My history with labels & autism = sensitivity + coping strategies?

At a point when I became more interested in autism as presented by the neurodiversity movement, for example the #ActuallyAutistic community, and started figuring out that my life experience fits many of the shared experiences quite paradigmatically, I started asking around friends about whether they think I could be on the autism spectrum.

I didn’t have that many friends, but two of them said yes (and a third one had pushed me to read about the autism spectrum in the first place). My ex, call her the Arab MD, said “ya, I wondered about it at the beginning, but then I thought it might be the fact you were partly raised in the West” (to an Arab-Polish mind, growing up in the West by default means you’re a bit me-me-me and don’t pay attention to others), and my other ex, the yeshivebucher, said “ya, I wondered about it – but then I realised that each of your seemingly ‘autistic’ traits has reasons for existing that come from your biography” (that included my childhood, family, history of migration, etc.).

Side note, I don’t think it’s the “Western” upbringing, as Westerners have equally attributed things that seemed strange (like reading a lot) either to me being Polish, or to being (counterfactually) raised a single child (when I asked a Finnish friend if I could eat one of her tomatoes and then washed and ate one without offering her one), or … whatever.

I guess I cared less about the yeshivebucher’s argument than about the fact that I realised that a lot of my daily, routine experiences, as well as major life crashes are well described in autistic autobiography, blogging (e.g. see the paradigmatic supermarket scene on Rhi’s blog), Twitter discussion, what not. Reading about it helped me mostly by making my experience of things more valid – by reassuring me that a real difference between me and most people existed and was the reason for me doing so much stuff differently (apparently eating, dressing, shopping, traveling, studying, working … everything), having given up on many things most folks do (e.g. group classes, larger social outings), and for refusing to do things that were expected because I just couldn’t (again see Rhi’s essay above) – but people (specifically: my family) interpreted the inability as some sort of defiance, laziness, stubbornness, avoidance, whatever – which was aggravated by the fact that I was extremely able academically (if I was able to “pick up” foreign languages or how to use random music instruments, why wouldn’t I be able to “pick up” and remember to do practical tasks like shopping or cooking? Or what to say and what not to say to shop assistants or neighbours?).

I spent perhaps half a year to a year voraciously reading autistic writings (from the neurodiversity perspective; I didn’t read much or almost anything that’s rooted in the paradigm of autism as pathology, as I’ve already got enough depressing thoughts in mind without doing that to myself) … looking back on episodes of when I’d dropped so many activities not because of any difficulty with the activity itself, but because of the social “packaging” it demanded; looking back on “unexplainable” crises I’ve had that were (retrospectively) simply due to sensory overload and not paying attention to interoceptive signals; looking back on people’s strange reactions to me – I was in my 30s at the time, and it felt a bit like having an explanation and also a bit of an excuse (or an attenuating circumstance) for a couple of failures I had accumulated (most notably the failure to have any sort of career path that would remotely match my academic achievements).

I’m still struggling to put my finger on what exactly these readings (and sometimes online and live dialogues) gave me – I think above all, perhaps, they finally endowed my difficulties with a reality: I didn’t find some stuff excruciatingly difficult or impossible randomly, for no reason, or out of defiance. It’s just really harder for some people than for others, and I happen to be one of the people for whom an uncommon set of activities is easy and another uncommon set is hard. And it’s a reality (a life-defining one in many ways), even though nobody saw it or empathised with it.

So in short, while I initially didn’t feel like reading about autism when my friend #1 pushed me to do it on the basis of “If the psychiatric establishment = labelling machine can attach some pathologising label to my personality, so what? Why should I care?”, then shifted to reading a lot once I discovered autobiographical writings and blogs and that they could help me validate / normalise and understand big parts of my life experience better (= increase self-acceptance, assertiveness, and upgrade practical solutions to my daily issues), I’ve recently perhaps started shifting into a post-label phase, a phase when I think back of what my friends said – think back of the significance of individual biography, history, life context, life experience, and of how perhaps, in the end, “autism” isn’t a “thing” (a gene or brain structure that you “get” and now you’re “that”), but that perhaps in part it’s a conglomerate of stories.

What I mean is – I’ve grown tired of categorical, black-and-white juxtapositions of “autistic” vs. “NT” persons, ways, views, styles of doing things – as if these were absolute and essential (God-given?) categories and completely context-free; maybe a bit like the view that “Men are from Mars, women are from Venus”. Even though I still think my life fits autistic styles and storylines, I really don’t like black-and-white thinking on an intellectual level – I’ve learnt it usually doesn’t correspond to reality.

What I miss is precisely context, story … history, graduality. Of how we become who we are, what influences us, how we develop strategies to deal with life and (just like in the men/women example) I miss the emphasis on a shared humanity that can describe all this without putting people into binary (black-and-white) boxes – whether it’s gender, neurotype, race, sexual orientation, or whetever else one wants to pick as the one definitive dividing “line”.

