“You Don’t Seem Autistic”: unpacking diagnostic criteria
“You don’t seem autistic” is the phrase that follows most “high functioning” autistic people everywhere. If you know me, you’ve almost definitely thought it. It’s something I internalised for quite a long time; I used to describe myself as “slightly” autistic, assuming I was at the low end of a linear spectrum. When I had my official diagnostic assessment both my mum & I were absolutely astonished when I scored a whopping 46/50 — unusually high even in autistic terms, with 32 being the widely accepted threshold for diagnoses & most women coming in around the 26–31 mark. Contrary to my previous beliefs, I am extremely autistic, I am Queen of the autistics, I am the most autistic of them all.
So, what does “you don’t seem autistic” actually mean, if even high-ranking super-autistics like me are getting it thrown at us? It’s true that our cultural assumptions of autism are based on straight white nerdy guys, and it’s true that many people (especially young women) engage in complex camouflaging behaviours to conceal their autistic traits. But what I’ve realised is that I don’t actually do much camouflaging at all; when you actually look at the diagnostic criteria, I very obviously seem Autistic As Fuck. “You don’t seem autistic” actually just means “I literally do not know what autism is, but I have read The Curious Incident of the Dog in the Night Time & you’re not much like that guy.”
This affects people who want to get diagnoses too — I have had many people contact me describing how extremely autistic they are, but then questioning themselves because their uncle reckons they “don’t look autistic” or something. So I’ve taken the Adult Asperger Assessment (AAA), the criteria I was diagnosed with & what I think is currently the most nuanced & reflective diagnostic list, and explained how these traits actually tend to manifest and how they differ from “normal” versions of these behaviours or other disorders. The traits are grouped in 4 categories; A. Social, B. Obsessions, C. Communication and D. Imagination. Lots of the traits in isolation can be personal quirks or attributed to another disorder or even a mental illness; to get an an autism diagnosis you need to exhibit traits across all these four categories, and crucially the traits need to be possible to track to very early childhood and remain in some form throughout your entire lifetime. One crucial aspect of autistic spectrum disorders that’s missing from the AAA is sensory processing issues, which are explained well here.
“(A) Marked impairment in the use of multiple nonverbal behaviours such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction”: This is probably one of the most distinctive & important features of Asperger’s, but contrary to stereotype it’s also one of the ones you’re least likely to notice. Every human interaction is laced with thousands of implicit non-verbal signals which help us assess the tone, humour and importance of the information we’re being given as well as the intimacy, status and dynamics of our relationships with the other speakers. Most of us leave encounters every day with a sophisticated impression which would make no sense if the interaction was just listed verbally on paper — these impressions are an example of non-verbal behaviours at work. It’s why lots of people feel uncomfortable speaking on the telephone. Most people don’t even realise they’re engaging in these behaviours, or that their brains are constantly interpreting other people’s in the background. It’s a process which happens automatically. For whatever reason, autistic people’s brains do not process this information automatically. This doesn’t mean we don’t interpret or create non-verbal signals, though; most autistic people notice early on that these behaviours are happening & make an effort to replicate & translate them. This difference defines most Asperger’s traits; the external outcome is nearly the same, but the cognition behind them is vastly different. It’s like making a meal from scratch instead of just ordering a takeaway; you’re consciously thinking about every component & piecing them together manually to create the final product instead of it just being there. When we’re doing this well, it means we can create extremely sophisticated impressions of people because we’re thinking about our interactions so carefully — I frequently get very strong “bad vibes” off people which turn out to be very correct based off how carefully I am thinking about their subtle social signals and matching them to similar people I’ve met in the past. However, the fact it’s a deliberate cognitive process rather than an automatic response means it’s very easily affected by how my brain’s doing; when I’m tired I often start completely failing to pick up on sarcasm or very basic jokes, and when I’m drunk I become incredibly undiscerning about people & their motives. So, to recap; being autistic doesn’t necessarily mean you suck at non-verbal behaviours (though lots of us do, and almost all of us get it wrong a lot) it just means you spend a huge amount of mental energy consciously and carefully thinking about them. The cognitive processes are what differentiates it from things like social anxiety; whilst the latter may result in excessive neuroses & worry about how your gestures will be interpreted, or obsessively re-living the gestures of others, autistic people’s problem is with creating or noticing the gestures in the first place (though this unsurprisingly leads most of us to develop social anxiety alongside it!)
