I don’t know how to react to it, and I’m worried that I may not feel enough at the time to make the right sorts of expressions on my face. How am I supposed to look? Am I supposed to tear up? Eugh. The situation is awkward, and I can’t stand being in it.
This is the nearly daily experience of having Asperger’s syndrome, which I was diagnosed with this past August at the age of 38. Shortly after finding out, I read a book called Asperger’s on the Inside by Michelle Vines, a woman who around the same age discovered that the difficulties she had wrestled with her whole life were also attributable to Asperger’s. A friend of mine recommended her as a potential source for perspective after she was a guest on my organization’s podcast Point of Inquiry, and I must say, so many of Vines’ experiences and challenges mirror my own.
Not all, of course. On the whole, I’d say Vines is more interested in assertively establishing friendships and social groups than I am. In her efforts to do so, yes, there are some truly eye-opening similarities between us, but I, so often being burned by the social world, have opted out. She took a different approach, seeing her social struggles as a problem to solve, a puzzle. I wish I had more of an attitude like that.
Rather than go into a deep review of her book, which as you can imagine I mostly enjoyed (though I thought some of the attempts at humor were a little forced), I’d simply highlight some passages that were meaningful to me and reflect on them. This isn’t by any means exhaustive, but a selection of highlights that I felt I had something to say about.
On Aspie emotions:
Another example [of the challenges Aspies face] is the intense difficulties we Aspies can have with emotional regulation, which I’ve experienced firsthand. Emotional regulation is a technical term I’ve seen in online articles—sorry to feed you technobabble. In simple terms, it means that when we feel an extreme emotion, such as sadness, we can stay in that emotionally extreme state for a long time with little ability to make the feelings go away.
This is definitely true for me. Often this manifests just as you’d expect; as panic, intense anxiety, or overwhelming depression (or all of the above).
Sometimes it expresses itself far more deeply within me, which is often interpreted as my holding something resembling a grudge, “dwelling,” or rudely closing off entirely. But the reality is that sometimes the feelings are so powerful or painful, the cognitive effort required to just stay afloat means I have to shut off everything external, and present a kind of low, blank disposition toward others. It’s almost as though I’m booting into “safe mode” so I can devote all my processing power to working through my overwhelming feelings. I’m sure it looks weird.
On appearing normal:
So, as you may have guessed, I, like many Aspies, was not born with an interest in fashion and clothing, or at least it wasn’t there when I was young. In my childhood and early teen years, I remember being teased occasionally on free dress days for wearing the odd daggy[19] thing my mum bought me. No one told me that you don’t tuck your T-shirt into your jeans! What’s wrong with black shoes and white trousers? Or the fluorescent-pink parachute tracksuit that my mum got me for my birthday?
Oh how I wished I’d had some guidance on this kind of basic social blending knowledge, just an early seed of understanding that other people would care so goddamn much about this kind of thing, and that in order to get through the day with one obstacle fewer, it’d be wise to just check these boxes.
But no one told me. No one told me what to wear, and I didn’t care in the least, and was in fact barely aware of what I was wearing, so people made fun of my clothes. No one told me what to do with one’s hair, so it got too long and out of control, and people made fun of my hair. In southern New Jersey – which is largely populated by olive-skinned, beach-loving people of Italian descent – having a tan was considered table stakes for presentability. But I abhorred the sun, the heat, and the overall beach culture, and my genes had given me extremely pale skin that burns very easily, so I was made fun of for that all the time as well.
Also, I’m rather short, but I guess there was nothing I could do about that, though my grandmother used to tell me I failed to become tall because I refused to hang upside-down by my knees on the jungle gym. So I blamed myself for being short, too.
On communicating one’s challenges:
I started going through possible ways she and my father-in-law could respond [to my difficulties with people]. Was I going to get a talk on how I was “viewing everything wrong” or how I “need to change X and just get in there and do Y and stop overthinking it”? I guess I expect these sorts of comments, because they’re the usual reaction I get from people when I make little hints that something might be hard for me. People so often downplay my issues. “Everyone else deals with Z, so you should be fine dealing with Z too.” “Nobody likes working, but we all do it.” So that’s what I waited to hear.
Asperger’s or not, this is a common refrain whenever I’ve discussed my difficulties in school, in jobs, or anywhere else. “Everyone feels that way sometimes.” The implication is, of course, that since everyone else deals with it, and yet here I am particularly aggrieved by it, there’s something wrong with me, I’m especially weak or lazy or overly sensitive for no good reason. I’m having trouble, and it’s my own fault for being effected by it.
