Re: Article about Autism and Six affected

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Article about Autism and Six affected

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A world of their own

One by one, autism — with its rocking, its garbled words and its

obsessions — has visited an extraordinary five of six children in one

Austin family

By Ball

AMERICAN-STATESMAN STAFF

Saturday, October 2, 2004

The doctor gave it to her straight, without feeling, and suddenly

Jeanette O'Donnell was free-falling into a mother's fears.

Autism.

He talked about more tests, more time to tell how bad it was and how

bad it might get for 2-year-old Caitlin. But Jeanette couldn't move her

mind off that word, that God-awful word that meant the end of

everything she imagined her daughter's life would be.

Autism.

So, she's retarded? Jeanette asked.

Not retarded, the doctor corrected. Autistic.

Then it clicked. Autistic, like " Rain Man. " Like the kids Jeanette

worked with in her first job out of college, the ones who grunted and

screamed and never talked.

Like Caitlin.

Jeanette had been telling people there was something wrong with her

dark-eyed daughter, who always cried and never spoke; who loved People

magazine and hated people; who obsessed about " The Price Is Right, "

shunned other children, flapped her arms and refused to make eye

contact.

Now, Caitlin's behavior had a name.

That day in August 1993 was the first time autism struck the O'Donnell

family, but it would not be the last. Over the next decade, Jeanette

and her husband, , would go on to have more children diagnosed

with the mysterious disorder.

Five of their six children have autism.

Even at a time when autism has reached record-setting proportions,

when the Centers for Disease Control and Prevention says 1 in 166

children is born with some version of the disorder, the O'Donnells are

astoundingly rare. National autism experts are not aware of a single

other family in the United States with five autistic children.

The O'Donnells have spent a decade learning to accept the unacceptable.

They have done it by alternating humor and anger, patience and zeal,

sorrow and optimism; by leaning on family, taking state aid, supporting

each other and closing ranks when neighbors talked behind their backs.

They have done it by creating a world of their own.

Autism is a brain disorder that impairs the way people talk, play,

relate to others and respond to the environment. It comes in different

forms with varying levels of intensity.

There is no empirical test for autism, no blood anomaly or other

physical marker to confirm its presence. It shows itself through

behavior, and experts say they know it when they see it.

One extreme is classic autism: the child who bangs his head, flaps his

hands in the air, spins objects, speaks unintelligibly and demands

routine. Two of the O'Donnell children, the oldest and the youngest,

are diagnosed with this most severe form.

The mildest form is Asperger's Syndrome: a child who might not appear

to be affected, who perhaps does well in school, but struggles to make

friends and fixates on limited interests. One of the O'Donnell children

falls on this end of the spectrum.

Then there is the gray area in between, varying shades of unusual

behavior that's seen in two more of the O'Donnell kids.

Sixty years after autism was first identified by Austrian psychiatrist

Leo Kanner, researchers are still confounded by it.

In the 1950s, doctors speculated the disorder was triggered by

" refrigerator " mothers who did not show affection. Others guessed it

was a psychiatric disorder or a manifestation of other types of bad

parenting.

Today, experts say autism is caused by a disruption of brain activity.

But they don't know which part of the brain is malfunctioning or why.

They don't know why the disorder is more severe in some people than

others. And they don't know how to fix it.

Researchers are investigating a number of possible causes, including

heredity, genetics and childhood vaccines.

Meanwhile, the number of children being diagnosed is skyrocketing.

In 1993, there were 1,972 kids in Texas schools with autism diagnoses,

according to the Texas Education Agency. By 2003, that number had leapt

to 12,700, a 544 percent increase during a period in which the state

population grew 22.1 percent. Other states report similar increases.

The Autism Society of America estimates that the number of Americans

with autism could rise from its current 1.5 million to 4 million in the

next decade.

No one knows why the numbers are spiraling upward.

Some attribute the increase to better diagnostic techniques. Others

say expanding definitions took in more children. Still other experts

maintain that the numbers reflect a true increase in the disorder.

