Health secretary Robert F. Kennedy Jr. announced Thursday a new effort to improve autism diagnoses, arguing that the current model is outdated, too time-intensive, and overreliant on professionals with limited availability.
“We are not satisfied simply for describing autism and managing its consequences. We are asking what drives the different forms of autism, and why developmental trajectories differ, why some children regress, and which interventions work for them,” Kennedy said during his keynote address at a conference for Children’s Health Defense, an anti-vaccine organization he previously led.
The initiative calls for organizations to submit “solutions” — tools and technologies that will not only speed up assessments but also improve autistic people’s quality of life. The program will be administered by the Advanced Research Projects Agency for Health, which funds novel health research. The announcement does not provide financial details for these grants.
“It’s exciting that ARPA-H is focusing on autism, and I think the idea of exploring ways that technology can transform aspects of diagnosis, interventions, and support is timely,” said Helen Tager-Flusberg, director of the Center for Autism Research Excellence at Boston University, in a text. “We can only hope that the review process will lead to an unbiased selection of projects!”
Autism care is facing some headwinds right now. Wait times to receive an assessment can stretch months or even years as prevalence has increased in recent decades. Health insurers have started pulling back from covering the main therapy used to treat kids after the field was rocked by allegations of fraud.
The autism community has also had to contend with Kennedy’s repeated use of dehumanizing language to describe the condition — he called autistic kids “damaged” during Thursday’s keynote — and his insistence that autism is correlated with vaccines, though there is no scientific evidence for the link. Kennedy and President Trump have also asserted, without evidence, that autism is connected with Tylenol use during pregnancy.
Many autism researchers have been wary of the federal investigations of autism launched by Kennedy, though they remain cautiously optimistic about the Autism Data Science Initiative, which awarded $50 million to 13 projects through the National Institutes of Health in June.
SPECTRA — or Systems for Phenotypic Evaluation, Clinical Trajectories, Response, and Agency — is a bet that greater understanding of interactions among genetic, environmental, microbiome, and other factors will provide advances in the field.
It will be overseen by ARPA-H Program Manager Russell Shilling, who has two kids with autism and used to sit on the Medical and Science Advisory Committee at the influential nonprofit Autism Speaks.
