A study of more than 800 autistic preschoolers across the United States and Canada shows that six months after diagnosis, these children get, on average, less than a quarter of the therapy hours that guidelines recommend1. Only a third have started behavior-based therapy, the type for which there is the most evidence of efficacy.
The study also found that 16.3 percent of the children take at least one psychotropic medication, most of which are not approved for this age group or for children with autism.
The researchers called the results “concerning.”
“This points to the need to improve access to care for all children with autism and reduce some of the current barriers that many families face,” says Daniela Ziskind, attending physician at Children’s Hospital of Philadelphia in Pennsylvania, who led the work.
The American Academy of Child and Adolescent Psychiatry recommends that young children with autism receive evidence-based educational and behavioral interventions2. An expert panel convened by the Autism Intervention Research Network on Behavioral Health recommends that children get at least 25 hours a week of these therapies3.
But children in the new study received, on average, just 5.5 hours of therapy a week.
“That’s the surprising finding, and an important one, and it’s well documented here,” says Helen Tager-Flusberg, director of the Center for Autism Research Excellence at Boston University, who was not involved in the study. “There are children and families who could use way more support and treatment than they’re getting now.”
Ziskind and her colleagues analyzed data from 805 children, aged 3 to 6 years old, who enrolled in the Autism Treatment Network, a group of 17 medical centers in the U.S. and Canada, from December 2007 to December 2013. Clinicians used the Autism Diagnostic Observation Schedule, a gold-standard tool, to diagnose or confirm a previous diagnosis of autism for all of the children.
Six months after enrollment, only about 14 percent of the children were getting the recommended weekly minimum of 25 hours of therapy, the researchers found, and about 47 percent were getting fewer than 5 hours a week.
As for the type of therapy, 77 percent of the children were doing speech therapy, and 67 percent were doing occupational therapy. Only 33 percent had behavioral therapy, which, although controversial, has the best evidence base in support of its efficacy. The study was published 1 April in Pediatrics.
Children diagnosed with autism prior to their enrollment in the network tended to have more hours of therapy, which suggests it can take more than six months for families to access services, the researchers say.
Barriers to therapy could include a lack of insurance coverage, high cost, long wait times and overloaded health systems in a particular region, Ziskind says. The researchers did not collect data about any therapy the children may have received in school.
“We worry that children who don’t receive interventions early and enough therapy may end up having more persistent difficulties later on,” Ziskind says.
Regardless of how much therapy the children were receiving, 16 percent took psychotropic medications, the study found. The most common types were alpha agonists, used to treat hyperactivity but not yet approved for children in this age group or for children with autism.
A total of 25 children, about 4 percent, were taking antipsychotic drugs, such as risperidone or aripiprazole.
Young children can benefit from medication to treat specific traits, Ziskind says, but “as pediatricians, we never want to start young children on medication unless they truly need it.”
The findings on drug use are “alarming,” Tager-Flusberg says. She notes that these medications are not well studied in children of this age.
“That should give us all some pause when we see that very young children are being placed on some pretty potent medications,” says Carol Weitzman, director of the Connecticut Center for Developmental Pediatrics in Westport, who was not involved in the study.
In some areas, the level of medication use may reflect local health policies or the availability of non-drug therapies, Ziskind says. She and her colleagues found that children in the U.S. are more likely to be on medication than those in Canada. Within the U.S., children in the Midwest and South are more likely to be on medication than those in the Northeast and West.
The low hours of therapy and reliance on medication might go hand in hand, both Tager-Flusberg and Weitzman note.
“As I read this paper, I was thinking to myself, if kids don’t get services, guess what happens?” Weitzman says. “We write prescriptions.”