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.

Meaning

Meaning

Reading a play in Spanish earlier–a language in which I am far from fluent–it struck me that as I read I don’t think about the English equivalent of the words and sentences. They have meaning without any conscious translation to my native written (and spoken) language.

I’ve found I have a certain facility for learning to read some languages: basically those that share some common roots with English. This includes Latin, Middle English, French, Dutch, German and Spanish. (I’m keen to add Celtic languages such as Welsh and Irish to my list as well, but my available time is finite.) There’s no trick to it: it appears to be a consequence of how my mind works.

My lifelong immersion in English had hidden from me the non-verbal nature of my thoughts, because whenever I come to communicate them I use that language. But, as I have described before, inside my mind there are no words, only impressions: feelings and visions. Meanings in elemental form.

When I read a text the parts I recognize cause these impressions of meaning directly. The parts I don’t recognize I must consciously, mechanically translate to English first. I quickly become familiar with new words, at which point this intermediate English stage no longer happens. At that point I’m reading fairly fluently. I generally find it takes several hours, maybe a few days, to reach that stage.

There’s a curious effect of understanding the meaning directly (i.e. without translating via English): if I express that meaning in English I use my own phrasing and structure. I often find it more difficult to render a literal translation than simply to convey the essence of the original. This is something I have also noticed when I’m reporting information (text or conversation–it doesn’t make a difference) that I encountered in English.

If somebody asks me what another person said to me in conversation I am usually unable to recall their words, instead simply retaining the underlying meaning. The implication is that I do not require English (or any equivalent language) for thought. I describe my thinking as visual but the reality is much richer and involves more senses than just sight: touch, smell, taste, hearing and emotions are also involved. Perhaps it would be more accurate to describe it as sensory rather than visual?

Most of the time it is effortless to translate my thoughts into English, expressing myself through writing or speech. But sometimes I will hit a block: I know what I want to express but can’t immediately find the words to convey that meaning. My choice of words is also very important to me. I like to find le mot juste, the exact word or phrase that matches what I mean. Failing to do so causes much frustration.

Exactly the same mechanism applies to programming. I “see” the structure of the code, how it operates, how the parts interact. The actual computer language used to express this is mostly irrelevant: I’m fluent in several and have no difficulty expressing equivalent meaning in any of them. To me there is no essential difference between writing in English and writing in C++ or Perl. It is only that computer languages operate in a restricted domain, defining sequences of operations. Natural languages are much more extensive in scope.

The common link is that they are all forms of communication, ways to express or record what is inside one’s mind so that it may be transferred to another mind. This also applies to computer languages: sure, programs are converted into machine instructions, but the reason that programming languages exist–as opposed to using those low-level instructions directly–is that they provide a means for programmers to express what is in their minds in a more natural way, one that is closer to the mental model than the binary codes that are the end result.

Listen

Listen

Imagine you couldn’t speak, couldn’t sign to communicate with other people. How could you let them know when you were feeling discomfort or pain? Whether you wanted to go some place, or simply be left alone where you are?

How would you feel when doctors decided you were not competent to make your own decisions about your life? When they took you away from the places and people you were used to? When they denied you access to the tools you use to communicate?

How would you like to be medicated against your will when your distress is interpreted as non-compliance and “bad behavior”? To be punished–hurt and abused–when you are simply acting in a way that is natural for you? To be incarcerated, institutionalized and denied your freedom because somebody believes that not speaking means not thinking?

This has happened to many, many people who are autistic or have other neurological conditions affecting their ability to communicate in conventional ways. It is still happening today. Places like the Judge Rotenberg Center in Massachusetts inflict pain and fear in an attempt to force compliant behavior; instead they cause long-term harm including PTSD.

Sharisa Kochmeister was denied the right of access to her communication devices, deemed not competent and made a ward of Jefferson County, Colorado. She has been removed from her home and family, and they have been prevented from contacting each other except for a very few highly-constrained supervised visits.

What will it take for all of us to live secure in the knowledge that we will not face such arbitrary denial of our rights? That we will not be detained against our will? That we will be presumed competent regardless of our means of communication?

Translating Passion

Translating Passion

I have a deep connexion to the written word. The art of writing is one of my great pleasures in life, reading is another. Words are little parcels of meaning and reading one unwraps the gift to reveal a glittering treasure of ideas. Each one is a seed that takes root in the mind, growing and bringing forth sweet fruit.

When I write I use words to build a representation of my mind state. It’s not a simple, mechanical process although experience has made it largely effortless; it’s a creative endeavor in which I use my feelings and mental images as the template through which I shape a story.

I never start with an outline or any structural plan for what I intend to write: inside my mind there is no such linear organization. The ideas exist as a single entity, a gestalt. I see and feel the whole at once, aware of each part but much more aware of how their combination results in meaning that transcends any simple arithmetic of combination.

