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Breaking! Shoddy science reporting objectifies autism yet again! [1]

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Date: 2023-02-19  

Autism, being one of the perennial boogeymen of the modern age, has been the subject of highly misleading science reporting in the past week. Last year, we had hyped up articles about Tylenol causing autism (it doesn’t) and now there’s new reporting about a potential cure (there isn’t). Wildly inaccurate science reporting isn’t new and seems to cover every facet of human existence, but using science reporting to exploit and objectify already marginalized people is especially obnoxious.

The latest sensationalized reporting is about a potential autism cure using a widely available medication already used to treat epilepsy and bipolar. Except that the science isn’t great to begin with and that’s not even the conclusion. So we have a trifecta with this one: A click bait headline, a misinterpretation of the science, and initial research that is far from producing any useful conclusions.

First with the science. Some science people used a genetically engineered mouse to modify a gene linked to the production of the MYT1L transcription factor to produce mice that exhibit autism-like mouse behaviors. Then they used lamotrigine, a common anti-convulsant, to make the mice behave like normal mice. That’s about it. I don’t doubt that the effect is real, but there are some major problems with the interpretation. For one thing, mouse models of autism are dubious at best. Scientists are engineering mice to exhibit supposedly atypical mouse social interactions and repetitive behaviors and declaring that this is a decent analogue of autism in humans. Except that human social behavior and mental capabilities are far more complex that anything seen in mice. If autism could be identified in humans using the rudimentary observations that are used for mice, the diagnostic process would be relatively simple and wouldn’t involve full days of observations and batteries of tests. The mouse models are also based purely on behavioral observation and cannot capture anything about what’s going on with the mice internally at a cognitive level, which is a significant factor in autism. Second, mouse models, including this one, typically examine a small number or even single genes. This is compared to the hundreds of genes and environmental factors that are related to human autism. Third, lamotrigine has already been studied as an autism therapy and was found to perform no better than placebo. Many autistic people also take lamotrigine for frequently co-occurring conditions such as epilepsy and bipolar. While it treats those conditions well, there have not been anecdotal reports of core autism traits disappearing. If this were a real thing, it would have been noticed long ago. This was also a single study that hasn’t been reproduced and at best can be treated as a possible direction for future study. Not exactly solid evidence for anything resembling a treatment.

Now on to the bigger issues with the reporting. First, this isn’t something that deserved coverage in mainstream publications at all. It’s early stage research that’s extremely limited in scope and not clearly relevant to actual autism in actual humans. The treatment, if it even is shown to work in humans, would likely be limited in nature and only useful for a small subset of autistic people. If the research findings were based on large scale double-blind studies in humans showing broad efficacy, then sure, that would warrant publication. But it’s unreasonable to expect laypeople with no background in science and limited knowledge of autism to understand the nuances and limitations of the results (apparently that was beyond the capabilities of the reporters as well). It’s noise that’s completely irrelevant to anything going on with autistic people right now and unlikely to be relevant in the future, but that isn’t how it’s presented.

The second big issue is the headline. Presenting the medication as a treatment is one thing, but calling it a cure is completely different. There are really two elements to this language that make it problematic. The most obvious is that it completely misrepresents the science and even the content of the articles that follow. Now, I understand that click bait is pervasive in online media and this is really nothing special, but it’s still a bit obscene to treat a condition that affects millions of people as just another revenue generator. The headlines aren’t meant to help people, they aren’t meant to highlight useful information, but are just there to exploit people who are either hurting, afraid or will be upset at the sight of it.

The other problem with using ‘cure’ in the headlines is that the word by itself is almost the third rail of autism discourse. The whole subject of a cure has a controversial history. The best polling available (which I wouldn’t call scientific, even though it is a truly impressive analysis) shows that under 10% of autistic people would like to be cured if that was an option. The number is slightly higher for non-verbal autistic people who communicate with assistive technology, but still under 10%. I’ll grant that the number might be somewhat higher if a more rigorous polling method was available, but this ins’t a topic that many researchers seem to be interested in pursuing despite the obviously strong opinions in the autism community. But even so, it’s clear that a significant majority of autistic people don’t view curing autism as desirable, even if they have significant disability and would like to have an easier life. One nuance here is that most people (anecdotally) would have no problem with other autistic people being cured if it was entirely voluntary, they just strongly object to the idea that a cure should be treated as the default research objective. So just to summarize, people who want a cure are being baited with false hope, people who are afraid of autism are being baited with a remedy for their fear and autistic people who find cures to be objectionable are being baited with another poke in the eye from a media establishment that doesn’t really care about them as actual humans.

As a final note for anyone who is unfamiliar with the autism cure controversy, it might seem to be counterintuitive that marginalized people who sometimes have significant disability are so strongly opposed to being cured. Here’s the background on that subject. For many years, the prevailing narrative around autism was one of almost never-ending suffering for both the afflicted and their families. Autistic children (adults were rarely considered) were regarded as walking tragedies with little capacity for emotion or even awareness of their existence. Ivar Lovaas, one of the founders of Applied Behavioral Analysis (the only treatment officially recognized by most insurance plans) had this to say about autistic children in 1974

You see- you pretty much start from scratch when you work with the Autistic child. You have a person in the physical sense—they have hair, a nose and a mouth— but they are not people in the psychological sense. One way to look at the job of helping Autistic kids is to see it as a matter of constructing a person. You have the raw materials and you have to build a person

If you want your opinion of Lovaas to be lowered even more, he also contributed to gay conversion therapy, which has much in common with classical ABA. ABA as currently practiced has moderated (although many patients still consider it to be abusive), but its history is extremely problematic.

After decades of dehumanizing autistic children, it’s no wonder that a cure was regarded as a necessary solution. That began to change with the neurodiversity movement that sought to allow autistic people speak for themselves and move away from the narrative of unending suffering and tragedy. When we listen to autistic people, we find that they have human lives, experience human emotions, communicate, think and want to be accepted for who they are. Most also regard autism as part of their identity. Autism affects the way they experience the world, the way they think, the way they communicate and the way that they feel in their bodies. There are struggles, which are often significant, but autism is much more than disability and suffering. It isn’t something that can be neatly cut away and there are no non-autistic people hiding out in autistic brains waiting to be released. Speaking for myself, if I was cured, I have to wonder what would be left. Would I like the same people I like now? Would they like me? Would I have the same interests? Would my cognitive strengths and differences still exist? All of that would be up for change, and I can’t say that I would want to be transformed into a different person even if I ended up with an easier life. Ask yourself if you would take a pill to become wealthy and powerful if it would change everything about you as a person. Certainly some would, but most people would not. Treatments to help with specific difficulties would be great, but an across the board “cure” is not something I would even consider.

To put it more plainly, when my autistic daughter was in middle school, she came home one day railing against autism researchers (specifically the ones looking for a cure). When I asked her why, her heartbreaking answer was that those scientists think that people like her shouldn’t exist. Sure, there was some missing nuance, but from the perspective of a middle schooler, it’s a valid point. So there you go. For some autistic people, a cure would be a welcome relief from a life of disability. For others it borders on eugenics. Anyone reporting on autism needs to have more awareness of these feelings and avoid casually throwing around talk about a cure. They may not understand or agree, but they do need to start treating their subjects with more respect.

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[1] Url: https://www.dailykos.com/stories/2023/2/19/2150970/-Breaking-Shoddy-science-reporting-objectifies-autism-yet-again

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