After 13 years of living with it, Jeanette is still baffled by autism.

She can't count on it being any one thing to any one child. She can't

predict how it will manifest itself in her children.

Her confusion is shared by millions.

In his book " Through the Glass Wall: Journeys into the Closed-off

Worlds of the Autistic, " Dr. Buten describes autism like this:

" There are violent, hyperactive autistic people, and there are inert

and gentle autistic people, verbal ones and nonverbal ones,

heartbreakingly retarded ones and astonishingly brilliant ones,

graceful ones and clumsy ones, obsessive-compulsive ones and

easy-to-please ones, beautiful ones and ugly ones. "

Jeanette and have seen it all. Even when they didn't want to.

In a tidy Northwest Austin neighborhood stands a typical two-story

house that generates an atypical level of noise.

On any given day, 4-year-old Little Pat will be in the living room,

howling an off-key rendition of " Redneck Woman " or some other country

tune.

Three-year-old Kiernan will be sitting in the den, violently

thump-thump-thumping a maroon-cushioned rocker against the wall.

will be in the bathroom, washing her hands with peculiar passion

for a 7-year-old. Meaghan, 6, will be tattling on someone. Deirdre, 10,

will be quizzing an unwilling parent on Greek mythology.

Caitlin won't be in sight. The 13-year-old will be in her room,

drawing on the closet or playing video games.

Jeanette will be talking on the phone or cleaning the playroom or

picking Little Debbie Swiss Cake Rolls off the rug. She'll be harried

but happy because she always wanted a big family, a family just like

this one.

Sort of. She didn't count on the autism.

People always ask the O'Donnells why they continued having children

when they knew some of them were autistic. The couple's stock answer

goes something like this:

No one in their extended family had ever been diagnosed with autism.

Doctors repeatedly told them the disorder wasn't hereditary, and the

O'Donnells already had four children by the time a second child was

diagnosed in 1999. The last two were unplanned.

But why and how those six children were conceived really doesn't

matter. They're here now — and people judge them.

Friends who Jeanette and say criticized them for having so

many children stopped calling. Some neighborhood parents treated them

like a curiosity, Jeanette says, pointing and whispering as she brought

her children to school.

Breaching the outside world became a burden. Going to Walgreens or

H-E-B was an often unpleasant adventure that forced Jeanette to fend

off strangers with loud opinions.

Keeping this family together takes sacrifice. Jeanette gave up her

in-home day-care business to watch her own children.

Supporting the family keeps away from home most waking hours.

A Brooklyn native who met Jeanette 14 years ago in a New York elevator,

he works during the day at a mail distribution center. At night, he

umpires softball games for the City of Austin.

By the time he returns — sometimes after 11 p.m. — the daily dramas

have given way to the silence of his sleeping brood. By then, Deirdre

has finished griping about the sauce on her pizza, has savored her

nightly shower, and Caitlin has gone to sleep in the next day's school

clothes.

, 39, is the mellow one, the one who shrugs when Jeanette

bounces a check and holds his temper when Meaghan disobeys. Jeanette,

43, is the mouthy one, the die-hard Republican who loves paisley and

cries over episodes of " Extreme Makeover: Home Edition. "

Most of the child rearing falls to her, an arrangement that could

stress any marriage. But over time, the couple has divvied up the

duties that make their lives work.

earns the money, assembles the bicycles, drives to

therapy during long lunches and picks up Caitlin's prescriptions. He

fixes the computer, does the laundry and shops for groceries after

work.

Jeanette runs the house. She makes the rules, provides the praise and

issues the punishments. She heads up the yard sales, the birthday

bashes and the impromptu search parties for missing stuffed animals.

She keeps seven televisions in the house so no one will fight about

what to watch.

She plows through reams of paperwork so her kids will receive early

education classes, health coverage from the Children's Health Insurance

Program and $6,600 a year from the Austin County Mental Health

Mental Retardation Center. She coordinates her children's speech and

physical therapies, all of which are covered by insurance and state

aid.

