As ratio of children diagnosed with autism climbs, one Spartanburg agency hopes to expand services
Herald-Journal - 1/27/2019
Jan. 27--Twenty-five years ago, Lisa Lane knew little about autism, and less about how it would impact her own life.
Today, the organization she co-founded and directs with Susan Sachs -- the Project HOPE Foundation -- provides a lifeline for Upstate families searching for answers in the wake of an autism spectrum disorder diagnosis. Launched as a specialized effort in 1997 as Lane and Sachs were seeking therapy for their young children, Project HOPE Foundation has grown into a multi-county clinic serving families with loved ones who have autism across a continuum of services and therapies from birth through early adulthood.
They've been on the move in recent years, adding a Spartanburg location at 200 Elford Court just a year ago to help Hub City residents better access their services. And now the group plans to unveil a new location in Landrum later this year.
Project HOPE Foundation spokeswoman Amanda Harley said the group expects to move most of its Hope Academy classrooms to one central location in Landrum. While a specific location has yet to be announced, Harley said the move will allow the foundation to consolidate its school operations and free up space in some of its existing buildings for other programs.
For Lane, it's just the latest step in a journey that began in 1996 when her then-18-month-old son Colby began exhibiting symptoms that left her searching for answers. Following her intuition, she attended an Upstate autism conference at Converse College. Just 20 minutes spent listening to the stories of other families left her convinced.
"I said, 'Oh God, he's got autism,'" Lane said. "I heard the same things again and again, and I just knew."
When her son was later formally diagnosed, Lane said she began to search for treatment and therapy options for Colby. She found little in the way of answers and nearly no local treatment options.
"It was terrifying," Lane said. "You want reassurance and guidance, and there just wasn't much to be had at the time."
A wide spectrum
At its core, individuals with autism spectrum disorder communicate and interact with others and the world around them in different ways than most people, according to the U.S. Department of Health and Human Services.
It's labeled a "spectrum" disorder because it leads to a range of strengths and challenges, according to the agency, which effects the level of support those with autism need to meet their challenges.
"The learning, thinking and problem-solving abilities of people with (autism spectrum disorder) can range from gifted to severely challenged," according to Health and Human Services.
Since Colby's diagnosis, the ratio of children who have been diagnosed on the autism spectrum has climbed to about 1 in 59, according to the U.S. Centers for Disease Control and Prevention's most recent Autism and Developmental Disabilities Monitoring Network. According to that report, "There is great concern that the rates of autism have been increasing in recent decades without full explanation as to why," though the agency said scientists believe that both genetics and environmental factors play a role.
Amanda Ledbetter, whose son James was diagnosed with autism when he was 3, said no family's experience will be exactly the same as another.
"I reached out to someone who lives in Asheville, and they've just received a diagnosis," Ledbetter said. "I said, 'We don't know each other, but I know exactly what your yesterday was like.' You can't say that about the experience, because that differs for everyone. It's a spectrum disorder. But the feelings -- the anxiety, the terror, all the questions -- most every parent experiences that."
Lane said many times the disorder can be distilled down to social interaction challenges, combined with repetitive motions or behaviors, both of which can effect daily living. There can be other conditions that can effect cognitive functioning, according to the CDC, but some 44 percent of those diagnosed on the autism spectrum are defined as cognitively average to above average.
While CDC officials say there's no medication that can cure or treat core symptoms, Lane said research, therapy and access to services have all increased in the more than two decades since Project HOPE Foundation was launched. She said applied behavior analysis therapy, in particular, has shown to be of tremendous value to people with autism and their families.
The search for effective and accessible ABA therapy, as it is called, was one of the reasons Sachs and Lane launched Project HOPE Foundation in the first place. When their own children were newly diagnosed, Lane said specialists from other states had to be consulted on ABA techniques and program development. It's now among the range of treatments offered by Project HOPE.
You might think of ABA as a tailored solution to meet specific challenge people with autism deal with. According to the advocacy group Autism Speaks, ABA therapy focuses on identifying behavioral goals and using positive reinforcement to promote a particular behavior.
"When a behavior is followed by something that is valued (a reward), a person is more likely to repeat that behavior," according to the group's website. "Over time, this encourages positive behavior change."
The goal is to use whatever tools and strategies necessary to broaden communication ability and teach life skills. Technology has improved to the point where standard tablets like iPads can be used to communicate with the outside world, for instance.
Ledbetter said she believes the ABA therapy offered by Lane's organization has changed the trajectory of her son's life.
"I had a nonverbal 2.5-year-old and now, after several years of effort, I have a kid who's adapted, who had the best Christmas he's ever had," Ledbetter said. "All those things that come so easily for that neurotypical kid, like saying 'thank you' for a Christmas present... We're getting there."
Speech-Language Pathologist Sara Emory, the founder and owner of McCulloh Therapeutic Solutions, said she believes ABA therapy to be an important building block for other advanced skills.
"It can really make all the difference in the world," Emory said. "It's incredible to see changes after targeted ABA work."
Challenges, opportunity remain
Lane said the Upstate has made major strides over the past two decades in helping families cope with autism spectrum disorder, but she said much work remains. The price of intensive therapies like ABA can be cost prohibitive to many families, and the state of the insurance industry -- including Medicaid -- may have led to situations where wait times for some services can stretch into years.
Emory said many businesses are beginning to adapt to families with someone with autism spectrum disorder by offering sensory-friendly services and options. Think quieter waiting rooms and lower-stress activities, she said .
"But there are still plenty of places where they're not thinking about these things and what they might be able to do to help families with (autism spectrum disorder)," Ledbetter said.
Lane said Project HOPE Foundation has plans that will help it further expand its constellation of services. She said many treatments are geared toward children with autism, but a need still exists to continue life skills training and find employment and living options for adults on the spectrum.
"Ultimately that's what every parent wants for their child, to help them grow up happy and healthy and independent," Lane said. "You can't always reach all those goals, or maybe not in quite the way you want to, but there's always hope."
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