Yesterday, somebody said to me: “unlike those with Tourette’s you at least have a choice about how normal you seem in public…” This post explores the tense relationship that I have with the idea of choice when it comes to ‘seeming normal’. To what extent is being visibly autistic (or not) a choice?
Tourettes involves have tics which are largely irrepressible. Although I have the occasional facial tic, my stims are generally more easily suppressed than a tic would be, or can (generally) be expressed to a lesser degree if I chose it. My autistic aculturality can be hidden for short periods in which I engage myself in enacting learned cultural expressions, motivated by a need to survive, or thrive in a neurotypical environment. 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? These choices involve:
1) 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, abuse, or exclusion;
2) 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).
3) Choosing 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.
Dissociation as a way of life…
Mostly, choosing the ‘normal’ option in the above three choices requires me to cut off from my sensory overwhelm, or emotional/social being. This involves flipping into a dissociative state to cut off from my senses, feelings, and identity. My ability to be in touch with what my body needs i.e. the toilet, food, drink, to go home, is compromised. I am separated from self-knowledge, and sometimes don’t even see a shut-down (see my post on shutdowns) coming on. It has also lead to severe urine infections due to holding it in too long, or not drinking enough water, forgetting to eat which destabilises my mental state, not realising that I am in dangerous interpersonal situations, losing a sense of my boundaries, and so on.
So, 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, time-limited choice. Stims do not just disappear, and will emerge in some format eventually, whether that be in physical pain, sleeplessness, or anger. Sometimes I am non-verbal, which is not a choice, and happens because I am too drained from my previous choices. Sometimes I necessarily dissociate in order to enact my choice, putting my health, or safety at risk. 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, not a simple choice, and not without (sometimes serious) consequence.
I wonder how long I can keep on validating it as a choice I am willing to make at all.