But no, everyone doesn’t feel like this. Not like I do.
It’s interesting that I made the automatic assumption that I need to debate to justify my views and people won’t naturally respect my opinions and feelings. Being me and explaining myself has typically been so exasperating.
Preach. This is a big reason why I think I overshare on my blog and on Twitter; it’s where I can, at my own speed, work through my thoughts and feelings and communicate in far more precise way. This isn’t to say that it’s always successful. But it’s better than most other means of communicating for me.
On processing information:
I am astoundingly bad with directions. I have just the worst time navigating through and orienting myself in space. This not only applies to things like how to drive from one location to another, but to things like depth perception, where parallel parking induces sweats, or playing video games (especially first-person perspective games) where I am constantly confused about my location in relation to everything else going on.
And when directions are explained to me verbally, my brain simply can’t process them. I try, I try very hard. I understand the meaning of the words being said to me, but it’s almost as though my brain immediately garbles the words so that as a whole, they are just gibberish. Even just being given a short list of basic instructions or tasks is a big mental load for me, and I have to concentrate intensely, repeat things out loud, and almost rehearse the actions in my head to be sure they actually make sense to me. Imagine how frustrating that is for my wife, who before this Asperger’s business couldn’t help but assume I just wasn’t listening.
Here’s Vines on this topic:
Sometimes, we just can’t function with so much sensory and verbal input and real-time speed. Or if the topic is not of interest, it may be hard for us to keep our focus on it in the face of other input. And I particularly wanted to bring it up in this chapter because, for such a long time, I really thought it was some sort of memory glitch that I had, and I used to kick myself for how bad I was at grasping and remembering the little details that people would tell me about themselves. I must be selfish, right? To never be able to remember the details of other people’s lives? Everyone else cares enough about other people to remember that stuff. What was wrong with me? It took me a long time to figure that one out—and a lot of guilt, I might add. So, when does this so-called memory issue affect me? Well, unfortunately, I can be pretty bad with directions.
Yep. And I’m also the same with details of others’ lives. I care about other people, of course, but I also frankly suffer from an acute lack of curiosity about those details. So they never, ever stick.
On being outdoors:
How many times have people said to me, “It’s a beautiful sunny day,” or, “I hope the sun will be out tomorrow,” and I’ve privately thought, “I really hope not! I hope for a pleasant, overcast day. Please give me miserable weather! The kind that makes me relax and feel at peace.” I know that other people love frolicking out in the sun and enjoying the brightness of summer, but for me, having that direct sun on me drains my energy and has always made me, subconsciously, that little bit tenser.
Yes, yes, yes, yes, yes. See my essay on the seasons from a couple of years ago, long before I knew anything about my Asperger’s.
On coping in the workplace:
I’ve had some jobs I’ve deeply, deeply hated. I know, everyone has. But while these jobs caused me unspeakable anxiety, stress, and depression, I’ve often found that I couldn’t communicate to others why I was so unhappy. When asked, “What didn’t you like about your job?” I’d find myself almost inventing reasons, or exaggerating small grievances, because I couldn’t find a way to express what was really wrong. Here’s a window into that from Vines’ own work experiences:
Within a month of starting, I began to dread going to work. On the train heading in, I would have dreams about the train crashing and sending me to hospital or the city being bombed (preferably overnight while empty of people!). I became depressed and numb Monday to Friday and spent most of Sunday crying, feeling ill because I had to go to work again the next day. I was in no way “okay.”
This all rings very true. In face, the Sunday evening stress sessions became so common that my wife gave them a name: The SNAS (pronounced “snazz”): Sunday Night Anxiety Show.
When I mentioned it to people, I frequently got nonchalant replies such as, “Yeah, nobody likes working, but we all have to do it.” So after a while, I learnt to stop complaining. At the time, I had no idea that I had Asperger’s. And while I always had the sense that it must be worse for me than for other people, I couldn’t justify that feeling. …
Every place I worked, I had an overwhelming desire to get out of there. I had trouble focusing on the work and interacting with people at the same time. I would feel frustrated or angry inside and often felt like snapping at people (although I didn’t). I dreaded having to do tasks that involved dealing with unfamiliar people. It exhausted me.
Take special note of that last thought, about dealing with unfamiliar people, and then consider that I have spent most of my post-theatre career as a PR director. Yeah, great move, right?
