Autism is still only formally recognised through “clinically significant impairment”. This means that traits not immediately recognisable as deficits aren’t considered enough to officially class a person as autistic.
This provides the backdrop to how, in mainstream society, autism is usually tackled in one of two ways. I call these approaches “entrenched” and “toothless”, respectively. In the entrenched, clinical version, autism is a fixed medical defect: something wrong with the person; something to diagnose, manage, treat, or ideally prevent. In the toothless version, autism is de-categorised: “Well, aren’t we all a bit autistic?” It’s vague, universal. In this model, the label is allowed to those who aren’t noticeably disabled, but only once it’s been drained of explanatory force. In effect, it’s made harmless by becoming meaningless.
So autism is (by the serious scientists) permitted as pathology, or (by the liberal progressives) dismissed as personality. And wherever the implications of denying autistic people a distinct profile become too evident, any difficulty is handed straight back to the medical model as straightforward dysfunction. Perhaps with a little aside about how just because a person's struggling doesn't mean they're autistic.
In this way, the two positions prop each other up neatly. What gets resisted, on both sides, is the middle ground: autism as a real, embodied, disabling-in-context way of being in the world. Overall, it starts to feel like a multiple-choice question where the most obvious answer is missing.
There’s an error of logic at work here known historically as petitio principii, where the proof is essentially the same as the thing it’s meant to prove. A famous example is Molière’s joke about opium: it makes people sleep because it has a virtus dormitiva – a “dormitive virtue.” In other words, it makes you sleepy because it has sleep-making-ness. In the case of autism, the deficit is smuggled into the definition and later presented as the conclusion. Through this subtle manoeuvre, it’s established that deficits are the only acceptable proof that a person is, indeed, autistic.
At times, a bit of a balancing act is required to maintain this position. Autism is a lifelong state, known to be highly heritable.1 In modern usage, we usually describe it as a “neurodevelopmental disorder” or “neurological condition”.2 But, even while this framing is widely accepted, autism continues to be clinically measured – in the absence of biomarkers, despite the hopeful billions spent in research money – almost exclusively through its outward manifestations.3 Some of which may look suspiciously like distress.
It’s a bit like measuring the water in a glass only by looking at the condensation on the outside, without taking into account things like room temperature. It’s not that there isn’t any water; it’s just that the way you’re measuring it is highly unreliable.
In effect, the “disabling-in-context” part needs to be downplayed in order for the model to still hold logical weight. And, in situations where the signs of distress caused by being misunderstood, unsupported, or pathologised are treated as evidence of autistic deficit, it becomes a double bind.
But I’ll come back to this later.
Autistic people’s voices and “lived experience”
Since the 1990s, a more holistic framing of autism has been taking shape. It’s still on the sidelines, but growing nonetheless. This model has begun to shed light on what autism is inside – so going deeper than just its outward manifestations. Autistic and neurodivergent communities have played a crucial role in this, as new knowledge and understanding have spread in ever-widening circles as people share their experiences. Hand in hand with emerging neurodiversity scholarship, this is helping to advance our understanding. A new map has begun to emerge.
This map reveals autism as something else. As a neurotype. This word is increasingly used, and is at last starting to find its way into dictionaries. The more we understand, the more the world seems to open up: showing not one correct way to be human, but a vast rainbow of ways of perceiving, feeling, and relating to the world.
Over the coming weeks, I’ll be exploring that chunk of the rainbow of humanity where the autistic neurotype falls, revisiting each colour and shade to ask whether traits traditionally seen as deficits might look quite different in another context. I suspect it might be a bit like looking at a room in the mirror and suddenly noticing that a picture is crooked, or that there’s a huge spider’s web in the corner.
The first article in this series, exploring autistic “black-and-white thinking”, has recently come out in Thinking Person’s Guide to Autism.
Needless to say, this new, emerging, and colourful vista of human neurotypology has not gone unchallenged. As autistic people have claimed autism as a natural way of being, an identity, and a community, the determination to redraw its boundaries from above has intensified. Many lengths will be gone to, it seems, to protect the mythical normal.4
Excluding those who aren’t visibly impaired from belonging to the category of “autism” is an obvious way to defend the paradigm of autism as simple impairment. Recent arguments about “severe” or “profound” autism have made themselves popular by claiming to protect those with the highest support needs. While this looks logical on the surface, all kinds of problems and inconsistencies pop up when high support needs are treated as though they show autism more truthfully.
Plus, it’s a bit of a full stop. If this is seen as the solution, there’s no need to examine our current systems or norms. Nor explore things like co-occurring conditions, trauma, communication access, poverty, exclusion, pain and suffering, institutional failure – and the myriad other things that may be being bundled into that one word, “disorder”.
In the meantime, “lived experience” is spoken about by traditionalists with deep suspicion, whether the experience in question belongs to autistic people with high support needs or those with low ones. Autistic people may describe sensory pain, masking, distress, or relief at accommodations, yet these accounts are held to be overall unreliable and no match for “proper” forms of research.
