Living with autism

By Rhonda Simmons

Published: April 27, 2008

It’s like riding a roller coaster.

That’s how some parents describe the ups and downs of raising their autistic children.

Autism is a neurological disorder that impedes a person’s social interaction and communication skills and causes restricted and repetitive behavior. It is usually detected in children before the age of 3.

According to the Autism Society of America, autism is the fastest-growing developmental disability, affecting one in 150 children in the United States.

And boys are three to four times more likely to be diagnosed with this illness, experts say.

In order to help shed the light on this illness, April has been selected as National Autism Awareness Month.

“For me the importance of having April as Autism Awareness Month, and April 2 as World Autism Day, ultimately stems from the increased attention both bring to bear on a very pressing cluster of concerns related to autism-spectrum disorders,” said Chris Foss, associate professor of English, Linguistics and Speech at the University of Mary Washington in Fredericksburg.

There is no known single cause or cure.

However, experts say early diagnosis is key.

“Early intervention is indeed absolutely crucial,” said Foss. “Above all, though, I hope all the increased attention will help our world continue to move away from a primarily pathological understanding of disability as defectiveness and toward a more inclusive and respectful appreciation of it as difference.”

Foss’ lecture “Emerging from Emergence: Towards a Rethinking of the Recovery Story in Eight Contemporary Nonfiction Autism Narratives,” took place at April 2.

Why are the numbers of autism cases increasing so drastically?

“Pediatricians today are extraordinarily better prepared to properly diagnose these conditions than their cohorts 25 years ago, which is probably the most substantial contributing factor to the exponential rise in diagnoses,” Foss said. “At the same time, it seems to me not only plausible but in fact quite likely that there are environmental factors contributing to the increase as well.”

It is equally important, Foss said, not to lose sight of the fact that autism affects teenagers and adults, not just children.

“There needs to be a lot more emphasis on and funding for support at all stages, particularly the transition to more independent living,” he added.

Ian
In so many ways, Ian Rooper is just a typical 2-year-old.

Donning a blue shirt, blue sweatpants and bright yellow socks, he darted around his living room one recent Tuesday afternoon — one minute watching “Blues Clues” and the next jumping into his mother’s arms.

He throws a tantrum whenever he doesn’t get his way.

But in so many ways however, his mother, Terra Rooper, 34, says he isn’t like a typical toddler.

When Ian was about 13 months old, his mother said she noticed that her son would sit for long periods of time watching TV. And he would meticulously line up the couch pillows in circles.

“At first I thought it was no big deal,” said the mother of three last month inside her Culpeper home off of Sperryville Pike. “But then he would match up the corners because they had to be touching a certain way. And if he didn’t like the pattern that they were in, he would have to change it.”

Terra, who has two older children — Mikayla, 6, and Austin, 14 — knew something was slightly unique about her youngest child’s behaviors.

“The persistence in the way things have to be and when he started the hand flapping I knew it had to be something,” she said.

That’s when Terra and her husband, Billy, a nightshift production supervisor at the Culpeper Star-Exponent, took Ian to his pediatrician to find out the cause of what they describe as “odd behaviors.”

Several months went by and the Roopers weren’t getting any answers.

By his 18-month check-up, Ian wasn’t talking and continued with his anomalous actions such as hand flapping and walking in circles.

When the Roopers finally took Ian to the University of Virginia’s Kluge Children’s Rehabilitation Medical Center in Charlottesville, they said Dr. James Blackman diagnosed their son with high functioning autism spectrum disorder.

“A lot of pediatricians don’t know how to recognize autism,” said Terra. “But I just kept insisting that something wasn’t right.”

Turns out, Ian’s “odd behaviors” are known as “stimming,” a repetitive technique or behavior — often done unconsciously — autistic children partake in for comfort or reassurance.
The 30-pound blue-eyed blond-haired boy also loves looking at books.

Like a college student cramping for exams, Ian sat in the middle of the floor turning page after page skimming over thousands of words.

