I’ve moved house, and have now had no wifi for three weeks. I’d like to be interesting, and write an insightful passage about how being unable to plug into tumblr and facebook constantly has enriched my life and helped me start reading again, but I only have two hours free wifi at this coffee shop, and frankly, YouTube is calling, so nothing serious going out today, just a little post to remind everyone that I do exist, and I do care about this blog.
Upcoming posts I’m planning right now in my head are:
Amber Heard And Jonny Depp; The (Misogynistic, Historically Relevant) World of Celebrity Break-Up And Divorce
Don’t Have Kids (And Then Be Mean To Them)
Diagnosing Myself vs Being Diagnosed; what’s the point of diagnosis, and is either system better?
Please don’t forget me, just because I’m now living in the 90’s (I’ve been watching a lot of Friends on DVD, and am re-reading Bridget Jones yet again), I haven’t forgetten about you, and I will be back with a flourish, soon…hopefully….please Sky, I need my internet, please. (Please.)
So I’ve written previously about how I use labels that I don’t necessarily feel fit me because I find them helpful nonetheless. I didn’t get round to talking about autism and me.
My most controversial self-label flirtation is the one with autism*. It’s the one I’ve had the most pushback on, in the form of potentially rather ignorant statements like “everyone is a little bit on the spectrum” and a GP simply shaking her head at the suggestion, despite my 3 siblings being definitively on the spectrum since young ages. Now, I’m not claiming to be the epitomy of autism. Not at all. I’m clearly a very social person, with at least a temporary ability to communicate well and use body language, and I can see this, I’m not surprised when people see this and reject “autism” as a label for me.
But it is so useful for me. It fits so well into the words and the concepts that I need to describe my life and experiences and behaviours. Stimming fits with my pretty-much constant need to be fidgeting, mainly typical behaviours like picking at my hair or nail polish, but even writing it feels like a half-assed excuse and justification. Listing that I flap when I’m excited sounds like I’ve copied it out of a symptoms list, and only remembering that another close friend pointed out that I’m very “flappy” when I’m really happy about something makes me realise that this is actually accurate.
I don’t really need other people to find my labels valid, that is my point as a potential label stealer. I can get use out of the label and the language without needing other people to get it or to understand it, it’s a deeply personal thing. I find it useful to describe my obsessions to myself as “special interests” and to allow myself my physical quirks like clicking my fingers repeatedly or clicking my tongue on the roof of my mouth; I find largely that it helps with my sense of shame for those behaviours, to give them a name and a reason and a legitimate purpose as a neurodivergent person. (And I do believe I’m neurodivergent, as far as anyone who can pass as neurotypical can be, in fact, I often question whether everyone who’s supposedly “neurotypical” is like me, only hides it better, and then I realise how ridiculous that would be.)
Giving myself a label allows me to legitimately occupy a space I’m already living in; it makes my quirky weirdness and constant struggle to fit in a fact of my life, instead of aseries of challenges that I’m failing at simply because I’m inadequate. It makes my awkward responses to schoolmates/bullies logical, my gravitation to autistic peers more inevitable, my incessant fidgeting and fight to stop it more sympathetic (I don’t stop myself from clicking my mouth anymore, like I did when I was very little and in infant school, and can remember myself doing). It means I can be kinder to myself and believe that I am in fact, doing alright as I am. I can give myself permission to be me with all my “flaws” because they’ve in fact got a name, and they are a valid form of existance.
*Actually, my more recent aquisition of the label dyspraxia is more controversial, having had a direct rejection from someone who has been tested for dyspraxia, because “her mother apparently also felt she had it once hearing that her daughter did, but her mother is just a very over-exuberant person and thus does not have it”. Yes, that story doesn’t make sense, because it’s possible to be over-exuberant and also dyspraxic, but nonetheless, it’s the seed of doubt that means I’m going to continue blaming myself for having my movement volume too loud instead of getting myself tested, at least for another few months. But this label is newer, so I’ve had less feedback. And with this kind of feedback, that trend isn’t likely to change.
People are simple social creatures. We like to communicate with eachother, and we’re not very good at understanding nuance; we often have to simplify stuff just to fit it all into our heads. However, this does mean that we’re pretty inaccurate a lot of the time, as anyone who’s spent any time in Social justice circles will know all too well.
Different factions of the internet believe enormous simplifications about each other, like we’re all disgusting caricatures who exist purely to antagonise each other, in a horrifying ugly yet elegant relationship of mutually assured destruction, many people wasting days of their lives (literally, if you add it up, you’d be surprised how many hours those trash conversations on facebook stole from you) both contesting these caricatures and simultaneously re-inforcing them.
“Feminists aren’t angry! but actually I am angry about this issue for a legitimate reason though”
“4chan users aren’t obnoxious! but actually I do find this offensive thing funny though but”
“Fat people aren’t lazy! but actually people should be allowed to be lazy though”
These examples are far from perfect, but you get the idea.
The problem comes from the combined problems of ego and communication.
