Autism: some good questions and some less good
So I think it’s worth addressing some of the ideas around autism: autism as a continuum (a linear spectrum) or not, some common things people say, and common issues and misunderstandings.
“Isn’t everyone a bit autistic?”
Sometimes when people say something that sounds like autism not being a continuum, they are responding to the phrase, “well we’re all on the spectrum somewhere” or “isn’t everyone a bit autistic?” The trouble with these statements is that it’s nonsensical, as even with definitions of things that are fuzzy around the edges (most things if you think about it!), the edges have to be *somewhere* for the sake of argument, even if it’s not a defined place. You can create a value gradient from black to white, but to say that it’s all a bit black or a bit white is probably unhelpful.
“We’re all on the spectrum somewhere…”
This gets much more complicated when you are dealing with numerous factors or traits that overlap and blend. Think about speciation, and the whole ‘lumpers and splitters’ issue. Are cockroaches basically just giant semi-social termites? How many species of giraffe are there really? What can we learn from saying that and what nuances do we miss? At what point does a square morph into a circle? At some point, you have to stop calling it one and maybe start considering calling it the other.
So, at what point does autism ‘stop’ and not-autism ‘begin’? Does neurotypicality also begin at that same point? (and what if there are other atypicalities present?) How can we even be sure where that point *roughly* is when there is so little agreement on what autism is?
I tend to take my starting point from the idea that autism is a thing in the context of common autistic experiences and connectedness, and work from there, rather than from the DSM or ICD definitions, which generally only really captures autistic behaviour (often distressed autistic behaviour) from the outside. The further a person is from being autistic, the fewer points of connection and commonality they will have with autistic experience (crucially, as described and experienced by autistic people), and the less meaningful it might be to call them autistic. For the sake of sanity and how words work, autism has to stop being autism *somewhere*! But you can see how that does tentatively open the door to the idea of a person being ‘a little autistic’.
“OMG they’re being sooo autistic.”
So, another phrase people get annoyed about is “I’m a bit autistic”, or “they’re a bit autistic”, and, as with OCD for example (“oh I’m so OCD today”), there can be very reasonable concerns about this kind of usage, given that it can be used to play down genuine experiences, play into stereotypes, and turn labels into slurs. Personally, I think “I’m a bit autistic” is only problematic if it diminishes autistic experience and is used off-handedly, or for example self-deprecatingly or insultingly in some way. People trying to relate themselves, often very tentatively, to parts of autistic experience, might also say “I wonder if I might be a bit autistic”. While I still think it’s a confusing and perhaps unhelpfully unspecific thing to say, I can understand it, and in the context of self-exploration it makes sense that a person might start off by thinking in that way.
“Could I be a bit autistic?”
It’s worth considering though, that there’s perhaps a subtle but important difference between someone being genuinely just ‘a bit autistic’ (further off the edge of the autism constellation), and someone being ‘more autistic’ than that, but not experiencing so many challenges at the moment. For a start, I suspect the latter person would relate to a greater number of autistic people. In other words, degree of connectedness with autistic experience doesn’t necessarily correlate with degree of challenges encountered with those experiences.
“But you don’t look autistic.”
It is also possible for people to talk about ‘a little’ or ‘very’ autistic in the context of how others perceive one’s autism. Some might say, “the very autistic person” and mean someone who is outwardly very obviously autistic in their behaviours (stimming, vocalisations, way of talking, for example). I might also say that when I’m under a lot of stress I might appear ‘more autistic’ – by which I mean that people see more obviously that I am different, and those differences might ‘look autistic’, because autistic distress does tend to look different, to a greater or lesser degree. I’m not sure where I stand with careless use of this kind of language, as it can reinforce stereotypes about autism being more ‘severe’ or ‘mild’ when actually it’s just others around the person experiencing it more severely or mildly, but language can be difficult and sloppy around the edges.
