Death by a Thousand Cuts, Part 2

The big, bigger, and biggest pictures of preventable autism risks, bad medicine, and bully policy

As I was saying, the world is burning. Climate scientist-activists act like it’s an information problem. Most activists do. But scientist-activists like me learned ten years ago that’s not the case. Treating the effects of bad science policy (like climate change) as information problems misses the bigger picture: We’re at risk of death by a thousand cuts as many different problems of bad science create many different crises that keep many of us busy on different fronts. This is science education as a collective action problem. 

There are so many examples of these individually consuming, seemingly niche crises just within the realm of autism and other neurodevelopmental disorder risks. That’s what makes me envision a stacked Venn diagram, like a trippy Russian doll whose babies don’t fit neatly inside its mamas, and think — hey. This is the bigger, better windmill that’s really worth tilting at, Quixotic Squirrel. (That’s my spirit animal.) 

For example: 

• Accidental starvation from the wrong, dumb way modern Westerners reinvented breastfeeding in the late 20th century contributes to newborn jaundice incidence and severity which, along with phototherapy treatment for said jaundice, may substantially increase autism and other neurodevelopmental disorder risks. For autism, we’re talking about a possible risk increase in the neighborhood of 68%. 

• Serotonin reuptake inhibition (via common SSRIs and SSNIs) before and during pregnancy is associated with even bigger possible risk increases in the same outcomes. For autism, we’re talking about up to more than a doubling of possible risk.

• Some anti-epilepsy drugs, especially sodium valproate (of “worse than thalidomide” fame, pose similar risks. 

• Abortion may pose substantial risks to future pregnancies, such as increased risk of preterm birth, especially sooner after abortions. Those risks, in turn, tend to increase autism and other neurodevelopmental risks; base rates for autism are hard to pin down because the target seems to be moving, but typical estimates are something like 1% in the general population versus 7% in premies. But abortion researchers habitually misinterpret data showing substantial possible risks to maternal health and fertility, which in turn spell possible risks to future kids, to deny risks (most recently here). The press habitually regurgitates this misinformation.

These are all great case studies in how there is no “science says.” Only scientists — always interpreting, never knowing precisely, and often making mistakes from our own, inescapable perspectives. The reality of no neutrality is particularly scary in realms where patients desperately need neutral information. It’s a comforting myth that we can have it. Just as Rabih Alameddine suggests that “world literature” writers are purveyors of comforting myths, giving non-threatening slices of the Other to a subset of an American audience, so too do I want to suggest that science and science writers are often purveyors of comforting myths about what “science says,” when the unsanitized evidence is actually quite frightening. It suggests we may want to have a more defensive posture towards modern medicine, which is not a preferred story if you’re a modern medical professional.

The comforting myths here are about risk-free and proven beneficial breastfeeding, serotonergic drugs before and during pregnancy, anti-epilepsy and other psychotropic drugs, and abortion. The reality is that the evidence suggests substantial possible risks of common, long-term, and fully preventable harm to children, balanced by largely uncertain benefits. Not exactly a ringing endorsement of healthcare as usual. Sacred cows this way, burgers at 7. 

These four among many women’s health case studies of substantial possible autism and other developmental disorder risk increases haven’t gotten linked in the medical literature. Systematic reviews tend to do rote search term dances involving checklists that discourage critical thinking about causality. Researchers tend to be isolated from clinician and patient communities that could tell them useful stuff about life on the ground and what might matter in thinking about causality. Academic structures reward specialization (selecting against generalists) and conformity (selecting against anti-authoritarians). And being a human and a scientist at the same time is weirdly taboo. So everybody stays in their silo — except generalists, who are now mostly methodologists, outsiders, or both.

Still drawing the nested Venn diagram, zoom out more. What we’re talking about in these autism risk examples is developmental disorder risks to kids from medical choices mothers made before and during pregnancy — based on incomplete information at best. In this vein, there’s some exciting work going on in the UK right now connecting different forms of pseudoscientific birth interventions and lack thereof on the NHS under one umbrella. Hopefully this gets done much more.

Delay and denial of birth interventions like C-sections may be another major developmental disorder risk contributor. But researchers usually avoid proposing that solution to the apparent problem of birth factors (like fetal distress and birth injury) contributing to autism risk. It’s mostly moms who come out say this is the issue. In a weird way, delaying and denying requested things like pain medication in labor and C-sections seems to be a common medical practice that is like its own intervention. The new, old medical practice of managing hysterical women, backed here by the comforting myth of natural birth being universally possible and relatively risk-free, particularly for the child.

Zooming out to a larger level again, this is about preventable harm from common medical practice (iatrogenesis). Medical nerds know it’s not just birth defects and developmental disabilities for drugs and kids. It’s harm from cancer screenings (Bewley, Gøtzsche). Psychotropics (Whitaker, Gøtzsche). And surgeries that turn out to not work when they’re finally properly tested. 

Zoom out more, and what we’re talking about goes beyond medicine, to science policy broadly construed. Whatever your area of interest or political persuasion, you probably know examples where experts have mangled complex scientific matters, making bad practice from bad research with tremendous human consequences. Forensics (arson pseudoscience and the death penalty, agriculture (Mao’s war on sparrows and the Great Famine), and drug education (DARE: backfiring since 1992, now in Brazil!) spring to mind. Everyone has at one point been in conversation with an expert telling you how it is, when it becomes apparent they have no idea what they’re doing. But they’re still in charge. If the world were a playground and policy were shoving, this would be called bullying. But it’s dumber than that.

This is just the big, modern version of the big, old problem that might (power) doesn’t make right (evidence-based policy), people in power often get it wrong, and it would be better for everyone (public interest) if we could somehow get it less wrong as a society, even as individual cases require individual cost-benefits analyses and decisions. The full diagram now goes: (0) your favorite mom and baby healthcare activist issue here (infant feeding, SSRIs and other potentially teratogenic drugs, abortion, “normal birth,” Group B Strep, delayed/denied C-sections, etc.), (1) developmental risks to kids from moms’ medical choices (almost exclusively made based on misinformation), (2) other iatrogenesis (ditto — informed consent is a fairy tale, like Katz said), (3) other science policy screw-ups, and ultimately (4) might doesn’t make right, but everyone wants to live in a world they think is just. So somehow the mere fact that science is power and power gets stuff wrong is hard for us to intuit, especially when “science says” (modern secular religion). 

Of course we’e stuck in the same infinite regress of rationalizing abuse of power that every other generation in every other civilization has been stuck in. We’re the same species. Built with the same brains to love the imperfect people who take care of us from the start. Replicating those evolutionarily successful patterns everywhere we go. Poor, stupid fucks, all. Now what are we going to do about it?