As Collin Butler walked across the stage at the University of South Carolina’s December graduation, he carried with him the hopes of thousands of parents who dream their children with autism can follow in his footsteps.
Collin didn’t feel that weight on his shoulders. He just walked across the stage like all of the other graduates and shook a few hands. But as he made the trip, nearly 30 people in the audience broke the rules and cheered. Many more have been buoyed by his legacy.
Nearly 20 years ago, the struggle to find help for Collin led to the creation of the S.C. Early Autism Project. This year, that group founded by Collin’s mother and his former preschool teacher, Ann Eldridge, is working to get the best results for about 900 children with autism. Without early intervention, they all too often end up in school special education programs. With specialized help, however, they can go much farther – some even to college degrees.
“I just hope I can make a difference for children with autism, for parents of children with autism,” Collin said. “I’m probably one of the few people right now who have achieved such a feat.”
Looking for answers, then help
Collin was a healthy baby and hit all the typical developmental milestones through about 15 months. Then the pool of words he used mysteriously began to shrink rather than grow. He started throwing tantrums, kicking, screaming. His parents, Susan and Joe Butler, knew these weren’t the actions of a spoiled kid. They were too intense and set off by the smallest things.
Susan expressed her concerns with Collin’s pediatrician, but Collin never acted out in the doctor’s office. Susan finally convinced the pediatrician to refer them to a developmental specialist. Again, Collin was on his best behavior during that 20-minute visit and no problems were identified.
Susan kept pushing, knowing something was different about her son’s tantrums. Finally, she lined up an examination by an expert at the University of South Carolina. After spending two hours with Collin, that specialist diagnosed him with autism.
Then came the second major hurdle, finding help for that condition.
“It wasn’t like ‘Your child has autism, and here’s the prescription,’” Susan recalled. “It was ‘Your child has autism,’ and you fall off the cliff.”
Researching the subject, she found out about progress in autism treatment at UCLA directed by Dr. Ivar Lovass. Communication with his office led her to Dr. Glen Sallows, who had started a similar program, the Early Autism Project, in Wisconsin. Susan flooded Sallows with phone calls, leaving 62 messages before she got through on the 63rd for a conversation that has changed a lot of lives.
Sallows agreed to come to South Carolina for a weekend instructional session on applied behavior analysis, the systematic method that was beginning to show promise for children with autism. Sallows set up in the living room of the Butlers’ small house in Sumter and taught the basics of the system to Susan and Joe, Eldridge and a few others.
The session involved Sallows teaching Collin the proper behaviors and discouraging (or ignoring) the bad behaviors. By the end of the three-day session, Susan could see major improvements in Collin. And she and Eldridge were excited about how that sort of therapy could help the other special needs children that Eldridge had mixed in with regular students in her ground-breaking preschool.
Sallows agreed to travel to Sumter once a month to help Collin and to teach his teachers. Parents in an autism support group heard about Collin’s progress, and soon more and more wanted the therapy for their children. Sallows, however, didn’t have time for any more cases so far from his Wisconsin base.
Eldridge came to the rescue, turning her rapidly growing knowledge on the therapy into what was essentially a South Carolina branch of the Wisconsin Early Autism Project in 1998. Susan, then working full-time for a national corporation, started off volunteering in the local program. But through the next few years, she was spending more time managing the business side of the autism therapy clinic than in her paid job. At the end of 2002, she and Eldridge went out on their own with the S.C. Early Autism Project. Eldridge
Twelve years later, their organization has a flagship clinic in West Columbia as well as facilities in Charleston, Greenville, Rock Hill and Tampa, Fla. Their trained therapists handle a caseload of about 800 children through the clinics, plus another 100 they help in neighboring school districts.
While Collin was the inspiration for the Early Autism Project, he didn’t need as much help as some children with autism. One of his previous preschool teachers had warned his mother he would be stuck in special education classes in public schools, but Collin’s improvement with behavior therapy was amazingly rapid.
A one-on-one aide worked with him during his kindergarten year in a standard classroom at Kingsbury Elementary School in Sumter. In first grade, a teacher’s assistant helped with Collin and other students who needed special attention. By second grade, he needed no extra help in the classroom. Like many children in the wide spectrum of autism, he was awkward in social interaction while excelling in academic work.
Experts now recognize the autistic brain is wired differently than the normal brain. People with autism process information differently, sometimes in amazing ways. Collin is a classic example.
When Susan and Joe Butler traveled to Disney World with 2-year-old Collin, he wouldn’t get off the monorail after hearing the “Please stand clear of the doors” message in English and Spanish. He wasn’t scared of the doors; he was fascinated by the Spanish words. They rode the monorail all the way around the park.
On the same trip, Collin, already beginning to read, sat down and studied brochures that explained Disney attractions in multiple languages side-by-side. Little did his parents know, that was the start of his future in linguistics. As he grew older, he asked for foreign language dictionaries for birthday presents.
“Before they had all these products and apps that translate, Collin would get foreign language dictionaries and look up every single word,” Susan said.
In high school, first at Sumter High and then at Thomas Sumter Academy, he finished four years of German in two years, four years of Spanish in three years, four years of French in two years and four years of Italian in one year. “It just comes naturally to me,” he said of picking up new languages.
He moved seamlessly from Thomas Sumter Academy, with fewer than 500 students, to USC, with more than 30,000. He felt at home at both. “Sometimes I like to be by myself, sometimes I like to be with people,” Collin said. “I got adjusted OK over time, and I did pretty well academically.”
He lived in off-campus housing but near enough to walk to classes. USC’s non-traditional interdisciplinary studies major allowed him to set his own path toward a specialized linguistics degree. In addition to the languages he studied in high school, he focused in college on Asian languages, spending one summer session in Hong Kong.
One trait common among people with autism is an extreme focus on one subject and a desire to learn everything possible about that subject. Collin chose a broad subject. He’s fluent in 12 languages, and he still has plenty more to master.
He often carries around a notebook and a pencil, so he can pull it out and write down his thoughts in a foreign language. “His English handwriting looks like a second-grader’s, but his Chinese handwriting is perfect,” his mother marveled.
Next up is turning that incredible knowledge into a profession. He has a part-time job as a teaching assistant with English Programs for Internationals at USC, but he wonders if there might be a spot for him as a translator at the United Nations or with a government program that monitors discussions in other countries.
He recently has become intrigued about the idea of making motivational presentations. He never felt he was really different from the other kids in school. He didn’t even realize he had been the inspiration for the Early Autism Project until his mother won a regional entrepreneurship award last year and he heard her talk about the birth of the project at the awards ceremony.
Collin didn’t bother to submit the form to get recognition for graduating magna cum laude. “Of course I’m proud of it, but it wasn’t that much of deal,” Collin said. But his accomplishment brought tears to his mother’s eyes.
“To see the hard work that he put in and so many other people put in to help him get to where he is now, and to have that hard work represent hope to other families is incredible to me,” Susan said. “I can’t tell you how good I felt when I knew that I was on the right track to helping Collin.”
And she feels those emotions almost every day now watching the work done at Early Autism Project.
“To be able to give back some of that,” she said, “I’m so proud for him, but I’m so incredibly thankful that I can do that. That’s the best feeling in the world.”