This suspicion doesn’t seem to extend to the lived experience of experts dealing with the outward manifestations of autism, however. Indeed, far from being disbelieved or cautioned that their interpretations may be unreliable, their experiences of autistic traits have shaped much of the diagnostic criteria in the field.5
For example, the increasing focus on autistic sensory experience is sometimes seen as exaggerated, or even ridiculous.6 Of course, I can understand how – in the older model – the evidence of autism was easier for clipboard-holding scientists to observe and measure: children screaming, clamping their hands over their ears, or banging their heads repeatedly against walls. It just seems sad to me that those things are seen by some as better evidence than autistic people’s reports about our own experience: that the light hurts our eyes, the noise is overwhelming, or we need to be alone.
But I mustn’t make this just about myself. In truth, all of this belongs to something much larger. The current discourse around autism, and neurodivergence more broadly, is closely bound up with the wider political and economic arena.
As wealthy interests and right-wing political forces gather strength in our countries and globally, there’s pressure to divide us. Through pathologisation on one side and discrediting on the other, the old logic around autistic people is springing up once more, in insidious and creative ways. Like knotweed you thought you’d got rid of in the garden, it was never fully gone: just waiting underground, ready to return, spreading and choking what had begun to grow.
I will attempt, in a series of articles over the next weeks, and drawing on other neurodivergent researchers’ and activists’ work, to help bring the separate parts of that map back into focus, and to connect them up with one another. To place that whole within in the larger world. And overall, to shine more light onto that varied and interesting landscape that is the autistic neurotype.
❤️
Footnotes
- We know autism is heritable through studies done in families; i.e. through statistical measurement looking at how likely it is that different family members of the same family will be autistic. ↩
- Saying that autism is a “neurodevelopmental disorder” or a “neurological condition” in an explanatory tone rather implies that those are satisfying end answers. They are, after all, nice long and scientific-sounding terms. But really, all they mean is that brain development unfolds over time through biology and environment. It’s a bit like saying a cake is a “whisking product”: true enough, but it doesn’t tell you much about the ingredients, the recipe, or the cake itself. ↩
- This tradition has its roots in behaviourism, particularly the work of John B. Watson, who drew on Pavlov’s conditioning experiments and argued that human psychology should be studied through observable behaviour rather than inner experience. B.F. Skinner later developed this into operant conditioning, with its focus on reinforcement, punishment, and the shaping of behaviour. In autism intervention, these principles were taken up most influentially by Ole Ivar Lovaas, whose intensive behavioural programmes for autistic children became a major foundation for what is now known as Applied Behaviour Analysis, or ABA. ↩
- For an exploration of how ideas of “normality” are historically and politically constructed rather than being natural facts, see Empire of Normality. See also Michel Foucault, particularly his work on the historical construction of normality and deviance. Perhaps of particular relevance here is his book, Madness and Civilization: a history of madness in the age of reason. ↩
- Leo Kanner’s 1943 paper, Autistic Disturbances of Affective Contact, discussed children whose behaviour didn’t fit ordinary expectations of childhood. Children are meant to fall within a narrow window of “normal”: to respond, play, speak, learn, attach, and develop in recognisable ways. These children did not. And in a world where childhood was heavily shaped by correction, reward, punishment, and social pressure, their failure to become “normal” even under those pressures became clinically significant. Among those experts who more publicly lost patience with autistic ways of being was Ole Ivar Lovaas. As recounted in Silverman’s Neurotribes, he became so frustrated by autistic children’s general non-responsiveness to ordinary rewards and punishments (the usual tools of behaviourism) that he had the floor of his experimentation room wired with electric current. Barefoot autistic children – who had previously failed to perform human contact correctly – would, on activation of the floor, satisfactorily leap into the arms of the adult assistants. ↩
- Well-known autism researcher Uta Frith has described sensory adjustments in classrooms as having “very little scientific grounding” in a TES interview, while Reform UK deputy leader Richard Tice called children wearing ear defenders “insane” in comments reported by The Independent. The Times also reported that Sarah Wild, headteacher of the UK’s only school solely for autistic girls, argued that mainstream schools were over-accommodating neurodivergent pupils through such sensory accommodations. From these viewpoints, sensory distress is treated less as a legitimate part of autistic experience than as an awkward and unnecessary demand. Yet sensory experience is now recognised as one of autism’s foundations: sensory differences are included in the diagnostic criteria for autism; substantial research shows that sensory symptoms are common in autism; and overall sensory processing is increasingly understood as shaping autistic people’s development, daily functioning, emotional regulation, and access to ordinary environments. ↩
Header photograph by Sophon_Nawit / Adobe Stock.
Photograph “Calling for the morning prayers at Thiksey Monastery, Leh (Ladakh), India” by Anandamoy.
Photograph: Girl with horse, by Richard Walker.