The firestorm that has been stirred by Secretary Robert F. Kennedy Jr. in his comments about autism from his speech on Wednesday, regarding the new CDC report that autism rates have increased to 1 in 31 children, has been loud, divisive, and lacking the two things absolutely necessary in any discussion regarding autism.
Those two things? Nuance, and grace. Sadly, both are lacking in pretty much any public discussion these days, but both are absolutely critical when discussing autism, those who are most greatly impacted by autism, their families, and the autism community at large.
First, let’s look at what RFK actually said during his remarks, which can also be seen here. The entire press conference lasted over a half hour.
However, there are two comments that have snagged the attention of the public and caused the debate. First, RFK’s description of people with autism.
“Autism destroys families, and more importantly, it destroys our greatest resource, which is our children. These are children who should not be suffering like this,” he said. “These are kids who will never pay taxes. They’ll never hold a job. They’ll never play baseball. They’ll never write a poem. They’ll never go out on a date. Many of them will never use a toilet unassisted.”
Second, his absolute insistence that there has to be an environmental/external cause for autism, not just an expanded definition, better screening, or genetics, and referring to autism as he would a contagious disease.
Kennedy said he wanted to “move away” from the idea that “the autism prevalence increases — the relentless increases — are simply artifacts of better diagnoses, better recognition or changing diagnostic criteria.”
“This epidemic denial has become a feature in the mainstream media, and it’s based on an industry canard. And obviously there are people who don’t want us to look at environmental exposures,” Kennedy said, speaking at a press conference at the department headquarters on Wednesday in Washington, D.C.
The report Kennedy mentioned — published Tuesday by the Centers for Disease Control and Prevention — estimated that autism prevalence has increased to 1 in 31 children, which Kennedy called “shocking.”
These two quotes require two different responses, and it will require me to lay my cards out on the proverbial table. As most of our regular readers know, I am not an impartial observer when it comes to autism. Two of my children are on the autism spectrum. Under the DSM-V (more about that later), my oldest son (who is now an adult) is classified as “level 2: requiring substantial support,” and my youngest son is classified as “level 3: requiring very substantial support.”
My older son’s journey to a diagnosis began at age two, when we started speech therapy for a child that had never learned to talk. He did not gain and then lose skills – he simply never gained. By age five, he had a diagnosis, therapists, and an Individual Education Plan (IEP) that has followed him to this day. I am pleased to say that the child who never talked eventually became the young man who never shuts up, but that doesn’t mean that a whole host of support is not required for his everyday life. At age 18, his father and I legally gained durable power of attorney for him. He is working in a job training program that we hope will eventually lead to part-time employment – at which point, yes, he will be paying taxes. He loves baseball (watching, not playing), and is a swimmer for his Special Olympics swim team (something that a Kennedy should really know about). He has written poems in school, but prefers drawing and is an accomplished artist. His social life, even without dating, is better than mine, as he has an entire group of close friends for years, some since elementary school. And yes, he uses the bathroom by himself.
My youngest son’s diagnosis happened at age one, thanks to being involved in autism research studies that flagged him for early intervention. Despite the amount of effort and therapy that we have invested in him, he still lives right at the borderlands of “severe.” His speech is halting and choppy, but he can usually make his point through single words. He is a lover, not a fighter, and even in our days of absolute terror with him (he was an “eloper” in early childhood, and we had to put alarms on doors to make sure he didn’t escape the house unnoticed), we knew he loved us and we loved him right back. He might never hold a job or pay taxes, but we will endeavor to find meaningful things for him to do with his life (he’s still in middle school, so we’re on the early side of things). He loves watching baseball, but prefers a long walk listening to music. He hates art projects, but music is his passion and obsession. We know we will eventually be assuming legal guardianship of him in adulthood, and have built the framework for that in the future with our family attorney. And yes, it took him until he was eight, but he does use the bathroom by himself.
Neither child has “destroyed” our family, but I attribute that to my husband’s and my commitment to each other, our faith, and to giving these kids the chance to become the best version of themselves. I realize that this is a lot of information, and I have tried in to preserve my kids’ privacy while still detailing the impact that autism has had on our lives.
