April: Autism Awareness
April 22, 2025
A Mother’s Day Message
May 6, 2025
Is RFK Ignoring the Science? Autism Awareness, Part 2
By Carol S. Siege, PCC
Founder, Family Pathways Coaching, LLC
In 1988, United Artists released the Academy Award winning movie Rain Man, introducing autism to the general public and to me. Like many other movie goers, I didn’t quite understand the condition back then – what it was and how it affected people. Rain Man was my debut, and it left me curious to know more. In fact, the movie, which received both applause for its depiction of autism as well as criticism for stereotyping, left many people interested. In response, funding for autism research increased in the 1990’s significantly.
Fast forward to April 2025 and the current Secretary of Health and Human Services’ claim that by September 2025 – yes, that’s right, just five months from now – he would have the answer to what causes autism. And, he said, “we'll be able to eliminate those exposures,” assuming the science would back his claims that environmental toxins cause autism.
Along with a multitude of researchers, academics, advocates, and pundits, I have a lot of concerns, and for once in my life, a lot of skepticism.
I doubt definitive, scientifically sound answers can be determined in five months, even with more than 35 years of research in the bank. Because I also distrust RFK’s willingness and ability to consider all of the complications and nuance that surround autism, especially considering the range of traits that fall under today’s very broad “autism spectrum disorder” umbrella.
“Early infantile autism” was first described by American psychiatrist Leo Kanner in 1943. It wasn’t until the 1970s that therapies were introduced; and another decade passed before criteria for an autism diagnosis were standardized for psychiatric use. That’s when the box office success of Rain Man led to more public discussion and ultimately funding to study autism, it’s causes, and treatments.
Over the years, researchers have learned a lot about autism, including how genetics, environmental factors, and neurobiological differences – that is, a person’s brain structure -- may affect the risk of developing autism. Research has also led to a better understanding of how to treat people with autism, in particular stressing that the earlier autism is diagnosed, and the earlier children can begin targeted therapies, the better the outcomes for these children.
But because autism covers such a wide range of disabilities, how – and even whether – autism should be cured is controversial.
On the one hand, a profoundly autistic person may, as RFK clumsily explained, “never pay taxes… never hold a job… never play baseball… never write a poem… never go on a date… never use a toilet unassisted.” Families of what RFK calls “low functioning” autistic people may indeed wish for a cure for children and siblings who cannot communicate verbally or live independently, and who may have serious medical conditions like epilepsy.
On the other hand, one of my sons, who was diagnosed at age four and is considered moderately affected, was recognized in both high school and college for his distinguished work, is currently studying for a master’s degree in mechanical engineering, and is generally considered empathic, interesting, and downright funny (sometimes). He does not wish to be “cured.” He, along with two of his brothers who fall on the mild side of the spectrum, just want to be appreciated for who they are – quirks, virtues, and all.
RFK’s contention that, “the (autism) epidemic is real,” is also controversial. Leading autism researchers overwhelmingly agree that the increase in autism diagnoses is not due to an epidemic, but rather a rise in awareness, screening, and reporting, not to mention the broadened definition of autistic spectrum disorder. However, families struggling with the very real challenges of raising autistic children and caring for autistic adults, especially those who are profoundly affected, may feel like the increasing number of diagnoses constitutes an epidemic. And they are looking for answers.
They want to know if vaccines cause autism. They want to know about the onset of autistic symptoms that often occur at the same time childhood vaccines are given. And they want to understand regression, particularly in language, which is reported by about 25% of parents.
Researchers, however, agree that the connection between the onset of autistic symptoms, as well as regression, is coincidental to when vaccines are given, not causal.
Very large, credible and repeatable studies show that the rate of autism does not change regardless of whether a child has been vaccinated. The only study ever to contend that vaccines, specifically the MMR vaccine, caused autism was discredited long ago for a multitude of reasons, including the fact that only 12 cases were considered, there was no comparison to non-autistic children, and the study’s author was looking to receive a patent for a vaccine to rival the existing MMR vaccine.
Researchers have noted that environmental factors may indeed increase the risk of autism, along with genetic and biological considerations. But by calling the study of genetics “a dead end,” and assuming, “we’re going to find the answer” in environmental factors, RFK risks backward, rather than forward momentum in autism research.
As with understanding the breadth of autism itself, the study of autism must respect nuance. Coming into this discussion with assumptions, rather than scientific evidence, and seeking easy answers (it’s dirty water, dirty air, dirty food) doesn’t provide answers to families in need; it gives false hope and false direction and pulls us away from true progress and real answers.
