When Dominique Ciuffetelli’s second son, Pierce, was born six years ago, he was a content and happy baby. He rarely cried. He smiled, he babbled and, as he approached his first birthday, he was saying “Mama” and “Dada.”
When he was about 1, he stopped. Instead of smiling, he stared. Instead of babbling, he screamed.
It took two more years of visits with doctors and specialists, therapists and speech pathologists for Ciuffetelli to get a diagnosis for Pierce. Like one in 68 children born today in the United States – 72,000 people in South Carolina alone – Pierce has autism.
Ciuffetelli, a full-time nursing student, shared Pierce’s story in the Chrysalis Autism Center in Rock Hill, where Pierce spends 40 hours a week working one-on-one with therapists on everything from basic communication to social skills. She, like thousands of other parents across the state, just wants to give her son the best chance at leading a normal life.
“I want him to have the basic needs to get through life,” she said.
What is autism?
Autism, as defined by the state Department of Disabilities and Special Needs, is “abnormal or impaired development in social interaction and communication, as well as markedly restricted, repetitive and stereotyped patterns of behavior, interests and activities manifested prior to three years of age.”
There are no known causes for autism, nor is it known why boys are far more likely to be diagnosed than girls.
The average age of a child when diagnosed with autism is 4, said Sarah Easom, spokeswoman for the South Carolina Autism Society. While some children can begin showing signs of autism as young as 6 months, others aren’t diagnosed until they’re much older.
No two people with autism are alike, say those involved in the autism community.
“It’s one of the most difficult disorders to talk about because it is a spectrum,” Easom said.
To include recent additions to the definition of autism, experts now usually talk about the “autism spectrum” instead of just “autism,” as one might talk about another developmental disorder.
Some people “on the spectrum” are highly functioning and require little to no assistance to lead a relatively normal life. Others might be completely nonverbal and require constant help to deal with day-to-day activities.
“It kind of messes up our brain,” said Peyton Cash, a seventh-grade student with autism at Rawlinson Road Middle School in Rock Hill. “We kind of act different a little.”
People with autism spectrum disorders often have difficulty in social situations and get anxious about loud noises, bright lights or crowds, said Stacey Hunter, who teaches students with autism at Rawlinson Road.
They usually do well in structured environments where they’re not overwhelmed and where they have time to sort out their thoughts, which sometimes “get stuck,” said Cody Sweatt, a Rawlinson Road sixth-grader who is living with autism.
Sensing tone and body language while interacting with others can be a daunting task, Hunter said, and it’s often hard to pick up on social cues.
What makes it even more frustrating for parents like Ciuffetelli is that a child with autism often looks like any other child, so people might not know there’s a reason Pierce acts the way he does sometimes. When he has a meltdown at the grocery store, it’s not because he’s undisciplined or spoiled – it’s because he struggles to communicate, so he lets out frustration in the only way he can.
“We look like every other person,” Cash said. “The reason why we need patience is because it takes a while to get words out.”
Lack of funding
With around 6,500 people statewide for applying services for autism – and limited state money to pay for those services – getting help for kids like Pierce can be difficult, but conditions are improving, said Mary Poole, executive director of the York County Board of Disabilities and Special Needs.
Just a few decades ago, she said, people wouldn’t even talk about autism.
“Can we have more services, more advocacy?” Poole said. “Most definitely, but I see us moving in the right direction.”
When it comes to treating autism, most experts agree applied behavior analysis therapy, or ABA, is the most effective treatment. ABA is best applied when the child is younger than 12, preferably between the ages of 3 and 10, said Tobie Presler, founder and director of the Chrysalis Center. Earlier intervention is always better.
The problem with ABA is that it’s expensive. It requires highly qualified therapists and lots of one-on-one time with the child.
In recent years, some insurance companies have started covering ABA for children with developmental disabilities. In South Carolina, a child’s family can apply for a waiver to help pay for three years of ABA.
“We’ve been on the waiting list for years,” Ciuffetelli said. Her family is helping her pay for services at the Chrysalis Center for Pierce.
In York County, 22 children are receiving ABA through the waiver and 31 are on the waiting list, Poole said. Children who had early autism or developmental delay diagnoses and received services through the state’s BabyNet system get to jump to the front of the line.
Just two groups are able to provide ABA in York County – the Chrysalis Center and the Early Autism Project, which opened recently on India Hook Road in Rock Hill.
Despite its cost and the time it takes, Ciuffetelli said, ABA is worth it for her son.