Although he’s not ready to read, Terra says, Ian loves to look at the letters and words.

A few minutes later something else had grabbed the active toddler’s attention.

Like any curious tot, Ian picked up the family’s cordless phone and began to dial.

Beep. Beep. Beep.

A phone in the other room rings.

Terra laughs.

Ian called the other line.

“He loves to play with the phone,” she said smiling.

He grabs his sippy cup, takes a drink and rolls around the carpet before he snuggles up in his mother’s lap.

It’s 4 p.m.

At this point, Ian — with both bright yellow socks kicked off of his tiny feet — is getting sleepy and that’s the last thing Terra wants at this point.
“If he falls asleep now, we’ll be up all night,” she said trying to keep Ian active and awake.

Terra looks down at her son and smiles as she strokes his blond tresses and ponders her youngest son’s future.

“We don’t know if we’re going to have to set up a special needs trust or are we going to need to save college money?” Terra asked.

That’s nearly 16 years away.

What she does know now is that Ian will participate in a preschool special education program at A.G. Richardson Elementary School in September.

“This is really, really good,” said Terra, uncertain of her son’s future.

At least it’s a start.

Rose
In any grocery store, shoppers may witness 7-year-old Rose Shelton reciting lines from the computer-animated film, “Bee Movie” as she walks down the honey aisle.

She may even need to tiptoe while she’s delivering her one-act performance.

No, this Emerald Hill Elementary School first-grader isn’t practicing her audition for the sequel to Jerry Seinfeld’s 2007 blockbuster.

Instead, she’s scripting — a common behavior autistic children engage in when they recall and repeat statements — a technique that allows Rose to calm herself.

“For Rose, reciting a script from ‘Bee Movie’ is soothing,” said her mother Casey Shelton, Culpeper County Public School special education advisory committee chairwoman.
Casey said her daughter was diagnosed at 4 1/2 years old as a mild-to-moderate high functioning autistic child.

“She developed fine, but she just didn’t talk,” she said.

Casey, who has two older children, says she noticed something different when Rose wasn’t meeting the same benchmarks as her sons.

“It was the potty training and the voice,” Casey said that alerted her. “She wore Pull-ups until the age of 5.”

At Emerald Hill, Rose — who is verbal — receives speech therapy and spends about 50 percent of her time in an inclusion classroom with general education students and the other half of the time she’s in special education classes with fewer students.

“Some kids work well in a smaller environment,” said Casey, of her daughter also diagnosed with profound attention deficit disorder. “Speech and language are her biggest deficits.”

For Rose, sitting down to complete a test is “next to impossible,” according her mother.

Casey said her daughter takes tests slightly different than her classmates. Rose’s teacher gives her three questions at a time.

While Rose probably won’t choose public speaking as a career, her mother says she’ll likely succeed in a more “behind the scenes” type of profession.

“These are the people who will have the patience to look at slides and cells over and over and find what’s different,” she said. “They’re the ones who are going to come up with these great computer programs. These are the people who are going to work great in labs especially in a quiet setting.”

“We need to know that there’s a place for these people,” she said. “They know that they’re awkward.”

Casey, an Autism Support Group coordinator in Culpeper, describes her brown-eyed dark-haired daughter as having “quirky behaviors.”

“Her social skills are different,” she said. “Concept learning is really hard for her. She doesn’t know what’s socially unacceptable.”

However, autistic children can learn social skills. These abilities just don’t come natural for them.

“It’s learning experiences, these kids just learn them later in life,” said Casey, of her daughter who will sometimes walk up to strangers and touch their jacket or rub up against them in a friendly manner.

Teylor
Teylor Reid likes to stick to her daily routines.

Every day after her snack, the 15-year-old Auburn Middle School eighth-grader enjoys a scenic walk — rain or shine — around her close-knit neighborhood with her mother, Linda Reid.

This time of year, Teylor usually collects dandelions as she treks through the quaint town of Warrenton.