So, let us return to RFK’s first comment, which made wild generalizations about people with autism. The problem is, he is both wrong for making the generalization, and correct that yes, there are autistic individuals who fit his descriptors. For every indignant parent who pointed out that their autistic child was a well-adjusted adult holding down a job and paying taxes, and every autistic person who said the same, there are many severely impacted individuals who are in need of inpatient or institutionalized care. And here we reach a massive divide in the autism community itself – the split between “high functioning” and “severe.” Despite being lumped together thanks to the revamping of diagnostic criteria, there is a wide chasm between the two.
It’s becoming increasingly clear to me that combining Aspergers and autism was a huge mistake.
The autism spectrum is just too big. There aren’t meaningfully shared interests between the highest and lowest functioning ends.
From @JillEscher: pic.twitter.com/pISbOx4l8L
— Emma Camp (@emmma_camp_) July 20, 2023
In the same way, it doesn’t make sense to prevent or “cure” super high-functioning autism, but it absolutely makes sense to invest time and research into figuring out how to treat or prevent the kind of profound intellectual disability present in severe autism.
— Emma Camp (@emmma_camp_) July 20, 2023
While these tweets are old, the sentiment behind them, and the article that Emma Camp references (which deserves a read of its own), still hold true. There is a reason that the axiom holds that “if you have met one person with autism, you have met one person with autism.” It never stopped being true, and each person is an individual – which means each autistic person is an individual with different needs and hopes and wants and dreams. For anyone, any advocate, or any HHS Secretary to engage in massive generalizations? Well, that lacks what I said we needed in this conversation in the first place – nuance, and grace. The combining of Asperger’s Syndrome and autism into one giant umbrella of autism spectrum disorder, along with the creation of “levels” in the DSM-V (if it’s a spectrum, why do we need levels?) has made for a chaotic problem. In fear of missing anyone, the criteria became so broad that it snared those who wouldn’t have been labeled a generation ago. For RFK to dismiss how those numbers have skyrocketed since the revamping of the DSM is ludicrous, and any reasonable person would have to take it into account.
However, RFK is still insisting that there must be an environmental trigger of some kind that is causing autism, and has vowed to figure this out by September. He is currently falling into the same trap that Joe Biden did with his “cancer moonshot” claims. Sometimes, the answer isn’t what you want it to be. It would be shocking and amazing and Nobel-prize-winning if a scientist discovered a single environmental trigger that causes autism, or cancer, or any other genetic disease or disorder. But the reality is that it will likely be a combination, as Dr. Nicole Saphier pointed out in the Wall Street Journal.
Autism spectrum disorders are extraordinarily complex neurodevelopmental conditions, not a one-size-fits-all diagnosis. Like cancer, autism’s origins are multifactorial—driven by a delicate and often unpredictable interplay between genetics and environment. Certain genetic mutations can increase a child’s susceptibility to autism. Environmental exposures—ranging from prenatal factors like maternal health, parental age and toxin exposure to early-life influences such as infections or nutritional deficiencies—can be powerful triggers in those already genetically predisposed. This is what makes autism so difficult to untangle, and why simplistic or politically motivated explanations do a disservice to both the science and the families seeking answers.
Mr. Kennedy has a reputation for questioning the establishment, and in some cases that’s needed. I support transparency in science. But when it comes to autism, we can’t afford to chase ghosts. The stakes are too high. We need rigorous, unbiased, replicable science. We need researchers who aren’t playing to a base or agenda but are instead committed to following the data wherever they lead.
It’s a poor scientist that doesn’t let go of his pre-conceived hypothesis in the face of more evidence, and if RFK insists on holding onto a sole environmental cause for autism, it will not go well for him. Parents are understandably frustrated after years trying to untangle and decode autism. For RFK to imply that some all-encompassing environmental factor must still be out there, waiting to be discovered, is a slap in the face to all of us who have participated in autism research. In our family, we have donated baby teeth, blood, saliva, hair, and MRI scans of our kids’ brains. The research community, in the most Rumsfeldian of terms, is well into the weeds of the “unknown unknowns.” The scientists don’t know what to look for, and they likely won’t know until they actually DO find something. And they have likely run down and thought of everything that RFK would suggest. Has he bothered to ask?
