As autism diagnoses increase, therapy and treatment services strive to keep upDecember 5, 2014
COLUMBIA, MO — Most kids have tantrums, but not like this one.
It was December 2012, and 18-month-old Keller Garcille had been told "no," that he couldn't have something – a snack, a toy, a certain place to sit — at his daycare. What followed was an epic meltdown. Limbs flailing, face red from screaming and streaming with tears, Keller was inconsolable.
That evening, his mother, Erika Garcille, noticed Keller wasn't using his left arm. When she took him to the emergency room, she learned he'd broken his own elbow during the tantrum.
At the follow-up appointment, she asked the doctor if a fit that extreme was considered normal.
But Keller was still too young for a reliable diagnosis, so the Garcilles waited and watched. More than a year later, they got the news — Keller has autism.
Initially, Erika and Trevor Garcille felt relieved; they had an answer. That relief quickly gave way to feelings of being overwhelmed, as the couple began to realize that the vision they had for their child's future — a mainstream school enrollment, early participation in organized sports and activities — might be further away than they thought.
But then they realized Keller's autism didn't mean he couldn't enroll at a mainstream school or that he couldn't play organized sports. It just meant he'd have to take different steps to get there than the average child.
His father, Trevor, remembers thinking: "Why are we putting limitations on something just because it hasn't happened before?"
Keller, now 3, is just one of an increasing number of children diagnosed with the disorder, which affects the development of social and communication skills. An estimated one in 68 people are diagnosed with some form of it.
In March, the Centers for Disease Control and Prevention released new estimates of the prevalence of autism spectrum disorder. Taken from data collected in 2010 by the CDC's Autism and Developmental Disabilities Monitoring Network, the new estimates show an increase in children diagnosed with autism spectrum disorder: up 23 percent compared with 2006 estimates and 78 percent compared with 2002.
Stephen Kanne, an autism researcher and the executive director of the MU Thompson Center for Autism and Neurodevelopmental Disorders, said the increase doesn't necessarily reflect an increase in the number of people with autism, but rather an increase in people who are being recognized as having autism and diagnosed at an early age.
Health professionals say there are two primary reasons for the increase: widening of the parameters for classifying mental disorders to include a greater range of symptoms and greater public awareness of autism through programs such as Autism Speaks, which has resulted in many people being diagnosed earlier in life.
And that's a good thing — the earlier intervention begins, the better the prognosis. But not all schools, hospitals or therapists were ready for the higher numbers of children diagnosed with the disorder.
A litany of appointments
Keller's diagnosis changed the Garcille family's life. Now they spend their time in waiting rooms and doctors' offices, researching autism developments and watching Keller for anything that may hint at a meltdown in the making.
"Appointments. Lots of appointments," Trevor Garcille said.
Because there are few autism specialists in Rolla, Missouri, where the Garcilles live, the family has made the Thompson Center in Columbia their primary source of care.
Every few months, the couple makes the two-hour drive with Keller for his appointments. Fortunately, the Garcille's insurance is accepted by the MU Health Care System.
"We go to Columbia because the Thompson Center is one of the best in the country. A two-hour drive is nothing when it gives him the best chance for growth," Erika Garcille said.
Since his diagnosis in April, Keller has had five assessments. That doesn't include all of the doctors' appointments and consultations for other factors, such as the influence of diet on his symptoms. In a time span of only six months, Keller has been to see one sort of doctor or another at least 14 times.
The Garcilles aren't the only ones stressed by the number of appointments they have. People and organizations that provide treatment, such as the Thompson Center, are also feeling the strain. Wait times for new patients are getting longer as the center manages an increase in the number of referrals it receives, as well as an increase in requests for evaluations.
The Thompson Center uses a clinic-based model of therapy, meaning the child with autism receives therapy treatment on site. Individualized instruction for parents is also encouraged and provided to create consistency for the child.
The center is on the hunt for more therapists and "implementers," trained professionals who receive a specific treatment plan from an Applied Behavior Analysis or ABA therapist and then treat the child with autism in the child's home based on individual needs. Qualified applicants have been hard to find, Kanne said.
SungWoo Kahng, a specialist in ABA therapy, said there are no academic training programs dedicated to ABA in mid-Missouri, but Thompson and MU's Department of Psychology in the School of Health Professions are working to develop a program.
