Yesterday I was secretly intending to comment on my current reading of Steve Silberman’s Neurotribes (an ultra-short summary is in his TED talk, which motivated me to read the book finally). Maybe I can get to it in a round-about way.
Ever since a bunch of friends half-convinced me that I can obviously classify myself as being on the autism spectrum, and I started reading up on the topic, the topic has been consistently annoying me. The more I read about it, the more I could see that half of the family is obviously on the spectrum, some members maybe even more obviously than me (like all the stuttering engineer-musicians in my father’s branch of the tree). Etc. Etc. But what I couldn’t get was 1) what “autism” actually is – in its essence, as a “thing” apart from ticking off boxes on long, disparate, sometimes fairly random-seeming lists of potential “signs” 2) kind of relatedly, what’s the point of calling an extremely variable and disparate collection of traits with one (pathologising) label – which still doesn’t tell you what it is much less what to do with it in life (or otherwise)?
I think most people I tried to ask this didn’t get my question – as if “it’s a neurological difference” or “it’s a social and perceptual disability” answered anything. For my kind of analytic mind, I think the answer has to be much clearer, and if there is no clearer answer, maybe the category is defined a bit at random (which is actually the case for many psychiatric categories – summary of a recent study on this issue). Like, I can make a category including apples, raisins, computers and socks and call it GLEBFL – but what for? Tells you nothing about how to deal with the category members.
Anyways, given how many people didn’t get my question, I was relieved that at least some statisticians (study above) got it regarding psychiatric diagnoses on the whole, and I was relieved to read Silberman’s historical anthology of autism research, or of the concept of autism itself, because heck – it’s much clearer than anything else I’ve found. In tracing back how people have come up with the medical term, it also kind of explains why the term is unclear. It describes how it was constructed based on both observations and on various peoples’ (researchers and others) ego power games and career stakes – overall refreshing perspective on history of research (I don’t exactly say “science” because up to the point I’ve read to, only part of this was scientific – it’s more people squabbling over how to categorise other people).
So what’s the root of the concept of autism? I won’t summarise the volumes of content here, but for me the core insight was that the concept was born when a group of child psychiatrists (in the 1930’s in Vienna) saw probably thousands of children in their clinic and got the impression that some children were “different” in a way that was similar to the way some other children were “different”. That’s pretty much it – at first an intuitive grouping of some “funny” children, looking for commonalities, describing the commonalities, then noticing that their parents or other family members also sometimes had some of those – noticing that the “funniness” comes in different intensities, and also seems to have a number of sub-types or “prototypes”. That’s my understanding of how Silberman describes the emergence of a concept of autism at the clinic where Asperger did his work: a kind of observational pattern-recognition by (according to Silberman’s account) sensitive and attentive observers.
Silberman also discusses at length how this “pattern” – a cluster of children that seemed strange in a similar way – had been previously (and later) described using different terminology (“child schizophrenia” or such) and how various competing groupings, definitions, and interpretations of what this is emerged and were subject to historical and political vicissitudes as well as various researcher’s ego and career games (regarding Kanner and others).
I should maybe note that so far I’ve read about half of the book (taking a break as I’m clearly popping too many inappropriate Nazi euthanasia jokes under its influence; if the line-up of veggies going sequentially into the pan makes me joke about the queues to the gas chambers, I probably need a break from Silberman’s flourishes of historical detail). [#warning: Might in general note that if you’re about to read this, it contains quite a lot of graphic sadism and suffering.]
In any case, why did these points make me happy? Because they tell me that hey, the definition and essence of autism never struck anyone square into the face, and it’s [probably] actually not scientifically well-defined at all. It’s a matter of observing a vague family resemblance, then squabbling over whom to include and whom to exclude, and also endless (to this day?) squabbling about what this actually is. So if the common definitions strike my scientific side as incoherent and arbitrary, well – that’s cause they are. Cause it’s a historically evolving concept that hasn’t been grounded in a satisfactory way neither theoretically nor (probably) empirically (the fact it’s listed in some psychiatric manual doesn’t guarantee that at all). It hasn’t moved that much beyond Asperger’s observations – that there’s a bunch of funny kids who are funny in a similar way somehow. From the outside, one can describe some more or less common traits – but that’s it.
I don’t know if Silberman will go down that road in the rest of the book, but so far he also seems sympathetic to the view that this whole autism thing is more about understanding and accommodating various (even very variant) individuals with their quirks (and specific observable “families” of quirks) than about finding the one disease unit (or disability unit), cause, cure, etc. There might not be a particular “unifying” “thing” at all beyond a kind of family resemblance that’s partly in the eye of the beholder. There might be a dozen or many dozen “types” of quirky personality that share little beyond being weird enough. A thing I’ve also frequently asked myself was if the commonalities across the spectrum are actually the product of having been so weird as to have grown up disconnected / isolated.
