Rise in Autism Diagnoses Partly Tied to Data Collection MethodsJul 10, 2023 05:12PM ● By Liv Osby
When her son was diagnosed with autism nearly three decades ago, Susan Sachs found few services in Upstate South Carolina to help him.
So, she and fellow mom, Lisa Lane, launched a nonprofit aimed at filling the gap to give their sons the best chance they could.
Today, that effort – Project HOPE Foundation – has grown from one location in Greenville to eight across the Upstate, more than 300 employees, and a waiting list of about 200, Sachs says.
“We’ve grown a lot,” she said. “And it’s very much need-driven growth.”
In March, the U.S. Centers for Disease Control and Prevention reported that one in 36 children is diagnosed with autism, up from one in 44 in 2018 and one in 150 in 2000.
In addition, the CDC reported a 30 percent increase among minorities with health disparities, even as services were disrupted by Covid-19, according to the state Department of Health and Environmental Control.
Autism spectrum disorder is a broad range of conditions marked by challenges with social skills, repetitive behaviors, and speech, according to the advocacy group Autism Speaks. Genetics plays a role in most cases.
The characteristics – including limited eye contact and facial expressions, few or no words, and repetitive movements like rocking – usually appear by age 2 or 3.
The condition affects all ethnic and socioeconomic groups, but boys nearly four times as often as girls, the group reports.
However, early intervention, such as a specialized therapy known as Applied Behavior Analysis, or ABA, can improve learning, communication, and social skills, as well as underlying brain development, according to the group.
The latest prevalence statistics may sound alarming, said Dr. Karen Ratliff-Schaub, a developmental-behavioral pediatrician with Prisma Health in Greenville. But she adds that there’s no epidemic of autism so parents shouldn’t panic.
Instead, she said, the latest CDC estimates have more to do with how data is collected than an actual increase in the condition.
While there is no national autism registry, the CDC for the past 20 years has funded specific locations around the country to collect prevalence data on 4- and 8-year-olds, she said.
Different sites are included in that data collection from year to year, she added. And there are differences geographically in the rates of autism as well.
For example, she said, the rate is higher in California, partly because that state has a reputation for robust services for children with developmental disabilities and because there are a large number of medical centers that treat autistic patients, so they see more of them.
Another aspect of the data peculiar to this round of collection is that it was the first time all locations included diagnoses at schools, Ratliff-Schaub said, and educational criteria for identifying autism are different from the medical criteria used to diagnose it.
“I do wonder if some of the additional school data is why we’re seeing this increase now,” she said.
In addition, the criteria for diagnosing autism have expanded over the past two decades, leading to diagnosis in children with milder symptoms now, she said.
“Kids in the past … were given other labels or no labels,” she said. “Before CDC started collecting data, the numbers we had for prevalence were based on really bad studies,” and generally only included those most severely affected.
For instance, she said, only about a third of kids with autism have severe intellectual or language impairment today, but 20 years ago it was the reverse.
Ratliff-Schaub says growing access to services and increased insurance coverage for those services also leads to more referrals, so providers are seeing more children.
“We all see different pieces of this, and we only see our perspective on it,” she said.
Autism is a complicated condition that affects each person differently, she said. And although it’s been credibly linked to older parental age and genetics, it isn’t caused by vaccines, she said.
Researchers know a lot more about genetics now than they used to, but there are no good genetic treatments for autism yet, she said, calling it “the ultimate genetic puzzle.”
Still, those diagnosed today have better opportunities than those diagnosed 30 years ago, she said.
Sachs says that there is more awareness about autism today than there used to be, as well as more trained providers to treat the condition, so the need for services keeps increasing. But she says she believes that the prevalence of autism has increased as well.
“What we see is a continuing increase in the number of applicants we’re getting. We’re growing because the need is growing,” she said.
“Ten years ago, we were able to serve most of the children who applied,” she added. “Today we have a significant waiting list (which can be years) despite the fact that we have eight campuses.”
Project HOPE has two locations in Greenville, one each in Anderson, Greenwood, Landrum, Spartanburg, and Woodruff, and one in Pendleton, which will close when a new location is opened in Clemson in the fall, Sachs said.
“At this point, we are concentrating on expanding in the geographic areas identified because we have clinics nearing capacity,” she said. “We currently serve 300 individuals and their families.”
