Dec. 20, 2019 -- For the first time in 12 years, the American Academy of Pediatrics has updated its advice to the nation’s pediatricians on how best to diagnose, treat, and support their patients on the autism spectrum.
The new guidelines reinforce the importance of routinely screening 18- and 24-month-olds for the condition, which now affects one in every 59 children. Getting toddlers diagnosed with autism into intensive therapy when their brains are still forming crucial connections could reshape the rest of their lives, research suggests. And it’s crucial for pediatricians to support adolescents and young adults, according to the new report, who need help building skills that will allow them to cope with the transition to adulthood, and hopefully enter the job market.
The report’s main focus, says Paul Carbone, MD, who chairs the academy’s autism subcommittee, is: “What can we do to maximize this child’s developmental trajectory?”
A lot has changed over the last decade in scientists’ understanding of the causes of autism -- usually a combination of genetics and environment. But our knowledge of the ways to treat autism and many of the conditions that can happen along with it -- such as anxiety, seizures, and feeding, sleep, and gastrointestinal issues -- has also come a long way, says Carbone, a pediatrician and professor at the University of Utah. Addressing those related problems, research shows, could vastly improve a child’s quality of life and ability to learn.
“Physicians are hungry for this knowledge,” Carbone says. “We’re really hopeful this will translate into improvements in the already really good care that pediatricians are giving to their patients with autism [and to their families].”
Autism is considered a developmental disorder marked by difficulties with social interaction and communication, and by restricted or repeated patterns of thought and behavior. It includes a spectrum of symptoms, with some children and adults almost totally disabled and others viewing their condition as enabling them to see the world in a distinctive way.
Some See More Obstacles
The report is well-done, but its idealism doesn’t always match the reality of a busy pediatric practice, says Greg Hagan, MD, chief of pediatrics at Cambridge Health Alliance, a health care provider in Massachusetts. “There is a mismatch between the recommendations and what we can actually deliver,” says Hagan, also an assistant professor of pediatrics at Harvard Medical School.
First, he says, once he decides that a child has autism, he has no authority to formally diagnose. That has to be done by a child neurologist, psychologist, or developmental psychologist -- most of whom book appointments several months to a year out.
“That’s a real bottleneck,” he says. “That drives pediatricians crazy.”
In the entire state of Mississippi, he says, there’s only one practicing child psychologist, no neurodevelopmental psychologists, and maybe a handful of pediatric neurologists. “I can’t imagine how hard it would be to access these services there,” he says.
The second major issue, Hagan says, is that there aren’t enough trained workers to deliver the 20-or-more-hour-a-week therapy that has been proven to make a difference. The jobs are low-paid, intensive, and challenging. Many young people stay in them for only a few years and then go back to graduate school to pursue a more lucrative career, he says.
Hagan mentions a patient he saw a few years ago whose autism he could clearly identify before she turned 1. He pulled some strings and got her to see a specialist in only 2 to 3 months -- “unusually fast,” he says. But then it took another 5 months before the family could find a therapist to treat the child. “It shouldn’t have taken 8 to 9 months before she was able to access clinically indicated services. That’s lost time,” he says.
Such delays are particularly frustrating, Hagan says, because there’s a short window when the brain is most receptive to the kind of information provided by early, high-quality therapy -- a window that could be missed if families are waiting months and months for an official diagnosis and therapy. “When we do identify these kids earlier and they can get services, they have a different trajectory,” Hagan says. “If we can reinforce things more effectively earlier on -- that from a neurobiological standpoint is really the Holy Grail.”
Years of Yearning for Progress
There has been a significant push over the last dozen years to help pediatricians better understand the autism spectrum and how to help patients and their families, says Susan Hyman, MD, the report’s lead author and a developmental and behavioral pediatrician at the University of Rochester and Golisano Children’s Hospital in New York.
“This report reflects the changes in recommended practice that are based in the evidence that has accrued in the scientific literature since the publication of the last reports in 2007,” she says.
Although screening every toddler will likely lead to overdiagnosis, with some children eventually not meeting the formal criteria for autism, Hyman says that wouldn’t be a bad thing.
“Almost all children who screen positive have symptoms worthy of further evaluation and intervention even if they do not get diagnosed with autism,” she says.
The report doesn’t include a lot of new information, but it provides important reinforcement about how best to care for children on the autism spectrum, says Stephanie Lee, PsyD,
a licensed psychologist and interim senior director of the Autism Center at the Child Mind Institute in New York City.
“The more that this can get out there to pediatricians who are really on the front line, the better,” she says.
Parenting a child with autism can feel like playing a game of whack-a-mole: Successfully address one problem, like gastrointestinal issues, and another one, like insomnia or anxiety, crops up, she says. Lee says she’s pleased the report from the American Academy of Pediatrics emphasizes that treating each of these issues individually can make a profound difference in the child’s experience of autism.
“This report really emphasizes the importance of pediatricians partnering with parents and caregivers to ensure that each child’s plan for treatment is individualized and targets specific skill development that will lead to long-lasting change for the family,” she says.