• Autism is traditionally framed as something thoroughly and completely negative.¹ Even in the face of autistic people's own testimony to the contrary.

  I've found myself asking... why?

  You come across this in many everyday situations. It’s there in the “you don’t look autistic at all” comment – said in the tone of a bemused compliment.

  It’s there in the officially-preferred terminology, ‘person with autism’. The implication being that, if you removed the autism, you’d be left with a better, autism-free person.

  This ‘negative or nothing’ framing sits right at the heart of the clinical, medicalised model of autism. You can see it in the billions poured into the hunt for autism prevention, ‘treatments’, and biomarkers.³

  It’s expensive, this war on autism.

  This may come as a surprise to some, but autistic people with higher support needs generally feel, just as those with lower support needs do, that autism is not some defect that could be detached while leaving the self intact.²

  Some autistic traits take more ingenuity than others to frame as out-and-out negatives. Nonetheless, they're routinely presented that way. Consistency and moral seriousness are framed as rigidity.⁴ Honesty is rudeness. Deep focus becomes obsession. Distress at injustice, hypocrisy or coercion is termed ‘challenging behaviour’.

  Autism usually gets diagnosed when you’re still a child.⁵ As something imposed. You’re not meant to identify it for yourself; that's not how the system's designed. And you're expected, like others around you, to treat your autism like a cross to bear: a set of unfortunate symptoms to overcome... and that’s it.

  That’s why autistic teens and adults, including well-known writers like Higashida, rock the boat so much when they talk about how they feel their autism is part of them.⁶ That you couldn’t remove the autism and leave the same person, just improved.

  How could a crippling and unpleasant condition with only negative outcomes – says the narrative – ever be positive?

  That would be like saying, “I've got cholera and I love it.”

• Socially-approved approaches to autism

  In acceptable society, autism is tackled in one of two ways. I like to call the two approaches ‘entrenched’ and ‘toothless’, respectively.

  If you take the ‘entrenched’ route, autism is a fixed medical defect: something wrong with the person. Something to diagnose, manage, treat, or, ideally, prevent.

  In the ‘toothless’ approach, autism is de-categorised. “Well, aren’t we all a bit autistic?” It becomes vague; universal. In this model, the label is permitted only once it's been drained of its explanatory force. In effect, it's rendered harmless by being made meaningless.

  So autism is (by the serious scientists) permitted as pathology, or (by the liberal progressives) dismissed as personality.

  Wherever the implications of denying autistic people a distinct profile become too evident, any difficulty is handed straight back to the medical model as straightfoward 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 very neatly.

  What gets strenuously resisted, on all 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.

• Negative and positive labels

  I’d like to zoom out for a moment and place this within a wider context. This may seem like a detour, but I promise it will bring us back to the topic at hand.

  In society, we have lots of labels for people. You might be an engineer. A teacher. A doctor. A student.

  Categories like these give you a place in the world. They also tell others where you fit in. They'll let you walk into workplaces and universities and schools and institutions, and you'll be seen as someone with a right to be there.

  Those are all seen as positive labels. Respectable ones. Labels that open doors rather than closing them in your face.⁷

  But there are other categories that do the opposite. Addict. Murderer. Criminal. Madwoman. Bad mother. Unstable.

  And these labels don’t just describe something about a person. They swallow the person whole! Your membership in society is no longer secure. You’re being contained personally... and punished personally.⁸

  While the more privileged among us get to be separated off from what we fail at, what we damage, or what we can’t manage.

  There’s a big difference between saying, “He can't do fatherhood but he is essentially a nice, good man,” and, “She’s a bad mother.”⁹ We hear these ways of talking about people every day. We're so used to it, we don't even notice it happening.

  One person wakes in the morning relatively free: their shortcomings are like an annoying guest who, luckily, spends quite a lot of time in their room. The other person wakes with the ever-present burden of their shortcomings: they're more like a virus, inhabiting your whole body, and you're never free of it.

  One person gets separated from the failure. The other becomes the failure.

  

• Privilege and power

  In effect, if you’re among the more privileged, you get to compartmentalise the undesirable parts of yourself and set them to the side. You can even do terrible things and yet still be seen, overall, as a good, decent person.

  But for whoever has lower status in a given situation, there's no neat little box where the unacceptable part can be put away. There’s no generous social machinery rushing in to say, “Well, yes, this part is difficult, but essentially she’s good.”

  And if you rebel against the system and its illogic, you may be castigated with more negative labels.

  You're an unstable person.
  A selfish person.
  An ungrateful person.

• Having autism

  Case in point: autism.

  If you aren't allowed the label of autism, but are autistic, the labels applied to you will be much worse. And they won't be something you have. It will be something you are.¹⁰

  Lazy, hopeless, a weirdo, a freak. A loser.

  People choosing to call themselves ‘autistic’ – suggesting it’s a permanent feature of their identity – is a practice strongly resisted by tradition.

  The phrase, ‘person with autism’ is favoured, notwithstanding neurodivergent people's own preferences. Like this, the autism (unlike the laziness or freakishness) can live in the guest room. While the better, more acceptable self gets to live relatively freely.

  Viewed like this, I see how autistic people might be imagined to be happy and grateful to be given such an advantage. And why it’s confusing that we don’t jump at it.