Together, Jeanette and have built a safe space for their

children, a refuge beyond the reach of critics who tell them too much,

too often.

This is the O'Donnell house. It is built on love.

Caitlin

Caitlin Carole was the first child, the foundation of a family for

which little would go as planned.

The hazel-eyed baby arrived on Feb. 8, 1991, and was different from

the start.

In the hospital, the infant didn't exactly cry: She squeaked, like a

kitten. When her parents took her home, Caitlin cried constantly and

barely slept.

The doctors blamed colic, suggested formulas and tablets, said she

would get better. She didn't.

As she grew older, Caitlin stopped responding to her name. She

wouldn't look at her parents and jumped all the time. She fixated on

television shows such as " The Price is Right. "

She didn't speak. Not even a few words.

" The doctors blamed it on us, " Jeanette said. " They said we did too

much for her, and we should make her ask for things. "

Finally, in August 1993, an Austin neurologist diagnosed Caitlin with

autismlike tendencies. She was later labeled with classic autism, the

most severe of five pervasive developmental disorders that are

considered forms of autism.

Classic autistics have problems talking, relating to people and

playing. They can be hypersensitive to their environment and react

strongly to certain sounds, colors and textures. They compulsively

cling to rituals, such as eating the same foods or watching the same TV

show every day at the same time.

Change can upset them — and Caitlin resisted it at all costs.

Her parents quickly launched a regimen of therapies suggested by books

and doctors.

They tried vitamin therapy for six months, increasing Caitlin's

vitamin B and potassium intake. No change.

They tried a gluten-free diet, substituting rice noodles for Caitlin's

beloved pretzels. Caitlin was miserable, so they gave up.

They tried music therapy, but it didn't last. Classes were held too

far from home.

The family stuck with speech, physical and occupational therapy.

Caitlin learned sign language, obsessed over country music and kicked

her parents when they made her mad. She craved green peppers and

demanded four Fruit Roll-Ups a day, always the same colors: green, red,

yellow and blue.

Therapists from the Austin County Mental Health Mental

Retardation Center and other state agencies worked with Caitlin every

week. She went to public school and attended regular classes.

Finally, when she was 8, Caitlin started talking. She spoke in a

high-pitched, staccato voice like that of a deaf person.

" No more babies, " was her first sentence to her mother, who went on to

have two more children.

Caitlin grew into a pretty teen with dark, straight hair that she

hated to tame. It grew long, past her waist, creating a hippie-witch

hybrid look that flattered her creamy skin and dark eyes.

Caitlin was doing well. But at night, the fear gnawed at Jeanette.

What if Caitlin got pregnant someday? The girl could never raise a

baby.

After Caitlin reached the point where she was physically capable of

becoming pregnant, Jeanette talked to the doctors about sterilizing

her, a request flatly denied for legal and moral reasons. So when

Caitlin's cycles became painful, Jeanette put her daughter on birth

control.

" She will never conceive as long as I am alive, " Jeanette said. " It'll

be over my cold, dead body. "

For now, it would seem Caitlin has no interest in motherhood.

On a recent afternoon, the teen sat cross-legged in front of the

television, watching the movie " Space Jam. " The 13-year-old laughed,

punched the rewind button on the remote control, laughed, then hit the

rewind button again.

Caitlin was watching the movie backward.

She laughed and laughed, the high-pitched squeal of her giggles

drifting through the house.

Deirdre

Deirdre Siobhan was the second, a window into the cruelty of a disorder

that for years can lie undetected.

After Caitlin's birth, the doctors had said autism wasn't genetic, and

Jeanette wanted to believe them. But what if they were wrong?

Deirdre's birth on May 11, 1994, seemed to prove them right.

The dark-haired, blue-eyed infant rarely cried. She slept through the

night. She ate heartily, talked at 6 months, walked at one year and was

a great relief to her worried parents.

Caitlin hated her guts.

When Deirdre started using a walker, Caitlin repeatedly lured her

sister into a bedroom and knocked her over. She screamed when Deirdre

came too close.

