Aspergers Blues

Aspergers Blues

It’s hard to write about depression. The symptoms keep getting in the way of my words, and for somebody who loves words as I do that is disheartening.

Where to start? Well, I’ve been suffering bouts of depression for years. It can last for a few hours or several days but it is not usually an unrelenting pit of despair. I have spells when I’m feeling, if not exactly “up” then at least neutral. But then I’m back down again.

These days I don’t become inclined to harm myself, although in the past I’ve cut myself and taken handfuls of pills (my body didn’t go along with the plan and I just vomited). Instead I usually seek solitude, which can be easier said than done.

I want to cry but my eyes remain stubbornly dry. I want to curl up in a dark corner and hide from the world. I want to be left alone and I want somebody to just hold me and make me feel safe and protected. I get so tense that I feel as if my muscles are locked in place, yet I have so little energy that I can’t bring myself to stir. I detest the sensations, feeling a lack of sensation. It’s a complex, contradictory, utterly confusing state of mind.

It’s getting to the point where I’m reluctant to relax and enjoy myself because I know that sooner or later I’ll come crashing down again, and the shock of the contrast is like jumping into a cold plunge pool from a sauna. I’m forever waiting, anticipating and expecting the next low point.

Of course there are triggers. Rocky patches in relationships. Anything that causes stress and exhausts me leaves me vulnerable. It’s a common aspect of Aspergers that we have limited physical and mental resources: we tire easily, and that state of exhaustion means that problems quickly become overwhelming.

What can be done about it? The obvious answer would be to avoid becoming so worn out – I might even say burned out – that I can barely function let alone stave off the blues. My particular problem lately is that as the sole carer for my wife, who’s not in good health, I have no respite. There’s no break from it, even if my strong sense of duty and responsibility would allow it.

I missed a couple days of work last week because the depression hit again after becoming exhausted dealing with my wife, who is also feeling great frustration and low spirits because of illness. It doesn’t help that I pick up the echoes of her feelings – who says Aspies don’t have empathy? – but I don’t have the mechanisms to cope with these reflected emotions.

In fact, the night before I had spent two hours or so in the company of a friend and left feeling happy… until I got home and returned to the stressful overload. I’m not coping well at all lately: it’s all getting to be too much of a strain but I’m stubborn as an old mule and I won’t give in until my mind and body call an involuntary time out. Unfortunately that’s exactly what happened and a week later I’m still not really over it, still depressed.

There are no silver bullets. There is nobody who can wave a magic wand and fix the problems. Miracles don’t happen (even if, like my wife, you have strong religious beliefs). I don’t believe there is any higher purpose to suffering: adversity doesn’t make you strong. It just grinds you down until you haven’t the strength to even lift your head from the dirt.

The funny thing is that now I’m back at work I can get focused on the job and function normally on the whole, although I’m feeling more tired than usual and it’s taking me longer to get ready in the mornings – I’m not moving so quick. A case of special interest to the rescue, possibly.

Time flows like molasses in winter;
I am caught in its viscous embrace.
Struggling to break free
As a fly in a web,
Waiting for the poisonous attack.

I am a cornered mouse,
Teeth and claws no threat
To the predator stalking me.
The black cat, Nemesis,
Will not be driven off.

To fight an invincible foe,
To cast the die, burn the bridge
And cross the Rubicon; a dream
Wherein I cast off the fetters
And rise, Prometheus unbound.

Saying No

Saying No

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.

Not Guilty

Not Guilty

Just when you think you’re getting the hang of acting “normal” something happens to bring you back to reality with a bang. I got wrongly accused of doing something bad the other day – the details don’t matter. It was something I would never dream of doing; nevertheless I stood accused of it.

I reacted naturally, which is to say I failed to make eye contact, I displayed “inappropriate” facial expressions such as smiling, I didn’t respond immediately. All this was taken to be a display of guilt by my (neurotypical) accuser. What can you do in such a situation? The more I protested my innocence the more I was told that I was “acting guilty”.

I’m an honest person: I feel too uncomfortable to contemplate lying. Besides which, I find it hard enough to remember the details of what did happen, never mind trying to remember some invented scenario. Being accused like that and then not being believed – having my response taken to be evidence of deceit – was deeply hurtful.

My accuser in this case was somebody who prides themselves on being a good judge of character, on having great empathy. But there was no sign of any of that when dealing with me. Their instinctive reading of non-verbal cues led them totally astray when faced with somebody on the autistic spectrum. I’m led to believe that this subconscious empathy as displayed by most neurotypical people relies on the person being observed also being neurotypical and reacting in a “normal” way. They can’t read the signals correctly if there is any deviation from this – their unconscious assumptions fail to hold true. The trouble is that with the assumptions being unconscious, there is no realisation that they even exist.

