Scientific research in the last 30 years has revealed a mosaic or possible causes or autism. Most of them are genetic (the condition is between 60 and 90 percent heredil, and some involve non -genetic risk factors that could affect the pregnancy of the duration of development.
“We have found a large part of the underlying [causes]”Says Heal Tager-Flusberg, an autism researcher and Professor Emerita at Boston University. But how these different risk factors come together as the brain develops a challenge to rebuild. No A simple disorder, “she says.” There are no simple answers. There are no so -called smoking guns. “
Even so, Robert F. Kennedy, Jr., the Secretary of Health and Human Services of the United States, talks about autism in a way that suggests that he believes there are simple and direct causes. Hello, it refers to the constant increase in the prevalence of autism (which is probably due to a better detection and diagnosis) as an indicator that we are in the midst of an “autism epidemic” driven by “environmental toxins.” He has also refused to reject the unbalanced idea that vaccines cause autism. This month, as part of Kennedy’s effort to find “the fundamental causes of autism,” the National Health Institutes and the Medicaid Service Centers announced that they create a “data platform” to study the condition. In April, NIH director Jay Bhattacharya described plans for “National Disease Registries, including a new one for autism.” The plan involved collecting “comprehensive” private health data on autism that would represent the “wide coverage” of the American population, leading autism defense organizations, civil rights groups and research scientists to warn about medical privacy conerns. (Shortly after the media about Bhatacharya’s statements were reported in April, HHS denied that he planned to create an “autism record”).
About support for scientific journalism
If you are enjoying this article, consider support our journalism awarded with Subscription. When buying a subscription, it is helping to guarantee the future of shocking stories about the discoveries and ideas that shape our world today.
In a budget audience on Wednesday, Kennedy requested the end of genetic research on autism. “I don’t think we should finance that genetic work,” he said. “What we really need to do now is to identify environmental toxins.”
In response to this science of dismissal or established, Tager-Flusberg has organized a coalition of scientists to reject. The coalition of autism scientists now has 258 members and is still growing.
American scientist He spoke with Taber-Flusberg about Kennedy’s statements this week and how the autism community is an answer.
[An edited transcript of the interview follows.]
In a budget hearing of the afternoon Congress of the day, Robert F. Kennedy, Jr., said: “Autism is an epidemic, and genes do not cause epidemics. They can contribute to vulnerability, but it needs an integer in enters into it enters into Enes in the entensed in the entensed in the entensed in the enura in the entertainment in the entertainment in the entrance. “.” “..” “” “” “” “” “” “. “” “” “” “” “” “” “”. “” “” “” “” “” “” “What was your reaction to that?
There is no reason for us to need to refer to augmented prevalence rates, which have the constant increase in the legs for many years, such as an epidemic. This is not the definition of an epidemic, so I disagree with the highlight.
Second, genetics are The main contributing factor to autism. We know that specific genes and variants consist of greater risk, only in cases where there are no clear environmental contributions. In any case, it is the other way around: it is the environmental factors that add or interact with the genetic risk of autism.
Take one of the very well regulated non -genetic factors: the age of the parents, the paternal age part. What we believe is happening is that, as parents grow old, their germ cells [which develop into eggs or sperm] They are changing, and this is leading to alterations in DNA that confer the risk of autism.
Are there other non -rotating factors that could be playing a role?
[Studies have shown] That [pregnant] Mothers who take an anti -Shisasa medication, particularly valproic acid, may have a greater risk of having a child with autism. But here, again, we have to think about this in a more complex way. [In such cases]The mother itself has a seizure disorder, and seizures disorders are a very common cooction with autism. So [the parent and the child] Well, you can have some shared genetic risk factors that interact with the effects of medications.
When RFK, Jr., said that “environmental toxins” are causing autism, do you think I was talking about vaccines?
Well, I listed very carefully to his testimony. [on Wednesday]. And will not rule out advertising effects or vaccines. And so, I think he probably still keeps him on his agenda. And you have the NIH director [Jay Bhattacharya] Saying that we must look at everything because we want to gain people’s trust. For me, that is not the way to gain people’s trust. Do not win trust by saying that we can rule out all the research we have done so far and start over.
Why did you decide to form a coalition or autism scientists?
My colleagues were worrying more and more, and we were thinking about what we could do as scientists. He reached a critical point when I saw all defense-self-advocates slurry, parents defense groups, non-profit organizations created and issued a very written and clear statement of a group of what they listen to the administration. And I felt that it was also very important that the voice of scientists was heard.
So I contacted a small group of my necklaces and said: “I think we need to issue a press release.” I configured the zoom call that afternoon, at five o’clock on a Friday. And it came out very fast. Clearly, it was necessary that the voices of scientists be heard. We have something very important to contribute because we have dedicated our careers.
What has most worried about your swirls?
I would say there are four probable things. One is to rule out all the previous science that has achieved bone and everything we do. That, I think, is very disturbing.
A second [concern] It is that, at no time in the last months of this administration, has the Secretary of Health and Human Services or, or, [since he took office on April 1]NIH director contacted Someone We know in the community of external autism sciences. They have not contacted us at all, and I think it is very disturbing.
A third thing is that the only person who was named from the beginning [by the administration to lead research into autism] It was David Geier, who is not a trained scientist. [Editor’s Note: Geier is a long-time vaccine skeptic. He is not a physician and was sanctioned in 2011 for practicing medicine without a license.]
The fourth is that now, we listen to the administration last week, the administration plans to use the Medicare and Medicaid data as the basis of the research plan to discover the “roots” or autism. These are not databases that are suites for that son of research because they capture only a subset of children diagnosed with autism. And there are serious concerns about whether the administration would be put in place and committed to the son of ethical privacy and the attempts of confidentiality that are needed to carry out this.
Many autistic people Make this approach to finding the “roots” or autism or a “cure.” How does that setback fits here?
Autism is a huge heterogeneous disorder. People who, although they need some support, can still function and bloom individually of representing one end of the spectrum. They can speak for titles, and at least for some of them, autism is part of their identity. And understandable, they are not interested in a cure, and in parentheses, it is unlikely that one can identify a potential cure.
But autism also involves the other extreme of the spectrum. A quarter to third [of people with the diagnosis] They have much more disability. They may have limited daily skills; They cannot be left alone; They have extremely limited communication skills. This is the end of [spectrum] That we now call deep autism. It is a challenge for them and their families, especially for some of those who are dedicated to a very aggressive self -harm or behavior. Yes, I think there is hope that perhaps we will not find a complete cure, but something that would have a significant qualification in its development course. I think we should be able to keep both ideas in our head at the same time because this is the reality of what autism is.
Kennedy’s approach seems to step on that fissure in the community of Autism. Is there any form of prevention of this crack of development even more?
I don’t think I have the answer to that. It is a great question in the community because people are looking at the agendas in very different ways. But I will say one thing. It has impressed me a lot, in the last two weeks, since I started this coalition, with how [autistic] People who are self-abogenous have joined the coalition. I think that the only thing that unifies us is the belief in the importance of scientific research. We may define the science’s science in different ways, but that is always true. That is something we all have.
And I think everyone, at this time, we believe that the address that is described so far by the administration is not the way we must go. We should not open the issue of vaccines again. We should be very cautious about the use of “records” and ensure that the research carried out is ethical and caresses the confidentiality of people in those databases. We all agree on that.
We also agree that, until now, we do not listen to the administration that they have a very deep understanding of autism. They have not been able to involve most of us, whether scientists or defenders or non -profit organizations. None of us have been involved in these discussions. So I think we really have a time at the time when there is an agreement, and I think that the administration thinks why it is and if they need to change their course.
]