Deirdre was bright, the kind of student whom teachers love and

classmates loathe. She struggled to make friends, but her parents

happily accepted her as a normal child with normal challenges.

But by the time she was 6, Deirdre stopped being perfect and started

being quirky.

She obsessed over cartoons, had few friends, twisted her fingers and

made odd facial expressions. She had trouble understanding personal

space and talked one inch from her mother's face. She started picking

her bread apart and refused to eat anything wet.

Jeanette started to wonder if something was wrong. And that's when the

complexity of autism hit her.

For years, Jeanette had assumed Deirdre was normal. The girl talked,

smiled, played and hugged. She looked at her mother, answered to her

name. She didn't rock, grunt or avoid people. She didn't have sensory

problems or speech trouble.

Those were Jeanette's red flags for autism, the ones she understood.

Now Deirdre was showing her parents a more subtle version of the

disorder: Asperger's Syndrome.

It was a slap in the face.

Asperger's is a type of autism that causes problems with social and

communication skills but does not trigger language delays. People with

Asperger's can be socially awkward, may not understand conventional

social rules or may show a lack of empathy. They may make limited eye

contact, seem to be unengaged in a conversation and not understand the

use of gestures. They also have average or above-average intelligence.

Just like Deirdre.

In February, researchers with the Autism Genetic Resource Exchange

came to Austin to perform tests on Deirdre and two of her siblings. The

project — part of the California-based Cure Autism Now — focuses on

collecting information on families with more than one autistic child.

Doctors and researchers go to homes, perform medical, social and

psychological tests on the children, then give the data to scientists

studying the disorder.

The autism research group has more than 1,100 families in its

database, though none with as many affected children as the O'Donnells.

On a February morning earlier this year, the research group came to

the O'Donnell house to test Deirdre, and Kiernan. The boys,

Jeanette knew, would certainly test autistic. Both had been diagnosed

by their doctors years before.

Deirdre was the wild card.

While her siblings played loudly on the other side of the house,

Deirdre sat in the living room watching researcher ne Cohen

shuffle some papers.

" Is this going to be inkblots? " Deirdre asked.

ne grinned. " You'll see what it is. "

They started with toys. ne placed a few dolls, a miniature soccer

ball, a fire truck and a toy teacup on the nearby coffee table. Then

she pulled out a toy dinosaur, and Deirdre pounced.

" Dinosaurs didn't live when people were around, " Deirdre lectured.

" They didn't get along. "

ne nodded. " You can go ahead and play with those, " she said.

Deirdre stared.

" Just play? "

" Yep, " ne said.

Deirdre appeared confounded. She picked up the soccer ball, inspected

it, then put it down. She puzzled over the teacup. She looked at a

Ken-like doll as if it were made of bugs.

ne picked up a doll. Deirdre mirrored her and soon the two were

playing like little girls at a sleepover.

Suddenly, ne pretended her doll was injured.

" Ow! " she yelled, hoping to prompt some kind of empathy from Deirdre.

" I'm hurt. I'm hurt. "

Deirdre missed her cue and looked away silently.

Later, ne asked the preteen a few questions about herself.

What makes her happy? Candy.

What makes her sad? Not going somewhere she wants to go.

What is she afraid of? Vampires.

Deirdre mentioned nothing about family or friends or things they do

together, nothing that indicated how she connects other people to her

emotional life.

Then Deirdre admitted it annoys her when her classmates make fun of

her. They call her fat and dumb as a rock.

" Why do they do that? " ne asked.

" Probably because of the way I look, " the then-fourth-grader answered.

" Even the third-graders make fun of me. "

Jeanette, who was listening in the other room, cringed.

" I've got to get her some help, " she said. " It's sad. "

That was the end of the autism talk until this summer, when Jeanette

and Deirdre stood talking in the kitchen.

" Do you remember when you were being tested? " Jeanette asked.

