alone in autism

[Guest guest]

http://atlanta.creativeloafing.com/gyrobase/Content?oid=107423

Cover: Cover Story

Alone in autism

The numbers are startling: As many as one out of 166 children will

develop autism. While researchers struggle to find out why, parents

and their kids struggle to cope.

BY ALYSSA ABKOWITZ

Published 08.09.06

print email mail us

Grace Mauney leans back and stretches her legs out toward the

sky. The squeaky chains get louder as she pushes forward, and her

long, dark strands of hair blow past her haunting blue eyes. For a

moment, her backside leaves the yellow seat of the swing as she

lifts off into the air. She methodically pulls her splayed legs

back, flexing her hamstrings, and her body follows, swaying past the

wooden bars. Her forearms wrap around the chains. She revs up her

legs again and continues to soar.

Joeff

IN MOTION: Grace is soothed by the flight of a swing.

The constant back and forth motion soothes her. It's a motion she

can control, unlike some of her other thoughts and actions.

Sometimes she likes to sway slowly, her heels grazing the bottom of

the matted dirt in her back yard. She can twirl, too, twisting her

knees back and forth. Other times, she'll just sit -- grasping the

chains and slowly rocking. But when she gets the swing going, really

going, it's like she's vaulting over the treetops and leaving earth,

until gravity pulls her back down.

Grace, who is 16, has been swinging on the set as long as she

can remember. It's been reinforced four times as she's grown from

child to teenager. It's her place to think, to get so deep inside

herself that the world seems to disappear. It doesn't matter if the

temperature is 20 degrees or 90 degrees. Grace swings almost

every day to think about things, or else to forget about things and

just get lost in the motion. She can reach the sky as many times as

she wants. Sometimes she'll swing for hours before her feet gently

touch the dirt and she comes to a halt. It's time to return to

reality.

Much of Grace's life is defined by the fact that she suffers

from autism. When she was born, about one in 2,000 children

developed the disorder. Today, autism is the second leading cause of

disability in children, behind mental retardation. According to the

Autism Society of America, as many as one out of every 166 children

born today is autistic. The condition affects up to 1.5 million

people nationwide and is the fastest-growing developmental

disability; in the '90s alone, instances of autism rose 172 percent.

Autism impairs a person's ability to interact and communicate

effectively. It carries a variety of symptoms, with no one-size-fits-

all diagnosis. Autistic individuals often appear to be in their own

world. They exhibit bizarre behaviors and usually have a secondary

disability, such as mental retardation or epilepsy, that further

muddles the signs of the disorder. Some, like Grace, suffer

from a lesser variation known as Asperger's disorder and can learn

to function in society. Others need round-the-clock care. And most

individuals with autism are somewhere in between.

What's frightening is that scientists don't know what causes the

disease, or why the number of autistic children has spiked so

dramatically over the past 20 years. " Research is pointing to a

combination of genetic and environmental factors, " says

Cordero, director of the National Center on Birth Defects and

Developmental Disabilities. " Finding the cause is our highest

priority. "

The explosion in autism affects every corner of society. The

increase has stressed social services, and caused government and

community providers to scramble to catch up with the needs of a

growing disabled population. It's put a strain on public school

systems vying for dollars to support such kids. It's placed a burden

on taxpayers, which will only become greater. The estimated annual

cost of autism nationwide is $90 billion, with 90 percent of that

amount coming from adult services. And that number is expected to

rise to as much as $400 billion over the next 10 years.

It's also caused tension in the disability advocate community as

providers try to find ways to engage autistic people or find them a

job as they reach adulthood.

" The adult world presumes kids are ready to go once they leave

school, " says Sheila Wagner, assistant director of the Emory Autism

Center. " Yet people with autism need continued education and

support. And there's not a level of services and options for what

they need. "

Especially as the autistic population soars.

Dees sensed something was wrong when her son, Blake, was an

infant. People would coo at him, and he'd stare off in a different

direction. and her husband, Mark, already had two other

children. They knew kids loved that kind of attention and that they

reacted to it. And their other two children had learned to crawl at

six months; Blake had yet to even try at the same age.

