This is why there should be more room in the "professional services" for adults with similar conditions to be paid and respected as experts-by-experience and being one of the points of contact for the people with the condition and their families. So people like you or me can talk to people about lived reality, not just that which gets put in textbooks or papers. And indeed what medics/professionals deign to remember or consider important.
This post of yours sounds very similar to other writing on nystagmus that I've read. Also specifically the psycho-emotional links is something I've talked to Amy K about a lot and that a good day can turn bad because of a strong emotion (good or bad) [Now getting wiksanded by reading about neurology of emotions] :)...
I think I also see slowly. Especially spatial information. One of my orthoptists discovered this when I'd got them to give me a private quiet room for consultations. They'd bagged a seminar room set up in rows. Orthoptist had set up 2 chairs facing for us on the far side of the room from the door, by the window with best natural light. I had to walk through the rows of desks/chairs to it... And it was HARD. I had to physically stop and make sense of the visual clutter several times in a 20-30 person classroom sized room. This orthoptist was astute enough to notice and ask me about it. I know I struggle in new places. I need to walk round, on my own (preferably when there's no crowds), no other input data just to work stuff out. I totally understand why some autistic people need to see a space a few times before being familiar enough with it to feel more comfortable...
I get oscillopsia when I am tired or something has pissed off my balance system. I liked the description of things flickering in and out of vision. I find I can't process people/movements properly and cos I can't hear reliably I don't know where people are by sound. I am easily startled (VERY startleable even by deaf standards). My partner knows on a bad day that she can't move in my visual field without warning me first or I'll freak out.
I probably should have nystagmus but don't cos of the paralysed nerves which operate the "moving eyes outwards" muscles because of my 6th cranial nerve palsy (Duane's Syndrome 1A). I don't know if I would still have the vision things that I do if I didn't have the Duane's syndrome.
Sensory input systems and brains are quite impressive. I wish there was better general awareness of them in terms of designing and creating the world we live in. Buildings. Visual clutter, acoustics. I also wish we were more aware of prevalence of sensory impairment or differences instead of assuming everyone experiences stuff the same way.
Thanks for your two posts in DW this last day or so, super interesting all round.
no subject
This post of yours sounds very similar to other writing on nystagmus that I've read. Also specifically the psycho-emotional links is something I've talked to Amy K about a lot and that a good day can turn bad because of a strong emotion (good or bad) [Now getting wiksanded by reading about neurology of emotions] :)...
I think I also see slowly. Especially spatial information. One of my orthoptists discovered this when I'd got them to give me a private quiet room for consultations. They'd bagged a seminar room set up in rows. Orthoptist had set up 2 chairs facing for us on the far side of the room from the door, by the window with best natural light. I had to walk through the rows of desks/chairs to it... And it was HARD. I had to physically stop and make sense of the visual clutter several times in a 20-30 person classroom sized room. This orthoptist was astute enough to notice and ask me about it. I know I struggle in new places. I need to walk round, on my own (preferably when there's no crowds), no other input data just to work stuff out. I totally understand why some autistic people need to see a space a few times before being familiar enough with it to feel more comfortable...
I get oscillopsia when I am tired or something has pissed off my balance system. I liked the description of things flickering in and out of vision. I find I can't process people/movements properly and cos I can't hear reliably I don't know where people are by sound. I am easily startled (VERY startleable even by deaf standards). My partner knows on a bad day that she can't move in my visual field without warning me first or I'll freak out.
I probably should have nystagmus but don't cos of the paralysed nerves which operate the "moving eyes outwards" muscles because of my 6th cranial nerve palsy (Duane's Syndrome 1A). I don't know if I would still have the vision things that I do if I didn't have the Duane's syndrome.
Sensory input systems and brains are quite impressive. I wish there was better general awareness of them in terms of designing and creating the world we live in. Buildings. Visual clutter, acoustics. I also wish we were more aware of prevalence of sensory impairment or differences instead of assuming everyone experiences stuff the same way.
Thanks for your two posts in DW this last day or so, super interesting all round.