When we talk about anything that stems facebook messes (those conversations that go on for far too long, and you either love the drama TOO MUCH or you despair of it, but either way, it’s still be hours since you left the screen), we’re normally talking about stuff that’s really close to people’s hearts, that’s close to their identity and understanding of who they are as a person.
There’s a lot of defensiveness here, and it really gets in the way of actual communication, and what’s worse, is that it’s normally really unoriginal, like “I’m not racist, I have a black friend” which even typing out felt bad, because it’s been said so many times in the exact same way in so many of the exact same conversations about racism with someone who only has a basic level of understanding of the word.
This unoriginality begins eventually to grate so hard that it becomes its own meme, and illicits hostility from the moment it’s uttered, like “Not all men” has become its own red flag for a man who knows nothing about how structural sexism and rape culture operates. But predictably, being met with sudden hostility doesn’t exactly decrease someone’s defensiveness, and they still don’t understand what you’re talking about, just because you do and you’re bored of having the same conversation.
Now I’m not saying humour them and say, no, it’s okay, you’re one of the good ones and do not worry! But we’ll get to communication in a bit.
Another specific instance I’ve noticed is with autism, perhaps because it is a more hidden or private trait, often when it’s spoken about on the internet in casual circles it will be with relatives of autistic people. Not only is this uncomfortable because leaving someone out of a discussion about them is inherently dehumanising, whether on purpose or not, it also greatly increases the levels of defensiveness involved. Now it’s not only about being potentially seen as a bigot (a big part of most people’s lives revolving around not being that blatantly unpleasant) but also about their worth as a parent/sibling/cousin etc. It’s a particular brand of nightmare fuel.
We get a bit lost with all the understandable human ego messes flying around these topics, there’s the warrior in each of us that wants what’s right, and a scared little person who wants to look good too, and part of us that doesn’t want to fight at all. No wonder we miss the point sometimes, we get waylaid with insults, or pedantry, survival tactics, damage control, or simply soapboxing our own beliefs.
There’s actually not a lot of talk left inbetween about how best to communicate across these issues, and that’s not surprising. Who wants to spend the little energy they have left at the end of the fray on working on communication with the “other side”? Tribalism is deep in our bones, and when stuff doesn’t work out, it makes sense that our instinct is to blame each other and flee the scene. And there are times when that is simply the best thing you can do; remember those people who love the mess too much? Definitely a running-away situtation.
But the answer is actually pretty clear with the benefit of hindsight; it’s in stepping away from our egos. Now this is hard, and it feels dangerous, because our egos are what fuel most normal interactions just fine, they are what help us to know if we’re going over the line, being offensive, or if we’re improving our relationship. But it’s not normal communication at all when we’re talking about social injustice, which is why it trips up so many of our ego defences.
Communicating without Ego but with Respect/Dignity
Thinking of egos like trip wires, we can see how to avoid them. We can avoid a lot just by focusing on statements and facts, on sources written by other people about people in general of a certain social demographic, or even sources written by people who belong to that demographic; it takes the sting out of any perceived insult and it reduces the degree to which you personally are part of inflicting said insult.
Another handy way to get out alive is to remember your own relationship to your ego. You will want to be right, and you will want to be understood. The other party probably won’t be trying to avoid tripping you up, especially if they think this is a personal conversation, so you have to be the one with the perspective to step away from the ego in order to communicate what you need. And then get out; because you cannot make up people’s minds for them, and people need time and the (illusion of) choice to change their worldview.
This doesn’t mean just be a doormat. You still have an ego, you’re just putting it away temporarily in order to achieve a realistic goal, like providing an alternative view point. It doesn’t mean that when someone insults all feminists for example that it is okay for them to do, and that you always have to shrug it off, and that it isn’t structually harmful to discredit marginalised voices that speak out. But what is structurally harmful and what is personally constructive are not always the same thing; letting a bit of ignorance slide is the only way to change that ignorance into potential knowledge and another agent of change in the world.
Amazing report on autism in the workplace by Janine Booth for the Trade Union Congress. Could not recommend reading this more, it presents an in depth view of how the social model of disability interacts with the workplace for autistic individuals:
Actually amazing resource on female autism… It’s considerably underdiagnosed in AFAB people (note: the data lacks a distinction between sex and gender), so this is a really interesting and educational read.
The stigma around autism is, like most stigma’s, incredibly pointless. Life is a spectrum and we all have traits, and autism is just a name for having this particular group of traits, to some degree, and that is okay, because we are not all the same, and it definitely doesn’t mean there is, or has to be, a hierarchy involved. In fact, the talents of autism are often hidden or shamed, because of needless stigma.
Another very important factor to remember is that, even in the images in the blog post about symptoms, it’s illustrated with only white women, and that is reflective of the general norm. Alongside the higher male-coding of autism, it is also massively under-diagnosed and recognised in black and latinx people, often mistaken for Borderline Personality Disorder or psychosis. (More on that in its own post later.)
This blog is about my journey growing up with an undiagnosed autism spectrum disorder, my struggle to overcome my disabilities, and the many angels I met along the way who have made me the person I am today.