The annual meeting of the International Autism Research Company took place in Seattle this week.
The first scientific conference on the ground was to be held in the Emerald City five years ago, until Covid-19 was destroyed these plans. This time, American autistic researchers are faced with a very different type of crisis: massive Federal funding cutThe members of the cabinet make FAKE affirmations on the complex neurological condition they study and a series of confusing and potentially disturbing Political ads on autism research.
In April, the United States Ministry of Health and Social Services revealed that it planned a “complete research effort of $ 50 million aimed at understanding the causes of (autistic spectrum disorder) and improving treatment,” said a spokesperson for the department. The effort was stimulated by the declared objective of the secretary Robert F. Kennedy Jr. to determine the cause of autism, a neurological and development condition whose symptoms regroup around challenges with communication, social interaction and sensory treatment.
During her first press conference last month, Kennedy made a number of scientifically inaccurate declarations on autism: that it is avoidable (There is no evidence that it is); that the study of its genetic foundations is a “dead end” (Genes play an important role)); that autistic children “will never hold a job” (autism presents itself in a different ways and Many autistic people work) and, perhaps the most important, that “we know that it is an environmental exhibition” (it is, to say it slightly, Far from an established fact.)
On Thursday, an HHS spokesperson said that the agency developed “a secure data repository” of “large-scale data and identified to better understand the causes of conditions such as autism and chronic diseases”, similar to that of the National Cancer Institute of the National Cancer Institute Institute Institute Monitoring, epidemiology and final results Program.
It was a clarification of the declaration of the Director of the National Institutes of Health, Dr. Jay Bhattacharya, During a meeting of April 21 With the NIH advisers that the study would partly draw information on personal health collected in a variety of sources, in particular insurance complaints, pharmacy chain medication files and fitness monitoring data, a widely reported plan as a “autism register”.
HHS otherwise offered a minimum of details on the research effort, which, according to Kennedy, would make the results in September. (Bhattacharya has since rejected this calendar, saying that the subsidies would only have to start participating researchers at the end of the summer.)
Half a dozen superior scientists interviewed for this article said that neither them nor anyone they knew had been consulted.
“I am someone who knows many people in this area,” said Helen Tager-Flusberg, professor emeritus at the University of Boston and director of his Excellence of autism researchAnd “not a single person I know has been approached”.
Tager-Flusberg is a member of the HHS Autism Autism Coordination Committee, which advises the agency and the Congress on Autism Research. Since Trump took office in January, she said, the committee has not received any communication from HHS and has not been informed or consulted of the latest research initiative.
“With one hand, (Kennedy) offering $ 50 million in new research, and with another hand, they have already removed a considerably significant number of subsidies that are already carrying out advanced research on autism,” she said. “The NIH has invested hundreds of millions of dollars in the causes (studies) of autism in the past three decades, and it is therefore disturbing to learn that everything is rejected.”
The American government is by far the largest investor in the country in autism research. In 2019 and 2020, the most recent period for which data is available, federal subsidies totaling $ 350 million supported 82.5% of research on American autismWith the rest from private sources.
“Federal funding is the engine by which the research takes place, and it is certainly the engine by which the research on autism has made the incredible progress it has in the past 25 years,” said Matthew Lerner, associate professor at AJ Drexel Autism Institute of Drexel University and member of the Board of Directors of the International Research Society.
Several researchers have also said that he had found Kennedy's insistence that autism comes from the exposure to an indefinite environmental source perplexed. The role of environmental factors in autism is already a major area of intervention for research funded by the government, they said, although more nuanced.
When scientists speak of “environmental exhibitions”, they refer to any nongenetic influence before or after birth. These can go from prenatal stress hormones to pollutants in the district to the school to which a frequent child.
“All scientists will tell you that it is such complex thing that you cannot just look at (because), that you must think about the role of the environment, the role of genetics, the way they interact and the way it changes during life,” said Alycia HalladayHead of Sciences of the Foundation of Non -Lucrative Autism Sciences. “We know that there are many environmental exhibitions that have not been studied. We cannot say that it is an environmental toxin. ”
Dr. Shafali Jeste was more dull.
“This is what we dedicate our lives,” said the pediatric neurologist from Los Angeles. “If we knew that there could be an environmental cause, would we not all be there to fall it, and perhaps having already found it, since we have been doing some research for 20 years?”
The cuts and chaos of the second Trump administration already have an effect on the research community.
Several people interviewed for this article asked not to be cited by the name for fear of reprisals, or specified that they could only speak on behalf of themselves and not of their employer, at the request of the institution.
At the end of April, Tager-Flusberg founded the Coalition of Autism Scientists, a group of senior researchers united around the common objectives to repel disinformation and defend research approaches based on evidence.
More than 200 scientific colleagues registered immediately, she said. But when the young researchers asked to join, she discouraged them from doing so. Speaking could cost them their jobs.
“I have nothing to lose,” she said. But “the last thing I would like is to put the career of anyone in danger.”