" Yes, " Deirdre answered. " Do I have autism? "

" You have something called Asperger's, " Jeanette said. " But it doesn't

make you any different than you already were. It just means you're

smarter than everyone else. "

" Yeah, I know I'm smarter than everyone else, " Deirdre answered. " That

makes sense. "

And that was that.

Michele was the third, the wall that would seal them into forever

accommodating an unwelcome guest.

She entered the world screaming on Oct. 28, 1996, and kept on going

for the next few years.

The chubby brunette threw hysterical tantrums and couldn't calm

herself. She had trouble picking up objects, wouldn't play with her

peers and flapped her arms in the air. She wouldn't talk.

By the time was 2, Jeanette suspected was autistic.

In 1999, the child was diagnosed by local doctors. She was later

labeled with Pervasive Developmental Disorder — Not Otherwise

Specified. The label — another of the five on the autism spectrum — is

given to people who show some autistic qualities but not enough to meet

the criteria for classic autism. Children with this disorder can have

social and speech problems as well as unusual sensitivities to specific

sights and sounds.

's developmental disorder kicked her senses into overdrive,

delayed her speech and blunted her fine-motor skills.

She also had a peculiar attraction to water. Water soothed her, so she

ran the bathroom sink until it overflowed. She used entire bottles of

liquid soap within minutes.

She smeared feces on the bathroom walls and clogged the toilet by

using a whole roll of toilet paper.

She spoke in mangled words, saying " Dappy Duck " for Daffy Duck, and

" toccer " for soccer.

And so, the O'Donnells adjusted. They bought only bar soap, rationed

's toilet paper and made sure she didn't spend too much time in the

bathroom. They got her speech, physical and occupational therapy.

Jeanette discovered with that accommodation and survival go hand

in hand. She has learned to work around her children's limitations, to

pick her battles wisely. So she accepts Caitlin's penchant for drawing

on walls. Walls can be repainted. She accepts Deirdre's fixation on

Greek mythology and tendency to talk when no one is listening. To her,

Deirdre is a genius in waiting.

Little Pat's speech problems don't overshadow his giant imagination

and off-key singing voice. Kiernan's violent rocking and abnormal

fascination with the Weather Channel can't erase Jeanette's smile when

her baby gives her kisses.

The same goes for . Even on her worst days, to Jeanette, the

7-year-old is just a regular kid who loves to sing, play with dolls and

boss her siblings. She wears tight clothes because the feel of the

fabric against her skin relaxes her. She's very affectionate, a loving

girl who hugs and kisses her playmates, even if they don't like it.

She also doesn't always know her own strength. One day, , who

weighed 120 pounds at last count, pulled a tutu over her Hard Rock Cafe

T-shirt and started to dance in the playroom. She grabbed her 64-pound

sister Meaghan and lifted her into the air in an awkward, if not

frightening, pas de deux.

" Ow, my crown, " Meaghan yelled, pulling at the sparkly toy on her

head. lifted her sister higher.

Jeanette walked in, glanced at the impending danger and casually

offered a warning: " If you knock her out, I'm not taking her to the

hospital. "

Jeanette picks her battles. This isn't one of them.

laughed, lowered Meaghan a few feet from the floor, and

harmlessly dropped her on her bottom.

Meaghan

Meaghan Keara was the fourth, the one whose mysterious lack of autism

would become the slender path between her siblings and the outside

world.

She arrived on Jan. 15, 1998. Like her older sister Deirdre, she was a

perfect baby who rarely cried, slept through the night and ate well.

She was a tiny redhead — the only redhead in the family — and reached

all her childhood milestones without trouble.

From an early age, Meaghan seemed unusually attuned to her siblings'

emotions, and to her own.

Meaghan always demanded a lot of attention. Though she doted on her

older sister , she couldn't stand being replaced as the baby when

arrived. She screamed every night when Jeanette tried to rock

to sleep.

Then came Kiernan, and Meaghan became maternal, quickly bonding with

the baby. When he cried, she picked him up. When he needed a change,

Meaghan grabbed the diaper. When he climbed on furniture, she pulled

him down.