Doctors told and Mark that Blake would come around, that he

was a typical youngest child, a late bloomer. But knew

something wasn't right. When Blake did begin to crawl, he'd

sometimes search for the tiniest speck of dust on the rug and put it

in his mouth. Other times, he'd sit on his knees and rock silently

with an empty gaze. " He seemed to be a little dull, not real alert, "

says.

At the age of 2-and-a-half, when Blake had yet to begin talking, he

was diagnosed with autism and mental retardation. Nothing had

prepared and Mark for a child who was so severely autistic,

who lived such a separate life.

They had to watch Blake closely when he was outside to make sure he

didn't pop cigarette butts, fire ants or broken glass into his

mouth. They had to apologize to a geneticist after Blake grabbed the

doctor's tie at his throat. They had to call physicians ahead of

time to ask them to move the plants in the lobby so Blake wouldn't

eat the leaves.

Joeff

SELF PROTECTION: Blake's autism is so severe that he often must wear

mitts and a helmet to protect him, and others, from himself.

In elementary school, Blake was so disruptive and destructive that

teachers had to strap him to a chair. At home, and Mark had

to dress their son in a leotard each day to prevent him from

reaching into his diapers to eat his own feces. After he started to

lurch at the steering wheel as they drove, they had to purchase a

five-point harness to strap him to the car seat.

Because Blake had to be watched constantly, and Mark learned

to alternate nights at their daughter's school play or their son's

basketball games. The attention Blake required meant less time for

their other two children. " They understand why, but it's frustrating

for them, " says.

But it's just as frustrating for and Mark. Having an autistic

child both binds their marriage and strains it. Going out to eat or

see a movie was such a major production that they seldom tried it.

The couple took salsa dancing at their church once, but could never

join the other couples for a drink after class. And after a

sleepless night of restraining Blake from slamming his head on the

hardwood floor or into the sheetrock walls, it was too easy to take

out their frustrations on one another. They'd yell over nothing or

argue over whose turn it was to take care of him. " It's hard for us

not to be able to do things together, " says. " We didn't take

a vacation, the two of us together, for 14 years. "

They just wanted to protect their son, prevent him from hurting

himself, give him the love a normal child would receive. More than

once, it seemed a hopeless battle. One day, Mark was so depressed as

he drove Blake home from school that he stopped his car by a cell

phone tower near their home in north Gwinnett. For a few minutes, he

sat there and contemplated how much easier it would be for both of

them if he took Blake and climbed to the top of the tower and jumped.

Mark finally shook himself, let the thought pass and drove home.

Blake, now 18, still doesn't speak. He bites and pinches and grabs

to communicate. He suffers from an eating disorder known as " pica, "

which makes him eat non-edible objects. He chews through his

father's shirts, leaving holes the size of a dinner plate. He rips

out clumps of his brother's hair when he gets frustrated. And he

bites his mother's toes -- once so hard that she got a staph

infection from the chomp.

At night, and Mark place large white mitts and a plastic

helmet recommended by his behavioral therapists on Blake to keep him

from biting himself or pinching himself so hard that he splits his

skin.

and Mark, both 49, own a property management company, which

gives them the financial ability to take care of Blake. They spend

about $2,000 a month on their son, on everything from diapers to

encasing car windows so he won't break them to fixing holes he's

made in the walls with his head or fists. And that doesn't include

the cost of the caretakers who stay with Blake during the week.

and Mark know they're lucky because they can afford to take

care of their son at home. Other families must work with what the

government offers -- on average, families receive $128 a day in aid

for a disabled child and there's a long waiting list to qualify --

or try to go at it alone or place their child in a state institution.

For and Mark, institutionalizing Blake isn't an option. " He's

our child, so he's our responsibility, " says. " Ultimately, we

have to be the ones to help him. "

Grace refused to take off the plaid dress with a smock

picturing a cat.

As a 3-year-old living in South Carolina, she wore it for days and

even slept in it at night. Grace would walk across a parking

lot with her mother, then suddenly bend down and place her nose

close to the asphalt to smell it and rub the rough surface.

The family moved to Lilburn when Grace was in elementary

school, and that's when even more signs that something was off-

kilter began to surface.

At school, Grace was quiet and well-behaved. She was so

exceptionally smart that her teachers regularly relied on her to

update them on the latest educational programming she watched on PBS

or the Discovery Channel on dinosaurs and amphibians.