Autism is not a black-and-white diagnosis. It’s a spectrum with many shades. It won’t fit neatly into any one box. If I sat around and chased down every single theory as to why two of my kids are on the spectrum, I would end up going mad. If Secretary Kennedy and the Trump administration are serious about helping families who are impacted by autism, then perhaps they should listen to Jill Escher, who wrote this during the 2024 presidential campaign in The Free Press:
But no matter what is causing autism, one thing is unequivocally true. We are woefully unprepared for the mounting demand for adult autism services. While revisionist histories have preached that autism is natural neurodiversity that has always been here but we somehow never noticed it, in the real world the numbers of disabled autistic adults in need of lifespan care are swelling, and fast. And where are the options? If autism has always been around and in these numbers, surely we would see the legacy of programs and housing services all around us. But we don’t. We must now invent a very complex and costly future for our loved ones. Because autism parents like me—we won’t live forever.
I cannot emphasize this enough. So long as we are riding the identitarian train of autism, we are ignoring the adult services catastrophe that most assuredly awaits us. As we lose autism parents, we lose nearly everything that makes life possible for every person disabled by autism: the housing provider, the 24/7 supervisor, the program manager, guardian, trustee, financial manager, benefits manager, advocate, cook, driver, hygienist, housekeeper, launderer, medical supervisor, recreation provider, interpreter, iPad fixer, handyman, protector from abuse and neglect, and of course, the main source of love and nurturing. It’s the equivalent of more than a dozen jobs if not more, plus jobs money can’t pay for.
While RFK wants a cause, the parents in the autism community are looking to be seen. Knowing a cause does not change the immediate needs of someone with severe autism, and neither does lamenting over them or dismissing their existence. There has to be room and grace for the “quirky” to be accepted and the “severe” to be helped, without either side feeling like the other one is taking something away from them. Maybe some of these issues can be re-addressed in the next DSM someday, and those who are high functioning can be given their own space, while those who are profoundly impacted get the recognition they need.
If we can take away anything from this debate, it’s that if you’ve met one person with autism, you’ve met one person with autism. Take it from a mom who knows two of them well – and give us a little grace.
Featured image: original Victory Girls art by Darleen Click
Que says: Deanna, your fine article does demonstrate one truth: that a kook like RFK Jr. should never have been allowed to come near HHS, much less run the department.
I commend you and your husband for your dedication to your sons.
Lloyd says: Agree, but maybe having this kook in the discussion might lead research/results in a new direction that might just benefit all !!
I would not have placed him in his current position, but I am willing to see what he can do.
Que says: Oh please. If you needed heart surgery, would you want a surgeon who is an expert at his craft? Or would you want a kook who wants to experiment?
This clown may be possibly affecting the health of Americans through harmful policies, but you want to give him a chance? Why?
I know it’s not trendy among the MAGA crowd, but I would rather consult people who have studied autism seriously.
I say that as someone who is a trained professional in SPED.
NTSOG says: Since Lorna Wing brought the writings and research of Austrian Hans Asperger to the attention of the broader world there has been a misconception that those diagnosed under DSM IV as presenting with Asperger’s Syndrome [AS] were the ‘smart’ autistics. However in my 40 year career working with autistics [mostly intellectually disabled] I have have had several AS clients who had Full Scale IQs in the low 40s. They were significantly intellectually impaired, but they did not present with any communication impairments at all. indeed they all presented with excellent communication skills, though their intellectual impairments meant that the content of their communication was not especially deep. The absence of communication issues is a defining criterion for an AS diagnosis. Indeed some autistic children, from early childhood. present with precocious speech.
The diagnostic criteria have been broadened since DSM III defined Infantile Autism. Under DSM III several of my autistic clients, born totally blind, could not receive funding specific to autism because they did not meet DSM III criteria. Similarly a client who suffered severe anoxia at birth and was classically autistic in presentation was in the same situation. Now under DSM V it is recognised there are several ways to become autistic other than genetic.
