asc & me: a short user manual

why are you reading this?

The chances are you and I currently, or are about to, spend some time together. Maybe we work together, are living together, or have somehow ended up in each other’s lives. This probably means that at some point you will notice some differences in the way I do things.

This is because I am autistic.

These differences are not inherently bad. Some cause me problems. Some I’m quite fond of. In any case, understanding them can help the time we spend together be easier for both of us.

I’ve written this to help with that understanding. Being autistic, the words that come out of my mouth don’t always match what it is I’m trying to communicate. By writing this down, I hope we can save some time and avoid confusion.

a little background

I was diagnosed with Asperger’s syndrome¹, now called Autistic Spectrum Condition², at the age of 29. I have been autistic all my life and always will be. This is because autism is a neurodevelopmental condition that affects the way my brain processes information.

You might have heard autism described as a ‘‘spectrum’’. This is because no two autistic people are the same. There are many things we have in common – the traits that make us autistic – but we all experience these in different ways, in different combinations, and to different degrees of intensity. The things I’m sharing here describe my specific experience of autism.

but you don’t seem autistic

So I have been told. And so have many other autistic people. This is because of masking. In brief, we consciously suppress behaviours that come naturally to us (such as stimming and infodumping), and adopt behaviours that don’t come naturally (such as sustaining eye contact or making small talk). We do this to better fit into the neurotypical world. After a lifetime of masking to survive, many of us become very good at it. This is why I, and many other autistic people, do not seem autistic.

It might seem like a compliment to tell us this, but it’s very invalidating to hear. And the implication that there’s something desirable about seeming less autistic is hurtful: it suggests that there’s something fundamentally wrong with who we are.

Masking comes at a cost: it demands constant vigilance. At best this is exhausting, and at worst can lead to shutdown and burnout. It’s a little like living in a country where nobody speaks your native language. To communicate and survive, you must learn and use the local language, which requires constant attention and effort. Even with constant effort, you’ll probably always speak with an accent and misunderstand idioms. A few hours at a party, for a native speaker, might be a relaxing way to unwind, but by the end of the night you will probably be exhausted from the effort of simply communicating.

communication

Autism means I communicate differently from allistic³ people. Masking means I make an effort to suppress many of these differences, but I can’t do this all the time. And even when I do mask, there are things I can’t change. Being aware of these points can help us communicate better:

1. Be direct. If you hint at something I will probably miss it.

   I’m not being rude. If you say, ‘‘that looks tasty’’, and you mean, ‘‘I would like to try some’’, I will likely just hear ‘‘that looks tasty’’ and respond accordingly.

2. I won’t always pick up on your tone. If you’re annoyed or upset, you may need to just tell me.

   Once I know how you feel, I can be very empathetic, but I need some help getting there. Weirdly, I can be very sarcastic myself, but can’t always pick up when others are.

3. I usually don’t know how much information is appropriate.

   If you ask a question, I may answer unhelpfully briefly. Or, I may give an unnecessarily long-winded answer. Please don’t be annoyed! You can simply nudge me in the right direction with follow-up questions

4. I tend to communicate in facts and information. I’m not trying to be a know-it-all.

   I tend to form social connections by exchanging information, rather than by making chit-chat or sharing emotions. Chances are, if I’m sharing info about something it’s because I’m trying to engage with you.

5. I will infodump. You can ask me to stop.

   If something I’m very interested in comes up in conversation, there’s a strong chance I’ll ‘‘go off on one’’. I manage to hold back a lot of the time but I’m not always aware I’m doing it. If you’re not interested, please interrupt and just say. It’s much better than feeling humiliated after realising I’ve subjected you to an unwanted monologue!

6. I am listening.

   Eye contact is weird for me, and many autistic people I’ve spoken to. It’s easier for me to process what you’re saying and to think about what I’m saying without it. If I’m not looking at you, I am almost definitely still listening!

executive functioning and sensory processing

Lots of evidence (see here, here, here, here, and here) shows that autistic brains work differently in a couple of key areas. In particular, we can struggle with executive functioning and sensory processing.

1. I’m probably not being lazy.

   Autism shares many characteristics with ADHD, one of which is executive dysfunction. I can find it hard to plan, initiate, and switch tasks, and this often means I can’t simply ‘‘do’’ things in the same way neurotypical people can. Please be patient!

2. I can hyperfixate.

   Often I will become intensely focused on the detail of something. From the outside this can look a little like obsession, but for me it’s usually a good thing. Unless there’s a good reason not to, it’s probably best to leave me to it!

3. Interruptions are very difficult.

   Because of executive dysfunction, it’s very hard to get back on track after an interruption. If you need my attention for something, please first consider whether it can wait until I’m not focused.

4. I can’t filter out sound.

   You’ll notice me wearing noise cancelling headphones a lot of the time. Quiet sounds are hugely distracting and loud sounds can be very distressing. Of course, sounds happen, and I’m not asking anyone to be silent around me, but keeping in mind that this affects me might help us have a better mutual understanding.

5. Don’t read too much into the things I do with my hands.

   I flick my fingers, twist my arms, bounce my legs, hyperextend my knuckles, roll my shoulders, balance objects, and line things up. When I’m alone this list is much longer. Lots of autistic people have a repertoire of these behaviours, called ‘‘stims’’. There are lots of theories as to why we do this, but ultimately they feel necessary and suppressing them is hard. Unless they’re actively bothering you, it’s probably best just to let me get on with it!

the bucket

The world can be very intense for autistic people. Sensory overload, social pressures, and unexpected change can all be very overwhelming. To understand this I find it’s helpful to imagine everyone as having a bucket. Throughout the day, stressful experiences can add little bits of water to the bucket. As the bucket fills up, it gets harder and harder to carry, and eventually becomes so heavy it may not even be possible to lift it. Or the bucket might get so full it overflows. Everyone has a bucket. Everyone’s bucket is different. Some are big, some are small. Some have big taps that open easily, whilst some have small taps that barely let the water escape. Autistic people tend to have small buckets, and this alone is difficult. But the big difference is that the things which don’t add water or which remove water from most people’s buckets can add water to mine.

These points explain how my bucket gets filled up, and what happens when it gets too full:

1. Masking fills up my bucket.

   I like to socialise, but the truth is I need to recover from almost every social occasion. If I turn down an invitation please don’t take it personally – I always need to think about how much space remains in my bucket.

2. New people and situations overwhelm me.

   Adapting to change is hard, and socialising with new people is hard. If you can let me know ahead of time, I can prepare myself and keep my bucket empty, which can make things easier. The more information you can give, the better.

3. I’m probably not upset.

   If I seem blank, distant, or withdrawn, I probably need to empty my bucket, and simply need space. Don’t be surprised if I quietly slip away to be on my own.

4. Rituals help me keep my bucket from filling up.

   You might notice me doing certain things in a peculiar way, or doing the same thing very frequently. Similarly, there are certain objects I like to keep in a particular place, and certain things I’d prefer not to share. This predictability helps me deal with the unpredictable things in life. If it doesn’t cause you any problems, we’ll both have a better time if you just let me get on with it!

…and the rest

Autism is hugely complex, and everyone’s experience of it is different. This page just lists some of the main aspects that might influence our relationship. If you want to know more, I’m very happy to answer questions and talk, so please do ask! I’m also happy to point you to resources if you’d like to learn more about autism in general.

In any case, thank you for taking the time to read this. Taking the time to understand the autistic people in your life – and there are almost definitely more⁴! – can help make everyone’s lives better.

footnotes