Autism, Tylenol, Conspiracy Theories, and Culture Wars: The Battles over Neurodiversity

 

We really need to talk about the concept of neurodiversity. Current events make that very clear.

As you are likely aware, if you were in contact with media at all this week, President Trump has announced that there has been a terrible rise in autism, and that it has two causes. One, everyone expected him to name, because it is the fixation of his Secretary of Health and Human Services, RFK Jr.—childhood vaccines. But nobody except for thrilled antivaxxers paid much attention to that same old discredited claim. The other was the surprise, intended to draw headlines and furor: acetaminophen, generally referred to in the US by the brand name Tylenol. In particular, Trump claimed that autism results in children whose pregnant mothers took Tyelnol. This isn’t actually a new claim, and those at the core of the MAHA movement, seeking to “Make America Healthy Again” through actions ranging from sensible to bizarre, were probably familiar with this particular belief. But as most people hadn’t heard the claim before, it attracted a lot of attention, which was the intent.

Let’s just get this out of the way up front: no, we don’t have some kind of scientific proof that “Tylenol causes autism.” Yes, there have been a few studies that found that the mothers of children with autism were more likely to report the use of Tylenol during pregnancy, but here’s the thing: the authors of those studies themselves say this doesn’t mean Tylenol caused the higher rate of autism. That’s a logical fallacy called “post hoc ergo propter hoc,” Latin for “after this, therefore because of this.” Scientists call it the error of confusing correlation and causation.

Let’s consider a real-life example of this fallacy: in the 1920s and 1930s, newspapers in the US regularly published stories warning beachgoers not to consume ice cream before swimming, as studies showed a correlation between ice cream consumption and shark attacks. Most people today can see that this was extremely silly. Yes, eating ice cream is correlated with being attacked by a shark, but not because sharks find the scent of a person with ice cream in their belly irresistible! It’s because people would both eat ice cream and go swimming in summer when it is hot outside. (This association would also have been much stronger back in the 1920s when almost nobody owned a refrigerator, then a recent and amazingly expensive device, and people went to ice cream parlors, often found at the seaside, to get the cold treat).

So: mothers of children with autism are a bit more likely to report having used Tylenol while pregnant, but that doesn’t mean Tylenol “causes” autism. People take Tylenol when they are for some reason in pain or have a fever. It is possible they had an illness that somehow increased autism rates, or perhaps the stress of maternal suffering itself makes an autism diagnosis more common. But consider this as well: it could be that the mothers of children with an autism diagnosis are on the spectrum as well, and as a result, have the common autistic experience of heightened sensitivity to stimuli, including painful internal stimuli. Many autistic adults have posted frustrated comments or snarky memes about the fact that their children are autistic because it’s a family trait:

And this raises another issue: a presumption that goes unquestioned by the president and all the antivaxxers and conspiracy-theorists and the parents giving their autistic children horribly dangerous bleach enemas to “clear them of parasites and toxins.” And that presumption is that autism is bad and should be eliminated by prevention if possible, and otherwise cured. It is not something one should tolerate, let alone appreciate.

On one level, this is pure eugenic thinking. It is related to the belief system that led American doctors in the early decades of the 20^th century to withhold all feeding from infants born with visible disabilities, and German eugenic scientists to identify a wide range of people with disabilities or nondisabling physical “deformities” such as intermediate genitalia for removal to concentration camps and death.

To be fair, most people in the MAHA camp are as horrified by eugenic murder as anyone else today. Their beliefs vary a lot, but they are usually convinced that some cadre of evildoers is intentionally destroying people’s health, and the MAHA goal is to stop and punish those evildoers and cure their victims. Some blame “big pharma” drug companies (and if on the left, capitalism generally, but if on the right, just this sector of the corporate world, which they may claim is run by malicious “globalists”—often a dogwhistle for Jews). Others blame science generally, viewing scientists as immoral, cold individuals who disrespect cultural traditions and religion, arrogantly imposing their will on the populace and ignoring the wisdom of common people. In any case, they want whoever is responsible to be stripped of their power and punished—and their victims to be cured and saved.

But this still involves a sort of eugenic framing. Under it, being “normal” is deemed an unquestionable goal. Physical and mental differences, whether actually functionally disabling or not, are framed as disorders, and thus as wrong. The “correct” attitude to take toward people on the autism spectrum is understood to be pity. Pity the poor children with their abnormal behavior! Pity their parents, saddled with such a burden! Autistic individuals are not termed “life unworthy of life,” as they were in Nazi Germany, but they are definitely understood as lesser. Ideally they should be cured, and if they can’t be cured, then trained to act as normal as possible, which is presented as necessary for them to function in society.

But there is a very different framework available for understanding what autism is and how autistic people should be understood. And that is the neurodiversity framework, and the larger movement in which it is situated: the disability rights movement. The fundamental assertion of the disability rights movement is that disabled people are not lesser types of humans, with lives ruined if they cannot be cured. Instead, they are people whose abilities differ from the norm, who should be respected, and who have the civil right to access education, jobs, public transport, buildings, relationships, and all the other facets of public life. They just need accommodations!

In the early years of the disability rights movement in the 1960s, these claims were seen as radical, and a demand for accommodations as unfair to businesses and towns, who would have to pay for things like wheelchair ramps and installing curb cuts at sidewalk corners. Today, people of all sorts, disabled and abled, have their lives made much easier by these changes, which we take for granted today. People who use wheelchairs are only one of many groups who found getting over a curb or up steps to be a problem—people pushing baby strollers or maneuvering loads on dollies are good examples. This fact is an example of the concept of universal design, with its goal of building things like structures and websites that people with a wide range of abilities and needs can use.

