Lost in the Maze

Pam and Dan Pruett always knew something was amiss. They knew, intuitively, that their son, Willie, was struggling. As an infant, their firstborn child wasn’t hitting typical developmental markers. He wasn’t consistently babbling at six months. He wasn’t responding to his name. For a time, the Pruetts thought Willie might be hearing impaired.

It wasn’t until Willie was about 18 months old, though, that his parents really began to worry: Their son wasn’t talking. He wasn’t saying “up” when he wanted to be carried or “milk” when he was thirsty, like other kids his age. Like any concerned parents, the Pruetts took their blond-haired, blue-eyed son to the pediatrician, who told them children develop at different rates and Willie was probably fine. He would start talking when he was ready.

Six months after that appointment, though, words were still eluding the two-year-old boy. Pam started digging and discovered Child Find, a Colorado Department of Education (CDE) program that evaluates children in a variety of areas—cognitive and physical functioning; hearing and vision; speech, social, and emotional development—and determines whether a kid should receive early intervention or preschool special education services. Child Find is the CDE’s way of identifying children that could benefit from help before they begin kindergarten in the public schools. The Child Find evaluation led to speech and occupational therapy for Willie. And slowly, it began to work: Willie started to talk. He was still behind his peers, but the Pruetts thought maybe their toddler had experienced a breakthrough. They were delighted—and relieved.

That was 15 years ago. Today, sitting in their Longmont home, Pam, 49, and Dan, 53, describe Willie’s early years with a pang of nostalgia. It’s a wistfulness altogether different from other parents, who yearn for a time when their children were tiny, adorable babies. The Pruetts remember those years fondly because, knowing what they know now, that period of their lives seems best described as blissfully ignorant. Says Dan: “We were not thinking anything about autism at that time.”

People don’t tend to dwell on thoughts about autism—until they’re forced to. And an increasing number of Americans are having to do just that: Recent studies suggest one in 88 American children is now being diagnosed with autism. Although the increasing prevalence of autism spectrum disorder (ASD) among Americans—a 78 percent gain in the past decade—has made headlines over the past several years, the disorder remains a mystery in many ways. Autism is both tricky to describe and difficult to understand because the origins of it are unexplained, and because its manifestations are so different from person to person. It’s also tough to sort out why autism rates are rising: Experts cannot agree if the increase is from a true upsurge in incidences, better diagnostic practices, or changes to what is considered to be ASD by the medical establishment. In general, though, autism is a developmental disorder that usually emerges before age three and affects a person’s ability to communicate with others. It’s a spectrum disorder because symptoms can range from mild to extremely severe. The disorder is four to five times more common among boys than girls.

In Colorado, a 2012 study by the Centers for Disease Control and Prevention found the state’s rates to be slightly higher than national numbers: One in 85 Colorado eight-year-olds are diagnosed with ASD. That means out of every five Colorado elementary school classrooms, there is at least one child who is on the spectrum.

With at least 11,000 (and as many as 25,000) Colorado children and their families suffering from what can be at best a manageable condition and at worst a severely incapacitating disability, one might expect that a helpful infrastructure has been built to serve their needs; however, that is not the case in Denver and Colorado. In places like northern New Jersey, New York City, Boston, Los Angeles, Chicago, and Philadelphia, critical services are comparatively easy to access, school districts have adapted their programming, insurance reform has taken place, and qualified doctors, teachers, and therapists are more prevalent. “There are many reasons why other places are doing a better job with autism than Colorado,” says Kim Tenure, former program and policy director for the Autism Society of Colorado, “but a lot of it has to do with tax structures, population, and state laws.”

Although former Governor Bill Ritter created the Colorado Autism Commission in 2008 to begin to address the myriad issues related to the increasing population of people with autism in the state, six years later, many of the objectives are still just that. There remains a huge waiting list for Department of Health Care Policy and Financing autism waivers, which allow access to Medicaid for kids with autism. Colorado’s health-care laws still do not force insurance companies to cover adequate levels of individualized services. And although the number of service providers has increased over recent years, there’s still a lack of evidence-based therapy being administered. With all of that in mind, Tenure characterizes the task of obtaining autism services in the Centennial State as “an uphill battle.” And that battle begins the moment a parent begins to wonder: Could something be wrong with my child?

