Autism has a highly unusual status among medical diagnoses, in terms of having an eminently funded activist lobby that is opposed to the very idea of pro-cure research. In such a context, it is not surprising that some scientists (not to say all!) have capitulated entirely to the aggressive lobbying of the anti-cure clique within the broader autism patient population as a whole. However, it’s interesting to consider what reasons scientists might have for falling woefully short of both the letter and the spirit of the Hippocratic Oath:
With regard to healing the sick, I will devise and order for them the best diet, according to my judgment and means; and I will take care that they suffer no hurt or damage… I will comport myself and use my knowledge in a godly manner.
So why are some scientists turning aside from the ancient wisdom Hippocrates prudently enjoined upon the contemporary physicians of his day?
Well here, I’m going to discuss a few reasons they do this: the Smart Wallet, the Luxury Couch, the Fig Leaf and the Golden Egg!
Needless to say, none of the negative tendencies discussed here should be considered as applying to all those genuinely compassionate and morally committed scientists who care about pro-cure patients and their loved ones; but only to those who are (whether consciously or subconsciously) appear to be motivated more by personal expediency and narrow self-interest.
1. The Smart Wallet of Autism Research
All medical research money has to come from somewhere. There is no magic money tree, and so there is always an element of ‘politics’ (broadly conceived) in the area of research funding. Scientific funding can be a pretty cut-throat enterprise, and one of the most effective strategies for increasing the likelihood of getting funding and of course sustaining such gains, is to conform to the broader elite ideological consensus.
There is a very strong correspondence between anti-cure ideologues and followers of the neurodiversity paradigm. The latter refers to those who believe autism and other form of neurodivergence are not medical problems, but rather forms of diversity to be unhesitatingly and normalised, affirmed and celebrated without qualification. Because the neurodiversity paradigm is a postmodern intersectional social justice ideology, it teaches that if there is a normal/abnormal binary distinction in neurology, then this is a slippery slope that could lead to other forms of pathologisation: so if autism is deemed something that needs to be cured, then demands might arise one day to cure people of being black, or Hindu, or gay.
In this context, the strategically effective approach is to conform to the given elite norms of cultural neoliberalism, aka postmodern intersectional social justice ideology. That said, the role of the latter appears to be weakening as many countries are undergoing a strong ideological shift, so it is unclear how this might affect the strategic thinking of anti-cure scientists. The in many ways rather worrying rise of the Republican Party (USA), Conservative Party (UK), Lega Nord (Italy), Rassemblement National (France) and other such parties are part of an unsettling global shift away from authoritarian cultural neoliberalism towards some other kind of authoritarian tendencies, and it is unclear at this point in history how far this will affect the strategic thinking of the anti-cure scientists.
For up to now at least, there are some autism intellectuals who have managed to successfully bet on the safest horse for funding, by throwing out a lot of rhetorical bat-signals that safely communicate some kind of gestural adherence to some of the rather more chic, elegant and fashionable postmodern intersectional social justice agenda currents du jour. So how might current ideological shifts affect their tactics in times to come? Well, this pretty much remains to be seen….
2. The Luxury Couch of Autism Research
The postmodern intersectional social justice agenda, including the neurodiversity faction of autism patients, is an extraordinarily well-funded, powerful and vocal lobby, and to even remotely entertain undertaking any perceived provocation of that particular faction of autism patients (or their well-wishers) is to inevitably invoke a perpetual deluge of undying vitriol and hatred. Some scientists simply do not want to have to battle against a colossal legion of well-funded social justice activists who are armed to the teeth with all the resources of a dominant, hegemonic elite consensus.
Opposing the neurodiversity paradigm is risky, and even silence is risky as well; activists expect scientists to be overtly political rather than to take a purely scientific approach. Needless to say, they also expect scientists to take the right political approach, and not to simply follow their conscience and adopt the specific political perspective that most accords with what their individual conscience is telling them.