It’s been said before elsewhere, but neurotypical people lack empathy when dealing with autistic people. They don’t often notice when we feel anxious or threatened, they misinterpret our feelings based on our behaviour. They seem to have an off-the-peg, one-size-fits-all model of human behaviour, while I (I can’t speak for other people on the spectrum) build a bespoke model for everyone I know.

Generalizations don’t work with outliers – it’s true of all statistical models. And in statistical terms, people on the autistic spectrum do fall outside the normal range when it comes to behavioural traits. That’s “normal” as in an average across a population. I’m quite aware that I have some areas where I fall within normal bounds; others, especially relating to social skills, where I’m well outside.

I strongly resent my natural reactions to an accusation being taken as signs of guilt or evasion. I don’t think I should have to conform to neurotypical standards of communication to be believed. Where was the vaunted empathy of this person in my case? I’d call it a spectacular failure. Did they end up enlightened? No. I just got a dismissive “you’re weird”. They weren’t willing to take the time to analyze and understand me – time that autistic people have to take if they want to interact more fully with neurotypical people. I don’t think I’m wrong to feel angry about this.

Self-censorship

Self-censorship

Censorship. It’s a word with many negative connotations, associated with authoritarian states and restriction of freedom. But on an individual level it is something most people practise without even being aware of it. Things left unsaid. It may an attempt to spare somebody hurt; it may be to avoid leaving oneself open to attack for voicing an unpopular opinion.

Sins of omission. Being unwilling to speak out because of the possible consequences. Is this a bad thing? Does it depend on context? Is it acceptable not to tell somebody something because you feel it may hurt their feelings? Is it unacceptable to keep an opinion to oneself because it differs from the majority view? Or is that simply self-preservation?

I’ve been thinking about this recently because I worry that being open and honest in describing how I’m feeling and the difficult times my wife and I are going through might upset or hurt people who care about us. I don’t know the answer to this one. In general I am opposed to censorship and in favour of freedom of speech. But do I have any right to decide to withhold information that could affect other people’s view of me? To offer them an incomplete picture? Doesn’t that equate with dishonesty? I feel uncomfortable if I contemplate offering false information or deliberately omitting details. If the two situations feel the same doesn’t that mean they are the same? I believe they are, at least in my mind.

So I’m left with this conflict between wanting to avoid causing anybody distress and being open. So far I have leaned towards being open. I am aware that this can cause some of my readers to feel sympathetic pain and that is a cause for concern to me. But I believe that to hide the difficult facts and only write about the good times would be misleading. It would give the impression that I live in some ideal, perfect world where nothing bad ever happens. The truth is that like everybody else I face a range of situations, go through highs and lows, triumphs and disasters. I strongly believe that I have to present an accurately balanced account; I try to do so here.

I apologise if anybody has found what I write here to be distressing; that has never been my intention. But that is how life can be at times. Would life’s highs provide such elation were it not for the contrast with the lows?

Empathy and Selfishness

Empathy and Selfishness

I fear I’ve been behaving selfishly recently. I don’t want to make excuses – just try to explain. As I wrote recently, my wife is very ill at the moment and her physical pain, exhaustion and isolation are causing severe depression.

I find that I resonate with how she is feeling. I feel her depression like a deep, black pit; like a hundred hooks in my insides drawing them down into the depths, leaving a void yearning to be filled with anything other than the aching emptiness. I find it very difficult to function in the face of such intense emotion – and I am only feeling it second-hand, picking up the echoes of what my wife is experiencing!

I just don’t know how to handle the situation; these feelings. I don’t know what to do for my wife to help her with her depression. I feel lost. So, selfishly, I have been withdrawing and taking refuge in familiar routines. I’ve been alternately detached and irascible with her instead of being supportive. I know that’s wrong and I want to be supportive – it’s proving to be a big challenge.

My reaction to strong emotions is not at a conscious level – it is sheer gut instinct. Such feelings push the buttons of my primitive fight-or-flight response and my conscious mind has to fight hard against the tide to overcome these basic instincts. It doesn’t always succeed and that is when I overload.

Imagine, if you can, how a pet dog would react to its owners having a row in front of it. The dog can’t understand what is causing the situation but can pick up the emotional overtones and becomes distressed. Perhaps it slinks off, tail between its legs, and cowers in a corner, whining. And over time the dog will become more wary and it will take time and effort to overcome its reluctance to approach, its fear of being in that situation again.

