A-Z of #autism from a personal #ActuallyAutistic perspective.
One of the things frequently denied to autistic people is the freedom to be our authentic selves. In terms of learning, leisure, and lifestyle, we’re often under pressure to ‘fit in’. No one has complete liberty, but we have less than most. We discover early on than typical education doesn’t necessarily cater to our needs. Later on, we realise that our livelihood is likely to depend on masking well enough not to seem all that autistic. Sometimes we willingly give up our liberty for someone we love; taking on a caring role, and setting their needs above our own.
Liberty 1: the quality or state of being free: a: the power to do as one pleases. b: freedom from physical restraint. c: freedom from arbitrary or despotic control. d: the positive enjoyment of various social, political, or economic rights and privileges. (Merriam Webster definition).
Some autistic people are literally denied liberty – imprisoned, detained, and physically restrained. Others of us are constrained by situations and circumstances that don’t meet our needs. The inaccessibility of education, health, housing, and employment can have long term consequences. Look how serious this blog has become… I’m probably not the only autistic person who’s been told to “lighten up”. I tend to see the serious side of things. As a child my smile was a way of saying “I’m ok, please leave me alone to think about things intensely”.
Learning is one of my leisure activities. The most compelling lesson I attended at school was a lecture on lateral thinking by Edward de Bono. What he described fitted my preference for logical, analytical, associative (rather than linear) problem solving. I found out recently that de Bono proposed a suite of new words based on numbers, representing useful ideas or situations that lacked a single-word representation. Code 6/2 meant: “Give me my point of view and I will give you your point of view… Such a code might be used in situations where one or both of two parties in a dispute are making insufficient effort to understand the other’s perspective.” I love this idea! A codified system would lighten the communication load. Concise numerical indicators could convey complex ideas. It’ll never catch on though, there’d be far too much clarity!
When I worked full-time I had very little leisure time. I’d often go into work early and stay late, to take advantage of no one else being there. And by the time the evening or weekend came I’d be too tired to do anything much. What I didn’t know then was how dangerous it was to stop doing the things I enjoyed. My interests were more than leisure pursuits, they were a way of recharging my energy levels. Instead of seeing my interests as a lifeline, I’d work myself to the point of exhaustion before being forced to take a break.
Recognising we need a break, and being able to take one, are two completely different things. When I did research with family carers I met a mum who had requested respite care for her child so she could go sea fishing. But this was seen as “frivolous” by social services, and not a necessity. It’s not leisure if we simply replace one energy-sapping task with another, but value judgements are made about the ‘legitimate’ use of time. Learning a language is likely to be seen as worthy, while lounging about making Lego models risks being seen as indulgent. Knowing my limits, and not seeing them as a limitation, is one of the most important life changes I’ve made since discovering I’m autistic. I try not to overcommit myself but if something unexpected happens I’ll reschedule something rather than risk getting overloaded. This isn’t being lazy or a ‘lightweight’, it’s a legitimate survival mechanism.
Perfectionism seems to be quite a common autistic trait. When I was younger not being able to be ‘laissez-faire or ‘lax’ sometimes led to overload. I needed to languish on my own after periods of intense activity, but I had no idea why. When I’m alone I can let my guard down. I don’t have to think about how I come across. I don’t have to plan what I’m going to say (or speak at all). I don’t have to review what just happened to make sure it was ok. It feels liberating.
I’ve left it late to talk about love. Perhaps I’m avoiding the subject. It’s immense. Love is a word we got told off for using too liberally at school. “You don’t really ‘love’ that tree, landscape or insect.” Actually I did. I was enchanted by nature and the fascination of the physical world. The way water carved valleys out of rock. Stone steps worn down by generations of feet. Volcanoes erupting. Woodlice rolling themselves into tiny balls. Sunsets. I fell in love a lot, and not just with people. The security of being loved by my parents was a legacy from childhood but my love life was a different matter. Lasting romantic love eluded me for a long time, partly because I was working out who I was. I got there eventually, with the help of a dating website, a spreadsheet, and some logical, analytical thinking. But love can only exist in the shadow of loss. I’ve grown more conscious of this as I’ve got older. Love is bitter sweet.