“Whatever he says right now is awesome,” said Presler, who oversees Pierce’s therapy and that of the Chrysalis Center’s seven other clients.
A few nights ago, Pierce, who has been with the Chrysalis Center for almost two years, said “Go downstairs, please” – and Ciuffetelli couldn’t have been any prouder of her little boy.
“He couldn’t say something like that and now he can,” she said. “I’ve always had hopes of my son talking, but I never imagined it would happen so fast.”
Autism in school
For children whose waiver has expired – or who are still on the waiting list and their families can’t afford intensive intervention on their own, or whose parents don’t know what services are out there for their child – the responsibility for education and therapy falls on the public school system, where teachers do their best with limited time, space and funding.
But they are making a difference, said Theresa Schaedig, who works with 21 students with autism diagnoses in Clover schools. She helps students with skills such as greeting people and asking questions to start a conversation.
“We do all kinds of interventions related to communication,” Schaedig said. “Sometimes, we work directly in the classroom with a student.”
Typically, she does individual half-hour therapy sessions with a student two to three times a week. Each student also has an individualized education plan, which is mandated by federal law for students with disabilities.
“Once we can identify the weakness,” she said, “we can identify the therapy to match them.”
At Rawlinson Road Middle School, Hunter’s classroom is a “safe haven” for students who have autism. Curtains block some of the bright fluorescent lights from above. The desks have short dividers to provide personal space, and students can jump on a trampoline or ride an exercise bike to get rid of excess energy.
Hunter’s students – a mix of sixth-, seventh- and eighth-graders at different developmental levels – start each day together. Then they head out to classes with all the other Rawlinson students, where teachers, and even some students, know the sort of attention they need.
“They have to learn differently, and we have to listen differently,” said Kelly Shaw, who teaches seventh-grade math.
Shaw’s colleague, seventh-grade social studies teacher Bradley Wagner, said the methods he uses to help his students with autism actually help all his students.
But if a student starts to struggle too much or needs a place to decompress, he can go to Hunter’s classroom.
“I’m always here for them, to help them figure out how to cope,” she said.
In the past decade or so, schools have shifted the way they approach students with autism, said Poole, the county disabilities board director, but more could always be done at the school level.
For some students, including Ciuffetelli’s son, Pierce, and other clients at the Chrysalis Center, what’s available at the public schools simply isn’t enough, because of a lack of money and teachers trained to work with kids with autism.
In an ideal world, Ciuffetelli said, Pierce would progress enough at the Chrysalis Center so that one day, he’ll be able to go to a regular classroom.
In today’s society, autism seems to get more attention than other disabilities, Poole said, and the level of knowledge about autism is higher than it has ever been.
There’s also a shortage of services for adults living with autism, Poole said. The most recent endeavor by the disabilities board is a new partnership with West Marine of Rock Hill to develop a program to hire people with autism. Across the region, other large companies, such as Lowe’s Home Improvement and Walgreens drug stores, have similar programs in place.
The best people to fight for programs like this and for more money for services are the families of people with autism and other special needs, Poole said.
Groups like the Chrysalis Center and students such as those at Rawlinson Road Middle School have worked especially hard throughout April, which is designated Autism Awareness Month, to “light it up blue” – the color of autism awareness – and to educate others about autism.
At Rawlinson Road, Hunter’s students, all of whom are living with autism, raised more than $1,900 and made immeasurable personal strides through their efforts – appearing on the school’s morning news and selling puzzle pieces, the symbol for autism, to their fellow students at lunch.
“It was heartwarming,” said sixth-grade language arts teacher Kellie Mondo. “It really opened the eyes of my students.”
For Hunter’s students, their successful fundraiser, newfound popularity among the larger student population and excellent showing at the Area 11 Special Olympics earlier this month has left them feeling “proud” and “really good about” themselves.
And from their seats in Hunter’s classroom, her students said, the more people know about autism, the more they’ll be able to understand.
One quiet eighth-grader, Jeremiah Bell, looked up shyly when asked what he wants the world to know about him and his fellow students.
“I want people to know about autism because they can help us,” he said.
As a parent of a child with autism, Dominique Ciuffetelli hopes people everywhere remember that all children are different and that it isn’t acceptable to judge the behavior of other people’s children, because you never know if a child is living with something that makes him or her different.
“Pierce shouldn’t have to wear a T-shirt that says, ‘I’m autistic,’” she said. “People should be cognizant and aware that there are children who are not typical.”