A few days ago I bumped into an excellent blog by an a woman with (officially diagnosed) Asperger’s (this one).
In addition to that, after debriefing me about my family life, my therapist/coach asked whether my father is autistic (based on a brief description I gave of our relationship).
And for the cherry on the pie, last week an old friend magically re-appeared – the same one that had years ago just been freshly diagnosed with Asperger’s, and after assimilating this information insisting that fairly obviously I’m like her, too.
Stereotypes and insider perspectives
Then, back in 2016, I listened to her and said, hm, well, if you say this, let me read up and check – why not. Might as well find out something useful about the world, people and myself.
I had never been particularly interested in autism or thinking it may be relevant to me, because I associated the term with either obvious issues with daily functioning (like, language, motor skills, etc., which I don’t have – I job as a multilingual translator and am dexterous manually); or, on the other hand, with being some kind of cold, feeling-less savant genius (I had seen the movie Rainman in the epoch when I was still a kid with my parents, watching movies).
Perusing resources that were written by autistic people themselves though, specifically women who had received and accepted an Asperger’s diagnosis, I realised that my superficial image was wrong; I also realised that actually, these autistic authors and also the people I knew that had an ASD diagnosis (I started paying attention to that now) were actually the people that I found most relatable and interesting.
They actually made more sense to me than “mainstream” people.
Now why (hopefully) everyone is somewhat selective concerning the people they surround themselves to or get close to, for me at least since my teenage it was a given that if I meet 100 people, I will relate maybe to 3 (ok, random statistic pulled out of my sleeve) well enough to actually feel like having a conversation with them, meeting them again.
When I learnt about autism, I realised that these 3 people would typically be those who have many traits that are considered Asperger-ish, like being intellectual and inquisitive, but also more sensitive and somehow … hard to describe, something along the lines of calm/slow/gentle – in a way also open and obvious and somehow simple (in a positive sense) and predictable (to me) with their emotions, and above all what I could maybe call “logical” – no confusing games and rituals, no boring and hard-to-follow (since it doesn’t seem to have a point) small talk, no weird boring interests like fashion, superficiality or drinking alcohol in crowds (that I never got the point of) – just honest, obvious expressions, interesting thoughts and get-to-the-point conversation that goes straight to deep and personal as soon as you feel you can trust the other.
To think about it, it was the same with that particular friend. She was just immediately easy to talk to and “making sense” – and when I analysed why, through the lens of the info she gave me about Asperger’s, I thought – well, yes, it’s true: I find her easy to talk to because she is a bit literal; she ways what she means; and what she feels; I don’t feel like I have to guess around hints or implications. Even when she’s full-on in my face about something, that is still calming and reassuring to me (because I can see what’s going on, and my gut empathic information is consistent with what she presents on the outside), compared to having to guess around a forest of hints whose purpose I largely still don’t understand, both on the level of gut and logic.
Additional hints in the family
There were many additional things that seemed to “fit”, that I will not go into here. One of them was, though, what my mentor brought up – that my dad seems to be the cut-out stereotype of a (male) aspie: highly gifted in physics and tech, hand-building radios and other electronic devices since childhood, and not really interested in much else, talking about it to everyone non-stop regardless of their level of interest or comprehension (that includes me when I was 6 and heard about quantum physics for the first time).
I sometimes wonder whether I’m like that. I’m not sure. It’s hard to see yourself from the outside. I know that people do perceive me differently than I perceive myself, a lot of the time.
Autistic is normal
If I accept the hypothesis that my dad likely has a lot of autistic traits, the fact is also that I grew up with him and nobody ever told me that there’s anything weird about this way of being. Actually, I was perhaps raised more in the spirit of believing that the outside world is weird, or wrong – based on my parents’ hard emigration experiences and my dad’s difficult work experiences in the Wild West.
And, to be honest, that’s still the way I perceive it in my guts to this day.
Yes, most people have interests that are either totally incomprehensible to me, or incomprehensibly … boring or disrupting, in a “Why would anyone do that to themselves?!” way.