Neurotypical people don’t react like that dog, and so don’t expect that other people would either. But some autistic people don’t have the ability to handle these emotionally-charged situations. We can’t rationalize the causes when we’re experiencing such distress. All we can do is react instinctively. There’s a very good article on this subject on the Autism and Empathy blog.

When I fail to react to somebody in the way that they expect, when I react in a way that appears unfeeling, irrational, selfish – that is often the result of all too much feeling on my part. Feeling – emotion – so strong that I can’t rationally cope with it and my mind regresses to a more primitive mode of operation: instinct, the primitive drive for self-preservation.

Mourning Strangers

Mourning Strangers

Why does the passing of certain people affect me more deeply, while others may depart with scarcely a thought? I’m not talking about deaths of family or friends here, I mean people whom I have never met and know only through their work in whatever field.

What got me thinking about this was reading yesterday of the death of Dennis Ritchie, a major figure in the world of computing. I started wondering why I felt sad on this occasion, while I was emotionally untouched when I heard that Steve Jobs had died. After all, I never met either of them – I never even saw them in the flesh. And I generally have neutral feelings towards strangers – people I don’t know.

Was there something about Dennis Ritchie that created a connection for me? I think so. When you experience works created by somebody, I believe you pick up aspects of their psyche. It might be from reading what they have written, seeing their visual art, using tools that they have created. An author’s voice is preserved in their writing and transmitted by the act of reading those words.

The second programming language I learned was C, created by Dennis Ritchie et al. The canonical reference book for the language, a work I know very well, was co-authored by Ritchie. And through his involvement in the development of the Unix operating system, there are aspects of him reflected in parts of that and derived works. So despite never meeting him, I do feel a degree of connection, of identifying with him – I feel an echo of him from his works and through that there is a sense of familiarity.

I don’t know how it works for other people – I have known people to feel grief on hearing of the death of some “celebrity”. I guess they watch them acting on TV or read about them in magazines and through that feel that they know them. That doesn’t do it for me. But somebody like an author or an artist with whose works I am familiar – then I feel that I have gleaned an insight into their mind from those works and in a small way I have begun to know them. At that point an emotional bond has been made. For me that is a prerequisite for a sympathetic response rather than just an intellectual one.

That is why I cannot mourn a stranger. As long as they remain a stranger I am unable to respond to their situation except in an intellectual way; until I gain some insight into a person they are just another grain of sand on the beach, indistinguishable at a glance from any other. I’m not saying that I have no feelings towards people in general – I treat them with respect and compassion. But I don’t have any curiosity about their lives; I don’t lose any sleep worrying over them.

When I see reports of some natural disaster on the news I recognise intellectually that it is a difficult, frightening situation for the people involved in it and feel a desire to help on the basis of our shared humanity. But I am unable to grieve for their dead: I did not know them. The images do not directly cause me emotional pain. I can reason about how it might feel to be involved in such a situation – it is an intellectual exercise. I need to analyse their situation, find parallels from my own experiences and consider how I felt in those circumstances to consciously develop an empathic response. But I have found that mourning – grief – is far beyond this in terms of intensity. I can feel sadness or regret  for a stranger but I can only mourn those I have a strong enough bond with.

Caring

Caring

When this is all over and the dust has settled I am most likely going to come down with a bang.

My wife suffered serious complications after a minor operation Tuesday. Her blood pressure dropped to dangerous levels at one point and it was only the timely intervention of the doctors at the local hospital that saved her. She came home the next day but is still very ill and in pain.

She has to rely on me to care for her. It’s not easy for either of us – she has always been a very independent woman and asking for help does not come easily. I suspect I am misreading some of her signals: I see the anger at the surface when I should realise that her fear and pain is causing it. It’s difficult for me to be sufficiently detached to properly analyze her state of mind – to properly empathize requires that I, paradoxically, first have to distance myself so I can be objective.

I feel so helpless: there’s nothing I can do to take away her pain, to make her better. It will just take time. All I can do is try to make sure she’s got everything she needs to hand and all the household jobs get done. I’m not very good at it – left to my own devices I struggle to look after myself, never mind anybody else. I don’t feel as if I’m doing enough – I think that I’m just reacting to situations that arise rather than being proactive and forestalling them. I just think that I ought to be doing more but I don’t know what more I could do.

I keep noticing the symptoms of an impending shutdown – I get frustrated and tired more quickly and I feel the urge to disconnect, to get away from everything for a while and go for a long walk by myself. But I won’t let myself do that right now – I can’t allow myself that luxury until she is stronger. It takes its toll on me: it is physically very demanding. I feel constant tension across my shoulders and down my back, caused by the stress of the situation. Once she recovers sufficiently I can take the time out I need to recover. But until then I must carry on doing the best I can.