The number of children being diagnosed with autism spectrum disorders continues to grow. But much of what is labeled “autism” really is something else, say our experts - a dilemma that makes progress in understanding more difficult.
As people line up at Daniel Crush’s vegetable stand, the 19-year-old carefully chooses a pepper for a customer.
Daniel doesn’t smile, but looks his customer in the eye with a deliberate earnestness and says, “One dime.”
The seemingly ordinary interaction is profoundly important for Daniel, who has autism. It is just one of many carefully designed activities he tackles in the Intensive Behavior Treatment Program at Cincinnati Children’s Kelly O’Leary Center for Autism Spectrum Disorders. The goal of the program is to provide Daniel with crucial skills he will need as he grows into adulthood.
The Centers for Disease Control (CDC) reports that one in 88 US children has an autism spectrum disorder. Unlike some of those diagnoses, Daniel’s was not a “somewhere on the spectrum” kind. His fell squarely into the no-question-about-it category.
"Just before his second birthday, he completely stopped talking and no longer wanted to be with his brothers and sisters,” says his mother, Susan.
Daniel - the fourth of five children - went from outgoing, talkative toddler to complete withdrawal in a matter of months. Susan initially thought the silence might have to do with recent birth of his baby sister.
"I remember saying to my husband, Steve, ‘I think Daniel is mad at me,’” she recalls.
But it wasn’t a passing bout of sibling jealousy. He continued to regress and by his third birthday, Daniel had been diagnosed with autism.
Over the years, his parents took him from one program to another: an early intervention preschool program, speech therapy, occupational therapy and more. But as Daniel got older, he became increasingly aggressive, even violent, when frustrated.
Things finally began to change in 2009 when Daniel entered Cincinnati Children’s Intensive Behavior Treatment Program.
For more than two years, behavior therapists Emily Boehmler and LaToya Lemley have worked with Daniel for five hours a day, five days a week. He has struggled to learn the social and communication skills that come naturally to most of us, but the work has paid off. Daniel now interacts with a variety of people, performs jobs around the hospital, and is getting ready to make the transition back into high school.
Agreeing on the Rules
Daniel’s journey is not unusual, says Patty Manning, MD, medical director of the Kelly O’Leary Center. When he first showed signs of autism 17 years ago, there was far less awareness of the disorder, and few guidelines for diagnosing and treating it. The therapies helping Daniel today are part of a proven treatment protocol developed over the years and followed at the O’Leary Center.
“Not all therapies have the same level of evidence base behind them,” Manning says. “And there is always something new coming along for autism — a diet, a vitamin — because when there’s no cure, there are a lot of cures.”
Manning credits Autism Speaks’ Autism Treatment Network (ATN), a nationwide collaborative of 17 medical centers including Cincinnati Children’s, for helping reinforce standard diagnostic criteria for autism.
The Kelly O’Leary Center evaluates more than 500 children a year for possible autism spectrum disorder. Roughly half of those children actually meet the diagnostic criteria, Manning says. The number of referrals coming in has grown sharply in recent years, but she is skeptical about whether that indicates a true increase in autism incidence.
“Today, if a child has a social impairment of any type, he is thought to have autism,” she says. “But you can have social impairment when you have ADHD, language issues, personality disorders, anxiety, all of those things. You have to have other things for it to be autism. “
In fact, according to the DSM-IV-TR – the diagnostic tool used by mental health professionals worldwide and supported by the ATN – a child must have three clearly defined symptoms to be diagnosed with autism: delayed and disordered communication, atypical social interaction and a restricted range of interests.
“You have to have all three, to a certain degree of severity,” Manning says.
Autism referrals are growing in part from increased public awareness and from doctors substituting autism as a diagnosis for children who have other conditions such as mental retardation or cognitive disabilities, says Manning. Another factor is the way prevalence is being tracked; schools are categorizing more children as having autism.
Donna Murray, PhD, who co-directs the O’Leary Center, says nearly half the children referred to them do not have autism. “They may have behavior or learning disorders that are concerning and need attention, but it is not autism,” she says.
DSM criteria for autism will be revised in 2013, Murray says. But one thing will not change: there will be a specific set of characteristics that define the child with autism spectrum disorder.
“If you are going to learn about a population this broad, you have to set limits to study it. Otherwise you don’t know what you’re researching,” Murray says. “When we go to national conferences, the term “autisms” is used because we don’t know if it’s one etiology or a clinical presentation that has a number of etiologies. That’s how much is still unknown.”
As a result, autism research progress has been slow, especially at the basic level. In addition to a lack of clear definitions, scientists have struggled to reproduce autistic behaviors in animal models. Several studies have begun at Cincinnati Children’s that should help in this regard (see story next page).
Getting Care to Kids
For now, Manning and Murray are focusing their research efforts on how to provide care to an ever-expanding number of kids.
“Service delivery and improving the quality of care is where we can make a difference,” says Murray. The O’Leary Center is working on ways to spread its expertise throughout the community.
“Our challenge has been to build models of care that touch the most children,” Manning says. “We are looking at revising how we do things so we don’t serve a small number of children really well, while thousands never get in our doors.”
Those efforts include a special training program for teachers and other specialists working in the Cincinnati Public Schools.
The first floor of the O’Leary Center serves as a demonstration classroom and a collaborative, intensive training program. The school district selects one teacher and two paraeducators to undertake a two-year training program. The program also provides short-term trainings to community educators and professionals.
“A lot of our most innovative work has been in spreading what we do,” Manning says. “We need to get more children access to the best evidence-based practices. We can’t keep the magic here.”