A Medical Professional Clarifies Common Misconceptions About Autism
The whip-smart and tenacious new Health and Human Services Secretary, Robert F. Kennedy Jr., isn't messing around when it comes to shaking up the system, particularly regarding individuals with autism. As part of his progressive agenda, he aims to offer meaningful help to those living with autism, but his latest press conference left many individuals within the autistic community feeling uneasy due to some questionable statements muddying the waters.
As a pediatrician focusing on autism and neurodivergence, I felt it necessary to set the record straight.
What exactly is Autism?
Autism is simply put: a distinctive pattern of neurodevelopment that affects how a person's brain interconnects itself throughout infancy and childhood. Once shunned as a disorder, it is increasingly understood as neurodivergence – a different walk of life with its own unique strengths and hurdles.
Time for the Truth: Breaking Down that Autism Press Conference
Kennedy's comments during the press conference stirred up quite a tempest in the autism community, sparking concerns due to mischaracterizations of autism and insults hurled at autistic individuals. Here, I'll shed some light on these assertions and bring some much-needed sobriety to the discussion.
Diagnostic Criteria: Changes as Clear as Day
"It's a waste of time to believe the increase in autism is merely smarter diagnoses or updated diagnostic criteria," Kennedy proclaimed. One would be hard-pressed to find a more incorrect statement within the annals of autism research.
In the timeframe Kennedy references, many children who would now be diagnosed with autism were labeled with "mental retardation" or "childhood schizophrenia" – diagnoses that only disappeared from the Diagnostic and Statistical Manual of Mental Disorders in 1987. Moreover, the idea that autistic children are always severely impaired or would stand out like a neon sign is a misinformed assumption that overlooks the subtle differences in communication and behavior faced by many autistic individuals.
Causes of Autism: Let's Settle This Once and for All
"This disease is preventable," Kennedy asserted. "Studying genetic causes is a dead end." But if we look at the history of research, we can see that the genetic nature of autism was recognized all the way back in the 1930s, and scientists have known since the 1970s that autism is hereditary. In my own pediatric training, we referred to family members of autistic patients as "on the spectrum" – discussing how they displayed all the features of autism but weren't severely impaired enough to receive a diagnosis. These days, those individuals would be diagnosed as autistic themselves.
Promise, Promise: Can We Really Eliminate the Cause of Autism by September?
"We'll know the cause of the autism epidemic and eradicate it by September," Kennedy declared with conviction in an earlier statement. While this promise is audacious, it is also highly uncertain from a scientific standpoint. Despite years of study, our research continues to show that autism is hereditary, and certain prenatal exposures or risk factors can make it more likely for the genes to express themselves.
Buckle Up: The Autism Spectrum
On the spectrum of kids with autism, 25% of them might be nonverbal, non-toilet trained, with extreme stereotypical behaviors such as head-banging or toe walking. But it's crucial to remember that 25% isn't the majority. It's important to understand that autism is a non-linear spectrum best visualized as a multicolored circle. Some individuals need a lot of support, while others need little.
The Lives of Non-Speaking Autistic Children: A Different Reality
Non-verbal autistic children, or non-speaking as preferred by the autistic community, often comprehend words and communicate through other means, like assistive technology. These children, when given the proper attention and support, can begin speaking as adolescents or adults. What's more, experts in the field are worried that autistic children are being inappropriately labeled with intellectual disability simply because they are non-speaking due to the way neuropsychological tests are designed.
Sensory Processing: A Double-Edged Sword?
Differences in sensory processing and experience are a crucial part of autism and can lead autistic people to find the modern world overstimulating. However, these differences can also give autistic individuals unique perspectives and advantages, such as in sound engineering or the practice of medicine.
Stimming: A Tool for Self-Regulation
Stimming, or helpful methods autistic individuals use to self-regulate, can take many forms, such as spinning in circles, making specific hand movements near the face, or fidgeting with an object. While some may view these behaviors as detrimental, they actually play a vital role in helping autistic individuals process and cope with their environment.