Today, even though Kiernan weighs nearly as much as she does, the

6-year-old still carries her little brother around the house.

She is nurturing, but she is more than that. She is a mystery.

Why, in a family with five autistic children, would Meaghan not have

some form of the disorder? What is it that makes her different from her

siblings? So far, no one knows. And there's no guarantee that she won't

eventually be diagnosed. After all, Deirdre was 10 when her Asperger's

was discovered.

For now, Meaghan is simply normal. She doesn't need speech or

occupational therapy, like . She has no trouble making friends

or relating to people, like Deirdre. She doesn't suffer from sensory

problems, like .

Yet Meaghan's normalcy sometimes forces her to act as her brother's

keeper — literally.

Earlier this year, Kiernan had a hard time adjusting to the preschool

classes he attended at Summitt Elementary. When the teachers couldn't

calm him, they would go get Meaghan.

The girl always knew what to say. She'd sing to Kiernan or recite the

introduction to one of his favorite shows.

Sometimes, when she heard him crying, she didn't wait for the teachers

to come get her. She'd walk over on her own.

Like many siblings of children with disabilities, Meaghan has become

the caretaker, and not just with her own family. She worries about her

classmates. She doesn't like to see people unhappy.

Still, Meaghan's need to nurture conflicts with her intense desire for

attention. She is a drama queen, an emotional tornado who can go from

laughing to wailing within seconds.

On an afternoon when Meaghan is feeling neglected, she starts pouting.

She walks to the playroom, intentionally twists the lock on the outside

of the door, and shuts herself in. Then she starts screaming.

" I'm locked in! " she yells. " Let me out. "

Jeanette gets up from the table and opens the door.

Meaghan stumbles out, her eyes wet with tears, and Jeanette sits down.

" Negative attention is better than no attention, " Jeanette sighs. " It

drives me crazy. "

Meaghan turns to the playroom door and again locks herself in. She

starts screaming. Jeanette lets her out.

Meaghan does this several more times before Jeanette finally squats

down next to her daughter, now sprawled on the floor between the den

and the playroom.

" What did you do today? " she asks. " Who did you play with? "

In the glow of her mother's attention, Meaghan's pout melts away.

was the fifth, the one who would usher guilt across the

threshold.

He arrived shortly after Christmas in 1999. After his Dec. 27 birth,

the infant proceeded to scream nonstop. As he grew, he refused to step

on anything but the carpet and constantly walked on his toes.

Little Pat didn't reach the ever-important baby milestones — like

identifying his nose or mouth — until months after his peers. He didn't

speak at all.

Then, slowly, the boy started to improve. By 2, he was smiling and

laughing. He had even begun to speak, boldly proclaiming " wah-ter " to

his proud parents.

Jeanette faced a dilemma.

She had been hearing a lot about immunizations and autism. Parents

across the country and some scientists claimed vaccines prompted

autistic behavior in previously normal small children. Mainstream

science had not yet accepted that theory, but by early 2002, the debate

was hot and loud.

Jeanette held off on and Kiernan's shots while the experts

fought it out. But as Little Pat approached preschool age, she wondered

if she should get them immunized.

On Jan. 6, 2002, was injected with the measles-mumps-rubella

vaccine. Kiernan got the diphtheria-tetanus-pertussis shot.

Within days, Jeanette saw a difference in Little Pat. He went from

saying " wah-ter " to " wah. " Then he ceased saying it altogether. He

became obsessed with television shows such as " Judge Judy " and " Judge

Joe Brown. " Heaven help the unfortunate adult trying to bathe or dress

the boys during TV time.

On March 16, 2002, both boys were diagnosed with autism. Little Pat

had Pervasive Developmental Disorder — Not Otherwise Specified and

sensory integration dysfunction. Kiernan's condition was described as

" full-blown " autism.

Jeanette was filled with grief and guilt. She blamed herself for

allowing the shots and now believes that vaccines can trigger the

disorder's onset in vulnerable children.

