Posted by: Emily | 6 August 2014

Living with autism: no owner’s manual

When allistic (i.e. not autistic) people ask me to describe what it’s like to live in my brain, the brain of this one particular autistic person that I am, I often respond in the following way:

I didn’t get the owner’s manual, so I don’t have what to fall back on when I don’t know what to do.

Everyone else got the owner’s manual. Other people know how to look things up in it to discover things or check things or reassure themselves they’re doing things right. Other people know how to answer the persistent voices in the back of their mind that question their social interactions. “Did I shake that person’s hand too long?” “Did I say ‘hi’ when I should have said ‘hello’?” “Did I say ‘goodbye’ enough times before hanging up the phone?” They might not know the answers, but they know how to find out.

I don’t, by default, know how to find out. I haven’t got the owner’s manual. I have had to learn, by memorization and rote, what the answers are. And when I don’t know them, I have no backup plan. So I often shut down, because it’s the only option left to me.

If you had to learn social skills consciously, by memorization and rote, and are locked in constant battle with the voices in the back of your mind that question your every move, my heart goes out to you. I have been there; I am still there; I will always be there. Some days, things come more naturally. Some days, my fear gets the better of me, and I lose that battle.

I haven’t got an owner’s manual, and my brain is always in a constant low-level state of heightened anxiety over that fact. “Did I do that right just now?” it usually wonders. If I am functioning well at a given time, my brain will try to be a step ahead: “What do I want to do next? How do I do that right?” And I had to consciously memorize, often by trial and error, the answers to these questions. But if I’m not functioning as well, my brain will be reactive rather than proactive, and I will panic, I will become less verbal (this includes signing), I will start to shut down.

I am faking it. Some days I fake it better than others. We’re all like this, to some extent. But for me, when I can’t fake it, I don’t have the same recourse everyone else has got. I haven’t got the owner’s manual.



  1. This is a reasonably good description of the way I sometimes feel when I’m in a foreign country. Except that I’m used to having the owner’s manual, and it’s very strange when you discover that you’re using the wrong manual, especially when the two manuals superficially seem to be in the same language.

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