Wearing her glasses and a silver necklace — with her name and the words autism, visually impaired and seizure disorder printed on a medallion — Teylor kept a fast pace Wednesday afternoon often leaving her mother several feet behind.

Teylor, who began talking after 18 months of age, was diagnosed with autism when she was 8 years old.

“As a family, we always thought that something was going on,” said the mother of two. “She didn’t babble. She just wouldn’t say anything.”

Now, Teylor sometimes repeats what her mother says or engages in brief conversations with people — usually telling it like it is. Meanwhile, Teylor prefers to interact with adults or remain alone rather than hang out with her peers.

She’ll even tolerate her 17-year-old brother, Conrad, who likes to play lighthearted jokes on his bashful sister.

“He’s my right hand man (especially) if I have a meeting or something to do,” Linda said. “He’ll look after Teylor for (us).”

For comfort, Teylor keeps three decks of cards on the dining room table and her toys have to be stacked the way she likes them.

“If you knock them over, she’ll get really upset,” Linda said.

At school, Teylor — who participates in speech, physical and occupational therapy in both the private and public sectors — is in a self-contained setting for most of the day, but she’s out among general education students during lunch, physical education and art-based classes.

“She does need the one-on-one for right now,” said Linda, a substitute teacher for Fauquier County Public Schools. “I think it’s important for her to be in the more general (education) classes instead of just the self-contained class.”

At the corner of Culpeper Street and Bus. 17, Teylor hit the jackpot where hundreds of dandelions had sprouted up. She must have gathered a handful in that one spot.

By the end of the 30-minute stroll, Teylor had collected 32 dandelions. She added them to her growing collection on the kitchen’s windowsill.

Teylor has a great memory, too. During trips to the grocery store when Linda forgets the list, Teylor often reminds her mother of things that are needed.

Teylor, who is hyposensitive, usually flicks her right hand or picks at her cuticles as a form of stimming.

“She used to pick her toenails off,” Linda said. “She could run into a sharp-edged object and not even realize that something hurts.”

Linda, who volunteers for Fauquier Autism Support Team, suggests that parents find out as much as possible about autism.

“You need to be your child’s best advocate,” she said. “Push for those therapies and push those insurance companies to pay for those therapies so that they can be productive members of society.”

“Absorb all of the information that you can and make it better for your child,” she said. “I never thought Teylor would be as far developed as she is now.”

Linda envisions Teylor — who waters all of the flowers in the family’s well-manicured yard — working as a florist in a nursery.

“She makes sure every little pedal gets water on it,” she said.

Rhonda Simmons can be reached at 825-0771 ext. 125 or .

Facts about autism
• One in 150 births
• One to 1.5 million Americans affected based on the autism prevalence rate of 2 to 6 per 1,000
• Fastest-growing developmental disability
• 10 to 17 percent annual growth
• Growth comparison during the 1990s: U.S. population increase, 13 percent; disabilities increase, 16 percent; autism increase: 172 percent
• $90 billion annual cost
• 90 percent of costs are in adult services
• Cost of lifelong care can be reduced by two-thirds with early diagnosis and intervention
• In 10 years, the annual cost will be $200-400 billion

Sources: Autism Society of America and
the Centers for Disease Control and Prevention

April is National Autism Awareness Month.
A few symptoms in infants
• Appears indifferent to surroundings
• Appears content to be alone,
happier to play alone
• Displays lack of interest in toys
• Displays lack of response to others
• Does not point out objects of interest to others (called protodeclarative pointing)
• Marked reduction or increase in activity level
• Resists cuddling

A few symptoms in young children
• Avoids cuddling or touching
• Frequent behavioral outbursts, tantrums
• Inappropriate attachments to objects
• Maintains little or no eye contact
• Over- or undersensitivity to pain; no fear of danger
• Sustained abnormal play
• Uneven motor skills
• Unresponsiveness to normal teaching methods and verbal clues (may appear to be deaf despite normal hearing)

Source: Neurologychannel.com