Don’t Let Me Be Misunderstood – #Autistic December 6/31

Don’t Let Me Be Misunderstood – #Autistic December 6/31

It’s hard to describe an experience to somebody who has little to compare it against. What would it be like to sense magnetic fields, or see the polarisation of light? How would it feel to be a cat?

You might speculate but there is no way to know. All you can do is imagine, drawing parallels with things you’ve seen or felt yourself. And it’s the same when somebody neurotypical tries to understand the experience of being autistic.

The same applies going the other way, of course. An autistic person like myself can never experience being neurotypical either. There’s even a name for this: the Double Empathy problem.

The thing is, while most of us autistics are all too aware that we experience the world differently to neurotypicals and that neurotypical assumptions about us can sometimes be wildly inaccurate, few neurotypicals have the equivalent insight.

This leads to misinterpretation of autistic behaviour when it’s viewed through that neurotypical lens. When all you see of something is what’s on the outside, you have to guess what’s going on inside based on what you’re familiar with. In this case, assuming that the causes or triggers are the same for autistics as for NTs.

We autistics are a minority neurotype. The consequence of this is that while we encounter NTs frequently, they don’t meet us nearly as often and don’t have the same opportunity to become familiar with our differences. We aren’t well understood, and that can lead to fear.

Filling that gap in understanding is so important, but there’s a communication barrier. How can we describe our internal experience in a way that neurotypical people can relate to without making it seem like a minor variation? That’s how we end up with misunderstandings like, “We’re all a bit autistic.”

I don’t have the answer. I don’t even know if there is an answer but I keep searching. There certainly is such a thing as an autistic experience because so many of us can relate to each other in ways that don’t happen between us and neurotypical people.

I’m autistic: I know how that feels. I can describe how it feels in ways that other autistics can relate to, but there’s always a frustrating gap in understanding with a neurotypical audience. The shorthand that works fine with others who share my neurotype loses meaning with those who have a different neurology.

My belief is that science alone–psychology, neuroscience and so on–probably won’t arrive at an answer any time soon. It’s going to require fresh approaches that break down the traditional barriers between disciplines to approach it from new directions.

Because communication lies at the heart of the problem it will undoubtedly need to involve those who specialise in those fields. Not just linguistics but all manner of communication: the domain of artists.

An over-reliance on words and repetition of established patterns makes new directions and new shapes of thought much more difficult: a poet or painter can capture and convey the feeling of an experience in a transcendent way.

Think of a simple experience: perhaps eating a chocolate. While the mechanics are important–body heat melting it, the action of chewing and swallowing, the workings of the taste buds and digestive system–they don’t tell you how it feels. There’s a whole level of description missing.

Bridging the communication gap will take a combined effort, a multi-disciplinary effort. New thinking is needed to break out from the confining paradigms we find ourselves with right now.

What Is Empathy?

What Is Empathy?

Empathy. Everyone knows what it is, right? It’s that sixth sense, a kind of ESP that picks up the vibes of what somebody else is feeling. Except that telepathy doesn’t exist, and given the lack of Betazoids on Earth there is nobody who can genuinely “hear” emotions broadcast by your brain.

So what is empathy and how does it work? It turns out that it’s based on observation. Minutiae of expression–body language–signal emotions at a subconscious level.

Humans being social animals, we have evolved to be sensitive to these signals from others around us. They provide hints for how we should approach others, how we should adapt our behavior to their moods so that they will be more receptive to our interactions.

But since we cannot actually read the thoughts of another, cannot infallibly know what they are thinking, we rely on projecting what we can observe onto our own psyche. We predict their responses based on what we ourselves would do in their situation.

There’s an elephant in the room of this analysis of empathy: it relies completely on an assumed similarity of thought. To be able to mirror the thought processes and mind state of another person requires a certain degree of equivalence of culture, environment and neurology.

Among the mostly homogeneous communities around the world this works well enough for the majority of people that they take its universal applicability for granted. But that is not the case.

Those of us who have a different neurology, or were raised in different culture, think differently. When we try to imagine another’s thoughts we predict them based on our own minds. We use the knowledge we have gained through our own experiences.

But, when those experiences are sufficiently different from those of the person whose mind we are trying to model we find that the conclusions we reach are different from those that they would arrive at.

The converse is also true: neurotypical people are equally bad at imagining what autistic people (and also people from different cultures) are thinking and feeling.

Empathy is not some magical ability. It is nothing more than considering the question, “What would I do/feel in their situation?” It’s simply a forecast based on what we can see of them.

For accuracy forecasting relies on both knowledge of the initial conditions (what we observe of their situation and mood) and an accurate model of their behavior (how they think). It is this second part that explains the disconnect for autistic people.

We simply do not think in the same way. We respond differently to the same stimuli. And so when we try to imagine their thoughts we imagine them responding as we would. And that is different to how they would respond.

The result is that we are assumed not to have any significant capacity for empathy, for putting ourselves in the place of others. But my view is that the very definition of empathy means the odds are stacked against us even before we begin.

Responsible Freedom

Responsible Freedom

I’m a great believer in freedom of speech, and not just in the sense of vocalization: I include all forms of self expression. It is enshrined in Article 19 of the Universal Declaration of Human Rights, “Everyone has the right to freedom of opinion and expression; this right includes freedom to hold opinions without interference and to seek, receive and impart information and ideas through any media and regardless of frontiers.”

This right, like all other rights, comes with an unspoken duty: the duty to ensure to the best of my ability that anything I do express does not harm others. That it does not curtail the right of those others to live free from fear, oppression and abuse.

That is where my own sense of morality comes into play. I must judge for myself whether my words and actions are appropriate and in alignment with what I believe to be right. I must put myself in the position of those people affected by what I say and do, using my sense of empathy to imagine how they might feel.

I have a very strong aversion to conflict and confrontation, and I’m sure this plays a role in shaping my behavior towards others. But there is also compassion which causes me to feel hurt by others’ pain and anguish. This suggests there might well be a degree of self-interest involved in what I refer to as my morality, but I’d argue that this is no bad thing. It gives me an honesty of purpose to understand my own motivations rather than simply label my behavior as intangible belief.

Freedom as a concept is both shockingly simple and overwhelmingly complex. Simple in that it may be expressed in very few words and applies equally to all. Complex in the effects and ramifications of that simplicity. Freedom is not a license to do whatever you want. It is a contract between an individual and the society she lives in, a tacit acceptance of a framework of rights and responsibilities.

I believe any society, any situation involving two or more people living together, requires some set of rules governing behavior. I’m not necessarily referring to formal laws and such like. But complete, unfettered individual freedom inevitably conflicts with the well-being of the group as a whole. If one member of a group hoards all the food then it hurts all the rest, so a rule gets developed for fair distribution of resources. Those who don’t conform, who don’t live within the societal restrictions on their individual freedoms, are cast out of the group. What in former times were called “outlaws”: those who are outside the the set of rules and protections offered by the group.

Some use the idea of individual freedom to justify bullying and oppression: if I’m stronger than you and physically able to take from you then I’m free to do so. I want your land so I’ll force you out and take it. Freedom becomes associated with strength and aggression, with a lack of restraint.

Human rights are not the same as freedom. Accepting universal rights requires accepting restrictions on individual freedom, accepting that some actions are not acceptable behavior since they deny those same rights to others. It’s not about strength but empathy, compassion and respect.

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.