Misrepresentation of Autistic People: Time to Call it What it Is
"Autism destroys families," Kennedy stated. "These are kids who will never pay taxes. They'll never hold a job." While Kennedy has since clarified that his comments referred to children with severe autism, the autistic community has found his language to be offensive and concerning, as it echoes the derogatory language used during the eugenics movement in the 1920s.
By framing paying taxes and holding a job as the primary value of a person, Kennedy's comments suggested that those with autism have less worth than neurotypical individuals. This is at odds with my own personal mission as a pediatrician, who believes every child's worth is inherent and immeasurable.
Autistic People: They Can (and Do) Pay Taxes and Work
Many individuals with autism are employed and contribute to the tax base. It's worth noting that autistic individuals tend to require assistance when landing jobs and accommodations in the workplace, but with the right support, they can be successful contributors to society.
Poetry, Dating, and Other Misconceptions
"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," Kennedy asserted. It's impossible to accurately estimate rates of toilet training in the autistic population, but we do know that many autistic children learn to use the restroom independently eventually.
As for sports, autistic individuals have certainly shown their athletic prowess. For example, former NFL player Joe Barksdale and former NBA player Tony Snell have publicly discussed being on the spectrum. Moreover, I have personal connections with autistic individuals who have not only dated but are now married and employed in high-paying jobs in various fields, including science, engineering, technology, and medicine.
And, for those with concerns about literary abilities, the Poetry Society of America has highlighted autistic poets, and many have pointed out that famous poets like Emily Dickinson displayed numerous symptoms of autism.
Here's a poem by Florida pediatrician Nicole Armstrong Demoraes, MD, who happens to be autistic:
Mr. Kennedy–
I am autisticLike my father before me, and his father before himYou were almost rightThat I was "made" autisticBut not by a toxinNot an exposureNot by mysterious meansYes, I was man madeWoman madeAutistic as I was knit in my mother's wombI am not a burdenI am a brilliant physicianA dedicated motherA deeply loving wifeA steadfast friendI pay to Caesar what is his due(That's taxes if you missed it)I drive my own carAnd own my own homeI have even played baseball a time or twoI am artisticAnd fierceAnd loyalAnd stubbornYou will not negate me with your willful ignoranceWhen you presume to know what "made" me AutisticYou play at GodA shame you do it so poorlyYou are right about one thingI am sufferingI am suffering at your wordsWords that seek to tear me down,to erase me,to belittle and crushAh, but you see,Or rather you don'tThe things you name weaknessAre the things that make me(and so many other Autistic and Neurodivergent people)ExtraordinaryFor you see,Autistic people,We may see the world,Hear the world,Experience the worldDifferentlyBut that doesn't mean it isn'tOursAnd you cannot take it from us
Look at thatI can even write poetryThough I don't expect you to knowThat not all poemsHave to rhyme
Signed,An Autistic PhysicianN Armstrong, MD
Note on language: Most members of the autistic community prefer to be referred to with identity-first language, such as "autistic person" or "autistics," because they view their autism as an integral part of their identity. In this article, I have chosen language that honors this preference.
- Autism, as a distinct pattern of neurodevelopment, affects the way a person's brain interconnects itself throughout infancy and childhood, and it is increasingly recognized as neurodivergence, a unique walk of life with its own strengths and challenges.
- Kennedy's proclamation during the press conference that the increase in autism is not due to smarter diagnoses or updated diagnostic criteria is an incorrect statement in the annals of autism research.
- In pediatric circles, the genetic nature of autism has been understood for decades, and certain prenatal exposures or risk factors can make autism more likely for the genes to express themselves.
- Autism is a non-linear spectrum, with some individuals requiring a lot of support and others needing little, and it's crucial to remember that the 25% of autistic individuals who might be nonverbal and face extreme stereotypical behaviors is not the majority.
