I wrote this a while back and haven’t posted it until now. Today it’s probably apt to post. I work hard to manage sensory issues as an autistic person.
When several life stressors happen at once I cannot cope as a result. I cannot turn this experience off. It’s constant. I need help, even if you think I can manage something – stressors in succession or together is the exception. I may be able to if I haven’t had much sensory overload, but now I live in a city, that’s rare.
This is the disability some people like to tell me I don’t have because they think if I manage it I either don’t have it or are not disabled. Just because I “manage” it doesn’t mean it’s not a struggle. This is the disabling bit. The worst thing about stigma is people not believing autistic experience.
Sometimes the medical profession is guilty of this.
Some non-autistic people will be able to relate to aspects, but that doesn’t mean “everyone is a little bit autistic” because that’s simply not true (and another post entirely).
I didn’t talk about this for many years – why? Here’s some examples why:
1. Optometrists would recommend more tests. I see sound and I would struggle to describe what I see and how it manifests. Now the best description I use is “ it is like a watercolour brush with not enough colour (almost translucent but like light through a stained glass window) has been waved around people and objects”.
This can be a pleasant or horrible experience and it’s difficult to predict. It’s part of my experience of Synesthesia
https://en.m.wikipedia.org/wiki/Synesthesia
2. I have differences taste reactions to some surfaces that I come into contact with (including clothes). A lot of things give me an acrid taste in my mouth like diabetics may experience. I’ve had at least 20 tests for diabetes because I’ve mentioned this. You get a bunch of blood tests and fasting and sugar tests – all unnecessary.
3. Psychiatric responses to my hearing hyperacuity. I hear everything, all the time. But some sounds are soothing and others physically hurt. It depends on how saturated I’ve been over time and the complexity of noise. Generally though things like trains and traffic are okay – almost soothing. People noise in shopping centres and milling around in the apartment above – not pleasant at all. After a while of complex noise I start to shutdown and it can lead to a meltdown. It’s not a mental health condition that causes this, the sensory stimulus is the cause.
Meltdowns are not panic attacks, but this was the medical response. I’ve been medicated when I didn’t need it and hospitalised when I didn’t need it.
Hospital environments are sensory hell for me.
This is why we mask (or hide it or fake as some cruel people like to say). See this:
https://www.theguardian.com/society/2019/sep/13/women-better-than-men-at-disguising-autism-symptoms
Because when we talk honestly we are punished for what we experience repeatedly under the guise of “do no harm” of the medical model.
This is something I call “medicalised violence”. I am not saying the medical profession is consciously doing this. Not at all.
But treating people as the sum of their parts and not the whole has failed to detect things like synesthesia (and autism).
There’s bunches of scholars who’ve written about the medicalisation of experience (and I first learned about it at uni during a bioethics course). I won’t go to another doctor (yes, these happened) who says things like “you have anxiety you can’t be autistic” or “do you feel emotion?” or “you don’t look autistic” and recites other myths. I have no reservations about leaving a doctors office and not coming back anymore, because frankly, I’ve had more than enough of my fair share of ignorance.
Microaggressions add up to be little t trauma and spill out into big T trauma over our lifetimes. Make no mistake about it.
So, I won’t be quiet about this anymore. It’s “not playing the disability card”, it’s about accessibility and my right to exist on my terms – not the terms of someone else. Silence is not an option (and for me it literally isn’t – I’ll never really experience it, my brain can not filter noise). Social change is rarely quiet.
*note: I will defend a good doctor to the end of time. But the issues around the doctor/patient power relations are well documented and discussed.
Jacci Pillar 