Dan Pruett leans back in his rocking chair and looks at the ceiling. He’s trying to remember the details of their journey with Willie through countless tangled systems—health care, private insurance, Medicaid, the local schools, the Department of Human Services. Each time he remembers something, he looks at Pam to make sure his memory has not failed him. “The whole process,” he says, “is really just fumbling in the dark.”

That poorly lit path begins with the diagnosis. As with many other health issues, an early diagnosis is critical with autism—primarily because the sooner a child receives treatment, the better the long-term outcome is. The problem is parents often don’t recognize the initial signs of autism, and, even if they do, many pediatricians are quick to say all kids don’t follow a typical developmental timeline. In short: Doctors frequently tell parents to give it time. Further complicating matters is the fact that even though pediatricians are allowed to do so, most will not diagnose autism. Instead, pediatricians uncomfortable making the diagnosis will refer patients to doctors who specialize in developmental and behavioral pediatrics. Along the Front Range—and in the state of Colorado as a whole—there are only a handful of developmental and behavioral pediatrics practices, a supply issue that Cordelia Robinson Rosenberg of JFK Partners, a University of Colorado School of Medicine program focusing on developmental disabilities, attributes in part to poor reimbursement rates in the state. The number of potential practices a patient can choose can be whittled down even further depending on a patient’s insurance, which is critical because an evaluation for autism can cost as much as $3,900. The result is that it can often take a minimum of two to three months to get an appointment for an assessment using the Autism Diagnostic Observation Schedule.

The Pruetts didn’t begin to suspect autism until Willie was four. “I could tell his preschool teacher thought there was something going on,” Dan says, “but I think she was hesitant to say anything. I finally just asked if she thought he was autistic.” Willie’s preschool teacher said she thought Dan might be on the right track. The Pruetts immediately set out to get their son tested medically—he was diagnosed at age five—but since many educators have been ingrained with the idea that it’s not their place to suggest a parent take a child to see a physician (even though teachers often have a good radar for disabilities like autism), it’s possible that Willie could have gone years without a medical diagnosis.

Unfortunately, a medical diagnosis can be crucial for kids with autism to not only get private services paid for by insurance, but also to secure services in public school systems. Each child who needs special education and related services must have an Individualized Education Program (IEP). This legal document helps teachers, parents, and administrators work together to provide customized education for a child with a disability. Even armed with an IEP, parents of children with autism often find the public school system both difficult to navigate and underprepared to help their kids.

Every family experiencing autism has a story about the public schools, but the most oft-repeated anecdotes focus on inconsistency in responsiveness, unaddressed safety concerns, high student-to-teacher ratios, and too little applied behavioral analysis (ABA) therapy, a treatment some experts believe is critical for individuals with autism. Willie had a great experience at his local elementary school, but the middle school was not a good fit. “We ran into staff at the middle school who were not helpful, were not open to our suggestions, and literally told us to go away,” Dan says. “But then they would call us during the day to come get Willie because they couldn’t deal with him. We’re both at work, and we’d get a call. I’d show up and he’d be in a room alone guarded by a uniformed officer.” A few months into Willie’s seventh-grade year, the Pruetts pulled him out of school. “He was miserable,” Dan says. “I remember one day he came home from school and crawled into our recycling bin and said, ‘Maybe the trash people will just come pick me up.’ He was so beaten up mentally he thought of himself as garbage. It was heartbreaking.”

The Pruetts considered home schooling Willie. But before they settled on that route, Pam called the Association for Community Living (ACL)—a Boulder County organization that provides resources and advocacy for people with intellectual and developmental disabilities—to see if there were other options. In discussions moderated by an ACL advocate, the Pruetts and their school district were able to come to an agreement that offered Willie an opportunity his parents say changed all of their lives.

The tall wooden fence makes it difficult to see how many kids are on the playground, but one little boy is plainly visible atop the slide. At first it looks like he’s chatting with a playmate, but a closer examination reveals that no other children have ventured onto the platform. He is alone and talking to himself in a low voice. His teachers at Firefly Autism, an unassuming southeast Denver oasis for children with autism that sits just beyond the jungle gym, would likely say the boy was “scripting,” a coping mechanism for a mind overwhelmed by the sights, smells, sounds, tastes, and touches of everyday life.