In my family the spectrum has more evidently manifested more on the side of “giftedness” than on the side of disability, although if I look at it closely – that might be because so much weight is given to academic “achievement”. Sure the younger and older folks in the spectrummy side of my family have very massive life challenges outside of having basically been born engineers or musicians or artists.
That’s why I wasn’t especially inclined to see the “disability” side of it, and frankly the best thing that studying stuff around autism in various ways has done for me is to make me aware of disability – what it actually is, how it’s treated in society, what I actually think and feel around it. How little I knew about it, that I was actually to some degree scared of visibly disabled people, etc. That “ableism” is a thing, that it’s completely possible to see disability just as a way to be and take the negative connotations, valuations off it.
Having again a hard time coming to the point – point just being, it’s not my defect that I can’t see or find a coherent and theoretically elegant definition of autism. Researchers throughout the century didn’t, stuff was defined and re-defined, people were included and excluded, and overall a large part of this whole story is historical and social negotiation.
This doesn’t mean I don’t think autism is real or “a thing” – I actually think the term now describes a bundle of human styles, some of which are kind of literally recognisable at first sight. I feel a bit more justified in my impression that it’s not “a thing” in the sense of a monolithic, unitary entity – the same way that there’s no single gene for it, I wonder if it’s something like “musicality” (i.e., something that is pretty multifaceted and can also be come to be via many different pathways).
… Ok, interruptions, and it takes really long to come to “the point” – to something non-obvious and to something that goes beyond re-chewing the book. I think a lot of the half-baked stuff above is either obvious or can be misunderstood. I think my question at this point is what I myself make of the concept of autism – what’s the similarity in the weirdnesses? If there is a consistent one at all.
So here comes the part with unbridled and inconsistent speculation, but maybe less boring. The more I get into the topic, the more I think that “autism” is really the most massive misnomer ever, because really few of the autistic folks I’ve been in touch with (all speaking and somehow surviving more or less independently though, if you count shnorring as a way of life) are “self-focussed” (the “auto” in autism) to any degree. In fact, I’d say they’re all extremely focussed on stuff that interests them, and typically really not focussed on their self-image. The ones who happen to have psychology as a temporary or permanent special interest can be “self-focussed” in the sense of using themselves as their primary subject of observation – that’s, I’d argue, cause that’s usually the most available and proximate psychological subject. We dissect other folks with the same passion when available.
In fact, if I could, I would somehow invert the name – from one that suggests self-focus to something that suggests being really extremely, intensely captured by [some selected aspect of] the world. So much so, in fact, that the “autistic” person often neglects to pay attention to their “self” in the sense of their body, bodily functions, and sometimes emotions.
Intuitively, it’s kind of like stuff speaks to these folks – it’s different “stuff” for each one. Shapes and fields of force speak to one friend. Code speaks to others. Systems and devices, visual patterns, auditory patterns. Then there is the family of folks to whom … nature speaks; the one who knew the various specifications concerning about 1500 species of Polish flora by heart, but also the folks (myself included here) who respond to trees, blades of grass and pebbles as individual beings with an individual emanation (I didn’t know this isn’t standard). The energy-sensitives (whatever it actually is that speaks to them). The nutty ones who border a bit on the psychic – heck, something speaks to those, too. The ethereal ones.
Both when I think of Autscape and when I flicker across my mind all the folks I’ve known who according to my autdar are clearly on the spectrum, my intuitive reading of these people is, I think, that “something” speaks to them, speaks to each. Radios, crystals, animals, minerals, piano keys, water, fossils … in some cases ideas, discourse, signs and scripts.
I wonder if that’s my “inverse” of the standard diagnostic criterion on “communication difficulties” – I guess clear enough for people who don’t speak or speak in repurposed phrases (but hey, we all speak in repurposed words), this never satisfied me (why? how specifically?).
Some people are cut out to speak with things, beings, phenomena – and speak their native language (not just those who “think in pictures”, but the whole range of “synaesthesias”). This might also be a more elegant description of the “sensory differences” thing – linking it together. Because how to do speak with plants? How do you speak with light? Your senses must be attuned, probably.
Admittedly I’m influenced here by having read work by indigenous authors who describe a cosmology in which communication (and consciousness, intelligence, etc.) isn’t at all restricted to the human realm – the many traditional cosmologies in which minerals, plants and obviously animals, and also spirits are fair targets for communicating with (and also actively communicate with humans). In some traditions there are always a few weird folks in the tribe who live isolated in caves and talk to the creatures there, doing their business with the spirit or plant realms, or such. I wonder if such cosmologies are far more accommodating of neurodiversity, or if most of them weren’t / aren’t – no data on that.
But the concept seems a natural fit – broaden communication to include more than humans (as was common throughout most of human existence on earth), and some strange human ability profiles might make more sense. Widen the concept of what’s “animate” or what can be talked to, and what can talk to us. Is human-centrism, the extreme speciesism that’s mainstream today making some people unnecessarily harder to understand?
