u/howmanyshrimpinworld

thats awesome for them

when people ask what i “do” and i say i can’t work due to autism they always seem baffled at best. why is this so confusing to people. it’s a disability. various studies estimate that for autistic people unemployment is anywhere from like 50-80% so it’s far from uncommon. i get so tired of being judged and misunderstood 😩

my dad wanted me to be like rly smart and successful and instead i’m dumb as shit and unemployed who’s with me

hi all! i’m unable to work and have been talking with a lawyer to explore the possibility of applying for SSA/SSDA. there are obvious pros as well as a lot of cons, and one of them is that i feel like i don’t have a good sense of how much of a risk it would be under the current federal administration. i’ve seen a lot of people concerned about it but i don’t know whether it’s overblown. this ember green video about rfk jr’s interagency autism coordinating committee definitely freaked me out a bit. what are your thoughts? does anyone have resources concerning this question?

hi all, last year i was diagnosed and i’ve been a little confused about the diagnosis since.

basically i get dizzy/lightheaded any time i stand still, go from sitting or lying down to standing, go up and down stairs, hold a pose (like in yoga), do activities involving bending over or even just sit very upright and not semi-reclined. it’s worse in the heat. all these activities are extremely uncomfortable and difficult to tolerate. i’ve always had these symptoms and in the last few years they’ve gotten much worse. sometimes on really bad days when i stand up my vision may go black or i may fall to the ground, but i don’t lose consciousness. i learned about POTS and wondered if that could be what’s going on. i did several “at home” tilt table tests with a cheap heart rate monitor that goes on your finger. it showed my heart rate going up about 30 bpm which i understand is on the very low end for POTS

i talked to my doctor and he referred me to a cardiologist, who had me wear a holter monitor for a week and press a button on it whenever i felt lightheaded. he then diagnosed me with vasovagal syncope. he recommended that i drink 96oz of water a day and add 3000mg of sodium to my diet, prescribed me compression tights (that i still don’t have because my insurance won’t cover them), and then basically told me he couldn’t help me any further and i need to find a neurologist.

finding a neurologist is on my to-do list, and fortunately the extra water and salt have definitely helped my symptoms. but i am a little confused about the diagnosis. first of all, i have never fainted before, and i don’t think i’ve ever felt like i was really at risk of fainting other than during a panic attack, which is rare. i also don’t feel faint when getting blood drawn or seeing blood. i’m a bit confused because those seem to be major symptoms of this diagnosis.

when i told my doctor about my diagnosis, he checked my chart and told me that my blood pressure has always been consistently low (wish someone had told me that sooner). he took my blood pressure sitting and then standing and confirmed it drops when i stand. is that normal for VVS?

i’d really like to know how this all sounds to you guys. thanks so much

edit: i actually have fainted once. one time as a teen i smoked too much weed and my vision went black and i fainted while standing in a doorway. it never occurred to me until right now that it could be related

hi everyone. i’m struggling a lot and really don’t know what to do. advice would be appreciated

i’m 31 years old. i’m verbal and it seems like i’m able to act and communicate in a way where people can’t always tell i’m autistic. i also used to have lower support needs when i was a child and teen, but my support needs have increased throughout my adult life. i’ve never been able to hold a job for very long and haven’t worked/have been in continuous burnout for 5 years

my parents have more or less accepted that i can’t work and they support me and i’m grateful for that. i live with my mom, and my dad who lives in another state sends me money. the problem is that other than a place to live and limited funds, i’m largely left to my own devices. my parents don’t help me with daily life. my partner helps me as much as she can, but she struggles a lot too and can’t give me the level of support i need

lately i always feel like i’m drowning. i’m not able to do everything i need to do. i need to be managing money, managing my complicated health situation/lots of doctors and meds, exercising and eating differently than i currently am to keep chronic health problems i have from getting worse, keeping my living space clean and more. but often it takes all the energy i have in a day just to brush my teeth or take a shower. i’m on a path toward my health getting really bad because i can’t manage it and i don’t know how to do anything about it

i constantly try to tell my parents how much i’m struggling, but for whatever reason it isn’t at the front of their mind. they don’t seem to have any interest in even learning anything about autism or my other diagnoses, much less help me. i don’t think they really see me as disabled at all. it makes me really confused and it honestly hurts but i’m trying to accept it

are there options for me? is there a way for me to get the help i need? i’ve heard of support workers as well as occupational therapy but i don’t really know how any of that works or whether i qualify for it. i don’t even know where or how to start

if you have any advice please let me know, thank you 🤍