3. The Fig Leaf of Autism Research
Autism research can take you down some very dangerous pathways. Some of the subject matter is very sensitive. For example, genetic research does raise the spectre of a future pre-natal test: this in turn can provoke worries over whether people with autism will be singled out for elimination before birth. The cynical subversion of the disabled person’s individual dignity and the deprivation of the very right to exist under the banner of sinister weasel words like ‘survival of the fittest,’ ‘racial hygiene,’ ‘eugenics,’ ‘euthanasia,’ and ‘reproductive justice’ has long been a problem in many countries. Post-natal euthanasia, whether in the form of explicit state coercion (as in Aktion-T4) or the more “voluntary” kind (as in the Netherlands and Belgium of today) are not the only ways people with autism are at risk of elimination.
Indeed, the existence of any future pre-natal test would greatly increase the risk that more people with autism would be eliminated; at the moment, in the absence of any natal tests, eugenical abortion can easily be threatened or enacted on the basis of speculation (i.e. on a prudential basis, because of either or both parents having an autism diagnosis); but it is reasonable to expect the existence of a pre-natal test would exponentially increase this risk.
And because eugenical abortion is widely feared as a custom intrinsically dehumanising to disabled human beings, both born and unborn alike, scientists who are researching any possible genetic basis for autism place themselves in great danger of staunch and vociferous opposition. One way scientists can potentially shield themselves from such opposition is to use the fig leaf of neurodiversity to flatter and appease people with autism, or at least those autism patients who are followers of the neurodiversity paradigm to begin with.
Of course, given the all or nothing approach of some autism activists, it is dubious how far this strategy may prove successful; but it is possible it may at serve as a highly qualified damage limitation exercise, whereby the least committed and passionate of neurodiversity followers may leave such scientists alone, if not so much, the most radically devout and committed true believers.
4. Autism Research: The Goose that Laid the Golden Egg
The problem with any medical condition that is poorly understood is that the more you learn about it, the closer you get to being able to find a cure. And when there is so much money at stake in the scientific field, and people can make a very prosperous livelihood out of an entire area of medical research, it makes absolutely no strategic sense to slit the throat of the golden goose. In order to make the goose laying more and more golden eggs, your only option is to keep the field of research going. Once there is a cure, or anything like it, the field of research risks shrinking to a terrifying degree, and then you might be out of business completely!
This means of course that certain expedients are needed: one idea is to pander to the intersectional autism agenda, and to embrace neurodiversity. This helps slow down any progress towards finding an actual cure; with this urgency gone, it is possible to tinker with a lot of things and chip around the edges of the problem, simultaneously buying time to come up with excuses about why a cure is either biologically, semantically or morally unviable. We can summarise all this in form of a rule. We can call it, THE GOOSE RULE: the officially proclaimed likelihood of an eventual cure being found for any medical condition is inversely proportional to the lucrativeness of the research.
A few qualifications are in order before I finish.
First of all, the four reasons above are not intended as an exhaustive list, but they do certainly provide plausible explanations for why some scientists are fighting very hard against those patients and loved ones who wish for an end to their suffering; as there is no convicing moral case for why any scientists should behave so cruelly and heartlessly, and stupidity seems an unlikely explanation, self-interest would appear to be only possible angle for this unspeakably callous behaviour.
My second qualification is that any one or more of the four explanations given above, and perhaps more as well, may apply at any one time, as they are not necessarily mutually exclusive.
My third qualification is that we have to leave open the question of how far any of the above motivations are deliberately, cynically calculated, and how many of them are subconscious motivations of which the perpetrator may well not be fully cognisant.
Finally, I have taken the correct approach by speaking in the abstract and not singling out individuals.
The four reasons I have given above will inevitably make for some depressing reading for all those who remotely care about those who suffer from autism and from co-morbidities; but as someone who has been quite morally invested in this topic for a long time, it is worthwhile for me to explain a little bit about what is going on here.
I look forward earnestly to the day when neither cultural neoliberalism nor the new authoritarian currents have any place in this world.
That will take time, no doubt…
But the darkest hour is just before the dawn.
NB: This article is quite depressing compared to my more recent content. But on a more positive note, I am interested in doing some more positive interviews with Israelis on the topic of autism, including but not limited to scientists. After all, you can hardly tar all scientists with the same brush. Keep an eye on my TOI blogging profile to see if I can turn anything up! These will prove an occasional counterpoint to my more recent focus on religiophobia and the emancipatory promise of post-secularism. Also, feel free to message me if you have any suggestions or leads on any topic I’ve been writing about, or similar.