Letting ‘the autism’ show… “unlike those with Tourette’s you at least have a choice about how normal you seem in public”

The title quote was said to me yesterday, and I woke up with it in my mind. To what extent is being visibly autistic (or not) a choice? Although I have the occasional facial tic my stims are generally more easily suppressed than a tic would be, or can be expressed (and often are) to a lesser degree if I chose to reduce from a big stim to smaller one. My aculturality can be hidden for short periods in which I engage myself in enacting my life-long study of cultural expressions, which was motivated by a need to survive. But what does this cost me, and what exactly is being chosen when I choose not to stim, or when I choose to figure out a way to express something in a culturally acceptable way? The choice for me is multi-faceted:

-choosing myself and my personal expression, or choosing to enact a version of myself which I brought into being in reaction to coercive allistic conditioning, bullying, and abuse.

-choosing comfort or pain; mental health, or mental illness: suppressing stims is like stopping oneself from itching when one has a very strong urge to do so – being itchy for long stretches, and not itching, is distracting, draining, and miserable. Not stimming also means not engaging in natural emotional expression — similarly to an allistic person forcing themselves not to smile, or frown. It is inhumane to expect this of oneself, and consequently is terrible for mental wellbeing. Stopping stimming also stops the processing of difficult incoming data, which then hits with its full weight, and gets no discharge.

To use a mobile phone analogy, stopping a stim it is like a sudden huge battery drain which compromises the remainder of my time outside of the house (if I set off with a full battery, I might have planned a couple of hours out of the house, but now I am down to half an hour before I shut down, and it might take me longer than that to get home).

Sometimes, rather than continue to experience the sensory drain, I flip into a dissociative state in time to cut off from my senses, and this compromises my ability to be in touch with what my body needs i.e. the toilet, food, drink, to go home. If I have flipped into dissociation, this means I am separated from self-knowledge, and can mean that I don’t even see a shut-down coming, it has also lead to severe urine infections, and forgetting to eat so that I end up in a metal fog.

There are other choices I make aside from whether or to stim, or not, such as whether or not to engage with the symbolics of allistic culture by using certain tones of voice, facial expressions, turns of phrase, and my ‘social persona’. I am an intellectually able autistic who has chosen to put a lot of time and energy into studying and learning how to fake it. I can act well for a couple of hour’s stint at allistic interaction if I have a “full battery”. But this acting also takes an immense amount of energy, and is hardly ever a perfect act. It means that I do not ever get a sense of authentic connection with others when I am doing it, and it lets my subconscious know that who I am is not good enough for, or in danger from, the people around me — a lesson well absorbed from childhood bullies and abusers, and not a good state for me to be constantly publicly engaged with.

So, yes, for me the level to which I express myself as autistic is (temporarily, at least, until shut down or longer-term burn out) a choice. But it is a precarious choice, and it is a time-limited choice. Stims do not just disappear, and will emerge in some format eventually. Social acts can only be maintained for a couple of hours at my very best, with a full tank of energy. Sometimes I am non-verbal, which is not a choice, and happens because I am out of battery-life for engaging in symbolics. Sometimes I dissociate, which is a choice my mind has made, but often without any consultation, and so cannot truly be called a choice. I have choices to make, but they are choices limited by the perilous interaction of having an autistic body in an allistic world. They are not a fair choice, and I often only have a split second to decide. The decision to cover up being autistic is never without serious consequences to me, both short and long term, and I wonder how long I can keep on validating it as a choice I am willing to make at all.


4 thoughts on “Letting ‘the autism’ show… “unlike those with Tourette’s you at least have a choice about how normal you seem in public”

  1. That title quote is a ridiculous and offensive thing to say. My life is mostly divided between people who think I have Tourettes and people who think I have a lot more control over my stimming than I actually do.

    Liked by 2 people

    1. I think my stimming is sometimes automatic and I don’t even realise I am doing it, and then sometimes is more conscious, or I become aware of it. Then at other times, I have the urge to flap my arms and wail, but I can stop the wailing and just do the arms (but I feel a sense of having stopped a natural expression, and so I feel squashed and incomplete somehow). It really does vary I guess. At times it is a choice, or a kind of limited choice, though. I can see how this differs it from a tic. Probably similar to how a smile is sometimes automatic, and sometimes a choice, and sometimes a mixture of both, but for people who use smiling naturally and not as a conscious cultural expression, even when it is a choice, it is not a choice which is thought about particularly hard, nor quashed or distorted.


  2. I think it is weird how stereotyped movements, or stims, are considered to be “purposeless”, but other natural movements like smiles or frowns are not considered to be purposeless.


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