this post was submitted on 10 Aug 2023
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Please understand that writing about my experience of autism in a Beehaw comment will necessarily give an extremely simplified and limited view of what my life is like. I've had similar discussions in the past where the other person either decided I was seeking advice or found a way to twist my experience to fit their beliefs, and I'm honestly not here for either- if I stop responding after this comment, that would probably be why. I also can only give a few examples without also writing a book.
I am hypersensitive to all kinds of things that non-disabled people can easily ignore. I cannot go anywhere where there might be harsh florescent lighting, sudden noises, flashing lights, loud music, or strong, invasive smells like perfume, because these things cause me literal pain. This means I can't go shopping in a mall or pretty much anywhere else. I can't go to any large gathering of people. In fact, I can rarely go outside at all, because you never know when you're going to be confronted with someone who thinks the whole neighbourhood wants to hear their music. I suffer from severe emotional dysregulation that makes my life a living hell- I am 51 and I have regular meltdowns and attacks of rage. My behaviour is not "normal" for a woman of my age, and it causes me great distress and prevents me from living the life I want to live.
That is not to say that I would want to cure my autism. The fact is, I am attempting to get treatment for my sensory processing disorder but am fighting ableist anti-autistic attitudes from local health care professionals. I believe there needs to be some sort of place in the NT world for those of us who are totally overwhelmed by the NT world but also would like to not always be left out of everything.
Hm, that indeed sounds harsh, and disabling. If you say it comes as part of the autism diagnosis... then I'll have to read up and reflect on it.
Thank you for sharing.
The attitudes from some health care professionals, I've got some of those; I think some try to be funny, but their humor is... pretty twisted, and sometimes too out of place. That is, when they aren't just undertrained, or burned out. If possible, try to find someone who understands your case, and stick to them, and hope their contract gets renewed.
Places like malls, or anywhere with ads (that includes images, lights, sounds, smells), I'm afraid are always going to be tuned to NT levels, so only something like relax places come to mind as safe spaces. At least, until everyone ends up wearing VR helmets 24/7, with their own personalized experiences (then you'll get to experience your own low-key personalized ads too, yay!...)
Unfortunately, when local professionals told me that autism is a disorder of childhood in which they are not trained, and therefore they will not see me, they are being very serious, not joking even in a dark and twisted way. My country has a kind of national health service and I happen to live in an area where there are no services of any kind for autistic adults. Once I am told "no, you can't have an appointment, I don't see autistic adults", there is nowhere else to go.