Scientists are still debating that theory. This May, the Institute of

Medicine — a branch of the D.C.-based National Academies of Science,

which generates reports on science, medicine and health — released a

study dismissing the reputed link between vaccines and autism. That

work was criticized by some people, including Dr. Wakefield, a

British researcher who believes there's a possible link.

Little Pat, now 4, has improved with time. But the round-faced boy

still hates water and can't abide the sound of the dishwasher. When he

speaks — and he's usually yelling — his words are almost impossible to

understand.

" Ma, gib me terrios, " he says one day, sitting at the the table.

Jeanette, who is trying to keep Kiernan out of the living room, doesn't

answer.

" Ma, gib me terrios. MA GIB ME TERRIOS!!!! " he screams.

Translation: Mom, give me Cheerios.

Most times, Little Pat can be found in the living room, watching

Country Music Television on the big-screen TV his father won in a

raffle. He pals around with and Meaghan, plays on the Cartoon

Network computer Web site and calls his mother Jeanette.

Well, he tries.

" Danette, can I have some cream? " he asks, referring to Cool Whip.

Jeanette laughs. " Why do you call me Jeanette? Call me Mommy. "

" But Danette is your name, " he answers earnestly.

" That's right, " Jeanette says. " Danette is my name. "

Kiernan

Kiernan Arthur was the sixth and last. After him, the O'Donnells would

latch the door and face their fears of an uncertain future.

The baby was born on March 20, 2001. He was a happy boy with big blue

eyes and beautiful skin and perfectly normal behavior.

His father had a vasectomy anyway. Six was more than enough.

Early pictures show Kiernan making eye contact and interacting with

his siblings. In one photo, the boy is wearing a red wrapping-paper bow

on his head. He is smiling.

As he approached his first birthday, before his vaccinations, Kiernan

started to rock. His little body swayed back and forth as he watched TV

or sat in his high chair. Jeanette didn't worry. Her cousin, now a

banker, did they same thing when he was a boy.

Compounding her confidence was the fact that Kiernan was talking. When

came home from work, the baby would say " Dada, " something

neither Caitlin nor did at that age.

Then came the vaccinations. Whether or not science proves a link

between shots and autism, the O'Donnells first noticed Kiernan's change

after he was immunized at 10 months.

He stopped saying Dada. He stopped responding to his name. He broke

out in eczema head to toe and refused to look at anyone. He started

shoveling food into his mouth with both hands. He developed bowel

problems and refused to relieve himself for 10 days at a time.

saw it first. Jeanette was stunned when the doctor diagnosed

Kiernan with full-blown autism days before his first birthday.

With all the others, there had been signs. Caitlin, and

had all been screamers. But Kiernan was perfect. His autism was like an

unexpected blow from the neighborhood bully who wouldn't leave them

alone.

As Kiernan got older, he got worse.

The boy became fixated on television. He loved the Weather Channel and

the preview channel. He watched the " Weakest Link " at 5, " Shop 'Til You

Drop " at 5:30, and another episode of " The Weakest Link " at 6. He

changed the channel obsessively, seemingly taking comfort in the

flashing red numbers of the cable box.

In March, Kiernan started going to preschool for children with

disabilities at Summitt Elementary — and he hated it. He cried most

days but enjoyed playing with the computer.

Teachers are convinced the 3-year-old can read. Jeanette has long

believed Kiernan isn't just staring at the preview channel but is

reading the show listings.

He still rocks. He broke the den window when the chair he was rocking

slammed into it. Now his parents keep a crib mattress behind his maroon

rocking chair.

Sometimes he laughs. He laughs when his mother recites the opening to

" Judge Judy " ; when his father throws him up in the air; when Meaghan

sings " The Farmer in the Dell. "

But that laughter doesn't come from an emotional place. It comes from

a place that craves very specific sights, sounds and touches; a place

that allows certain stimuli to soothe him when nothing else can; a

place that even those closest to him can't understand.