The paragraph continues:
I disliked having to figure out how to do new things. Most of the time, I was given new things constantly, and I really had to force myself to start them. I had trouble remembering verbal instructions and needed to write things down. … In hindsight, perhaps I didn’t do and say the right things to project the best image of myself and promote myself to others. I needed to do things my way and plan my own time. Being micromanaged by others was too stressful. I felt sick and started to hate going to work. All I could conclude was that the common factor was me.
There is a terrible fear I have of being scrutinized by coworkers or bosses. Like Vines, I want them to trust I will get the job done, but I can’t bear to have my methods or practices judged. Why? Because I always assume I’m doing it wrong, getting away with something.
Dr. Loveland, who diagnosed me, explained that these workplace experiences I describe weren’t uncommon for people with Asperger’s and that she’d heard stories like mine before. She explained to me that that “sick” feeling I talked of was the result of bottling up frustration and anxiety all day, every day. Built up over time, I suppose it manifests physiologically, causing me stomach upset, low weight, and a general feeling of being unwell.
And this is why I spent my aforementioned post-theatre career in a state of sub-optimal health, to say the least. It got so bad when I worked for the 2008 Hillary Clinton presidential campaign, with the 15-hour days of intense stress, scrutiny, and pressure while packed in a giant room with people (many of whom were themselves very intense), I fell apart. It resulted in a trip to the emergency room, a scare that I might have brain cancer (I didn’t), neurological problems that manifested in my limbs and fingers, and a full-body muscle spasm or tic that I have to this day.
Had I known I had Asperger’s then, I never would have taken that job. Or I would have at least found another way to do it.
On talking to people:
I don’t usually want to, unless I have a specific reason to be curious about them, or I have some kind of investment in them, like a close friend or family member. So I don’t talk a lot around people I don’t know well, unless of course I’m the only one there, or I feel there’s an expectation, and then I blather like an imbecile.
And as I mentioned earlier, a big part of the problem is that no matter how much I try, no matter how much I know I should, I simply can’t muster any curiosity about other people. And that’s not a good start for making small talk.
Which I hate.
Here’s Vines on that:
We find [small talk] mind numbing, lacking in content, and tiresome, because we’re mainly tuning into the details and not focusing on the social or emotional purpose of the conversation, probably in the same way that typical people can find our conversation intense, overly technical, detailed, and exhausting. For me, it’s hard to come up with anything to say in a conversation that, on the whole, seems lacking in purpose.
I have frustrated many a significant-other over this. “Why were you so quiet?” and “Why didn’t you ask anybody any questions?” Well, because I didn’t have any questions. I didn’t realize there was a kind of social ritual being played out.
So one tactic I might use to fill verbal space is to talk about my own take on a topic, or my own experience, and I find that this very often falls rather flat. Again, turns out it’s because I haven’t tuned into what the whole ritual is about.
As an Aspie it feels natural to respond to a conversation by relating our experiences, especially when the topic is emotional. We’re basically saying, “I know how you feel/what you are experiencing because I’ve had a feeling/experience like that myself.” To us, it’s a display that we’re actually connecting to a person’s feelings and are bonding with them. However, typical people don’t need to have had a similar experience to feel what a friend might be feeling, and they don’t need to relate that experience to show they understand. Changing the topic this way on occasion is fine, but when we do it frequently, all a typical person hears is, “me me me.”
Alas.
On self acceptance:
I am not close to being in the place Vines has achieved. But I aspire.
What I really feel the need to say here is that there is nothing wrong with me. I’m just different. And any difficulties I have are the result of trying to live in a world where everyone around me is so different from me, not because I myself am faulty. I think Tony Attwood hit the nail on the head when he said, “People don’t suffer from Asperger’s Syndrome. They suffer from other people.” I’m not “wrong.” I’m everything I’m supposed to be and more. But both the social world and the business world that I live in aren’t set up for someone like me. I’m the proverbial square peg trying to fit in a round hole, and I can’t function effectively like this. I have so much potential to be useful, creative, even ingenious. The world just has to find a way to utilize me better. …
…
It doesn’t matter what label you carry or what cause you stand for. If you approach the world with an assured attitude and pride in who you are, other people will love and respect you for it. It’s only when you hide things about yourself that you convey that something is wrong or shameful about you that needs to be hidden.
The world isn’t set up for me. And I can’t make the world change for me. But maybe I can stop attacking myself over the dissonance I perceive. I play my song, you play yours. I hope I can.
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Near-Earth Object 