So, back to autism as a continuum. Another (really big and important) reason people reject the idea of autism as a continuum is because it presents the idea of a linear scale, usually from very severe or very mild, which is a problematic and complicated concept in itself, when we should really be thinking about autism more as a constellation of attributes, or at least a bunch of scales.
Autism is at the intersection of a load of different things happening, which may or may not have a common cause, but the combined effect is a chunk of the population who are autistic, because they are similar enough with each other on a bunch of common experiences and ways of perceiving the world. Some of these similarities might be innate, irrespective of life experiences, such as sensory differences and intense focus (though of course we don’t know that they’re innate!), and some might be as a result of how society treats autistic people, or people who are different more generally (depression, anxiety – clearly not innate to autism but extremely common), but most are probably a complicated mixture of the two (difficulty and differences in social interactions, difficulty reading neurotypical body language, having different assumptions/fewer assumptions).
What’s so compelling about Crompton and Fletcher-Watson’s diversity in social intelligence research, and other emerging research in that field, as well as accounts by many autistic people, is that it both strongly suggests a cognitive difference between autistic and non-autistic populations, but also that where the difference might look like deficits might have more to do with being in a neurological minority than something innately ‘wrong’ or ‘deficient’. If autistic people on average convey information to each other just as well as non-autistics, and experience strong rapport with other autistics, then the problem isn’t with not being able to do these things, but often having no one to do these things with.
“But you’re nothing like this other autistic person I know…”
Of course that’s not to say that all autistic people are completely alike and all fit in beautifully with each other. But that’s also not what those who are more neurotypical are like – but there are more opportunities to find one’s tribe when the majority of people around you at least have similar experiences and assumptions and modes of communicating with you.
I’m also very open to the possibility that within the autistic population, there may be many ‘sub-slices’ – people who identify with enough points on the constellation to definitely be meaningfully autistic, but not enough points in common with me personally for me to feel much in common with them or feel a connection. This is one of those weird things that it makes sense would arise when you look at population tendencies and trends, and then look at individuals. It’s totally possible for a population to be highly diverse, yet still contain clear patterns and tendencies.
“Are you sure you’re autistic and not just ‘x’?”
Sometimes we also talk about ‘autistic cousins’ or the ‘broader autism phenotype’, when referring either to seemingly heavily overlapping neurotypes, such as Tourettes, ADHD… or experiences that have significant overlap because they tick a large sub-group of boxes within autistic experience, but not a broad enough range of them, so things like sensory processing disorder, pathological demand avoidance… but also overlapping experiences without specific labels.
There are also some broad overlaps between experiences where I feel like, if we were talking taxonomy, the labels themselves might be ‘polyphyletic’ (as in, I wonder if they might be describing common symptoms but coming from multiple causes, which of course all of these labels could be), that also can describe subsets of a lot of autistic experience, but are overly specific for that to be obvious – so like with dyscalculia, dyspraxia, dyslexia... (an example might be that a person is diagnosed with dyslexia, but actually their main issues come from multi-channel processing and sensory issues that prevent them processing words easily, while another person struggles in the same way due to visual problems, and another perhaps from anxiety around reading making it harder for them to concentrate). If you look at the diagnostic criteria for these conditions, they require just difficulty in these areas from a certain age and for a sustained amount of time, plus that the difficulty not to be caused by any other condition (but it can be hard to be sure!).
I rather like ‘autistic cousins’ because it recognises the experience of overlapping traits and the general experience of being in the neurological minority, while also recognising significant differences. It’s pretty clear that a lot of our definitions around these neurological differences are rather messy though!
“Don’t let your autism define you.”
SO, given all this fuzziness, why do I think identifying as autistic can be important? (especially given that, speaking of labels, I don’t think gender is a thing (beyond a social construct) and have rejected that!) Well, because by and large, I do think that autism is a thing (much more than I think gender is!), in that it describes a neurological minority who are similar enough that it can help us find our tribe, reach better self-understanding, and potentially find places to belong. As I wrote earlier, autism is identifying with enough bits of the constellation of autistic experience (that is, experience that isn’t typical in general, but is autistically typical) that that identification becomes meaningful because it’s similar enough to significant numbers of others who also experience those things. This is where, I believe, the intuitive connection and belonging at least partly comes from.