“ (A) Failure to develop peer relationships appropriate to the developmental level; No interest in pleasing others; no interest in communicating his/her experience to others, including:- lack of spontaneous seeking to share enjoyment, interest or achievements with other people; lack of showing, bringing or pointing out objects of interest”: Humans are fundamentally social creatures. It’s how we survive & without huge amounts of interaction & good social relationships, we die earlier, become more vulnerable to health issues & feel unhappy. Many proverbs gravitate around the idea that emotions or experiences are less meaningful if they are not shared, and for most people this is true. This is why the asocial aspect of autism was pretty much the first symptom to be noticed and defined it for decades. What this doesn’t mean; autistic people don’t have friends, seek external validation or enjoy social interaction — we mostly do! What it does mean; social interaction, which is re-energising for most people, is almost always draining & tiring rather than relaxing even if we enjoy it; we often seek out solitude when we’re struggling rather than company; our inner lives are very rich and we’re happy in our own head for extended periods of time without needing to share it. How does this differ from just being introverted or shy? For autistic people it’s not really about how much we enjoy being around people or prefer being alone, which varies, it’s about the fact that the former actively depletes our mental energy, and that we don’t feel an instinctive need to share experiences or emotions.
“(A) Lack of social or emotional reciprocity (e.g. not knowing how to comfort someone; and/or lack of empathy) Difficulties in understanding social situations and other people’s thoughts and feelings”: Ah yes, “lack of empathy;” the most frequently cited and yet most poorly understood feature of autistic spectrum disorders. I’ve explained the source of this misconception before in an article here: “Empathy is not just one single character trait, but a composition of two different processes. The first kind, cognitive empathy, is about being able to understand and relate to another person’s mental state; the second, affective or emotional empathy, is whether we actually care about the other person’s distress and are driven to respond. Whilst Asperger’s is associated with difficulties in cognitive empathy, affective empathy is generally intact.” To summarise; we do care about other people’s feelings, we just sometimes don’t notice because of difficulties with implicit signals or don’t know what to do to comfort them. Like with the first point, though, this trait doesn’t manifest as simply as this. Most autistic people are very aware of their cognitive empathy deficit and work very hard to compensate for it; I am constantly actively looking for signs people may be unhappy and as a result often pick up on it before neurotypical people do.
“(B) Encompassing pre-occupation with one or more stereotyped and restricted patterns of interest that is abnormal in either intensity or focus; Persistent pre-occupation with parts of objects/systems”: The last part of this sentence is the most important. Special interests aren’t about being interested in a particularly “autistic” topic (which are all stereotyped to the most commonly diagnosed group, nerdy white men) they’re about the intensity and focus the interest takes. You can have a neurotypical interest in maths or trains but an autistic special interest in One Direction. I’ve had special interests in topics as varied as sea life, Marina & the Diamonds, Pokemon, feminism, the Adrian Mole diaries, and sociological studies of teenage girls. You can also exhibit special-interest level obsession & fixation on a small, short term scale (listening exclusively to the same song for a week straight) or on a large, long term scale (becoming obsessively fixated on a relationship or person). What differentiates special interests from intense hobbies? They often involve an focus on information collection or categorisation (I didn’t just listen to Marina & the Diamonds all the time, I’d manually copy down all the lyrics and sort them into categories of themes & analyse them intensely). They involve an abnormal amount of repetition & an inability to become bored with the subject matter and often become intrusive in nature, making it difficult to focus on anything else or stop talking about the topic even if you can tell others around you are bored or making fun.
“(B) Apparently inflexible adherence to specific, nonfunctional routines or rituals”: Another one which sounds obvious but often isn’t as readily noticeable as you’d think. We all use routines every day without thinking about it; most people have a morning and evening routine which rarely varies, children living between two houses prefer spending set days of the week at each one. The desire for routine manifests culturally everywhere; Sunday roasts, rituals and service orders in religion, table manners and set courses for meals. Calling autistic routines “non-functional” is as ridiculous as calling these routines non-functional; they serve the function of helping us make sense & order out of a chaotic and seemingly meaningless world. Autistic routines are possibly more extreme than these cultural norms because the world is particularly chaotic and confusing for us. Our lives are usually riddled with hundreds of tiny routines which can be undetectable to the observer; ordering the same drink at bars or meal at chain restaurants, listening to the same songs while we get ready every day, going to the same coffee shop on the way to lectures. What differentiates an autistic routine from the normal human gravitation towards ritual and sameness is our reaction to the routine being broken; it’s normal for neurotypical people to feel annoyance or slight discomfort but autistic people can feel upset and distressed all day, experience a negative effect in their ability to go about their day normally, or even tip into a meltdown. A neurotypical person might be happy to have their week night routine disrupted by being invited out for a spontaneous dinner with friends; an autistic person would prefer to stick to their planned routine, even if they actually enjoy going out for meals with their friends more and would usually prefer it. I wrote more on routines here.
