How do I make sense of the conflicting aspects of my personality? That’s a question that has been occupying me on and off since I began to introspectively analyze myself following suspicion and later confirmation that I am autistic.
Believe me, being in a non-verbal state is as frustrating for me as it must be for anybody trying to communicate with me. It is usually a symptom of stress, of emotional overload, so the worst way to react is in any fashion that increases my stress – becoming emotional, speaking louder or more insistently, coming too close and encroaching on my personal space. If you must try to interact with me at least speak quietly, unemotionally and without approaching too closely or making sudden movements.
Any hint of threat, whether it is a raised voice or unexpected proximity, only makes me feel more anxious and ensures that the episode will last longer. If I do manage to force some words out then don’t assume I’ve come out of it – this can be a delicate moment as I start to regain some control and pushing me – giving me the third degree – will only send me deep back down into my uncommunicative state.
Above all, don’t take my lack of responsiveness as a sign of indifference, ignorance or antipathy towards you: it is not. It is simply that my faculties are fully occupied dealing with my own mental turmoil and there is no spare capacity to handle interacting with people. I don’t enjoy being non-verbal: because of the continual commotion inside my head it is mentally exhausting, and the muscular tension that results also causes physical tiredness. It is absolutely draining and leaves me in need of peace and quiet to relax. The fact that I might have been sat there, hardly moving or uttering a word, for hours does mean that I am ready to jump back into “normal” activities from the get go. Without some down time to recuperate it is very likely that even a small trigger will push me back over the edge.
Recognition of the causes and effects involved coupled with a little understanding makes it quicker and easier for me to work through the effects of the stress overload, and that has to be a good thing all round, doesn’t it?
“Yeah, mumble mumble last night mumble mumble meal mumble Friday?” Oops. You just asked me something. What did you just say? Well, based on what you were talking about before – the bits I managed to catch – I guess you just asked me if I want to go out for a meal Friday. I’d better see if I’m correct – ask a hopefully relevant question and see what you say: “A meal this Friday? Where?”
At this point I either come across as “normal”, following the conversation, or I just dropped a spanner in the works and confused the heck out of you. And I never know which it’s going to be! The problem is that if there’s any distraction – background noise or movement in particular – then I fail to distinguish the speaker’s voice. I know they’re talking to me, I can see their lips moving and hear sounds, but even concentrating intently I can only interpret the odd word and have to guess the rest from context.
More often than I care to admit somebody will say something to me and I’ll respond with some acknowledgement. It’s several seconds later that I finally work out what they said and can tell whether my response was appropriate. Or whether I just looked stupid again.
See if you can work out the meaning of this short extract. To make things easier I’ve left in most of the nouns:
__________ impairment ___ social _________ stereotyped and restricted patterns ______ activities and interests, and _____ally signi_____lay in cog______opment or general _____ language.
This is from a description of Aspergers Syndrome that I’ve quoted previously. I admit I’ve been selective in the bits I blanked out, but this is only for the purpose of illustration. In a real situation there would be snatches of other conversations interleaved with this one, and the whole would be obscured by background noise:
The thing is, I don’t have hearing problems. I can pick up faint sounds like the clock ticking at home. I score in the average range in hearing tests. But if somebody says something while the TV is on – or there’s music playing or other conversations going on around us – then although I can hear all the sounds, I can’t separate them very well. It’s a problem with processing the sensory input and I find it hard work and very frustrating, so I often keep out of conversations in noisy environments. In fact I prefer to avoid noisy social environments altogether.
With all this it’s no surprise I prefer to communicate in writing – through email, text or similar mechanisms. The words are in front of me, not obscured by noise, and there is no need for an immediate response. I can take the time to compose my reply, re-reading their comment if necessary and thinking of le mot juste – the right word that will exactly convey my intended meaning.
I suppose, people being people, that other Aspies have tried to explain how the condition affects their functioning in some way, such as difficulty reading non-verbal signals, only to hear, “I, like, get that too, you know: maybe I’m a bit Aspergers.” Even after ignoring the involuntary wince that is triggered whenever language is tortured in my presence, I struggle to respond to that. While I don’t want to dismiss out of hand the possibility that they might be correct, it can be hard to explain how AS (and autism) are about more than being awkward in social situations.
What I want to say to these people – but can’t because my AS makes it too difficult to formulate an adequate response without zoning out for too long and dropping out of the conversation – is that I doubt very much whether they do have AS. AS is not like a salad bar where you get to choose how much of each symptom you want. It’s not something I chose to have – I have it, live with it and cope with the challenges as best I can. Each symptom taken in isolation does not define the condition: it is called a pervasive disorder for a reason. It is a set of symptoms, usually with varying degrees of severity, and having AS means you pretty much got the lot.
What is “the lot”? To quote the Wikipedia article which summarizes the DSM-IV diagnostic criteria,
[…] a pattern of symptoms rather than a single symptom. It is characterized by impairment in social interaction, by stereotyped and restricted patterns of behavior, activities and interests, and by no clinically significant delay in cognitive development or general delay in language.