While most programs are for children, Sachs notes that the Woodruff campus serves adults as well, adding that clients “can come to us as long as services are needed,” although “we love to discharge kids because they don’t need us anymore.”
Project HOPE offers four core programs:
One-on-one therapy and Applied Behavior Analysis with registered behavioral technicians for 25 to 40 hours a week, which is designed to build skills to maximize independence.
An education program, which includes its own accredited school up to 12th grade in Landrum as well as partnerships with 30 other schools across the state to provide support to more children with autism.
The adult program, which focuses on communication, teamwork, life and community skills, and pre-employment and employment programs. It also features an entrepreneurial program called Printed By HOPE, where clients, who are paid at least minimum wage, print T-shirts the group sells with a goal of leading to full-time employment and greater independence.
And community engagement, which offers training and workshops to educate the general public about autism, including what to expect from someone with autism and how to include them in the community.
Established in 1997 as a 501(c)(3) “because our boys needed somewhere to practice the skills they were learning through ABA and … because families needed it,” Sachs said, Project HOPE holds events like a gala and golf tournament each year to raise money to help fund its operations and student scholarships.
Sachs says her son walked and talked early, but then over a short period of time lost all speech.
“He went from using sentences to ‘baba’ and ‘wawa,’” she recalls. “Then he quit making eye contact. When I’d call his name, he wouldn’t look at me. The phrase ‘Lost in his own world’ fit him to a T.”
He was diagnosed at age 4, she said, which today is still the average age of diagnosis – largely a result of too few diagnosticians – and that means critical time is lost for skills development.
Now at 31, he’s “doing great,” is a talented artist, is working in the T-shirt program and doing data entry.
“He proves every day that you can continue to learn new, important skills … to become a much more independent adult,” she said.
Nonetheless, like many adults with autism, he will always require some assistance because money and safety are complicated issues for him, she said. And that lifelong care costs on average more than $3 million per person, she said.
“Autism is one of those things you plan for the lifetime,” Sachs said. “About 50 percent of individuals with ABA will be mainstreamed into regular schools and jobs. The other 50 percent will require some level of lifelong care.
“Families have to plan for that.”
“We all as parents talk about our fear of what happens when we die because (our children) will outlive us,” said Stacey Ledbetter of Charleston, the mother of a young adult with autism.
“There’s a lot of focus on autism in children,” she added. “But a lot of people don’t realize that 80 percent of all autistic individuals are adults – 5½ million. It’s a real problem that doesn’t go away as they (become) adults.”
Currently, she said, students with autism can stay in a public high school and receive services through the age of 21, she said. Then there’s a “services cliff.”
“Once they leave, they’re kind of invisible, as are the families that support them,” she said. “It’s a real crisis.”
To help her daughter live more independently, Ledbetter recently developed a mobile app that includes a visual daily schedule, a shareable shopping list, community cookbook, document holder, in-app messaging, social engagement, bus schedule, bike lock combination, and more.
“She has the capability to live more independently, but will always need support,” she said.
Called NFlyte, it offers parents and caregivers a view into the day’s progress and the ability to track success on a dashboard, Ledbetter said.
“I was looking for a solution that would allow me to empower her to take control of her daily living activities … as basic as getting up on time, brushing your teeth, getting dressed, checking the weather … when to take your medication, when to show up at your job,” she said.
“Historically, most people do that through paper lists,” she added. “I wanted a mobile app for her to have – because we’re all addicted to phones these days – to keep her on track … (that) allows me remotely to make additions to her schedule and to see if she’s completed a task.”
The app can include as many reminders as needed and it can be customized with photos or steps for each task, Ledbetter said.
“You can upload an example of a completed task, for example a picture of a salad she made … so I can see she made lunch at 12:05,” she said. “We continue to worry about what they’re eating. It provides reassurance, and I feel good about that.”
Other features allow for social engagement. The community cookbook, for example, allows users to share recipes with each other and build a library of sensory-friendly recipes, she said.
Launched this spring on a free trial basis, it was initially tested by 30 families and will eventually be available through a monthly subscription, Ledbetter said.
“As parents, we get entrepreneurial in taking care of our kids, and that’s magnified with kids who have a disability,” she said. “I was trying to create a practical life skills home with features for daily living.
“This is a tool for autistic adults who want to live more independently,” she added. “And the data shows most do.”
To learn more, go to: www.projecthopesc.org.