Blindness

So, as anyone who’ve seen my posts know, I’m autistic, lv2, and legally blind. I frequently go to a blind foundation, called Dorina Nowill Foundation for the Blind, translating the name of course. And I feel I have a very different reality than my other blind peers, or autistic people also feels very detaching sometimes, as I’m female and grew up where all this huge info data we have didn’t exist. But my focus this time is on blindness.

Well I was born with congenital cataracts, in a technical view I was born legally blind already, but they were partial cataracts so I had surgery at 3yo. My mum had to battle this on her own, nobody was with her and giving her the necessary support on subjecting her toddler to a surgery that could be very good for me but also could go downhill, but she fought, she went through, she tried.
So my I lived childhood and adolescence as as someone with low vision, but had I heard about that terminology? Obviously not. So I grew up, feeling different as I dealt with undiagnosed autism and low vision, I learned to adapt, I learned to read even if I couldn’t actually see the words or individual letters. I learned to look at something and thanks to being very detail conscious I would find patterns that told me what that colourful stain should be, a tree, a flower, a building, whatever.
So in 2021 I discovered I was low vision, tho a PE teacher did tell me I’d probably be able to join the Paralympics, being autistic meant I didn’t notice the implication of her statement so it slept through my mind without raising any flags. But at the same time, November 2021 I got legally blind, in one night I could see a lot, the next day everything was very different and weird, and that’s when a doctor told me “you’re legally blind”. For context that’s not very spoken in my country, Brazil, very few people know what “legally blind” means.
Anyway, that happened, but I still knew how to adapt, I’ve never had a lot of support to know stuff, I learned to catch the bus without being able to see it properly by 10 years old, and what would happen would be that I’d give the signal to the bus when it was very close to me, and lots of bus drivers would be mad at me for stopping them so suddenly.
So anyway I learned to adapt with this new form of sight (or lack of it), I learned to read with very big font for when I’m not in the mood to use screen reader, in reality I can’t see anything I’m typing right now, but with effort I make out the words. I learned how to use screen readers on my own, I learned how to use a white cane on my own, I learned how to go places on my own, even braille I’ve learned mostly on my own around September 2021.
On 2022 I tried reaching the blind foundation, they denied me, they said that for being autistic they wouldn’t have the technical competence to deal if I had any sort of meltdown. So I learned to navigate even more on my own! I reached to them a second time on 2023, explained my case, they now did let me join, and what happened was that I didn’t have much to tell about my process to the psychologist, and my O&M classes were only 4 classes that basically contained the instructor telling me to walk slower, I didn’t need it, I took them as a formality to apply for a guide dog and have more chance on acceptance.
So I reached them a third time in the end of 2024 telling I really needed some psychological help, because at that moment I was having psychological demands on my blindness, and I needed this support, and started with them now in the middle of 2025.
It’s still very different for me, it’s like I’m not processing the grief most people have when losing sight, because when I needed to process that grief I had no professional support at all. And up until about 4 weeks ago, I still didn’t know why I got legally blind all of a sudden, so it was hard to tell the psychologist what affected me without even knowing what was my condition.
I give that impression that I’m very well prepared, I already know how to use the phone, the computer, the cane, the public transport, get my documents, everything, so what exactly am I struggling with?
I opened myself once, and told her, I know I’m well off already, but that’s not okay for me, I’m not happy, I’m not comfortable, I don’t even know fow how long I will still be able to see, I feel detached, I feel alien, people think I’m so ok on my own that they don’t notice how lonely I feel, how when someone compliments how strong and independent I am I feel that “yeah, but that’s because I don’t have someone to be always with me, and asking family members sometimes would be taken as a nuisance”.
I still feel it’s a bit hard to express my troubles when it comes to blindness, but now my psychologist know how to approach me, and I got the diagnosis so I have something to work on top of. Because now I feel more secure when thinking about “what if I go totally blind?”.
I’d be so grateful if I could openly express about it in my social media and other places what means to be legally blind and what means to learn to adapt when you don’t know you can get accommodations for example. Perhaps one day it will be possible.
Only I know how I see, what I see and now I also know how much I don’t, because I got a very strong cold and my brain went like “I’m so sorry eyes, but I need to fight this virus, so try to get by” and I couldn’t even read the biggest font I’d try to get. Also only I know what’s the feeling of being around my blind peers and not feeling like them. Not complaining that I’m blind, like a lot of people do, only I know what means to get excited to know my train is arriving at the tube when the employee giving me assistance hasn’t seen it yet. Or how excited I feel every time my boyfriend tries to come behind me in secret and without even looking at him I just say “Heya” and he gets so disappointed he can’t be sneaky, because it’s not that I hear him arriving, but I notice some sound waves being blocked, so I know there’s something there. These abilities are very exciting and fun to have. But doesn’t take away the sadness of living in a very ableist world. Not getting a job because they think I’m useless without sight, and the list goes on.