Now that statement is certainly valid the other way around, too (e.g. while to me dating, parties and TV series were unimaginably uninteresting, my philosophy, physics and spirituality books would have been that to my classmates if I had not learnt early on to hide what I’m doing when I’m alone).
The upside of having an autistic parent (and probably more people in the extended family) was that at least at home, my interests were highly regarded – actually not even that; they were just considered normal and to-be-expected.
The problem with that was though – as I see now – that I never learnt to understand that most of the world is neurotypical, and that neurotypicals are significantly different from me. They don’t lack logic, and it’s not ok to just ignore them (even if they do certainly ignore me). They have their own logic, and I have to know this logic if I want to function in this world, in which, unlike in my family, I’m – in a minority that the vast majority of people don’t get, understand, or make accommodations for.
The invisible barrier
I didn’t realise that until quite late.
I just went through episodes of huge pain and depression in my adolescence and early adult life, when I realised that for some reason – things just don’t seem to work.
Yes, even at uni I was still top of many classes without doing anything special (or, truthfully, I’d read course materials that I liked out of curiosity ahead of time anyways, so hey – that didn’t feel like effort) and correspondingly received scholarships here and there. In fact, these were my only source of income (apart from the odd, underpaid science translation job) until I hit my 30s.
But my relationships were an epic disaster suitable as a literary canvas (sometimes when I recount the more eccentric episodes, people suggest I write a book), and I didn’t seem to cope with daily life too well … arranging things related to housing, cooking (OMG!), cleaning, shopping, clothing, the pragmatic mechanics of living comfortably. I’d instinctively live minimal and effortlessly save half the money even on scholarships that were minimum wage (I assume that’s because it never occurred to me to buy needless things such as clothes – cause I always still/already had some; meals in restaurants – what’s the point of overpaying for eating in a crowded place where they can serve me something unpredictable that I may not like?; various social outings – why do that to yourself?!; fashionable gadgets, cosmetics etc. – not something that occurs to me).
Not to mention thinking about securing a source of income – that didn’t even cross my mind until I was perhaps 27 (and quit a PhD program), because I was just interested in studying topics that interest me, traveling, and meeting new kinds of people (in the hope, perhaps, to find a cluster of them somewhere that’s more relatable than where I grew up; in fact, that’s relatable at all).
In my late 20s and early 30s, I realised that something is off. That somehow, unlike at school and uni, things look that look so easy to people in my age group – seem completely undoable to me, no matter how hard I try. Things like having a relationship or having a job; or even spending time in a group and not soon feeling miserable. Or even things like getting an apartment and keeping it in order, and being well-fed and cared for. Things like regular outings with friends. Things like, let’s say, going to a class or club that interests me and not dropping out after two meetings because the people stress me.
I probably gradually got depressed – so gradually that I only realised it when I saw clear evidence of my physical and cognitive functions declining (getting incredibly exhausted from just a walk; constantly forgetting what I’m about to do and working intellectually so much more slowly than I used to). Something that I thought looked like CFS, but perhaps was/is “just” depression. Hard to tell; yet to evaluate this.
This sent me on a long trip of studying self-help psychology and various alternative approaches to physical and mental health, too (even getting a few funny qualifications).
On these trips, I also learnt about HSPs (highly sensitive persons), and at one point, about “empaths” (people who are energy-sensitive and have plenty of experiences that are considered borderline mystical, which I did since childhood, too). I also learnt a bit about the psychology of growing up with a migration background. And – I almost forgot about this – I learnt that another part of life I considered normal, namely feeling (very) bad (consistently since age 12) with having a female body, is unusual and actually quite a serious issue – something that in itself can make people’s lives much harder, push them towards being distressed and depressed (the psychiatric name for that is “gender dysphoria”).
After discovering all these things, I had no idea where to start. I still don’t, fully. I thought thought that writing about this may help me, and perhaps a few others, because reading about similar stories has helped me feel valid and human, and gradually discover ways of thinking about myself that aren’t self-defeating (unlike most of the advice and opinions I’d pick up elsewhere).
