They argue that his promise seems to disregard decades of scientific research that has linked approximately 200 genes to the condition. This research also seeks to understand the differences in the brain that can be present from birth.
According to the Associated Press, David Amaral, a seasoned autism researcher from the UC Davis MIND Institute, stated, “Virtually all the evidence in the field suggests whatever the causes of autism — and there’s going to be multiple causes, it’s not going to be a single cause — they all affect how the fetal brain develops.” Amaral further explained that even though the behaviors associated with autism may not manifest until a child is 2 or 3 years old, the biological changes have already occurred.
Kennedy recently announced that the National Institutes of Health (NIH) would establish a new database to unearth the root causes of autism and other chronic diseases. This would be achieved by merging Medicaid and Medicare insurance claims with electronic medical records and other data. Kennedy has pointed to the increasing rates of autism as evidence of a "preventable disease" epidemic, caused by some form of environmental exposure. He has promised to provide "some of the answers by September."
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However, autism is not classified as a disease. It is a complex brain disorder, more accurately referred to as autism spectrum disorder, to reflect its varying impact on different individuals. The symptoms can range widely, from profound autism, which can result in nonverbal communication and significant intellectual disabilities, to milder effects such as difficulties with social and emotional skills.
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Helen Tager-Flusberg, an autism expert from Boston University, explained that the rise in autism rates is not among profound cases but milder ones. This is due to doctors gradually recognizing that milder symptoms were part of autism’s spectrum, leading to changes in diagnosis guidelines and qualifications for educational services in the late 1990s and early 2000s.
The connection between genes and autism has been established through studies of twins conducted over several decades. Some of these are rare genetic variants passed from parent to child, even if the parent shows no signs of autism. However, these are not the only type. Amaral explained that as the brain develops, rapidly dividing cells can make mistakes that lead to mutations in only one type of cell or one part of the brain.
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Noninvasive testing can identify differences in brain activity patterns in babies who won't be diagnosed with autism until much later, when symptoms become apparent, Amaral said. These changes stem from alterations in brain structure or its neural circuitry, and understanding them requires studying brain tissue that’s available only after death. Amaral is the scientific director of a brain banking collaborative called Autism BrainNet, which has collected more than 400 donated brains, about half from people with autism and the rest for comparison.
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Researchers have also identified other factors that can interact with genetic vulnerability to increase the risk of autism. These include the age of a child’s father, whether the mother had certain health problems during pregnancy including diabetes, use of certain medications during pregnancy, and preterm birth. Tager-Flusberg, who leads a new Coalition of Autism Scientists pushing back on administration misstatements about the condition, stressed that any concern that measles vaccinations could be linked to autism has been long debunked.
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Experts argue that Kennedy's planned database is not suitable to uncover autism's causes, in part because it lacks information about genetics. However, researchers have long used insurance claims and similar data to study other important questions, such as access to autism services. The NIH described the upcoming database as useful for studies focusing on access to care, treatment effectiveness, and other trends.
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The U.S., with its fragmented health care system, will never have the kind of detailed medical tracking available in countries like Denmark and Norway — places with national health systems where research shows similar rises in autism diagnoses and no environmental smoking gun.
The quest to understand autism continues, with researchers and experts committed to unraveling the complexities of this condition, despite the unrealistic promises of quick answers.