I’ll make this post a bit short considering the app is weird with my posts.

I’m struggling, I need support that I can’t actually get, for once I need a “babysitter”, I need help.
Trying to live by myself with level 2 support autism + being blind + depression. Yeah… not a great combo.
#AutismSpectrumDisorder
#MentalHealth #Depression
#Blindness

Today I went to the ophthalmologist that did my congenital cataracts surgery to ask her for an opinion on what might have happened to my eyes for me to lose so much sight.
I was already low vision before but then I got legally blind, but no answer given from any ophthalmologist I’ve visited so far.
She told me, she gave me a name for my condition, a diagnosis and that’s so much relieving as now I have an answer.
Retinal/Macular Dystrophy is the condition. She told me usually congenital cataracts comes with something more, but my condition was from a genetic form that would only show signs at the age it started back in 2021, so it slipped undiagnosed.
Unfortunately I now know I can never have the little sight I had back, I will have to remain legally blind, but that’s fine.
Retinal/Macular Dystrophy is degenerating so what I can do is support with some vitamins that aren’t found in food, unfortunately they’re a bit expensive but I’ll see what I can do. But having the vitamins I can stabilize and slow down my condition, I might be able to retain the very little sight I still have.
So yeah, great news and I can finally rest in peace about it, I now know it’s not likely I’ll sleep and wake up to nothingness. Also my vitreous humour is almost fully detached and she said it’s not a bad thing, it’s actually good, because it prevents a potential retinal detachment so even me having a high tendency for one, it won’t happen so easily.

I heard about this method for over a year. Had to answer maths questions about it with those classic problems “x is using pomodoro method and is studying for h minutes and resting for k minutes. When will x be resting based on the info x will study from 9:00 to 18:00.” and then 5 alternatives to choose certain moments.
This method got me spiteful for hearing about it so much, but here I am, preparing to sleep, having more stuff than I should to study tomorrow, and needing an entire day for that. Will go for 45min studying and 15min rest.
I might not see my grandpa as a wise person for a LOT of reasons. But one phrase he told me when I was little “you got a first time for everything”, and of course not taking the every absolutely, he’s right so far.
Those are moments we surely bite our tongues and comply. 😴

Time Blindness
Most neurodivergent people struggle with something called time blindness, which is an impaired ability to perceive and manage time accurately. This means that time blindness can cause neurodivergent people to experience issues like procrastination, keeping track of time, and getting to places late. Thankfully there are some strategies that can help people overcome time blindness like creating a schedule or routine, setting timers and reminders, breaking down tasks into more manageable steps, and seeking professional help.

I've been in a very dark moment, I am living with government aid and it's barely enough. Family is basically pressuring me on getting a job and they don't realize that I try, and I try, and I try! They don't live my reality, although some of my family members are also autistic, they handle it way better than me, since I'm level 2 of support, I am far from able to get a grip and hold tight when things go south for me. I have severe depression alongside with anxiety and PTSD, that in my opinion slow even more my life.

But that's not the worst, although it does harm my career choice or any social related situation. The worst is the prejudice I get... I have a great resumé, full of experience, I speak three languages and I am learning four more for gods sakes! I've been to courses and done a lot of online learning to buff my skills. But as soon as a recruiter see I'm blind, I'm turned away, they think I'm useless, they think hiring me will mean having to basically hire a babysitter to lead me to the restroom when needed, they probably think that all accessibility needs will be expensive when just by installing a free screen reader on a computer (NVDA) is basically everything I need.

