In this blog post I discuss my own personal experiences — AS is a spectrum disorder (to the point where it’s actually been withdrawn as a separate disorder from autism in some areas) and a very personal one, so what I write here may not be applicable to others.
A lot of people are surprised when they learn I was diagnosed with Asperger’s. I don’t fit the behaviour of a stereotypical “aspie” (I dislike the term) in their eyes, but it’s a huge part of who I am.
I get asked a lot if I’m “sure”. I’ve been accused of self-diagnosing (I haven’t; I was diagnosed whilst at school after being mis-diagnosed for dyspraxia) and using it as an excuse a number of times. That’s led to some soul-searching; What part of my behaviour is me, and shared by everyone, and what parts are down to my AS? Spectrum disorders are hard like that, and there’s the suggestion that everyone’s on the autistic spectrum somewhere.
Lots of people like discussing AS too. Either the causes (I was conceived in the months following the Chernobyl disaster, and I’ve had multiple people blame that and Welsh sheep) or the benefits of AS (obsession with facts and a technical accuracy bordering on pedantry) which seems to make people with AS well-suited for technical professions. But the literature I’ve found about the downsides doesn’t always chime with me and often focusses on the more extreme examples.
Living with AS is hard work.
I was lucky being diagnosed whilst still attending school as I could be referred to a specialist unit. I attended special classes at the hospital every Wednesday afternoon for a number of years to help me develop (my teachers were worried that missing regular classes would set me back — given that the class I missed was ICT, I think I’ve done alright), and through that, and with support from family and reading literature, I’ve developed coping strategies.
A typical symptom of AS is when someone goes on a long monologue about a topic they find fascinating and fails to notice that the person on the receiving end is uninterested or bored. Another is a lack of empathy: reacting inappropriately (as generally defined by social norms) to some particular news or part of the conversation.
So when I’m talking to people, especially about a topic I’m passionate about I have to remember to constantly check on how everyone else is responding and adjust my behaviour appropriately (this may be why I’m not too troubled by public speaking, there are too many people to check if they’re all paying attention that I just get up there and do it). I assume that everyone else finds this ability automatic, but for me it’s not, it’s a manual process that I have to keep checking up on. It’s the same with empathy, I have to make sure I’m checking up all the time on how others around me are feeling, responding, or if what they’re saying has a subtext (I really struggle with that) and behave appropriately.
I tend to avoid new situations, either with people I don’t know or with procedures/social norms I’m not familiar with so I don’t mis-step. When I do go to a new situation like that, I always go with someone else for the first time so I can follow their lead, or I research the situation to see if there are any patterns I know that I can re-apply. I plan what I’m going to say and run through different scenarios in my head constantly to make sure I’m prepared. It’s exhausting but tends to work, and every now and then I force myself to do something new and out of my comfort zone so that I can grow as a person. Although I don’t really enjoy it (at least at first).
I remember once when a previous manager invited me to a departmental meeting, I’d been in the job 4 months but hadn’t interacted directly with many people outside of my team and he was shocked at how much I suddenly clammed up. Nowadays it’s not as severe when at work, I’ve got enough experience I can apply the same patterns to all different types of work meetings (but it’s also part of the reason I don’t attend a meeting which doesn’t have an agenda).
I think it’s because I’ve developed these strategies that people are surprised when they find out I have AS as the symptoms I’m good at compensating for are the most obvious ones. I slip up infrequently enough for most people not to notice (often it’s only me that does), and a lot of the other traits of AS are subtle enough that you have to look closely for them.
I expect that people with AS who’ve had a similar level of support as me have developed similar coping strategies, so it annoys me that these obvious traits are almost exclusively associated with people with AS in popular culture. It shades people’s expectations by missing out the more subtle ones. The Bridge’s Saga Norén is one of a few fantastic examples of an AS sufferer in popular culture imo, and one I relate to heavily, as she tries very hard to cope with it (especially the relationship sub-plot in season 2). I can’t find the exact quote right now, but at one point she says something like “people think I can’t feel, but actually I feel everything”. That’s what AS feels like to me, you feel everything but you’ve no idea what it means or what to do with it.
But there are two situations where these strategies fail to work for me. One is when I’m drunk. I’m not sure if I enjoy being drunk, or if I enjoy the social interactions that tend to happen in a situation where alcohol is involved. I worry that it’s both, whereas I’d be happy if it was just the latter. But when I’m drunk, that’s when I tend to start slipping, it’s when I stop planning exactly what I’m going to say in advance and stop remembering to check on how people are reacting. And then I end up putting my foot in it and regret it the next day. It feels like I’m undoing a lot of hard work. I think I’m lucky in that most of my friends are tolerant of this, although I may just be oblivious to it if they’re not.
The second is when I’m in a relationship. When I start to feel comfortable around someone is when I start letting my guard down, especially as you suddenly start spending a lot of time with someone. My coping strategies take a lot of mental effort, to plan and react, and all of a sudden that downtime between that is now shared with someone else. I’ve been accused of being selfish multiple times, but I don’t necessarily think that’s true, or at least I hope not. Selflessness is a quality I aspire towards. But I think when I stop forgetting how to be empathetic, that comes across as selfishness. The start of a relationship is hard too, it’s very intense and that can be tiring. The only long-term relationship I’ve had was with someone I was friends with first, and it gradually escalated into more. It broke down when we moved in together. Maybe I just can’t deal with that level of intensity (much like Saga Norén’s need for a separate room).
Love is scary too. When I first entered a relationship I was worried that my heart wasn’t in it, that I was just going through the motions that society expected of me. It took me a while to realise I had many unexplainable, brand-new feelings that I didn’t understand nor comprehend how they affected me. I think it’s those unexplainable feelings that define love for me (and I miss them).
It’s been difficult at times to write this blog post, but I’ve been thinking about it a lot recently, and I hope that it gives you an insight into my world with AS.