Most parents of infants would welcome predictive testing for autism as young as six months old.
That’s despite autism services presently being unavailable for children within that age range, according to a new study published in the Journal of Neurodevelopmental Disorders.
“Key insights into the potential benefits and harms of autism prediction in infancy can be gleaned from directly engaging parents, who will be tasked with deciding whether to seek predictive biomarker testing for their children once such tools are available,” the study read.
Researchers conducted 55 interviews with two groups of parents to determine their opinions about early autism testing. One group was composed of parents with experience caring for a child with autism, and another group did not.
Ninety-seven percent of parents with experience caring for an autistic child and 68% of parents without experience said that they would be interested in biomarker-based predictive testing to learn if their infant was likely to develop autism. A smaller group, 3% of experienced parents and 28% of parents without experience, reported that they would be interested in testing only if they had concerns about the child’s development in the first place.
None of the parents with care experience and only one without experience said they would “under no circumstances” pursue predictive testing for their infant.
Today, the clinical utility of early learning tests is unclear, researchers wrote. Parents reported potential personal benefits from the information, including having time to emotionally process the news, educate themselves and consider making life changes like renovating their homes to better suit their child’s needs.
“I mean, obviously, you can’t start ABA [applied behavior analysis] at six months, but whatever it is that you can, speech, or whatever it is that you can do ahead of time, I’d want that in place,” one surveyed parent responded.
However, this additional time would likely matter less to families with less financial and time freedom, the study’s authors wrote.
While autism services for children less than 1 year old are not currently available, new interventions, including digital phenotyping and eye-tracking, are likely to accelerate the development of these services.
While autism service providers currently do not offer services for children under 1, more companies are getting involved with early diagnosis technology.
In April, behavioral health-focused virtual reality company Floreo acquired Autism Eyes, an eye-tracking diagnostic tool.
The same month, digital autism company EarliTec Diagnostics raised $21.5 million in a Series B round to fund its eye-tracking early diagnosis technology.
“In the interim, however, parents who receive predictive test results could face a wait of months to years before being able to access autism-specific services, launching a “therapeutic odyssey” that requires considerable parent advocacy to leverage a predictive diagnosis into appropriate services for their child,” the study’s authors wrote.
The authors noted two potential concerns that should be addressed before predictive autism testing is broadly implemented.
Researchers noted that the first year of a child’s life is challenging for parents’ mental health; more research is needed to determine when and how to provide information about biomarker-based testing.
Autism service providers need to be prepared for a “potential influx” of younger children who need intervention services before an autism diagnosis. It is unclear if private or public insurance plans would cover predictive testing or autism services for a child who tested positive on a predictive test.
Lack of insurance coverage for these services could worsen current sociodemographic disparities, researchers warn.