This doesn’t even attempt to explain why these symptoms occur: it is just a “pattern” that recurs and has been labelled as Asperger Syndrome. The label is a convenience, nothing more, to cover the effects of particular cognitive differences. It does not describe the differences between individuals with AS, the varying degrees of difficulty we face in everyday situations. Couched in the most general terms it says nothing about how it feels from the inside – how exhausting it is to deal with “normal” life, to feel so often that we have to consciously act “normal” with other people so that we are not seen as alien, to face censure for “inappropriate” behavior when we don’t conform to their “normal” standards.
I doubt that any sighted person would describe themselves as “a bit blind” because they close their eyes occasionally. Likewise, they are not “a bit Aspie” because they sometimes feel awkward in social situations or have a fanatical interest in, say, football. There is evidence that the Aspie label is somehow becoming seen as “cool” – I can’t understand why this should be so, because I know first-hand that the reality is that even in a mild form it causes significant difficulties for those directly affected, and also indirectly for those such as partners in relationships.
Saying “No” doesn’t come naturally to me. Whenever people come up to me and ask me to help them in some way my instinctive response is to go along with whatever they want. I actually feel anxious even thinking about refusing their requests – I worry that refusing will lead to argument or confrontation.
So I end up doing things for others – not that I mind most of the time – but it takes time and energy that I ought to be spending doing other things. It can be a problem for me at work when I get people coming up to me or phoning me to ask for technical assistance when I am in the middle of some other piece of work: I end up taking longer to complete my tasks because I’m spending time on unrelated issues. I even raised it as a problem at my recent annual performance review.
One of the biggest problems with interruptions at work is that it can take me out of a flow state which then means I spend fifteen minutes or so trying to get back into it. Just four interruptions over the course of a day can lose me about an hour of productive working time.
I guess that invariably saying “Yes” to people actually makes things worse for me because it encourages them to ask for favors more often. In contrast I very rarely ask anybody to do things for me – I feel uncomfortable imposing on them.
I need to learn how to say “No” without causing myself stress as I fret about the possible consequences. Experience tells me that a simple, blank refusal doesn’t work in most instances – particularly in a social situation. The person will just repeat the request, often with some attempt at emotional coercion – a deliberate attempt to engage my sympathy. And it works – I then feel that I would be letting them down by continuing to turn them down, which upsets me. It could be labelled emotional blackmail. I consider it a particularly devious, underhand means to get one’s own way, but it seems to be a depressingly common tactic.
Some people have suggested that I invent some prior commitment that would preclude my assistance at that time; however that would mean lying which makes me even more uncomfortable so it’s not a viable option. If only people would take a simple “No” as an answer and drop the matter there and then instead of arguing about it and trying to change my mind. I really need to find some stress-free way to refuse, because otherwise I will just continue to take the (for me) easy way out and assent to their wishes.
I have an involuntary urge to jump in and correct people when I notice errors in what they say. It hasn’t escaped my notice that this often irritates the person I correct, but I have a hard time checking the impulse.
I’m not sure whether the cause of this is pedantry, perfectionism or simply attention to detail. Too much attention to detail sometimes because I end up getting distracted from the conversation by concentrating on the mistake. Interrupting the speaker to correct them also tends to distract them from what they were saying, halting the conversation.
Thing is… I’m trying to be helpful when I correct people. Accuracy is important to me – more important than saving somebody’s feelings – and I subconsciously expect that other people feel the same and would appreciate my efforts. Publicly correcting people can engender a hostile response – it embarrasses them, triggering a defensive reaction. In conjunction with my social anxiety, fear of this kind of response prevents me from speaking up in front of strangers. But it doesn’t prevent me feeling very uncomfortable about the error.
It’s the same with errors in writing – things like shop signs that might have spelling or grammatical mistakes. I have been known to take a pen and make editorial corrections to notices – the urge to do so can be impossible to suppress.
I find that people mistake my motivation – while I only strive for accuracy, they see me as a know-all who wants appear superior. They may even see me as arrogant. For the record, I’m not trying to impress people with my knowledge or make them appear ignorant and stupid. I just have an obsession for precision in language.
In your world the light is cheerful,
In my world the light is painful,
Sounds caress: a background murmur.
Sounds assault: a foreground clamor.
A crowd of friends; you rush to join them,
A crowd of friends; I can’t avoid them,
Slip into the conversation.
How to join the conversation?
You read the tone and body language,
Non-verbal cues: a foreign language,
Instinct means no mental load.
Too much input: overload.
You do these things without a thought,
I try to cope, my efforts fraught,
The world and you: a perfect fit.
The world and me: it won’t remit.
I spent for too long at the hospital yesterday accompanying my wife as she went through a series of tests and scans. The X-Ray/Ultrasound department has recently moved to a refurbished suite and it’s all new and shiny.
Too shiny. The lighting makes its white walls harshly bright. It’s all straight lines and square corners with no relieving softness. I know hospitals are clinical – obviously – but do they really have to look so cold and unfriendly? I was feeling on edge when we got to the department reception desk. Luckily my wife dealt with the receptionist – with the bright lights, echoing footsteps and other voices all claiming my attention I couldn’t concentrate on what he was saying at all. We got directed to a small waiting area off one of the corridors – an alcove with a row of six chairs on each side, facing each other. About half the chairs were occupied; I took one at the end away from the corridor with my wife sitting next to me.