“(B) Stereotyped and repetitive motor mannerisms (e.g. hand or finger flapping or twisting, or complex whole body movements)”: This is more informally called stimming, self soothing or grounding physical behaviours which autistic people engage in especially when feeling stressed or overwhelmed with information. In children or more stereotypical adults these involve “flapping;” the twisty hand movements most people associate with autism, or rocking backwards and forwards. These usually attract teasing, punishment from parents or other unwanted attention and many teenagers convert them into less “weird” movements when they hit puberty — I bite and pick my cuticles, jiggle my legs or scroll through my phone, but will often revert back to flapping or rocking when in private. When angry, overwhelmed or very upset these physical compulsions can become self-injurious, involving biting or hitting yourself. What differentiates these symptoms from fidgeting, or physical movements associated with activity disorders like ADHD? ADHD is a cousin of autism, so it’s actually likely stims are neurologically related. Distinctive features of stims compared to fidgeting include that they increase with overstimulation rather than boredom, are compulsive and extremely hard to train out of, and are even worth doing when they’re really painful.
“(B) Tendency to think of issues as being black and white (e.g. in politics or morality) rather than considering multiple perspectives in a flexible way”: Again, this isn’t necessarily obvious. Black and white thinking isn’t about simplicity; autistic people are perfectly capable of (and often better at) thinking in a really nuanced way. However, this thinking usually operates within a particular theory, moral code or set of ethics; lots of autistic people are very attracted towards specific political ideologies as a result of this, from libertarianism to Marxism to intersectional feminism. Autistic people are entirely capable of taking multiple perspectives into account and thinking in a sophisticated way about issues but will often struggle with ideological hypocrisy; neurotypical people may call this “inflexible” or “black and white thinking” but it often makes us fair and deeply moral with a very strong sense of social justice. We’re great with nuance but bad with inconsistency. I generally think of this as a positive trait but it does have downsides. It can make us quite vulnerable to toxic ideologies if we latch onto the wrong set of ethics; there’s no wonder the alt-right holds a strong allure for (straight, white, male) autistics with it’s very absolute morals and consistent if highly flawed worldview. It can also make us find it very hard to forgive people who do things which are “wrong” in our eyes, which can be a positive trait (neurotypicals, in my view, are far too quick to forgive known abusers or people with views which are extremely dangerous and harmful in favour of social cohesion) but also causes constant obstacles in our social lives and leads us to be very upset and confused when people get angry at us for disrupting the social order over something we feel is really important.
“(C ) Tendency to turn any conversation back on to self or own topic of interest; Marked impairment in ability to initiate or sustain a conversation with others; Pedantic style of speaking, or inclusion or too little or too much detail; Inability to recognise when the listener is interested or bored. Even if the person has been told not to talk about their particular obsessive topic for too long, this difficulty may be evident if other topics arise; Frequent tendency to say things without considering to emotional impact on the listener”: These are all separate categories in the AAA but I’ll lump them together because they can be explained in the same way. These are not particularly reliable symptoms in themselves but manifestations of our atypical communication style & difficulties reading other people mostly described in the first part of this article. They can all be broadly lumped together under the same label I used there of “things autistic people feel a strong urge to do and might do if we lived in a social vacuum, but frequently learn to adapt, either by consciously being hyper-aware of our tendency towards this trait or subconsciously by copying neurotypical people to the point where it feels almost natural.” Another thing I’d like to add is that these are all reflective of a level of self-absorption which all humans have to some degree, and the fact neurotypical people are less likely to do them isn’t because they’re nicer or more empathic but just because they’re more tuned in to social niceties and concerned about disrupting the social order. Neurotypical people do these things all the time in situations where they can get away with it such as when there’s a power imbalance or anonymity. Look at how men drone on to women they’re trying to chat up with no regard for their victim’s interest levels or how a wealthy high status businessman may come across as the height of empathy & politeness to his co-workers or superiors but talk to his secretary like shit. The difference with autistic people is our social faux-pas, blunt honesty or self-absorption is less likely to be adaptive to our social setting.