For the record I was diagnosed nearly 30 years ago as AS, but the diagnosticians assessing me believed I was a classically Kanner Autistic though having a very high IQ. I was diagnosed AS according to DSM IV mainly because as a two year old I presented with precocious communication skills, especially verbal. My brother is also a very high IQ AS as are others down the paternal line in my family. For us it is genetic in origin.
It is my professional opinion having worked with nearly 2000 autistics that there is only autism, i.e. the fundamental traits of autism can be found in every autistic regardless of communication skills, personal presentation or IQ. People may ‘tack on’ all sorts of labels, but fundamentally we autistics all share the same underlying traits to a greater or lesser extent.
John Shepherd says: The cause?, schools and parents get money for autism and ADD. The definition expands because of the incentive.
NTSOG says: John for much of C20 children and adults who were mentally retarded [now called intellectually disabled] were placed in institutions in the UK, USA and in Australia and some other countries. They were out of sight and out of mind. Many such institutions were closed in the late C20. Generally once placed in such places such people received no further assessment unless their presentation was extreme. About 70% of autistics are intellectually disabled. Thus institutions and special schools [if such education services were provided by governments] included a large population of undiagnosed autistics. Sometimes autistics were actually considered to to be schizophrenic in the past. In fact when I was a graduate student in the disability field in the late 1970s a possible diagnosis for autistic children was Childhood Schizophrenia. We now know that there were more autistics in the population than previously thought. The strict and narrow diagnostic criteria of DSM III in relation to Infantile Autism have been broadened to allow for those who became autistic as distinct from being born autistic.
There are some families – not many in my experience – who seek autism diagnoses for their children when in fact their children are not autistic. One reason is that their children are out of control in terms of their behaviour and/or present with another developmental issue or condition. Such families sometimes go ‘doctor shopping’ in the hope they find a compliant paediatrician who will give a diagnosis thus allowing specialist services to be funded when in fact it is poor parenting.
Note however we are long past the time when parents are blamed for their children being autistic as was claimed in the 1950s by the now discredited psychologist at U. of Chicago Bruno Bettelheim with his theory of ‘refrigerator parenting’.
therealguyfaux says: A gentleman of my acquaintance has a brother who’s now in late middle age. As a child, the brother was intellectually slow, and barely spoke. He was diagnosed as being some sort of autism spectrum, but he was mainstreamed into the school system where he was picked on. By the time he was in his late teens, he was going schizophrenic, the typical time of onset, but because of his previous history of selective mutism, his descent into schizophrenia went largely unnoticed. That is, until he would start shouting about people who weren’t there who were bothering him with their voices in his head.
Basically, you had a kid who was a slow learner and a sweet-natured kid, though quiet and severely introverted and pathologically shy, deciding sometimes not to talk. When he goes full-tilt out there, it was just chalked up to “that’s just [Name] being his autistic self…” till it was obvious he was actually hallucinating.
A reader says: Now THIS is actually the kind of post I wish this blog could be know for. Because it’s nuanced and thoughtful and doesn’t attack or pick sides or fights. I wish more posts could be like this since they add to the discussion rather than silo it off to one side by calling names or calling the opposing viewpoint “demons.” Autism isn’t political, because autism can touch anyone, regardless of political affiliation.
The sad truth is, a large swath of Kennedy’s idea were very clear when he was first proposed as health secretary. He wants to appeal to the anti-vax crowd and to find a neat, tidy answer to autism to justify shuffling those with it out of society. And many on the right refused to believe him. In fact, I’d argue that his view of autism as a “disease” aligns with Trump’s views on the disabled. After all, according to his nephew, Trump has said that severely disabled people should “just die.” They view them as expendable and worthless if they aren’t contributing to society according to their specific metrics, such as paying taxes.
What should alarm everyone is the news, announced today, that they want to create a “disease registry of people with autism.” That blatantly smacks of eugenics and the Nazis registration of all children with disabilities. I honestly don’t think camps or systemic murder are too far off if things continue down that direction.
Now is the time for everyone, parent or relative of a person with autism or another disability to speak out and speak out loudly. Push back. They will come for your loved ones since they’re signaling it loud and clear in the language they’re using. People with autism deserve respect and love and care the same as everyone else. And if you call yourself pro-life, you should fight for their lives as hard as you would the unborn.
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