Date published: April 15, 2019
A survey of more than 5,000 children with autism reveals that almost all get some type of non-drug treatment. Type and frequency of treatment varies by age and location.
Access to autism treatment can vary widely from state to state. That has made it difficult to know how much and what types of treatment children with autism receive across the country.
This new survey aims to fill that gap.
The study, led by researchers at Roche, a Swiss health care company, is the first publication to emerge from SPARK’s research matching service, which helps connect SPARK participants with relevant online and in-person autism studies across the country. SPARK’s large size — 163,586 people have enrolled to date — means scientists have relatively easy access to many potential study participants.
In this case, researchers wanted to get a better sense of how autism treatments are used in people of different ages who live in different parts of the country and have different types of health insurance. Previous studies were limited to specific groups. For example, they focused on people who received care from a specific network or had specific types of insurance.
Researchers asked caregivers, mostly mothers of children with autism, what types of non-drug treatments their children received over the preceding year. The results revealed that almost all participants, 96 percent, receive non-drug treatments for the condition. The most common is speech and language therapy (71 percent), followed by occupational therapy (60 percent) and behavioral therapy (56 percent) such as applied behavior therapy (ABA). The research was published in the journal Autism Research in January 2019.
The amount and type of treatment children received varied with both age and location. Children in preschool got the most therapy overall. But psychological treatments, such as counseling and cognitive behavioral therapy, were more common for children 10 and older. Children living in big cities were more likely to get treatment than those living in small towns or rural areas.
Prior research suggests that intense early intervention — at least 25 hours a week1— is most helpful in improving social communication, language and behavior issues. But the survey revealed that even the age group that received the most therapy — children ages 3 to 4 — received less than this: on average about 20 hours per week.
Almost half of families reported facing barriers to accessing treatment, such as long waiting lists or lack of insurance coverage. A family’s type of insurance — private versus Medicaid — did not seem to influence the types of treatments they received.
Researchers caution that it’s difficult to know how accurately the results represent the broader autism population. Participants in the study were diagnosed around the same ages as those in the general population and had the same gender ratio — about 80 percent male. But the study group was significantly more white — nearly 70 percent versus approximately 50 percent in the general population.
Families who participate in SPARK may also be a bit different than the general autism population. Because they are enrolled in a research study, they may be more engaged in general. And perhaps they’re more likely to seek treatment.
- Maglione MA et al. Pediatrics 130, 169-178 (2012) PubMed
About SPARK’s Research Matching Program
This SPARK program matches families with research studies they may want to join. These studies have been evaluated for scientific merit and approved by a scientific committee at SPARK. The program is free to researchers and families. SPARK does not endorse or conduct the studies. Families choose if they want to participate in a particular study.