Kiernan is the real heartbreak for his father, who had dared to hope

his last child would be normal. He refuses to look at photographs in

which Kiernan is smiling.

" I can't look at those pictures for very long, " said. " That is

not the child we have today. "

The future

It is a late summer afternoon and the O'Donnell house is buzzing.

Kiernan bangs back and forth in his rocker. Deirdre grabs a fistful of

pretzels. Meaghan wants to know why the sandwiches are cut in

triangles. runs into the living room and turns on Country Music

Television.

Dr. Wakefield stands in the den, quietly watching the chaos

unfold.

Wakefield is a British gastroenterologist smack in the middle of the

childhood vaccine debate. Six years ago, the London doctor published

research citing a possible connection between immunizations and

autistic children.

Since then, the married father of four has been roundly criticized by

colleagues and the English press. Some doctors agree with him. Many

parents embrace him.

After forging a partnership with a local couple, Wakefield recently

moved to Austin to develop the Thoughtful House Center for Children.

The facility will serve as a medical clinic, research center and school

for children with developmental disorders.

Austin is the perfect location for Thoughtful House because Texas

needs more medical care and research for autistic children, Wakefield

said.

" We are bringing them medical intervention where there currently is

none, " he said.

After learning about the family, the British doctor has come to see

the O'Donnell children in action. By the end of the visit, Wakefield

offers to arrange for free medical treatment and dietary advice in

exchange for a chance to study the children.

" I think we can do a lot for this family, " he says.

Jeanette agrees to cooperate. She is guarded, but hopeful.

Right now, the prognosis for the O'Donnell children is as hazy as the

causes of their autism. Doctors can't say exactly how each child will

turn out. For now, Jeanette can only guess at their futures, and those

guesses go something like this:

• Caitlin will graduate high school and perhaps continue her education

in college or at a trade school. She'll get some kind of manual or

repetitive work. She'll never marry or have children. She'll live with

her parents until they can no longer care for her, then perhaps reside

at a group home for autistic adults.

Caitlin says she wants to be an animal doctor. Except on the days that

she wants to be an artist.

• Deirdre will graduate high school and go on to college. She'll marry

and possibly have children. She'll continue to struggle with her social

skills but will improve with time.

Deirdre says she wants to be a teacher. Maybe she'll teach Greek

literature.

• will graduate high school, maybe continue her education. She'll

probably marry and have children. Speech will continue to be a

challenge, but Jeanette hopes it will improve.

says she wants to be an artist. Maybe she'll be a sculptor.

• Meaghan will graduate high school, possibly go on to college.

Jeanette suspects her daughter who has for so long served as a little

helper will eventually break away from the family. She'll seek

independence, discover herself, then return to the fold more

emotionally secure.

Meaghan wants to be famous, like -Kate and Olsen.

• will graduate high school and continue his education. He'll

keep working on his speech, which is still incomprehensible to most

people. He'll marry and have children. Jeanette will torture his wife

because she'll never be good enough for her first son.

wants to be a country-western singer.

• Kiernan is the mystery.

Will he ever talk? Will he do well in school? Will he maintain healthy

relationships with other people? Will he end up in an institution?

No one knows. But there is hope. The 3-year-old is now reading and

playing with toys. He occasionally says " Mama " and gives his mother

kisses.

The uncertainty of it all haunts Jeanette. She breaks out in rashes

and wonders if the nagging pain in her stomach is an ulcer.

That makes her worry more.

So for now, Jeanette just waits. She waits for the future to bring her

answers, options, maybe even a cure.

She says that if she dies, she's taking Caitlin and Kiernan with her.

She says that to avoid the real conversation.

" I mean look at him, " she croons, pointing to Kiernan in his rocker.

" Who could take care of him better than me? "

On Oct 4, 2004, at 7:42 AM, Singleton wrote:

>

> Could you post the article?

> Thanks,

>

>

[Guest guest]

Does anyone know if this family is a member of Texas Autism? Thoughtful House

was mentioned, and it included a school. Does anyone know about this?

Carlson