It bothers me. A bit like it bothered me, when I was hanging out with young trans people in England, that they were playing a similar us-vs.-them (the cissexuals) game. A bit like Berlin vegans started to bother me with their version of us (the morally righteous) vs. them (the awareness-lacking meat-eaters). … I could some up with many examples, but heck – it’s really not just religious fundamentalists and nationalists that play the us-vs.-them game. The local political vegans, the cool queer kids or the mildly (kind of innocently) polarising ActuallyAutistic folks certainly have much less power to turn my personal life into hell than do, say, the German or Polish right-wing us-vs.-them fundamentalists, but … why exactly do we always have to do this? Doesn’t it spoil the atmosphere?

Why does it seem difficult to admit that we always (?) have both similarities and differences based on, respectively, shared humanity and personal history and circumstances? Why does it seem so easy to fall into talking (thinking?) as if there’s always a group of people with whom we’re somehow identical (“same”) and then one which is somehow “opposite”? Intellectually, I don’t get the lure of it – I think it’s just not sound. Emotionally, I think it’s perhaps a need for safety – and the assumption that only sameness means safety, that there can’t be safety if we’re all different (and different in different ways).

Bottom line is though, I didn’t actually want to write about this (complaining that I don’t like constructing black-and-white oppositions). I wanted to write about some recent readings I did in developmental psychology, such as Laurence Heller’s Neuro-Affective Relational Model and Lindsay Gibson’s practical handbooks on emotional immaturity (which also contain references to quite a bit of theory). Reading stuff on early development and possible issues that can arise in relationships made me think of how similar some of the profiles of issues are to the “typical” autism profiles – it seems that both super-early trauma and emotional immaturity in caretakers (which may amount to a similar thing) produce behaviours, habits and traits – basically coping strategies and ways of life – that cover most of what’s usually given as typical spectrum traits.

I was confused about this for a while and even considered writing an e-mail to Laurence Heller about it (not done that yet), in that his early developmental trauma profile basically is the typical autism spectrum profile. Digesting this for a while, I don’t think that autism as such can be reduced to early trauma – I think though that it probably can be reduced to (strongly) above-average sensitivity (genetic or generated by events) in combination with developmental trauma or just developmental gaps that follow from it, in the sense that it’s rare that the sensory and emotional needs of an exceptionally hyper-sensitive child will be met well enough to not create some sort of gap or difference with others. This developmental gap then can create various vicious cycles that lead to typical problematic autism issues.

The question here is whether you define the initial ultra-sensitivity as autism – even though in itself it’s just sensitivity and doesn’t necessarily resemble or have to evolve into a “typical” autism picture with specific issues; or whether you define it as “autism” once a gap has been created and widened enough to create significant trauma and/or social problems for the person involved.

I basically think that’s a question of naming and doesn’t really matter, but what matters to me is that I keep thinking back of my friend’s remark that he can see rationales for various behaviours in what he knows about my family, childhood, etc. I think this isn’t wrong – because I think of course I (like everyone) developed coping strategies to deal with specific circumstances (my extra sensitivity being one of the circumstances). What further matters to me is that I don’t often see this distinction in conversations about autism – the question of what is, in a way, “essential” to the person – perhaps their innate personality or “spark” – and what is coping strategies; especially coping strategies developed to deal with extremely high sensitivity in a world that is less and less friendly to that.

It’s a question I often ask myself on the one hand because, looking back on my life, I can see that I have shifted many of the issues that seemed so typically “autistic” through personal development, improved relationships (both made possible by and enabling further personal development), therapy, and things I’ve been into like somatic bodywork, Alexander technique, etc. I’m certainly still weird and I believe I always will be (maybe I’ve taken a vow or sth.) but the older I get and perhaps the more healing work I do around very early trauma, the more I don’t really match autism criteria. At the same time, it’s also completely clear to me that I have above average sensitivity and a perceptiveness that’s just different, and this will not change (although my sensory sensitivities actually changed with therapeutic work, but I will never be in the average range of … basically, insensitivity :D).

So what I’m aiming at is, has anyone thought about and articulated differences between inherent (you could perhaps say autistic-style) sensitivity, and the coping mechanisms that thus sensitive people often build up, which often halt and impede their social and other development?

Not doing so seems strange – a bit like not separating cause from effect, and a bit like neglecting stories, developments, individual histories in favour of boxed-in categories.

For example, it seems that you could have most of the stereotypical “autistic” coping mechanisms (like withdrawal into over-rationalising, cutting off from interoception, which leads to alexithymia and a general relational disconnect) for reasons other than an autistic-style sensitivity (it might be just some people’s response to trauma). Similarly, you could have autistic-style sensitivity but develop other strategies to deal with an over-intense world – if you are supported differently, or for any number of individual reasons (for example gender socialisation could be one factor that favours different coping mechanisms – again, not distinguishing the primary sensitivities from the secondary coping mechanisms seems to lead to confusion here about “female” vs. “male” variants of autism).

I would have to go into a lot of detail here to make this argument with any level of coherence, but it’s just thoughts to put out there.