The neurodiversity framework applies this general approach to people’s mental styles, capacities, and experiences, which are quite diverse. Some individuals are neurotypical, and some are neurodivergent, but all are human beings with the same rights to respect, dignity, and access to public life.

Autistic communities and individuals have been very active in the promotion of the neurodiversity perspective. Look, they say, we know that neurotypicals often find us to be “weird.” We can be less able to pick up on social cues they automatically note and respond to. We can find different sensory stimuli that don’t bother them at all intensely uncomfortable—noises, or bright lights, or particular food textures, or tags on shirts. We can develop deep interests in topics that fascinate us that they find peculiar or boring, and want to share our interests when they have no interest in hearing about them. Conversely, they may expect us to share their “normal interests” when we do not, and find our disinterest somehow offensive. We can find changes in routine deeply uncomfortable when it bothers them little. We can have trouble with physical coordination that they scorn. They can be intolerant of the things we do to manage anxiety and regulate ourselves, like playing with fidget toys for those of us with modest stimming needs, to the rocking and hand-flapping and sound-making common in those with higher needs. And we may question social norms about what is proper or improper, virtuous or harmful, in ways that disturb neurotypicals who equate the normal with the good.

But, the advocates of the neurodiversity perspective say, the way that we and neurotypical people experience and act in the world are just variations on a human theme. Our way is not less valid than theirs. The problem is that they are in the majority, and they have built a world that accommodates their perceptions and learning styles and sensory preferences, not ours. We just need to be accommodated, too! This doesn’t mean that we’ll take anything away from neurotypical people. We can use the principles of universal design to make a physical and educational and social world that works for everyone.

To me, this sounds supremely reasonable, and like the fair thing to do. But that is not how it is received by some people—especially those whom you now find pressing for a search for the “cause of the autism epidemic” and the implementation of a “cure.” Sadly, this includes many people who are parents or other relatives of children with autism diagnoses. I say sadly, because to me, a core duty of a parent is to accept that their children will be unique individuals who differ from their parents in various ways, and rather than try to force their children to change or conceal their differences, to cherish their children as they are. Outgoing, extroverted parents should respect their quiet, introverted children’s needs. A bookish, klutzy parent should appreciate and support their child who is athletic and wants to play multiple sports. A straight, cisgender parent should love and accept a child who is LGBTQ+. And the parent of a child on the autism spectrum should love the unique person that their child is.

A parent who treats their child’s autism as a tragedy that has befallen the family, who invests their time and energy into finding someone to blame and punish, and who seeks to train their child to mask their differences--forswear their fascinations, stop complaining about their sensory discomforts, give up their soothing stimming activity, and “act normal”-- is sending that child a very negative message. They are conveying that their love for their child is not unconditional love—it is conditioned on their child acting in the neurotypical way that the parent does. It is akin to the parents who seek out conversion therapies when they discover their child is LGBTQ+. Such parents always say that they are motivated by their child’s best interests, but it sure looks to me like they are motivated by their own self-interest, valuing their vision of the child they want over the reality of the child they have.

Basically, I value a neurodiversity perspective, while the movement obsessed with finding someone to blame for a "tragic epidemic of autism" rejects that perspective. And that relates to something larger: the opponents of the neurodiversity movement are often also opponents of the idea that diversity should be celebrated generally. They—and the current presidential administration and its agency heads—abhor “woke DEI”, which they frame as evil. They want to impose norms, not to praise variance. They frame equity as discrimination against the majority, whom they believe ought to be centered due to the presumed superiority of their abilities and character. And they do not feel everyone has a right to be included. One way this manifests is in the ongoing effort to exclude trans people from public life, framing gender variance as a dangerous sickness to be combatted. And another is not just resistance to the neurodiversity framing, but an assertion that the entire disability rights movement was wrong. Accommodations are framed not as a right, but once again as an unfair demand upon businesses and schools. Many recent federal government bans have spoken, not of DEI, but of DEIA: “diversity, equity, inclusion, and accommodation.”

I for one do not want to undo the past fifty years of progress on disability rights. Nor do I want to undo what has been accomplished to support the full and equal participation in public life of women, people of color, queer and trans people, or any other groups. Most fundamentally, I do not want to live in a world of conformity, in which being “weird” is punished. I have always been one of the oddballs myself, and one of the good things I got from my highly eccentric father was to take pride in that.

I have zero doubt that if my father were a child today, he’d have received an autism diagnosis, and I would likely have received one as well. The reason people my father’s age never received an autism diagnosis was that there was no such thing when he was a child, born in the 1930s. People of my generation, born in the ‘60s, only got such a diagnosis if they were severely impacted, often nonverbal. The reason so many more children get autism diagnoses today is that we have expanded social recognition of the full autism spectrum, not because of childhood vaccines or Tylenol. What in the past was framed as eccentricity is today understood to be a manifestation of neurodivergence.

Being autistic can be disabling. But it can also produces talents. I’m not just talking about the very rare talents of a savant—the kind of person portrayed in the film “Rain Man,” with an extraordinary capacity for something like a particular sort of math. I mean the common tendency of people on the autism spectrum to cultivate deep knowledge of some topic of interest. There is a reason academia is full of neurodivergent people, once you take a look. What is an academic article but a particular type of “infodumping?” But you find these kinds of autistic information synthesis-and-sharing contributions everywhere—something to which this humorous post alludes:

There are pros and cons to any neurotype, just like there are pros and cons to being short, or to being tall. All life relies on diversity and variance, as different abilities and characteristics are called for under varied circumstances!

This is why my objection to the whole “Tylenol causes autism” claim goes far beyond complaints about bad science and conspiracy theories. I urge us to stand up for appreciating human diversity generally, and neurodiversity is a part of that.