There is a mixed feeling of being somehow shocked/scared that people can be so different from each other – that actually, I’m as alien to “most people” as they are to me. That’s a scary perspective to live in, for me. On the other hand, growing calmer, perhaps more seasoned in a way, and becoming a better friend to myself regardless has helped a lot – also in connecting to (the right) others.
Regarding Asperger’s specifically, for a long time I did, and still to some degree do, have a dislike for talking about human experience in medicalised terms. That’s also what I initially told the friend who insisted that my whole life pattern (including areas of giftedness and lack thereof) is “obviously” Asperger-ish.
Why label myself with something that comes out of a psychiatric manual (with a pathologizing history; i.e. not too long ago this psychiatric community would have tried to violently “cure” me of being gay, not to mention gender diverse), when I could just as well describe myself as me, as a person with specific personality, perceptive and cognitive traits – that are rare?
Does it really make a difference whether I tell people, “hey, I’m a bit autistic, that’s why I can’t stand this noise” versus “hey, I feel uncomfortable with this noise, could you please turn it down”? Or whether I say “hey, I’m autistic so larger groups are difficult for me” versus “I don’t feel comfortable here and I may have to leave if it becomes too much, no offence to you”? Would people show more understanding – or would those that don’t suddenly do based on flagging about some medical label that I have no guarantee even applies? I’m not sure. I might still have to explain the very same things, just using connotation-heavy words from psychiatry rather than my own.
On the other hand, reading wonderful books and blogs by autistic people, I have realised that some of them (us) have twisted this dark history of psychiatry around and are using the concepts derived from it in positive, empowering ways now – such as regarding Asperger’s simply as a cluster of rare traits (as I was actually unwittingly brought up to do by parents coming from a background that didn’t medicalise these traits) that is relatively well-defined (these things somehow, for some reason, tend to occur together) and innate, with strengths and weaknesses; and that can, above all, be used to share information between people who have said traits to a high degree, to help each other survive a world in which we’re vulnerable by virtue of being a minority – thus often being excluded on top of receiving an upbringing, education, and “support” that is totally inadequate to our needs.
I’m “lucky” to be part of several well-defined minorities, in terms of ethnicity, gender, sexual orientation, and on top of that probably several neurodiverse traits. I have often had thoughts on the commonalities and differences between these various minority statuses. Still do. But one thought is that differences related to complete, deep patterns of mindbody functioning (such as autism, high sensitivity, synaesthesia, perhaps energy sensitivity) are possibly the most impactful and in a way make a person the most vulnerable.
Because it’s easier to explain someone who is different from me, “hey, unlike you I’m attracted to people from that gender and not the other”, or “hey, where I’m from, we just do this differently and I prefer to stick to this, no offence” – at least every reasonably open and intelligent person has a chance of understanding this (even if they may not accept or like it).
But to explain – or even understand for yourself – that you apparently live in a different perceptual, and perhaps emotional and cognitive world – hard, I think very hard; only possible in considerate, respectful long-term friendships where people can grow to intuitively understand these differences.
Relating across differences
This is, to be honest, a challenge I’ve largely been avoiding – instead seeking out people who are similar enough to not have to go through this whole burdensome and sometimes poignantly painful (for being totally misunderstood, often in ways so negative that I’d never even come up with the idea) effort.
These can be rare, though – and just being similar on this one level doesn’t mean that we automatically share interests, a worldview, and are otherwise compatible for doing things and spending time together.
Maybe for me that’s the value in reading up on neurodiversity – without that literature, it might take much more than one lifetime for me to come up with just how different the typical neurotypicals (nice to have a medically sounding word for the majority for a change 🙂 are from me; in which ways they function.
Because yes, I think it’s possible to live all my life in this world and somehow cope with most people’s difference from me, but really not get a proper gut sense of their internal how and why – without someone explaining me that, hey, I can’t just assume we are all the same on the inside and ignore the puzzling rest.