But when she closed her books at school and returned home, she

unleashed the rage that she'd apparently bottled up during the day.

She'd kick her mother, trash her room and pull her younger sister's

hair.

" If her sister breathed, Grace would get upset, " her mother,

Maureen Mauney, says.

When Maureen talked with school counselors and teachers about her

daughter, they looked at her as though she was crazy. After all,

Grace had won the Young Georgia Authors' Writing Competition at

the age of 8. Her winning entry was called " Lightning Lucy, " a fable

about a cowgirl who rides an Aztec-winged serpent god instead of a

horse. And she'd clocked an IQ of 138 (the average is around 100).

When Maureen asked why she had so few friends, the counselor said it

was because the other kids were way below her intellectual level.

But the bad behavior eventually spilled into the classroom.

Grace began to get into fights and even ran away from school.

Therapists told her mother not to worry, that Grace was just

sensitive and creative and intense.

But by third grade, Grace felt helpless. She knew she was

different, and didn't understand why. While other kids her age

played with dolls, Grace would sit out on her window sill at

night, thinking about jumping into the air and killing herself. One

time, she swallowed a straight pen.

Joeff

MOTHERLY CARE: Blake was taught how to use utensils to feed himself,

but often forgets how to do it.

Finally, at the end of third grade, she was diagnosed with

Asperger's disorder, a high-functioning form of autism. The

diagnosis was a relief, simply because it explained her peculiar

behaviors. " It was like 'Oh, now we know what we're dealing with,' "

Maureen says. " It was so hard before that. It was a guessing game. "

That summer, Grace began to take Prozac to help her depression.

She enrolled in a social skills camp because the cordials that came

naturally to most people seemed foreign to her. Grace was

taught how to look people in the eye, how to hold a fluid

conversation and even how to joke with her parents.

By middle school, there were so many children with autism in

Gwinnett County that the school system started a program for kids

with Asperger's disorder at Lanier Middle School. For Grace, it

was her saving grace. She would start each day in a homeroom with

other students who had Asperger's before they ventured to regular

classrooms. Whenever she felt she was on the verge of a meltdown,

she could return to her homeroom. She could eat lunch there or go to

relax.

Her social interactions slowly started to improve and she even began

to befriend some of her " normal " classmates. " I saw how these other

kids [in her homeroom] were behaving and that made me want to become

normal, " Grace says. " It was seeing my own behavior in other

kids and saying [to myself]: This is how other people see me, good

lord. "

She developed her own therapy by riding horses at a local horse

farm. She also collected rats and hamsters as pets. Learning to care

for animals soothed her, and she told her mother not to waste any

more money on traditional therapists. So long as she had her pets,

her horses and her swing, she would be fine.

It's tough to find a cure for something when no one knows what

causes it.

The chief suspect for causing autism in the minds of many parents

and some doctors is thimerosal, a preservative that contains mercury

that was once used in most vaccines. There is substantial anecdotal

evidence that young children who appeared normal suddenly developed

autism after they received vaccinations.

For every study that seems to suggest autism is linked to high

levels of mercury, another one suggests there is no connection.

Could it be genetics? Research suggests it might be a factor. Is it

some chemical that we've unleashed into the environment?

The fact is, no one knows for sure. The only given is that, in the

last 20 years, something has triggered a disturbing increase in the

number of children born with autism.

And with it comes social costs. In Georgia, approximately $300

million in disability funds in the state budget are earmarked for

about 5,600 autistic children and 9,000 autistic adults in the

state, although it's not enough to cover all of them.

While the Georgia General Assembly has increased funding for autism

and other disabilities, the demand still exceeds the supply and

there is a long waiting list. " We have to have the dollars available

to meet the needs, " says Steve Hall, director of the state Office of

Developmental Disabilities.

The state has taken two steps to try to meet the demand. They're

placing money into the hands of individuals rather than state-run

facilities. " We know what we're doing now, " Hall says. " What we

don't believe in anymore is creating facilities or buildings. A

service is not a place. "

And the state has made it easier for individuals to spend the money

on what they actually need, not on what a bureaucrat imagines they

need. The state now assesses each individual's need, and tries to

find a funding source that will help. " Georgia is the first state to

do this, " Hall says. " Nobody will have to worry if they're getting

their fair share of the supports and services available. "

Joeff

GIANT STEPS: Grace has learned to integrate herself into

society.

