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.