  This could also help explain why, between neurodivergent people and the world at large, there's some friction when it comes to power dynamics. Around neurodivergence, our culture's usual blame-detectors are picking up some bewildering interference.¹¹

  Of course the terms can, and do, get misused sometimes. A bit like a peaceful protest that pulls in opportunists – and what gets in the headlines is the shop windows they broke, not the thing being protested.

  The headlines can then be used to discredit the whole operation, even though the two things are no more connected than in other swathes of the population.

  Someone online put it beautifully. The gist of it was: “Being autistic and being an asshole are not mutually exclusive situations. Neither are having cheese-breath and being an asshole. Whatever. If I'm an asshole, that's on me.”

  Truth is, in a world that's made of weapons, it's quite hard to pick anything up and maintain, “This isn't a weapon.”

• Identity

  So what happens if you say, “Autism is part of me, part of who I am – and without it, I wouldn't be me”?

  It's a statement that, as far as you're concerned, autism's there to stay, and that's okay. You'd rather not keep it hidden away shamefully until – with any luck and a few more billions of research money – you can one day evict it for good.

  But (society gasps, horrified), why would anyone identify with a label that granted them the right to live separately from their sins? And instead take it as their way-of-being, rolled up into themselves?

  To them, that's like willingly drinking a cupful of virus – when you could have had just a slightly annoying house guest.

  This attitude would also – in society’s view – show a shocking level of ingratitude.

  All this may help explain autistic people's consternation when they tell you they're autistic and you reply expansively, “Oh, but who needs labels anyway?”

  All you have to do is imagine saying to someone (for example), “I'm Syrian,” and them answering, “Oh, but who needs labels anyway?” You might feel it was a bit of a conversation stopper.

• Social control

  To go back to the question at the start of this piece, of why society's so attached to the ‘entrenched’ or ‘toothless’ ways of dealing with autism.

  This stance of, “It's you or your autism, babe... you can't keep both!”

  What if this insistence on autism being ‘negative or nothing’ has never been about objectivity, or anything intrinsic to the condition itself? And has, all along, been more about maintaining larger systems of social control?

  It seems to me that autistic people, even just by existing (in ways our bodies and minds leave us no choice but to exist), may challenge our current social structure on some quite deep level.

  The next article, autism and social control, explores how autism is contained in policy and practice, and how autistic resistance – including the determination to legitimately exist – fits into wider systems of power within society.

Images reprinted in this article with permission from the photographers as follows:

1. Light refraction in the staircase, Panda Mery, web site https://gizmonaut.net
2. w.e., by sprcubi

Footnotes

1. The DSM’s diagnostic criteria for autism are organised around persistent ‘deficits’ in social communication and interaction, restricted and repetitive behaviours, and clinically significant impairment. This is not a neutral description of autistic life as a whole, but a clinical framework for diagnosis.

2. Chris Bonnello’s 2022 ‘Autistic Not Weird’ survey found that, among autistic respondents, fewer than 10% wanted a cure for their autism, while over 80% did not. The survey is not a formal academic paper, and Bonnello does not present it as perfectly representative of all autistic people, but it does record the views of thousands of autistic respondents speaking about themselves.

3. The term ‘billions’ is used here as a conservative estimate rather than as a precise audited global figure. It is based on major reported funding streams, including over $5.2 billion in US federal autism research and training programmes since 2007, more than $725 million in external autism research support from the Simons Foundation since 2003, and €113 million through AIMS-2-TRIALS. The estimate includes funding streams explicitly connected to autism biomarkers, biology, diagnosis, treatments, interventions, medicines, and clinical trials. This framing is supported by analysis of US federal autism research funding from 2017 to 2019, which found that biology and treatments/interventions received by far the largest share of funding.

4. De Martino et al. (2008) found that autistic participants were less swayed by framing effects and made more consistent decisions across equivalent choices; Greenberg et al. (2024) also found stronger emphasis on fairness/justice among autistic participants.

5. A large UK study gives the median age of autism diagnosis as 55 months.

6. Naoki Higashida’s ‘The Reason I Jump’, written when he was thirteen, is a first-person account of autistic experience. Its force lies in the fact that Higashida writes from inside autism, not about it from the outside, presenting autism as part of his way of being in the world rather than as a removable defect.

7. Becker’s ‘labelling’ theory argues that deviance isn't inherent in a person or act, but produced through social reaction. The label can then shape a person’s status, identity and treatment.

8. Erving Goffman’s work on ‘spoiled identity’ talks about how some negative social categories don't just describe something about a person, but discredit them completely, and threaten their whole reality.

9. This refers to the good mother / bad mother dichotomy, in which mothers are often judged more totally and morally than fathers for perceived parenting failures (Hays, 1996; Pedersen, 2016).

10. The ‘brain or blame’ dilemma refers to the idea that people’s difficulties are often treated either as proof that there is something wrong with their brain, or as evidence that they are personally to blame. In that bind, diagnosis can protect people from harsher moral labels — but only by moving them into another, medicalised category (Boyle, 2013).

11. Link and Phelan’s stigma framework shows how labelling, stereotyping, separation, status evaluation, and discrimination occur within a power situation. Many autistic people find unspoken status signalling and social hierarchies confusing, and tend to prefer more egalitarian relationships. All this may help explain some of the ‘interference patterns’ around blame, status and neurodivergence (Caldwell-Harris and Schwartz, 2023; Caldwell-Harris et al., 2024).