Gene Dalton | The Roanoke Times

Nicholas Hullender, 8, was diagnosed with autism when he was 2. He can do many things as other children can, such as taking a trip to the pool. But his mom, Ellen Crouch-Hullender, has to keep close watch on him.

Related

• Video: Living with autism

The Facts

National Institute of Mental Health cites the following early indicators of autism

• Does not babble, point or make meaningful gestures by age 1
• Does not speak one word by 16 months
• Does not combine two words by 2 years
• Does not respond to name
• Loses language or social skills
• Poor eye contact
• Does not seem to know how to play with toys
• Excessively lines up toys or other objects
• Is attached to one particular toy or object
• Does not smile
• At times seems to be hearing impaired

Autism: More questions than answers

• How many people are affected? There is no official count. For decades it was believed that between one in 2,000 and one in 2,500 children were born with the disorder. In 2004, the Centers for Disease Control and the American Academy of Pediatrics summarized several studies to estimate a rate of one in 166. This year, the CDC released data from 2002 indicating one in 150 children have autism, but that figure is based on the counts from 14 locations and may not reflect the population as a whole. Between 1994 and 2004, the number of children between ages 6 and 17 in public schools who were classified with autism increased nearly eightfold nationwide, but whether that was due to more cases or better screening is unclear. Combined, the New River Valley’s five public school divisions reported 89 students with autism last year, more than three times as many as in 2000.
• What is the cause? Scientists don’t know, though multiple genes have been associated with autism and the disorder has been linked to brain irregularities. Parents with one child with autism have about a one in 20 chance of having another child with the disorder, a far greater risk than the general population. The old notion that bad parenting causes autism has been debunked. So far, no rigorous scientific studies have supported widespread fears that autism can be caused by the measles-mumps-rubella vaccine or thimerosal, a mercury containing a preservative that had been in several vaccines but since 1999 has only been used in flu vaccines.
• How is it treated? There is no cure, but early detection and intensive, therapeutic education methods increase the likelihood a child will develop to a higher degree. Effective teaching programs tend to build on a student’s interests, have a predictable schedule and instruct using a series of simple tasks to teach skills. Dietary restrictions or supplements have been reported to help some children, but their overall effectiveness has not been proven.

SOURCES: Centers for Disease Control and Prevention, Commonwealth Autism Services, Institute of Medicine of the National Academies, National Institute of Mental Health

When Nicholas was slow to walk, his mother became concerned.

"My mom and his dad told me I was just a worrywart because he wasn't around other children and things," Ellen Crouch-Hullender recalled. "He is an only child. So I just kept watching."

She noticed how intently Nicholas rocked in his bouncy chair. She watched how often he flapped his hands.

Then one afternoon in her eye doctor's office Crouch-Hullender picked up a Good Housekeeping magazine. There was an article on autism. It listed everything she had noted in Nicholas.

"I went, 'Oh no,' " Crouch-Hullender recalled. "My heart just sunk."

A few months later, when Nicholas turned 2, he was officially diagnosed. Crouch-Hullender had an answer to her son's unusual behavior.

And that's when her questions really began. Would Nicholas ever talk? Could he ever live by himself? What teaching method or special diet would be best?

Years later, Crouch-Hullender is still wrestling with such questions about her son, who is now 8 and can say just two words, "hi" and "bye," though he can type his name and can use sign language to say "I love you" to his family.

"The biggest frustration is you don't know," Crouch-Hullender said while watching over Nicholas in their Dublin home one recent afternoon. "You want to know. Is it something I did as a parent? Is there something you can give to your child? You just don't know what could [have] caused it, and what you can do."

Numerous other parents are wrestling with the same questions. As the number of children being diagnosed with autism has skyrocketed, both interest and research in the disorder has grown. But definitive answers about the condition remain elusive -- a confusing and heart-wrenching situation for parents.

"It's a mystery in so many ways," said Angela Scarpa, an associate professor of psychology at Virginia Tech, who heads an autism clinic at the school and has a son with a high-functioning form of the condition.

Her clinic has a waiting list of people who suspect their children have autism. And as awareness of the disorder spreads, adults are even coming in to get screened, Scarpa said.

Research into genetic components of autism are ongoing. Concerns have flared over environmental triggers for the disorder, which range from vaccines to pesticides to milk. But the answer to what causes autism has not been found.

For decades it was thought that autism occurred in about one in 2,000 children. A 2002 study put the rate at about one in 150. Whether that represents an actual increase or reflects better awareness and diagnoses is still debated. In the Pulaski County School System, where Nicholas is heading into third grade, 14 children had diagnoses of autism last year compared with two in 2000, according to Commonwealth Autism Services.