“Your autism must be very mild.”
A note again about severity. Imagine a bunch of dials in this autistic constellation; they might read something like: visual sensitivity, deep focus, difficulty reading other people (let’s put aside that they are probably mostly non-autistic people and what it’s like not to have had a lot of practice with one’s own kind), unusual or focused interests, auditory sensitivity, etc, etc. Some people might have all their dials ramped right up to *super sensitive*, and that could be very disabling; some might have some of the dials right up and some down near zero, but that could still be disabling or not, depending; and some might have every dial around the middle, etc, with various effects. That’s one layer that can impact ‘severity’.
Now imagine that each dial also has a modifier that indicates how much the person has accommodations (by circumstance or intentional) for each of those differences, or how much the person has been stigmatised for that difference, or how much they’ve been helped to build their own coping strategies. Now you might have someone with all their dials at 11, but dealing with everything basically ok, vs someone who has their dials at 2 or 3, but really not ok at all.
This is why severity is so difficult and problematic, and we haven’t even gotten into how that can be further complicated by some people having additional learning difficulties or other disabilities on top of that, and how things might change over time!
My idea of an autistic person who is ‘fine’ (as in not in any distress at all), is that probably their ‘dials’ for all these different traits can be almost anywhere (possibly not all at 11, but who knows), but as long as they have an environment and sense of self-understanding and control that allows them to handle it, they might be ok, and it’s possible they might not even ‘appear’ all that obviously autistic (at least to people who know little about autism, and think of ‘looking autistic’ in terms of things like distress), not that it should matter if they did.
“But why would someone want an autism diagnosis if they’re basically doing okay?”
There are almost certainly lots of autistic people who are basically handling things ok for combinations reasons, so have not developed the significant signs of distress (or have gotten through them) that might mark them out by some as being ‘visibly autistic’, but still could benefit from the increased self-understanding, connection, and sense of belonging that realising there might be many other like-minds out there might bring. They might be alright but not very happy, or don’t feel like they are fully allowed to be themselves, or a crisis or change might cause intense difficulties without such understanding, or they might be isolated or feel cut-off from belonging and connections.
Obviously many people who know they’re autistic are very very unhappy and isolated and don’t feel a sense of belonging, but that’s partly why so many autistic people and good allies are working so hard to challenge pathologising and stigmatising framings of autism, damaging therapies, and trying to create more inclusive and welcoming autistic communities for people to access – and perhaps having more examples of autistic people doing fine for various reasons can help with that. Some people have been so hurt, that it can be really difficult to connect or trust even when they find like-minded others, but I don’t think that is likely to usually be because of anything innate to being autistic, but rather what has happened to them.
“What does being autistic feel like?”
So what does being autistic feel like? What does being anything that one just *is*, and makes one in common with some others in a way that’s not in our control, feel like? I don’t *feel* Chinese or British, or Scottish, really, but they are all part of who I am, and shape my identity and how I connect with others.
I don’t know what it’s like NOT to feel autistic: I don’t know what it’s like not to have intense interests, or to hear noise at the volume I hear it, or find busy colours and patterns swimmy and nauseating (or sometimes exciting and mesmerising), or to reach different conclusions and draw different links from the majority, or to feel disconnected and out of step from most of those around me, but intensely connected with a small minority. I have found meaning in realising that there are others who experience this too, who I seem more likely to not feel out of step with, and also better self-understanding in realising that the majority probably don’t experience these things in the same ways. Perhaps this is the best way to describe what being autistic feels like for me — a feeling of commonality over things I never thought I shared with anyone, and using that knowledge to make more sense of this baffling world around us.
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