I feel uncomfortable in waiting rooms at the best of times; I get very anxious when people are sat looking at me. And I don’t like to feel I’m being overheard when I talk to somebody, so I was inhibited from speaking with my wife. I ended up just sitting there, stimming in a fairly subtle manner by tapping one thumb on the other with my hands together, fingers intertwined – trying to keep reasonably calm. However the pressure of having other people facing me in such a small space was making me increasingly anxious. (I have similar problems using public transport – that’s why I will walk miles rather than catch a bus.)
So there I am in this small waiting area with too many strangers looking at me, the harsh light making me feel even more exposed and uncomfortable. I can feel I’m getting close to a sensory overload. And then somebody goes through the door in the corridor just outside this alcove. How to describe the noise made by that door? If you’ve seen those old horror films where the castle door slowly closes to the accompaniment of a tortured squeal from its stiff, rusted hinges you’ll know exactly what this door sounded like. That did overload me. I had to shut my eyes every time that door opened or closed because it was as if somebody was shining a spotlight into them. It hurt. I was starting to ache from the tension across my shoulders and up my neck.
I thought to myself that they couldn’t have designed a more effective environment to torture somebody with sensory processing issues if they had tried. I just felt like curling up in a corner and shutting down but I had to keep myself going to keep my wife company. By the time we got out of there I was tense and exhausted and just wanted to rest. It took a massive effort to avoid shutting down and left me drained. I’m not sure how much support I gave to my wife but at least I was there and mostly responsive. I find it hard to believe that a hospital could get its design so wrong in terms of providing spaces for people that are comfortable and promote a calm state of mind.
It’s strange, but my behaviour changes depending on what I’m doing. I reluctantly went to the usual pub quiz last Tuesday night without my wife, who wasn’t well enough. This is the same pub I work in at weekends. When I’m behind the bar, being a barman, I have the confidence to speak to people. Because of the context of the job I can interact with complete strangers. So why do I feel so darned uncomfortable when I’m on my own in front of the bar?
I got there a good hour before the quiz started and the place wasn’t yet busy. I probably knew almost everyone in the there. But I didn’t feel at ease joining anybody’s group. I did hover at the edge of one group for a while but ended up sat on my own at the usual table reading the news on my phone. Even when the other members of the team arrived I felt isolated. It’s not that I wasn’t included; it’s just that I always put myself under pressure because I feel that I should be active in conversation. If it hadn’t been for numerous people asking after my wife’s health I don’t think I’d have said very much all night.
So why does it feel so different among the same people in the same environment depending on whether I’m a customer or a barman? I don’t really know. I do know that I hate to take a break while I’m working because for half an hour I’m out of barman mode and basically just a normal customer. I usually come back early from my break and hope I won’t get sent back out again. I guess it sounds weird but that’s me!
Even when I’m on my own behind the bar with a pub full of customers I hardly ever feel intimidated – I feel safe. Is it the solid counter between me and them? I don’t think so. I suspect it’s because the interactions are constrained and I understand the boundaries – I know what to expect from the customers because they just want to be served. When I’m in there as just me – no role to assume – there are no such boundaries.
I realise now that I can handle much more socially if I am fulfilling a role than if I’m just being myself – exposed, unprotected. In a way these roles are like masks that I can hide behind.
I don’t know about anybody else but I have a big problem when events fail to turn out the way I expect. It’s one reason I try not to plan what I’m going to do in advance. Take what happened yesterday for example – I knew there was mince in the fridge that needed using along with tomatoes, mushrooms, onions and carrots. So I thought, “Pasta sauce!”
And then I got home and my wife had somehow managed to cook me a chilli despite her feeling so ill. Did I react with gratitude? I’m sorry to say I didn’t. I was knocked off-balance because some of the ingredients I had been going to use for my pasta sauce had been used instead to make this chilli. I managed not to get angry or melt down – took some self-control – but I did complain. I knew my reaction was upsetting my wife but I couldn’t stop myself. I tried to explain that it was the fact that my plan had been scuppered that had stressed me but the damage had been done.
I must say that I ate the chilli and enjoyed it very much. But. It. Wasn’t. Pasta. Sauce! How do you explain this kind of feeling to somebody who can handle change? That despite appreciating the effort she had gone to, I was unable to get past this clash – this discrepancy with my mental image of myself cooking a different dish. It’s my normal reaction to change – I try not to respond in this way because it hurts or offends people I care about but it causes me stress and I find it very difficult to hide. That would be the same as lying which I also find very difficult, even to save people’s feelings.
In this case I got over the worst of the feeling quite quickly and apologised – this kind of thing has happened numerous times before so my long-suffering wife is sadly used to it by now – but I’ve still got a little lingering disquiet that things didn’t happen as I expected. And I feel bad about not showing my gratitude from the outset. I know it’s a shabby way to treat somebody who’s made an effort to do something for me but I really don’t know how to get past the intense disappointment and stress I feel in these situations – the feeling is so intense that it swamps any other, more rational, thoughts I may have.