pulling for Autism. Door prizes, free food, activities. Becky , a

body builder and mother of an autistic child, seeking pledges to pull

a 9,000-pound van 10 feet. Proceeds go to family support services at

Easter Seals Children's Development Center.

9 a.m. to 6 p.m. today, Genesis Hair Studio, 930 Windsor Road, Loves

Park. Portion of proceeds from cut-a-thon will be donated to Easter

Seals.

About autism

Affects about 2 in 1,000 individuals

Growing 10 to 27 percent each year

Occurs 4 times more often in boys than girls

Is a complex developmental disability

Called a spectrum disorder because symptoms appear in a variety of

combinations, from mild to severe

Common symptoms are: insistence on sameness; using gestures instead

of words to express needs; repeating words or phrases; showing

distress for reasons not apparent to others; preferring to be alone;

little eye contact; unresponsive to normal teaching methods; over-

sensitivity or under-sensitivity to pain; no fear of danger; uneven

motor skills; hypersensitivity to some sights or sounds

Source: Autism Society of America, Centers for Disease Control, U.S.

Department of Education

Treatment

Early intervention is important.

Professionals who can help with diagnosis and therapy might include

pediatrician, child psychiatrist, clinical psychologist, occupational

therapist, physical therapist, speech/language therapist and social

worker.

Check with your local school district to see if they provide

services. Many preschool children are are eligible for educational

services.

A good source of information is Easter Seals Children's Development

Center, 650 N. Main St., Rockford, .

Helpful Web sites

Autism Today: www.autismtoday.com

Autism Research Institute: www.AutismResearchInstitute.com

Center for the Study of Autism: www.autism.org/contents.html

Autism Society of America: www.autism-society.org

National Alliance for Autism Research: www.naar.org

BBB Autism Online Support Network: www.bbbautism.com/

Cure Autism Now: www.canfoundation.org

How to help: A regular person's guide

Don't be judgmental if you see a family having a problem with a

misbehaving child. Consider asking if there is some way you can help.

Be knowledgeable about disabilities. Offer support to those dealing

with a disability in their family.

Resist reductions in state or local funding for programs for those

with disabilities.

Campaign to make your church, neighborhood center or other places

accessible to people in wheelchairs or with other disabilities.

Contribute to organizations that are researching the cause of autism

and helping families affected by it.

Source: Tera Wenner, Easter Seals Children's Development Center,

Rockford

Slice of life: Quotes from those involved

" I like sure footings. My lucky number is 4. "

-- , 22, Rockford, who has autism

" It's stressful enough to deal with the challenges that autism puts

on your family. You don't need glares or comments while you're

waiting in line at Logli's. "

-- Tera Wenner, Easter Seals Children's Development Center, on the

quandary of parents who worry their child with autism may throw a

tantrum in public

" Ethan is more affectionate, more low key, more verbal. Of course,

he's 30 seconds older. Dylan is on the move constantly, running,

jumping and climbing. He knows a lot more than he lets on. "

-- Shirley , Rockford, mother of twin 4-year-old sons with autism

" The movie 'Rainman' is a fallacy. 'Rainman' is good at reading and

numbers. I've met autistic people who are good at reading or numbers,

but not both. "

-- , Rockford, whose 22-year-old son has autism

" For within each of those who bear the label autistic lies a human

trapped between our world and theirs, screaming to know and be known,

often being taken for little more than their screams. "

-- From " Souls: Beneath and Beyond Autism, " Sharon Rosenbloom,

photography by Balsamo, McGraw-Hill, 2003

" People with autism do not experience the world as others do ...

Transitions from moment to moment, from place to place, at the least

are daunting and very often terrifying. "

-- From " Souls: Beneath and Beyond Autism "

" These kids will live into their 60s, 70s, 80s, either having had

early intervention and being productive, or they'll become completely

dependent and that will cost more money. "

-- Jim , Neenah, Wis., attorney, father of 7-year-old autistic

son