“(C ) Cannot see the point of superficial social contact, niceties, or passing time with others, unless there is a clear discussion point/debate or activity”: A theme you’ve hopefully noticed is that autism is often normal human behaviours extended to their extreme; I find my way of thinking is less “abnormal” and more “hyper-normal.” It’s based in rationality, rule and ritual; sometimes pushed to extremes that ironically appear irrational until closer inspection. This trait is one of those examples; all it really means is that we are intensely pattern and purpose-driven and often won’t do things unless we can “see the point” in them. When I understand rules I am very well behaved, but getting me to do something when I don’t understand why is virtually impossible. I was recently astonished to be told that my emails are “very rude;” they are polite but short and to the point and I immediately ask for the thing I want rather than couching them in small talk or social niceties. I also won’t usually message my friends unless I have a specific topic of conversation or am arranging to meet up, which can cause quite a lot of difficulties. It’s another example of autistic people appearing “rude” as a result of neurotypical social quirks & norms rather than our behaviour actually being negative. I find it uncomfortable and disorientating when people start an entire conversation with me and it becomes apparent it was just to ask me for one thing, so I consider it respectful & polite to be short and direct; I don’t particularly like having my alone time interrupted by messages if they’re not about something in particular, so extend the same courtesy to my friends by keeping anything I’d like to share with them for when they’ve arranged to see me next or when they’ve already initiated a conversation with me (I’ve noticed a strong correlation between autism & social media use; I find updating Twitter and Facebook a great middle ground between remaining accessible and engaged with my friends and respecting their boundaries)
(D) Lack of varied, spontaneous make believe play appropriate to developmental level; Inability to tell, write or generate spontaneous, unscripted or unplagiarised fiction; Either lack of interest in fiction (written, or drama) appropriate to developmental level or interest in fiction is limited to its possible basis in fact (e.g science fiction, history, technical aspects of film): This part of the criteria has come under fire & I imagine it will be rephrased before long. It’s true that some autistic people are completely uninterested in fiction, but it’s becoming increasingly apparent as our understandings of special interests & autistic communities grows that a “lack of interest in fiction” or lack of imagination could not be less applicable to many of us. Stories and fantasy worlds have been the weird kid’s escape from reality since time immemorial, and autistic people need that escape more than anyone. Additionally, franchises such as Harry Potter, Star Wars, Doctor Who, Lord of the Rings or various anime offer incredibly elaborate and immersive universes catered perfectly to special interests and packed with (almost) equally enthusiastic and obsessive fans. I love fiction; I think of this trait less as being about my enthusiasm for certain media but how I consume it. Like many autistic people, I do really struggle with poetry, modern art or forms of narrative which are overly metaphorical or abstract (possibly what initially prompted researchers to assume the problem was with fiction and creativity per se) and much of my enthusiasm for stories is based on the information about a time period, fantasy universe or culture I can get from them. Tolkein was certainly autistic; his stories about Middle Earth are a small part of what was essentially a worldbuilding project, meticulous in its detail, writing entire languages and mythologies from scratch. His world is a prime example of autistic creativity and the richness of autistic imagination. Similarly when I was a child one of my preferred methods of make-believe “playing” was drawing incredibly detailed maps for made-up worlds or meticulous diagrams of the fantastical beasts which roamed it. I’d struggle to run around pretending to be a princess from that world, but I’d strongly contest the suggestion that my method lacked “imagination.”
The first rule to know about autistic people is that we are exactly as diverse and varied as neurotypical people. There as many variations on exactly how autistic traits manifest as there are autistic people. Because it affects the whole brain, asking me to write an article on the behaviour of every single autistic person is as ridiculous as me asking someone else to write a single article explaining the behaviour of single non-autistic person. Nonetheless, I hope this explanation of the primary diagnostic criteria and how they can manifest less obviously than you may expect offers a little insight into a poorly understood diagnosis, whether you’re a neurotypical person confused about what autism actually means or whether you’re looking for a diagnosis yourself but aren’t sure how these impersonal traits relate to your life.
So, please stop telling me I don’t seem autistic, because I really, really do.