This is also quite in line with Guy Shahar’s writings, which I found extremely relatable (for example the article on autism and sensitivity here).

I also remember at Autscape 2019 a Polish presenter trying to make a similar argument (as far as I understood him) in a presentation, basically saying that the clinical criteria for autism are basically the same as those for personality disorders, and that this points to the fact that people, with autistic-style sensitivity or not, have access to the same (sometimes problematic) coping strategies – and in that sense, these are not specifically autistic. An autistic person might use specific ones with special intensity, but in essence autism does not require a completely new and separate conceptual framework from what is already known about developmental psychology – what is known about how little children can use various inner strategies to deal with overwhelming circumstances. These strategies are available and can be empathically understood by all humans. The reasons for which and degrees to which they are employed of course vary widely.

Sensitivity is also something that can be understood by anyone, also on an empathic level, once it’s explained how much innate levels of sensitivity and perceptiveness can vary. So, would “autism” be easier to understand on a logical / scientific, but also human and empathic level if the two aspects of innate sensitivity vs. individually developed coping mechanisms could be seen for separate (while of course interacting) factors?

I realise now that another source of support for this idea was Gabor Mate’s book on ADHD, Scattered Minds (read Chapter 1 online here); where he makes a similar argument for understanding ADHD as sensitivity + developing an individual set of coping mechanisms (e.g. dissociation / forgetfulness) for circumstance experienced as adverse or difficult (at that level of sensitivity). Since these coping mechanisms are often developed so early, they can become very ingrained (presumably altering personality and brain development) and cause a cascade / snowball / vicious cycle of aftereffects that later seem to define the person. Mate’s personal experience (as a person with ADHD and a physician who also treats people with ADHD) and argument in his book was though that developmental gaps can be caught up with, even at a late age (regardless of age), if you know what’s missing and how to provide it (he gives details of what works, and these details are pretty much what I’ve been doing in my own case to learn in adulthood things that I missed in childhood, things that are sometimes quite hard to describe but can be felt distinctly, such as a coherent sense of interoception or of time or of … self). After reading this book, I wondered if a similar argument / experience would apply to autism – the “problematic coping strategies and developmental gaps” aspects of it, not the sensitivity aspect – and I thought, heck, probably yes.

I would be curious to hear back from anyone who has thought about this (or maybe it’s mainstream and there are books about it, I just didn’t notice?). I have the impression that there are some folks in the #ActuallyAutistic community as well who wouldn’t be appalled by this style of thinking (apart from those who would be).

6 thoughts on “My history with labels & autism = sensitivity + coping strategies?

  1. This is…interesting…and I feel like the fact that I have met neurodiverse individuals who didn’t experience trauma but absolutely “feel” neurodiverse to me, plus the random genetic things like why neurodiversity is so much more prevalent in some genetic disorders like Ehlers-Danlos Syndrome, epilepsy, etc..says something. But, I guess what it also says is that sensory wiring differences are core to neurodiverse nervous systems and that predisposes those with them to trauma *and* to how their bodies respond to trauma. Also, SPD “exists” alongside ADHD and ASD. And, you used to not be able to be diagnosed with more than one type of neurodiversity and now you can. And, frankly at this point I’m not entirely sure I could confidently figure out if someone was “just one” or multiple types of neurodiverse…and I’m not sure how much usefulness it has for helping a neurodiverse person it has. I am happy to borrow techniques from pretty much anywhere at this point if it helps me accomplish what I want and feel better in my own mind. And, that doesn’t just mean from under the neurodiversity umbrella (even if you define it “small tent” instead of big tents.) My nervous system is *definitely* wired differently from most people I meet. And, those differences absolutely are “neurodiverse” enough for those others to have noticed (and been abusive about it.) But, eh, while the academic in me likes getting to root causes out of curiousity, from a practical “actually make myself more sensory comfortable” perspective, not worrying about the details and just taking the advice that feels right for me without worrying about labels seems more helpful. So…I have no idea what my point is anymore. But, interesting post!

    1. Thanks! Ya, interesting points. If I understand correctly, on the one hand you mention that how we individually respond to trauma / stress isn’t the same and there are different styles of stress responses. I think that would make sense … I also think there’s even a person (@peripheralminds on Twitter?) who has a theory of autism as a stress adaptation, I don’t fully understand it, but I think it’s about a specific style of responding to stress, so I guess what I refer to as “coping strategies” here.

      On the other hand the practical bottom line, as you say, for me is also just to use advice that’s effective (and the autistic community is often a good source for that). Although I guess on a practical level I’m also wondering about what’s stress response / trauma adaptation and what’s innate sensitivity because I do wonder what is modifiable and what isn’t (as I wrote, I feel that for me years of personal development have modified quite a lot), and this *does* definitely have practical meaning for my life, and maybe for others, not sure.

      What I mean is, it might be good to go beyond statements that “autistic people are different in X way” to for example thinking about what kind of personal development or therapy makes the most sense for autistic people given the modifiable and non-modifiable components.

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