Meanwhile, the Garcille family is in the land of therapy limbo as they wait to be assigned an implementer. Keller used to receive one hour of occupational therapy a week at daycare, but he has aged out of that program. Now the family is awaiting approval from their insurance company for a new therapy plan. Although Keller's doctor recommends he receive 10 to 12 hours of specialized ABA therapy a week, the Garcille family is only able to afford six hours.
But six hours is better than none.
If the insurance company approves the therapy plan, Keller's weekly therapy will be split into three two-hour sessions, each of which will include exercises in ABA therapy.
Schools struggle to keep up
As far as Keller's schooling goes, the Garcilles are unsure of what they are going to do. Their primary goal is to ease him into a mainstream classroom, but they won't know whether that will be possible until they get closer to that time — after he has received more therapy to help curb his symptoms.
"The one thing we've learned about autism is you can plan all you want, but sometimes it has its own agenda," Erika Garcille said.
In 2000, with seven years of experience, Cristy Segress was hired to fill the position of the autism teacher in Waynesville, Missouri, for the only autism-focused special education program in the school district. Segress estimates there were roughly 4,500 students in the district. At that time, the veteran special education teacher had six students. The next year she had more than 10.
Within four years, she had too many students for a single classroom and had to split her class in half, one of which would be taught by another instructor. By the following year, both of those classes were full, and the splitting continued.
By the time Segress left Waynesville for Smithton Middle School in Columbia in 2012, the Waynesville district had five autism-focused special education programs at the elementary level, one at the middle school level and one at the high school level. Segress estimates the district had as many as 6,000 students by then.
Segress said her previous district had to keep adding programs to meet the student demand.
The Columbia Public Schools District has had districtwide programs in place for several years providing autism-focused special education. Segress has five students and two aides in her autism-focused classroom all day, with an additional aide who floats between Segress' class and the other special education class.
Segress' middle-school class focuses on "functional academics," like how money works and developing communication and social skills. The class watches videos and practices the observed lesson in the classroom. Then they take a field trip to practice the skills in a real-life setting.
One such field trip was a trip to the supermarket. The students watched a video on how to make a list, thought critically on what they would need to put on a list and wrote one. The final stage of the lesson was to take their lists and go buy only the things on their list and use money correctly.
Learning a new routine
Before Keller can begin learning about money and shopping lists, though, he's learning how to deal with unexpected changes in his routine, which can be difficult for a child with autism.
Because Keller is the youngest of Trevor and Erika Garcille's three children, he sometimes has to adapt to changes in siblings' schedules. His sisters, Skylar, 14, and Parker, 5, both play sports, which means lots of games and practices, on top of having their own social lives and schoolwork.
So that means that Keller, for example, gets to have popcorn and candy at Skylar's Tuesday volleyball game. But to him that means he gets to have popcorn and candy at Skylar's Wednesday volleyball game. If the Wednesday volleyball game is canceled, Keller has to cope with the lack of the expected popcorn and candy.
His parents try to explain it to him as best they can, but often Keller responds by kicking, screaming, crying and even biting the back of his own hand. His fits sometimes only last a few minutes, but they leave him in a highly volatile state, vulnerable to another meltdown. Once he's comfortable at home, though, in his own space, he feels back in control and calms down.
While Keller is learning to accept changes, the rest of the family is learning to embrace unexpected interruptions and changes as well. Aside from medical appointments demanding more of the family's time, Keller himself requires more attention than the average child. He's bright. He can complete a puzzle of the United States on the family's iPad in under 2 minutes.
But he can't communicate his knowledge, as is common among children with autism. Many times, whomever Keller is speaking to has two or three chances to understand what he is trying to say before a meltdown occurs.
"His attitude dictates a lot of our schedule right now," his mother said.
There are days when Keller cannot sit at a volleyball game after having behaved all day at daycare. Noise canceling headphones and an iPad give him his own escape, but sometimes even that is not enough and he just needs to be somewhere else.
If Keller is having a bad day, the family will often leave where they are or stay home altogether, rather than exposing Keller to busy environments.
With regular ABA therapy and continuing support from his family, his parents and doctors believe Keller could become a fully functioning member of society — play sports, an instrument or even be class president. The Garcille family doesn't see Keller's autism as a determining factor but rather a challenge to overcome.
"He's not sick. He's not broken. He doesn't need to be fixed," his parents say. "He just needs to be understood."