It’s a little more than a year ago since I got my late diagnosis of Aspergers Syndrome. A little more than a year has passed since a kind psychiatric doctor tried to explain to me what autism meant and how it could express it self and I couldn’t take any of it in, because the words “Aspergers Syndrome” and “not curable” kept ringing in my head and dancing in lime green colours before my eyes.
I had wanted answers to a lifetime of break downs and depressions. And now that I had it I didn’t want it, because I had expected something that I could fix with a little therapy and some pills in worst case. For a while I was numbed, although still trying to gather data on this Aspergers and joining some Facebook groups. Through these groups I found peers that seemed to know and feel what I knew and felt. It was an odd sensation at first, feeling like “hey, somebody actually gets me”. But then they started to drain me: these online conversations on primarily struggles and bad days – and I let it affect me so much that I started to convince myself that I would probably never work again – who would want me? – and consequently, what would be the point of living. I allowed for the truth of others to become my truth, because I just get so easily affected by the moods of others. And besides the fact that it made me wonder if I am the only one, who got (and get) affected by these stories and momentarily lose the will to fight back, it was devastating because as I realized what was happening, I knew I had to minimize the time spent in those very groups in which I had found a sense of belonging – probably for the first time in my life.
Working at Special Minds, along side others with neurodiverse trades (not necessarily diagnosed), was something I looked forward to, because it was going to be a work place with colleagues like myself: what could possibly go wrong?
First of all, most of them are about 20 years younger than me. Lunchtime is spent debating the best ways to get drunk or some calculation formula on how to go from centimetres to kilometres – one is ridiculous, the other one – the calculation – is just odd debating, when you can look the goddamn thing up in a book. And I get it; they are young, so parties and getting drunk comes with the territory. And some may never have dealt well with the ordinary school system, meaning that e.g. basic calculation formulas got lost in stress and sensory overloads and that Special Minds might be the first time and place, it actually starts to make sense. But I don’t get why, if something is hard to learn, you would prioritize partying and hang overs, rather than hitting the library and try to work it out yourself. To me that just sounds irresponsible. -now, wait for it, before you attack me-
And I bend my head in shame, because then I realize that I’m assuming that they have the same strengths that I have. I realize that I have fallen victim of my own rigid mind, that lacks immediate empathy. My empathy tends to kick in after rationalizing and analyzing. Then I get it. But at first, I’m ashamed to say, that I just get pretty damn annoyed and frustrated.
I don’t know how to talk to those kids! I feel out of place and although we share diagnoses, I still feel like I’m an alien. Just like if I place myself in a neurotypical setting.
My specific trades seem to be making me “too well” to belong to the ones of my diagnostic spectrum.
My specific trades seem to be making me “too odd” to belong to the neurotypical settings.
So where do I belong?
Where does anyone belong, when it feels like the world and yourself is seperated by an invisible wall?
While changing the view on autism from a linear to a spectrum view clarified the diversity within the autistic community, it also tells a little tale on how foreign you can actually feel, even being with people on the spectrum. Just like any person can walk into a room and feel like there is nothing in common with the people there – the fact that you are all neurotypical, does not guarantee that you get along.
“But”, you will object, “we usually make it work anyway”.
And that is sort of my point, because as an autistic person I don’t have that skill that makes you able to do that. My instinct and – to my knowledge – only reaction, when exposed to a socialized environment where I have no common ground, is to shut up and shut down. I strive to face people and seek eye contact and give an occasional laugh when something seems to be accepted as funny or if someone – I don’t know, spills water, I try to smile with compassion. You know – so I don’t appear too negative and show that I’m somewhat present. But I don’t know how to start a conversation, when I don’t know anything about that other person’s interests. Maybe I have the first couple of questions, but I have no idea how to keep the conversation going – the only choices after the prelude is going blank or panicking.
It seems like at work the fellow autistics share some interests, like Pokemon Go or different video games. I, on the other hand, couldn’t care less. I’m on Jurassic World which is pretty much Pokemon Go, but with dinosaurs, but I don’t actually play – I just collect the dinosaurs. I don’t even know how to play it – because I don’t care.
And however fast my mind can be in gaining new exciting knowledge, it completely fails me, when it’s about things that doesn’t interest me. I just don’t store the data.
I love Special Minds, because I get to fiddle and dabble with tasks that captures my interest. But I really do not like lunchtime. Half an hour every day, we are to sit in a shared lunch room and my nerves are really being pushed and pulled during that half hour. The noises, the smells, the tastes of the food and all the conversations, where my mind is constantly trying to figure out where I can add a little something – but usually when I figure out what to say, the conversation has moved on and my few collected words in my mind have become irrelevant, before they were even said out loud. I do not thrive in social settings, where people know each other well – and are not good at opening up to new ones. I need someone to talk to me, have a little patience and listen and ask – and then as I start to relax, I can give back a little bit. Well, apart from the fact that I just don’t appreciate company nor conversations as I’m eating! I hate when people ask me something and I have something in my mouth. When I try to chew it to swallow, they get impatient. “Did you hear me?”….
“Yes I fucking heard you, but I don’t like talking with food in my fucking mouth and neither should YOU. It’s disgusting!!!” – I’m thinking this. Waayyy to polite to say it, even in a more diplomatic way. I mean, people can’t help if they weren’t raised properly. It’s not their fault. And who am I to decide how they should eat or speak. But it’s just one of the things that can really trigger me – and the sounds of chewing and eating too.
So you see, lunch time is not the best time for me to socialize – but it’s the only opportunity that I have, so I’m trying to make the best of it. So far I have managed to sit next to somebody else, to look at someone and smile at them and to smile or laugh at the conversation that takes place at the table.
It’s a little different in most neurotypical settings actually, because usually those settings have at least one person that is generally outgoing and extrovert (or at least more than I am). This means that in neurotypical setting I tend to open up and socialize more.
Or maybe it’s even more simple than that: maybe those neurotypical settings are just the kind of settings I am used to deal with and therefore have a greater knowledge of what is expected and what is accepted to say and how. I’m not used to being put in neurodiverse dominated settings, so the underlying dynamics are unfamiliar.
Is this what happens, when you’ve been masking your entire life – or at least 30+ years of it – and you are suddenly placed amongst likeminded? If an elephant is raised and live with gorillas, does it start to adjust so much, that it gets hard to be with the elephants? Or to bring it a little closer to home; if you raise a puppy with cats, does the puppy adjust to cat-like behaviour. And if the puppy years later is put in a dog-only group, does it stand out from the others? Will it have a hard time interpreting the communication from the fellow dogs? Does it ultimately communicate or function better with cats, than dogs – but not functioning optimal in either setting?
And where does the puppy belong? With the dogs? Or with the cats?
This is a major conundrum in my head as of late. So now I’ve tried to put some words to it and I would love to hear your thoughts as someone with autism, someone related to someone with autism, working with autism – or maybe not knowing anything about autism, but still feel there is wisdom to share….
Guys, I’m all ears and eyes – I need your help on this one.
My love to all of you – thanx!