At 2 years old, Crossland Pettit wasn’t exchanging smiles or communicating with her family.
Often she sat in her room and flapped objects back and forth.
“She was very much to herself,” said her mother, Conway Pettit, 42.
Diagnosed with autism spectrum disorder, her family embarked on a lifelong journey to help Crossland connect with others, creating an intensive lifestyle of 25 to 50 hours a week with therapists to focus on speech, motor skills, social situations and other unique behaviors.
“You have to encourage them to come out on their own,” said Crossland’s father, Robert Pettit, 46.
Helping children with autism spectrum disorder “come out” can require a lot time, money and attention from their families. And the growing number of children who receive diagnoses is straining community services.
One in 68 children in the United States has autism, according to a report issued this year by the Centers for Disease Control. The new estimate reflects about a 30-percent increase over the federal agency’s last report in 2012.
According to an analysis of 2011 and ’12 Census data by The Emerge Center, one of Baton Rouge’s leading autism service providers, 620 children in the Greater Baton Rouge area are diagnosed each year.
Two Baton Rouge-based nonprofits are searching for ways to help.
“This is an extraordinarily important subject,” said John Spain, executive vice president of the Baton Rouge Area Foundation. “You look at the data, and it indicates that autism is going to continually increase. … That means we need to start planning as a community to provide for these services.”
BRAF, a community foundation which begins and manages civic leadership projects, and the Huey and Angelina Wilson Foundation are studying what they call “gaps” in autism services in the Capital region and creating a plan to increase the community’s resources focusing on the disorder.
Over the last 10 months, their researchers have interviewed nearly 300 Baton Rouge-area families and about 30 organizations that provide services to children on the autism spectrum.
“We found multiple occasions where people had mortgaged their homes three and four times in order to pay for therapy,” Spain said. “We find people get lost in trying to find help.”
Defining the disorder
Autism is a neurological disorder that affects the normal development of the brain, according to the Autism Society of America.
Children on the autism behavior spectrum face different difficulties. They can have problems communicating or understanding social norms. Many autistic children repeat behaviors — flapping their hands, rocking back and forth or saying words over and over — or may experience the senses differently. Noises may seem louder to them, or certain fabrics could irritate their skin.
It affects more boys than girls, according to the CDC, and almost half — 46 percent — have average or above-average intelligence.
“People want to hear their children say ‘Momma.’ They want to know if their child is sick,” said Melissa Juneau, executive director of The Emerge Center. “They want to have some form of communication with their children. They are devastated when that doesn’t happen.”
Treatment starts early
The key to successful treatment of an autistic child is early intervention, Juneau said. Children diagnosed by age 2 or 3 can begin therapies that help them learn to adapt to family life and, eventually, integrate into mainstream classrooms in elementary school.
Much other therapy comes through adaptive behavioral analysis, which focuses on reinforcing positive behaviors to teach the skills that children, teens or adults with autism need.
For Crossland, ABA therapy involved little things like taking bites of food, her parents said.
“All children are different,” said Conway Pettit. “It’s never good to have a therapy that is just cookie cutter and you put it across everybody. This was individualized.”
As autism awareness has risen in the last decade, treatment options in Baton Rouge have increased. Speech and occupational therapy clinics expanded their services to include autism plans. The Emerge Center, formerly known as the Baton Rouge Speech and Hearing Foundation, piloted an autism-focused program 2004.
Today, the center sees 150 children through its therapeutic pre-school programs and 40 children in other autism-specific programs. While many of the children have been diagnosed as being on the autism spectrum, many have other communication difficulties, Juneau said. They have a waiting list that averages 40 to 50 names for applied behavior analysis and 70 names for other autism programs.
Needs for families
While the number of private and non-profit autism-related services has increased over the past decade, the community must keep up with the growing number of diagnoses, Spain said. This year, The Emerge Center opened its new $8 million, 26,000-square-foot building, part of its plan to serve more children with communication disorders, including those with autism.
“We fill a void, and we’re still growing in the areas we can fill,” Juneau said.
The main obstacles for families dealing with autism involve funding and education, Spain and Juneau said.
“How do you pay for these therapies?” Spain said. “In many cases, we find it is very difficult for people to manage the process of how you deal with government. How do you apply for waivers? How do you get into the programs?”
Paying for full-time therapy is expensive, even though most insurance now covers many programs, including those at Emerge.
Some families cannot afford all the out-of-pocket expenses, while others reach their insurance’s coverage limit, said Pat Giamanco, the administrative assistant for the Louisiana chapter of the Autism Society and the mother of an autistic 42-year-old daughter.
“So many of our calls we get, I just hear families cry,” said Giamanco, 63.
As autistic children age, they still need daily assistance, Giamanco said. They need job training and social skills therapy to help fit into the workforce.
Many families receive help inside the home from the state-issued New Opportunities Waiver, but that program has a long waiting list. Others, like the Pettits, have directly hired people to “shadow” their children through school.
“We had the means to do it,” said Conway Pettit. “Any person, if it was your child, you would want to do the best thing for them, whatever was necessary. There are families that can’t.”
On top of funding issues, Juneau said, more therapists need to be educated in autism-related fields, and more doctors need training to diagnose the disorder.
“The emphasis has to be built on training young professionals on working with kids on the spectrum and building that workforce, clearly that is one of our challenges,” Juneau said.
By the spring, BRAF plans to unveil a plan to increase autism-related resources, Spain said. The foundation isn’t likely to start its own schools or build anything completely new. Rather, Spain said, BRAF will bring together experts who know what needs to be done.
“Our goal is to help these children live as much of a normal life as they can,” Spain said.
Through years of intensive work, Crossland Pettit is living a good life. Now 13, she has done well in school. She loves to draw, paint and sculpt and creates incredibly detailed and colorful pictures and statuettes.
“She’s a very bright girl,” said Conway Pettit, “but she understands more than she can express. She talks, she expresses her needs and wants and will answer your questions, but she’s not as verbal as some of the other children with autism.”
Although services have grown tremendously since they created their own autism therapy team, Crossland’s parents wish there were more options for a teenager with autism. They’ve had trouble finding enough therapy options, and they dream of opportunities like day camps and art classes that she can attend.
“We take every day as it comes,” Conway Pettit said, “so it makes it hard to know what you will need in the future.”