Obviously also a lot of human “potential” going to waste for that reason, in this world. Topic for a whole other post, watching this over and over. (Silberman’s book is obviously also full of dispiriting examples.)
I don’t want to have some sort of idealised view of autism. To “cure” that, it would be good if I could meet more people facing more barriers than the folks I typically know (who might be unemployed and burnt out etc., but typically not requiring a full-time assistant, not in danger of institutionalisation etc.). I wonder if that would let me stick to the view that the similarity in the weirdness is mostly about a communicative / empathic (and relatedly, sensory) “attunement” to selected non-human aspects of the world.
I feel like this way of looking at it also provides a good conceptualisation of the various “types” – people are unique, but I still feel there are some “prototypes” in the autistic pool. Take the computer nerd, the naturalist / animal communicator, those obsessed with colour or shape or sound, the energy-sensitive “empath” (seems to be a type, too).
According to Silberman’s account, that’s pretty close to the initial approach in Lazar’s clinic, where Asperger worked (whether he was a Nazi or not – the original thinking strikes me as somehow sound and practical, and it’s weird that it was also one of the earliest “thinkings”).
The whole autism and disability reflection, from my fairly privileged position (I guess being autistic and not knowing what’s up and how to care for self cost me 1-2 decades of mental health, but I’m living sort of Ok now because various people “rescued” me on the way), made me think a lot about basic human worth; basic point of life, basic point of human existence.
In my youth I was more the “wunderkind” type, I had significant social and emotional issues (being an immigrant and queer on top), but nobody cared – suspect nobody saw that someone with my IQ could have issues at all that they can’t just figure out themselves. Must be ill-will or egotism or … whatever character flaw.
So studying the autism thing and seeing that it fits made me look at this “underbelly” of my life more, the stuff that somehow obstinately never worked (like, stable circle of friends; stable job; stable living situation; the fact it took me 10-15 years to half-master some routine practical life tasks, etc.; ah, and I forgot about the whole PTSD/borderline-looking mental health disaster “without reason” that was constantly on until a few years ago; haha amazing I’m actually capable of forgetting about this detail :D). It made me grapple with the idea that I also constitutionally suck at some stuff – just nobody pointed that out because it was inconceivable that I actually can’t do it (or don’t realise I should), rather than just “feeling it’s beneath me” or whatever other interpretation people made up. Stuff like follow a conversation with more than 1 other person, or perhaps 2-3 if I know them well. Stuff like follow movie plots without confusing the actors 😀 I still felt / probably feel that using the term “disability” in this context is a bit over the top, compared to struggles other people have.
But also thinking back of my childhood and of my “self” before it got too covered-up with conformism (and trauma) and trained out of its original preferences, stuff spoke to me intensely – stuff like the minuscule patterns on leaves, fractal sticks, patterns on and shapes of stones, seashells, insects, patterns of light, landscapes / whole collectives of plants (these would more scream at me with a multitude of voices that gave me a mystical or psychedelic high or whatever you choose to call it). I could have easily focus on those for long, and I sort of did when possible (I think until school). Then it became forbidden and “weird” (a sense of taboo) to just look at things “this way” – to contemplate and communicate with my chosen non-human aspects of the world.
I wasn’t alone – I never felt alone when doing that. I was in constant communication.
Obviously sensory overload, a harsh environment, mechanical schedule, stress and distraction, and numbing / disconnecting trauma kills this.
That’s what I usually “saw” when I met kids who were regarded as “more” autistic though (children of acquaintances). I couldn’t always tell what was speaking to each – the easiest to see is when they catch the same “frequency” as I do (frankly this sometimes felt creepily telepathic). The girl who scanned each cubic micrometer of my “aura” (or whatever you want to call this) in detail while sitting a meter away and looking another direction. Her mother said shy animals spontaneously came out to climb up her hands.
The super-active boy obsessed with mobile devices and shopping malls I met some years ago I couldn’t read like that, I didn’t immediately see what speaks to him, but I wonder if that’s the question I should have asked myself then?
In how far is this metaphorical “gatekeeper” concept useful – some folks being situated at the gates between the human world and the non-human worlds (not recognised by our culture)?
A final thought I had on this is that this doesn’t have to be utilitarian at all. One can communicate with things without necessarily becoming a prodigious artist or a genius programmer – there doesn’t necessarily have to be socially recognised “output”. It’s still somehow an important way of being – or could be validated more easily by seeing what the non-human world is more broadly.
Still didn’t come to the main points on disability, but maybe this half-baked place is the verbal limit of today. I would be curious about any thoughts, I’m sure other people have come up with similar things? (The one thing trying to write a PhD taught me is that there’s always multiple people who already had the idea, even the most niche one.)