I got to work in a library targeted for blind people, but the amount of abuse I got, and an almost death experience that was brushed off and my boss told me that I should have stayed in the library waiting for my allergic reaction to go away, I was in biomedical science uni at that moment and my pathology professor told me I was really lucky to survive.

I apply for job opportunities I'm very capable of doing the requirements, but apparently I'll always be dismissed because I'm disabled, or worse, I recently found a job opportunity that I didn't apply for because our minimum wage is BRL1,518.00 and the salary they were proposing was BRL1,500.00; it feels humiliating and also make me feel in a position that I don't have the dignity of being treated as a human being, because just by being disabled I'm not worth paying the BRL18.00 to achieve a minimum wage. By the way, that job opportunity was targeted for disabled people as here in Brazil we have laws that protect disabled people from not being hired, well at least in theory, because in real life, prejudice will always exist and hiring teams usually will pick the "less" disabled person. Because a person that lacks a single finger is disabled so let's hire the person missing a finger instead of hiring the person on a wheelchair, a blind person, a deaf person, and so on. I don't want to sound bitter against those that are hired because they don't have a finger, that must be very uncomfortable to live without, but it take the chances for people that need higher accomodations to work and surviving by government aid is basically impossible.

I’m here, darling. Lost with blindness and also maternal German measles or rubella and microcephaly and other conditions do this related to reading memory and cognition, learning performance and coordination, balance, and gate specifically and gate issues and coordination issues among other things with other comorbidities. I want to get involved with others who may have had these conditions fallen into the cracks and or have not have opportunities to be diagnosed in childhood and or I’ve had problems during school although I thought I was smart. I have had problems getting around keeping all and navigating and navigating and and reading. I’m also interested in Technologies Therapy and Technologies to help for these types of issues. I’m interested in for other people I’ve had other experiences and what they have had. And I’m 57 years old with no light perception and also with a circadian irregular sleep disturbance and irregular circadian rhythm disorder with sleep and difficulties with executive functioning focus, hyper focus, and switching from one task to another low tolerance for frustration and other mannerisms. I have also had difficulties in adulthood, trying to find professional, occupational therapist and professionals who worked with people with non-vision with these difficulties and to get resources and help. And some wondering what other experiences people have had with these types of conditions and how you get help or how they got help and what they did. I have some difficulties with expression have had speech therapy as a child, but have a speechless that I’m somewhat unaware of that I’ve been told so I have that. I also have difficulties typing and using touch screens and dictating soft keyboards and using AI assistance. So I do have disturbances in the brain no seizures, but disturbances and difficult planning and doing routines and mental scattered and those types of issues. I’m not a role learner and many more since experience perception and Can say action movement hands on motor sensory and other ways of learning, drama and metaphor and association in using association for and I am not a role learner I am not good with memorization so that I am not. So I do learn differently and I’ve had not very good experiences in either residential or public or higher educational settings. Sometimes I have to re-read and listen to things being described several times to pick it up. I have a slow process speed. What experiences of others had in this situations and what and how they dealt with them in what experiences I’ve had. No heart issues or hearing issues of those type of things but no muscle tone I think. In the other questions for me, let me know. Questions for you again what experiences of others had with these conditions or any of these conditions and what do you do? How do you abdicate and how do you doit difficult for me to do because a lot of people don’t listen to somebody unless they are professional, even if they are ex experien And I’ve tried to do some drawing and other things dancing and some other things. Sometimes difficult to learn things with my work memory issues. So how do you compensate for for that if anybody has had those issues? What do you do. So that’s so that’s me. Interested to hear back in any of the forms.

Hello! I haven’t been active in a couple of years! But I think I’m going to be active once again. So I hope you guys don’t mind but I would love to spread awareness about blindness and other disabilities and, I was on next-door and literally they’re not the best for disability. What happened was I was sending informational links about disability and links that led to such as things such as applevis I asked if anyone around my neighborhood would like to volunteer at the Anaheim Braille Institute center, basically my links had no way of staying there and mind you that they were all informational but, that didn’t matter to them so, I hope you guys don’t mind if I do that sort of thing here. Oh and foster sense of community I mean I know it’s not in my own neighborhood which I don’t know if anyone lives in the Orange County area that is on here but if you guys do, I can actually create a group for my neighborhood if there’s anybody in my area.