The Trump Administration’s Monday press conference about autism received a lot of attention, but the coverage buried a promising announcement: the NIH is funding 13 autism research studies through the new Autism Data Science Initiative.
Six of the 13 studies are specifically designed to investigate the causes of autism, while another two are slated to use data to improve clinical services and treatment outcomes.
“This week has been a whirlwind for the autism community,” said Autism New Jersey Executive Director Dr. Suzanne Buchanan. “We spent a lot of time talking to journalists and concerned parents who understandably have questions about the safety of acetaminophen during pregnancy and the authorization to prescribe leucovorin to individuals with autism. However, we do want to highlight a silver lining: 13 reputable and potentially useful studies were green lit by the Trump Administration and will receive funding. Many of these studies build on research and data collection that scientists across the nation — including in New Jersey — have been working on for decades.”
Photo: David Everett, Strickler
Dr. Buchanan highlighted one study on the list as a particularly promising line of research: a Boston Children Hospital’s study entitled “Integrating Genetic and Environmental Data to Predict Autism Susceptibility and Heterogeneity in the SPARK Cohort.”
The study will create a large-scale investigation that will comprehensively evaluate the interplay between genetic risk factors and lifetime exposure to environmental factors. Using data from more than 20,000 children with autism, the study is designed to identify prenatal and early life exposures that impact probability of autism, their developmental trajectories, and their response to behavioral intervention.
SPARK, which is providing the dataset for the Boston Children’s study, has been collecting data from volunteer participants for the past decade so that scientists can compare and contrast genetics, environmental factors and more between autistic participants and their non-affected participants. Researchers for the new study hope it will help families and physicians decide what type of treatment to provide to “maximize the potential of individuals with autism.”
Details of the 13 approved studies came a day after the Trump Administration urged pregnant women to avoid acetaminophen during pregnancy. The administration also announced there will soon be FDA approval for physicians to prescribe leucovorin, a drug originally designed to help cancer patients, to some individuals with autism.
“There is a long history of interventions being suggested or claims being made that something can treat the symptoms of autism,” Dr. Buchanan said to New Jersey 101.5. Therefore, clinical experts on Autism New Jersey’s staff regularly read research studies and vet treatments before advising families and doctors to consider them.
Autism New Jersey, along with New Jersey Department of Health, and numerous professional medical organizations, including the American Academy of Pediatrics, the American College of Obstetricians and Gynecologists, and the Society of Maternal-Fetal Medicine, have explained that the largest and most rigorous scientific studies have shown that acetaminophen is safe during pregnancy, when taken as directed.
Likewise, medical leaders and Autism New Jersey advised caution to families who may be considering seeking a prescription for leucovorin, saying there have not been enough large studies to confirm its benefit to individuals with autism. The organization recently put leucovorin in the “yellow” category on their treatment tracker, which identifies treatments that “have not been studied enough (or at all) to put them in another category.”
“The news from President Trump’s press conference earlier this week has truly been mixed,” Dr. Buchanan said. “On one hand, I am glad the federal government is investing in autism research, and on the other hand, I’m concerned about the messaging around acetaminophen and leucovorin. It can be a lot of information to navigate, and if you are confused, we really encourage you to talk to your doctor and call our 800.4.AUTISM Helpline.”
Experts are ready to listen to your story and help your family navigate an autism diagnosis. Whether you need information on special education services, adult programs, treatment options, or just a listening ear, we are here to help. Call 800.4.AUTISM or find us online.