Musings on Autism and Autistic as terms

Autism, Autistic, the Autism Spectrum – I have been thinking about how useful the word is, like other words that people hang different meanings from.

According to the information in Wikipedia, a Swiss psychiatrist came up with the word in the early 20th century and it was used in the context of Schizoprhenia. This included “autistic withdrawal of the patient to his fantasies, against which any influence from outside becomes an intolerable disturbance”.

This is not what I understand the word Autism to mean, because I don’t think autistic people are confused about reality. We may get absorbed in a sensory experience, but it isn’t hallucination or delusion.

So, if the word we’re using to describe ourselves doesn’t come from a context that relates to what Autistic people are like, is it a useful word?

But is there a problem with a definition of Autism? I feel a tension between all the things expressed as “deficits” which can be traced back to things that are actually considered positive. And Autism suggests self-absorbed, when most autistic people I am familiar with are very engaged with the world.

In fact, are the “deficits” just not developing in the same way or speed?

It all comes back to whether it’s perceived as engagement in the world that makes you fit in at the right stages, and “functioning” defined in narrow terms as “being conventionally successful”. When it comes to “success”, what is the measure?

Take communication – the autistic communication style is naturally direct, truthful and often comprehensive. When you come up against the way most people behave, this ends up being rude, hurtful and “oversharing”, say. People admire those who expose awful acts and reveal the truth, but generally speaking, typical people prefer to be lied to to have their feelings protected.

I end up being mute in many situations because of the negative reaction to unfiltered truth which can be seen as “depressing”. Truth is often depressing, that’s just the way it is. So my communication “deficit” came about as a reaction to a world that doesn’t want honesty most of the time, and I have to identify very specific cases where I can communicate in my natural style.

How about intense focus and interests? People adore successful creative people who have an intense, almost obsessive interest in one thing. Yet you look at the diagnostic criteria and see this described as “abnormal”. If the person making the judgement doesn’t see the interest as “useful” then it’s a “problem”.

So back to “Autism”. Am I a person with “autism”, where autism is this “difficulty” I “manage”. Or am I Autistic with actually quite interesting abilities that get ignored or misunderstood.

Is Autism actually fine as a term, but it simply has to be claimed by actually autistic people? Can we say the “self” part is “self-aware” and not “self-ish”. If I say the apparent self-absorption is related to the response the world has to us, have I reversed the original intent of the word?

I’m not sure – “Autism” still seems to represent a result of being different, rather than describing what we are, and what our abilities are.

I’m somewhat disorganised, but do I need to optimise?

I’m referring to those executive function problems that seem to completely stop you doing boring but essential tasks like cleaning up in the kitchen, updating finances, putting away laundry, just to give a few of my examples at the moment.

I was considering, what’s the optimal solution for an autistic person, or just me.

Then, my mother emailed me an article about optimizing, by Leo Babauta. He was the minimalist influence on me setting up this blog, as I’ve thought for some time that autistic people could get a lot from a minimalist approach.

The article reminded me that I don’t really want to optimize, I just need something that works better. In fact, using the word “optimal” and trying to get there could be a huge barrier to actually taking a step, so really bad advice for someone with executive functioning difficulties.

It should be enough to have something that’s working a bit better than what you were doing last month or last week.