Neurodiversity and Science
Is neurodiversity scientific? It’s an interesting question, which perhaps hasn’t received as much attention as it deserves.
Neurodiversity is a paradigm (as well as a movement). Are paradigms scientific? It really depends what you mean by ‘scientific’.
The neurodiversity paradigm is about science: it is the position that human brains are naturally very variable, and that’s broadly a good thing, even when some of those variations come with challenges. Interpreting variations as pathological is often problematic, on this view.
Neurodiversity is scientific in exactly the same sense that the medical model of autism, or pathology paradigm, is scientific. Scientists do not passively report on objective facts they have discovered about the world — certainly not when they are studying humans! Instead, they make all sorts of interpretations and value judgements, which inform how they talk about their subjects; what they study; and what kinds of evidence they pay attention to.
Describing something as a disorder implies a value judgement: that the difference being described is wrong in some way. Thinkers like Jerome Wakefield have tried to ground this sort of judgement in observations about distress levels or disruption of ‘normal’ capacities, and hypotheses about evolutionary fitness, but none of this avoids the fact that the term ‘disorder’ is heavily value-laden. Indeed, objective judgements about causes of distress and disablement are largely impossible; in a very general sense, these things arise out of the interaction between a person and their environment. As an autistic person I have experienced great distress, and been disabled in many ways, but it is not at all clear if any of this was an unavoidable consequence of autism. Autism can still be a disability, and a valid category, either way! But it’s not a disorder in any ordinary sense of the word, and the supposition that it’s a disorder in a technical sense really seems to be based on untested guesses about the sources of difficulties.
As for the evolutionary fitness angle, it’s not remotely clear that autism is an evolutionary disadvantage, either at the individual level or at the level of groups — either in humans’ evolutionary past, or in present societies. Tendencies towards high alertness and single-minded focus, for example, can be disabling or highly adaptive, depending on circumstances. Research within the pathology paradigm has a history of either ignoring advantages, or somehow turning them into problems.
The neurodiversity approach is a corrective to unscientific assumptions made by scientists.
Once you stop assuming, by default, that the problems faced by autistic people (or anyone who’s neurodivergent) are directly caused by their ‘disorder’, it becomes much less appealing to look for ways of preventing or ‘curing’ their differences, and much more appealing to look for ways of improving their lives. That’s likely to mean finding ways for them to more easily access education, employment, healthcare and wider society, but crucially, it means asking them what is important to them.
Besides changing the framing of differences conventionally interpreted as disorders, neurodiversity is strongly associated with taking people seriously about their own experiences. That’s because researchers working in a medical framework have not, historically, seen it as very important to listen to their subjects; after all, subjects are subjective. Better to have all the interpretation and priority-setting done by trained scientists who have no personal experience of what they’re studying and are, presumably, objective.
Anyone with any familiarity with anthropology might be able to spot some problems with this approach. I leave this as an exercise for the reader.
Decades of research in this paradigm have yielded strikingly little of real value to autistic people, our families, or people working with us.
Non-autistic people have developed theories of autism that explain only a few facets of autistic experience, while getting other parts disastrously wrong (see ‘Theory of Mind’ vs the ‘Double Empathy Problem’). Interventions, developed without meaningful autistic involvement, have focused on changing behaviours without ensuring that the people delivering them have the faintest idea what the meaning or purpose of those behaviours might be.
All this, and the descriptions of autistic people that have been produced are often misleading, dehumanising, and alienating.
It is no wonder, then, that a different way of approaching and interpreting autism research has gained so much currency in recent years — not just among autistic people, but with a wide range people with an interest in the subject. That includes a great many scientists, at this point.
Ultimately, the question of whether neurodiversity is scientific is academic. A far more relevant question would be is neurodiversity something that scientists should take seriously? The answer to that is unequivocally yes — and as an autistic person existing in this world, it is a huge relief to me that so many now do.
