“I thought, ‘How do we distribute this to people who might not think to look up our lab’s website?'” recalls Maenner, a former student of Durkin’s who is now a researcher with the Epidemic Intelligence Service at the U.S. Centers for Disease Control and Prevention. “People won’t necessarily know something is out there that could be really helpful,” he says.
Skuse has faced similar difficulties, and says the SCDC might be more widely used if it were proprietary. “It’s not advertised,” he says, “and it’s not tied in with the other mainstream autism screening instruments.” Skuse says he plans to investigate adding the SCDC to DisabilityMeasures.org.
So far, the site is primarily a catalog of free screening and assessment tools that already exist. “We hope that it grows into something more collaborative,” Maenner says. For example, eventually it could provide a platform to help researchers work together to translate and adapt measures for different cultures.
Most of the people in low- and middle-income countries diagnosed with autism are severely affected. That suggests that higher-functioning children are largely undiagnosed. “The problem with recognizing [autism] in the more subtle cases is that it is extremely difficult to do without some form of training,” says Skuse.
Skuse says the 3di, the structured interview he helped develop, would be a good model for diagnosing autism in low- and middle-income countries. The 3di is freely available, though users must pay for a two-day training session to learn how to administer it.
“Our view is that it’s appropriate to train people at a cost to make this assessment, but after that, their evaluations should be free,” he says.
However, some researchers say there’s still a place for proprietary measures.
“It could be that the community decides this has to be completely no-cost, and I would be fully in favor of that,” says Constantino. “But I think there are also options that are very low cost.”
For example, he says, the SRS is a low-cost screening measure that is simple to administer without any special training, and yields reliable results in epidemiological studies across cultures.
Others warn against avoiding the ADOS and ADI-R entirely. “We could not be doing the kind of high-level phenotyping and genetics research and imaging work without these instruments; we just couldn’t do it,” says Helen Tager-Flusberg, director of research on autism and developmental disorders at Boston University.
That means that broadening research beyond North America and Europe is likely to require using the ADOS and ADI-R, which are time-consuming and require extensive training. However, Tager-Flusberg says, healthcare workers could make clinical diagnoses, and scientists could pursue other types of studies, especially epidemiological ones, without these tests.
Scientists could also use the principles learned from these instruments, as well as other tools, to come up with new ones that would be useful in low- and middle-income countries.
There’s also a need for more training and awareness, adds Durkin. “Having the tools isn’t enough,” she says. “But it’s a place to start.”
Reprinted with permission from SFARI.org, an editorially independent division of The Simons Foundation.