The degree of impairment varies widely, but all people with so-called "autism spectrum disorders" have reduced social, emotional and communication skills. They often exhibit repetitive behaviors and struggle with changes in their routine.

In support groups, parents with children with autism spectrum disorders -- including Asperger's syndrome, which does not impede a person's functioning as much as the autistic disorder Nicholas has -- often commiserate about their children's "meltdowns," which can be triggered by seemingly minor things.

Jonathan Reid of Blacksburg said his 10-year-old son, Ian, who has Asperger's, has improved, but he used to get up and run out of his classroom when he was upset. To this day a few things, such a loud noises or flying insects, bother Ian tremendously.

"There's several different types of meltdowns that they've discovered," Reid said. "There's the lashing-out meltdown where a kid just starts lashing out, hitting everything that he can get a hold of. There's the runners, which is Ian's group. There's the shouters, which is they just start shouting at the top of their lungs. There's the puddlers, where they'll just fall on the floor and just -- boom -- you can't get them up."

Susan English, whose 7-year-old daughter, Caitlin, has Asperger's, set up a parent support group after moving to Blacksburg from Tulsa, Okla. One of her goals for the group -- which has its second meeting at 7 p.m. Tuesday at the public library in Blacksburg -- was to give parents a comfortable, confidential forum to talk about what they are going though.

"It's very challenging to have a child that is autistic," English said, "and other parents that are not going though that ... they don't really understand."

Crouch-Hullender, who attends a different parent support group with her husband, Andy Hullender, said her son is generally a sweet child who loves football and NASCAR, but that he has meltdowns, too.

Nicholas tends to pinch when he gets mad. A naturally fair-skinned redhead, Crouch-Hullender now frequents a tanning salon so that bruises from where her son has grabbed her won't show as much.

Nicholas is among the roughly 40 percent of children with autism who do not speak. Many children with autism are also mentally impaired, but to what degree can be tough to tell because of their severe communication barriers.

Crouch-Hullender said her son is "very intellectual" in some regards but still struggles with some tasks a kindergartner could do.

When Nicholas was 5, doctors told Crouch-Hullender her son could never get by on his own, but she holds out hope that he will inherit her house one day and be able to live at least somewhat independently.

She was encouraged by a recent encounter in a Wendy's restaurant, where she met a family whose son with autism started talking at age 9. The family credited cod liver oil with helping their son to improve, said Crouch-Hullender, who is considering that supplement for Nicholas.

"My mother keeps having dreams that he talked," Crouch-Hullender said. "I'm like, 'Well, you never know, Mom.' "

One of the nutritional theories about autism is that addressing a deficiency in the type of fatty acids found in fish will help. A 2003 study on the impact of omega-3 supplements on autism suggested more research was needed to prove benefits.

Crouch-Hullender is also excited that a private special-needs school is opening in the former Claremont Elementary School just a few miles from her home. Camelot of Virginia, the company running the school, will offer a program for autistic children while also serving children with other problems.

Though there is no guarantee Nicholas can even go to the school, Crouch-Hullender flew to Chicago to visit a similar program run by Camelot's parent company near O'Hare International Airport. She returned hopeful that changing schools may spark a breakthrough for Nicholas, though she knows there are arguments both for and against separate schools for special-needs children.

"You have to figure out how you're going to make the best of life for your child, and I'm still trying to do that," Crouch-Hullender said.

While at the airport heading out to Chicago, Crouch-Hullender ran into Roxana Hartmann, a Blacksburg woman whose son once attended a special-needs school but later went to public school in Montgomery County. Hartmann, who headed the Greater Roanoke Valley's chapter of the Autism Society of America before it became inactive, is an advocate for educating children in regular classrooms.

"To provide an education in a segregated environment, that only prepares them to become a segregated individual as an adult," she said.

Camelot of Virginia Executive Director Larry Morrisett said the company's goal is not to remove students from public schools but to be a resource for school districts that are not able to provide the level of service a child needs.

The company plans to open its school in September and take students referred from area school divisions. But earlier this month, Carolyn Kay Feely, Pulaski County's interim director of special education programs, said she was waiting to meet the private school's principal and teachers before making such decisions.

Nicholas attends Dublin Elementary School. His individualized education program has a summer session that was due to resume last week after monthlong break.

Crouch-Hullender said she hoped the return to a school routine would be good for her son, who had been having more meltdowns than usual.

On a bright afternoon, as Nicholas sat on a bench on the front porch of his home, looking away, Crouch-Hullender gazed at him and repeated the question she often asks herself.

"The mystery of Nick. What's he wondering? If I could just see inside."