Some of the burden is eased by nonprofit institutions such as the

Emory Autism Center and the Marcus Institute in Atlanta. Founded in

1991 with a grant from Bernie and Billi Marcus, more than 20,000

children with severe disabilities have gone there for academic

classes and behavioral therapy that will hopefully enable them to

attend mainstream schools and survive in society.

It's the place Blake calls home five days a week.

The door from the garage creaks open after dusk. Blake ambles

through, flanked by two caregivers who hold him by his elbows.

and Mark jump up from the couch and greet their son as he

enters the living room. Blake's damp, dark bangs stick to his ashen

forehead. Bruises and scars cover his arms and parts of his face. He

softly groans.

" How is he? " asks as she walks to her son, who has the body

of an adult and the mind of an infant. As she reaches him, she grabs

his elbows as a safety precaution and pecks him on the cheek.

" Good, just a bit tired, " a caregiver responds. " He's been flicking. "

" Why don't we put the helmet and mitts on then, " says.

She moves aside as Blake's dad, Mark, embraces his son. He nuzzles

up to Blake's ear, and in a loud whisper with a " Mr. T " low growl

says, " Hey, Blake. I'm gonna git you, boy. "

Blake giggles and a wide smile breaks across his face.

It's not every day that Blake giggles, much less smiles. Some days,

he's agitated and flicks his cheekbone with his fingers until his

flesh breaks open and blood trickles down his face. Other days, if

he's really upset and someone tries to quell his self-mutilation,

he'll go after the person.

He doesn't mean to hurt them, but he can't help it when he's feeling

bad. Sometimes it's because of a headache or stomachache, but he

can't talk so he can't tell his parents what's wrong. Instead, he

groans and destroys anything in his path.

Today, Blake is fairly calm. He spent his day at the Marcus

Institute learning to pop popcorn in the microwave and load his own

laundry. His education has been an arduous process. It took Blake

more than 400 tries to learn how to pull a shirt over his head. He

knows how to use a fork, but doesn't often use it. His parents still

have to help him grasp utensils.

Blake's lessons are geared toward helping him learn to live on his

own with assistance. The greatest fear for his parents is that he'll

have no one to care for him when they die. " If something happened to

us tomorrow, " says, " there would be no choice but to put him

in an institutional setting because his needs are so high. "

It's a lofty goal considering Blake requires the help of 10

caregivers each week. Though expensive, they have taken the burden

off Mark and . They get him in and out of the car. They take

him to a local pond where he'll feed the ducks. And one of them

spends the night with him to help him sleep and make sure he doesn't

hurt himself.

The best times for Blake are when he is in the water. His favorite

spot is his hot tub. Blake even eats his breakfast there in the

morning before he's off to school. He can sit in there for hours

because the whirling water soothes him. Sometimes, sitting in the

water even makes him smile. It always calms him.

Grace presses her stomach against the light blue rug in her

bedroom.

Her legs stretch out parallel to her bed and she grasps a No. 2

pencil. One of the Harry Potter books on tape plays in the

background. It's around midnight, but she's just getting started.

She slowly sketches a round head, but decides it doesn't match the

body so she erases it and starts all over. She's at work on an

illustrated story she calls " Sessions with Charity. " One of the

characters, Lightning O', suffers from a mild form of

Asperger's -- a character that represents Grace's complicated

and brilliant mind.

When her eyelids start to flutter an hour later, she puts down her

pencil and crawls into bed.

Though Grace no longer throws tantrums, kicks her mother or

runs away from school, she still gets flustered when she's with

other people. She's keenly aware that she's different. But she's

also determined to fit in with society. She wants to go to Georgia

State and live in Little Five Points but doesn't want to get a

driver's license because she's afraid she won't be able to find her

way around downtown Atlanta.

When she starts to think of all this, her head spins, and sometimes

it seems impossible to sort it all out. But she understands that she

just needs silence and a little time to figure things out.

That's when she ventures to her back yard, sits on the yellow seat

and begins to swing.