Words are pigments and brush strokes; the page is my canvas and I paint what is inside my mind, producing an imperfect representation in my drive to express my thoughts. I cannot hope to portray every detail, the intricate richness of what I see behind my eyes. Instead I strive to present a faithful impression, a sketch. To indicate through hints the underlying shape. To provide the dots that my reader can join in their own mind.

Writing is immensely emotive. These elements from my mind that I translate via my keyboard can be painfully intense, carrying as they do a wealth of emotional association. Analogy and visual metaphor have their roots in these feelings: they are the manifestation of my visceral, physical responses to stimuli via the vision-oriented functioning of my brain.

Sometimes it feels as if the ideas themselves are alive within my mind and it is they who strive to be heard through me. The act of writing becomes one of observing as they flow out onto the page. My hopes and fears, loves and loathings want to be heard and they tumble out as I watch, lost in the ecstatic bliss of creative release. To simply call writing a passion falls short: it is far more important to me than that.

I Don’t Know What To Say

I Don’t Know What To Say

My daughter turns 18 in a month’s time. I’ve not been part of her growing up, not been there as a parent to her. There are reasons of course but I’m not going to go into that now. What matters to me is that she recently chose to get in touch.

She sent me a message via Facebook which I didn’t see for nearly a week because it went into my Others folder. I have no idea what she thought as the days went past and I didn’t respond; I replied as soon as I read it. We established that we’d both like to keep in touch which makes me happy.

That was two weeks ago. I keep thinking about starting a conversation with her but I have no idea how to go about it. I realize I know next to nothing about her. I don’t know what her interests are, what she studied at college, places she likes to go, food she likes to eat. I don’t know how she feels about me.

The last time I saw her was at my mother’s funeral, a cathartic day on which I was finally able to move on from the pain I felt since my breakup with her mother. I think I’d like to see her again, face to face. I have some anxiety because I can’t predict how it would go.

Writing this has helped me gather my thoughts. I guess I could just start by asking about the kind of things I’ve mentioned here. This social interaction business sure is difficult — I’ve got so little experience and in this case it means so much to me that I’m terrified of getting it wrong.

Here goes… Wish me luck!

Why I Don’t Do Agile (Software Development)

Why I Don’t Do Agile (Software Development)

Agile software development is a collection of methods for organizing software development teams and their work. There is an emphasis on interaction and feedback, and these methods have proved to be successful when adopted by companies. But it’s not for me.

After such a blanket statement I need to explain what I mean. There are many, many aspects of software development encompassing roles from business analyst to programmer to project manager and beyond. I’ve been a professional developer for nearly 20 years and personally have no interest in any of the roles outside my own: they exist only to facilitate my work by reducing the points of contact between myself and the larger world.

Over time I have evolved a way of working that fits well with my strengths and accommodates my weaknesses. I do best when I have a clear goal, an environment free from aural, visual and tactile distractions, and the minimum of interruptions. In essence it’s a case of winding me up, pointing me in the right direction and letting go; then standing back until I get where I’m going (or the spring winds down).

This works for me because it allows me to enter a flow state and remain there, my mind focused on the task at hand. This is the state in which I am most productive by far, completely in tune with what I’m doing to the point where there is no conscious effort.

This is at odds with some aspects of Agile methodology, in particular its emphasis on team interactions. I spend the majority of my time working on solo projects and don’t fit within any single team along organizational lines. This makes my inclusion within any single team arbitrary; in fact I can’t even remember the name of the development team I’m supposed to be in.

The communication requirements have a disproportionately negative effect on my productivity. I dislike daily “stand up” meetings where I have to listen to incremental updates from the other developers in the team. It’s like enforced socialization, and it might as well be meaningless smalltalk because what they have to say is mostly irrelevant to what I’m working on and hence of no interest.

A meeting is a distraction; it’s like a pothole in the road of my smooth progress. I’m aware when it’s approaching, so I can’t focus fully on my development in the time leading up to it. Participation diverts my thoughts from their work pattern and it’s as if the mental images I’d been constructing fade and disappear. All the work I did to build them is lost, and I have to spend a significant length of time just getting back to where I was before the interruption.

If you’re part of a team that uses these methods you’re expected to be involved in all of them. I have conflicting needs when it comes to communication: I function at my best when I have control over when and how I communicate. In practice this means short one-on-one interactions when I need some information, and non-verbal communication for things like progress reports so I can just post them some place where anybody concerned can read them without directly contacting me.

The problem I have with Agile software development is that every incarnation I’ve encountered has been a one-size-fits-all suite of buzzword-heavy methods, the majority of which are well-established working practices with new names to make them appear innovative. There is undue emphasis on the methodology as opposed to simply getting the job done. I’m strongly in favor of effective working practices and I actually use many of the methods collated under the Agile banner. But I don’t call the way I work “Agile”: using a wok doesn’t make your meal Chinese.