“There’s nothing wrong with these kids—they’re perfect the way they are, they’re exactly as they’re supposed to be,” says Jason Romero, executive director of Firefly Autism. “But the path to being functional in a world that doesn’t suit the way a person is programmed becomes difficult. There’s a different way of socializing, communicating, and just being for individuals with autism, and the rest of the world isn’t educated in it. We’re here to help these kids with that gap.”

Firefly is an 11-year-old nonprofit that is one of the few autism-specific treatment centers along the Front Range. Although the center serves only about 160 children with autism each year—around 125 in outreach programs, the other 35 in day-school treatment programs at the center—the nonprofit is one of the larger providers of treatment for the disorder in the state. Many families access Firefly’s outreach services—in-home therapy, social skills groups—using health insurance, especially since 2010, when Colorado implemented a law known as Health Insurance Mandated Autism Treatment (HIMAT). It stipulates that in Colorado, private group insurance providers must cover a range of autism treatments. Other families, mostly with kids who have very challenging behaviors, end up at Firefly’s in-center programs the way the Pruetts did.

When the St. Vrain Valley school district agreed with Dan and Pam Pruett that it could not meet Willie’s educational needs, the district was, by law, required to pay for the seventh-grader to go to a school that could. The district was also responsible for the transportation Willie would need to reach his new school, which explains why on any given weekday there are vans and buses sporting the names of approximately 10 different Colorado school districts outside Firefly.

In a second-floor classroom, seated in front of a computer, Willie—who is now a six-foot-tall 17-year-old with brown hair and a tendency for close-talking—is explaining something to his teacher, a 20-something male instructor who spends much of the day working one-on-one with the Longmont teenager. For all of its students, Firefly offers speech and occupational therapy as well as ABA therapy, which harnesses the data-driven study of behavior and how it is affected by an environment to bring about changes in personal conduct.

Each teacher at Firefly has a tablet loaded with ABA software, which allows real-time charting of a student’s behaviors, skills, and reactions to his or her environment. Over time, that data can illustrate to a teacher how to best assist her student. In Willie’s case, his teacher will first figure out, using data he’s collected over time, why Willie feels like he needs to get closer to someone when he’s speaking. For example, maybe he thinks they won’t pay attention to him otherwise. Then the teacher will find a more acceptable way of meeting that same need. Instead of getting closer, the instructor encourages Willie to ask if a person wants to hear about a certain subject to make sure he has that person’s attention. It’s a small correction that, done over weeks, months, and even years, teaches the 17-year-old to change his behavior by satisfying his need for an attentive listener in a more socially acceptable way. ABA therapy is also being applied to Willie’s other struggles, such as bed wetting, motor tics, escaping the house to run naked through the neighborhood, verbal aggression, and scripting. “Willie still has challenges,” Pam says, “but Firefly has been a godsend. Firefly can handle Willie; they don’t call us to come get him; they communicate well with us about him; they’re teaching him life skills; and they like him.”

While Firefly has brought relief and hopefulness to the Pruetts, they are some of the fortunate few who have made their way to the center of the maze. For many families in Colorado with kids with significant disabilities—those who live in rural areas, those without group health insurance, or those who simply do not have the means, time, or English language skills it takes to advocate for their children—a sanctuary like Firefly (or any of the other local autism-specific treatment centers, such as Joshua School, Temple Grandin School, and Humanex Academy) can be out of reach. Even for those who find services through their local school districts or treatment centers, the average annual cost for services and treatment for an American family with a child with autism is about $60,000.

And then there’s this: Willie won’t be a “child with autism” for much longer. On his 18th birthday, he will become ineligible for the Children’s Extensive Support Medicaid Waiver that has been paying for his at-home therapy. At 19, Willie will lose the coverage HIMAT requires his private insurance to provide. Even scarier, at least for the Pruetts, Firefly only works with kids up to 21 years old, which means Willie will soon need to find another way to get—and pay for—treatment. The Pruetts will also need to determine how Willie will spend his days. “The countdown has begun,” Pam says. “We’ll have to seek guardianship over Willie soon, and we’ll have to figure out if he can be employed. We’ll also have to decide if one of us will need to quit our job to be with him every day.”

No one likes the word “epidemic,” but it’s difficult to use any other word for the increase in autism. “This childhood epidemic is going to be an adult one real fast,” Tenure says. “We need to not only increase awareness about autism but start accepting it. Part of that is making services more available for those with the disorder, and part of that is becoming tolerant of neurodiversity. We’re not all the same, and that’s OK.”