#cant even get a diagnosis that would allow me to not work all the time

[despairisafunnyword]

i think we’re reaching the end of things

[compassionatereminders]

hi this is just a vent because i cant stop feeling bad about certain things its pretty disjointed. feel free to ignore. thank you for the space for this and the patience and kindness you consistently show. it feels isolating in disabled communities sometimes as someone who was medically neglected and falls into the margins of certain diagnoses and is still undiagnosed for autism and never received any official help, it was all off the books type stuff or i simply suffered/failed in silence. i feel like im not "anything" enough to be real or deserve help or community. that my existence is disrespectful or appropriative of the people who have more "real" experiences that should be listened to and lifted up more than me. that i got the "disability lite" experience somehow and would be misleading others if i claimed to be similar to them. "who needs more of some probably low support needs person ranting about their hurt little feelings, dont we have enough?" < evil thing my brain likes to tell me. i dont actually know what my support needs are its all very confusing and apparently only something a doctor can tell you. but i see people say that LSN level 1 autistics are always speaking over people and taking up too much space, and i get paranoid, am i doing that?! is that me? of course feeling this way just makes me more guilty. nobody has it easy, and you cant compare experiences. i know this. but i still feel like im not allowed. im taking something away from people who need it more. its not rational but im consumed by it at times. i had the difficulties of others used to guilt me into doing things as a child and to explain why i should be able to do something. have been dismissed by caregivers and doctors when i finally got brave enough and learned the right language to bring something up. so i just gave up. if i really needed it that badly, if it really was that disabling, someone would have noticed right? people like that dont just fall through the cracks do they? it's prevented me from seeking out local resources like day programs because they have waitlists, though they dont require diagnosis. all i can think is that im some ungrateful low support person whose taking something from someone who needs it more. and thats a horrible thought to have about myself or anyone and not a real thing that even happens. even a word to describe my experience feels like its asking for too much. i haven't even sought out SSI. even though ive never finished school or went to college, had a job, cant drive cant work, and only get by because i have very nice people in my life supporting me financially. i know how long it takes (im usa) to get on SSI. and how likely it is to get denied even with all the qualifiers above. how invasive and invalidating it is. dont know if i can take that process. but i also need more independence and help than im getting right now, because my issues are worsening as i age and i just cant do things or really live life. but it all feels like its not enough, even though i know theres nothing that WOULD ever be enough. thanks for listening.

This is internalized ableism in action. 1. All kinds of people fall through the cracks of the system. All kinds of people, with all kinds of disabilities, of all kinds of severities. 2. The idea that only the most impaired people deserve support and accommodations is far more harmful to ALL disabled people than the alternative. Disability is not a competition, and turning it into one hurts everyone. 2. Having low support needs doesn't equal having no support needs. And you clearly do have support needs that you deserve to have accommodated.

[teddy-feathers]

i realize i am very privileged. i realize that even if my family dont "agree" with me being trans they probably would have left me to it to some extent even if i was worried about arguments and judgment.

i mean they could throw me out i suppose but it isn't like my gut reaction its just a fear.

but i was afraid of these things and still am.

and because of this i kept waiting for the right moment to come out to them.

and trump got elected and i was just like i cant wait much longer and hes not going to be able to make that much difference that fast

because while not super great there were things in place that hadn't been before. and to some extent i would have been able to say "right now i can transition and it wont make much legal difference"

now of course things are back tracking hard.

back to being officially crazy or delusional or brainwashed by trends or worse.

and. i still obviously want to move forward.

cant argue that its safe to do so. that things are not getting worse. but i still can physically transition as of right now and....

im scared of course that will go away. and that if it does i will have started for nothing because what little i will have done will partially revert and i will have painted an obvious target on myself without even being able to reap the benefits of even idk like a beard.

like even if my family didn't care if i was trans,they would argue against me starting to transition now because of the possible ramifications.

the thing is. i dont want to wait. waited long enough. i want to do. be. feel. exist. be taken of hold in my own life.

it has gone from not being a thing. to im not special. l to oh its an actual possibility but im not special enough. its not allowed for me. to a possibility. to a delicious day dream. to a wish. to a hope. to a desire.

im not at need yet. but i am not waiting until i want to claw my skin off if thats what it takes.

i have shoved this down inside of me and protected myself from out side criticism while criticizing myself the whole time.

i am. scared. tired. angey. and sick. of how things are going and we're less than a month into this bullshit.

i am not going to give them any legal reason to do anything- though soon it may be just being on t might be enough idk - i will not seek legal transitions. i will not get a diagnosis of dysphoria or what have you so something can be fed to my insurance. hell i probably wont tell work company.

i will just slowly change and when people ask and i dont know them like that i will say i have a health condition. if anyone presses further im working on it with my doctor. thats all they get to know.

thats not something anyone can act on as of yet. a d if just being on t becomes something actionable i will of course revisit my opinions. if they take the ability to take t away i will revisit my options.

but im not going to obey in advance of thier obvious intentions. im not going to just change my mind or how i feel because theyre going "actually fact check this is bullshit" why you lying like that.

i know im not alone, i know there are so many trans people in the world. i know there have been throughout history.

and even if it was proven that sure trans people exist but i am not one of them i would want to try transitioning until i felt for myself that it wasn't what i wanted.

and what harm would it do? oh no ill be modifying my body un nessesarily . itas my body what does it matter.

the health concerns - im willing to assume the risks

ill be stuck as an ugly girl - matter of opinion but im kinda not "taking care of my appearance" anywas, a lot of the changes will revert, and the ones that dont im fairly aware of and am will to accept the risk of having to keep even if i dont end up liking transitioning

the legal or job related ramifications - im not seeking any changes from outside forces right now, im not having it documented, and if going to planned parenthood or taking t becomes reason enough to come for me in the night - or day - i probably have bigger issues and theres too many comments on the internet for me not to probably be dragged away for "reeducation" or "mental help"

if my job fires me because i start growing a beard and i decide its too much of a hassle to mitigate that by shaving regularly (or i just. want a beard) or because my voice gets annoying and then drops. or my boobs disappear later then idk i sue them for looking at me and going "thats an ugly girl" because like. i aint telling them i aint an "ugly girl" and what they suspect aint actionable as it has not changed anything about my job preformance.

also all this shit takes time. theres gonna be people fighting back. theres going to be well actuallys. theres gotta be actual legislation.

socially becoming a target - to some extent it is a free country. to some extent the right to swing your fist ends with the other persons nose. if that changes too much more my having a vigina will work just as much against me socially as me rocking a beard.

i am so tired. i feel like ive been strangling this feeling inside me all my life though i can only prove that i have since 2018. thats what? 7 years? pretty long ass time. ive reflected and consider enough.

im ready to act.

it shouldn't make a difference. i will mitigate the things i know will. i acknowledge that even then it will make a difference.

but this is not up for debate. i wont let it be.

somehow...

im awful at setting boundaries.

but this isnt going away because some assholes have decided its not real. its not going away because it would be safer if it did. its not going away because my family will probably think its stupid and i could just not.

i am getting ahead of the point where i just not cant.

by a slim margin.

this is not a submission for review. this is notification of whats going to happen.

[databent]

this is just me rambling mostly about myself sorry. but i hate how much it Sucks having a completely invisible and often totally unrecognized+dismissed disability 🥲 like i have non-24 hour sleep-wake disorder and it makes it impossible for me to keep a normal schedule (when ive had to - ie when i attended school, or if i were to work any regular job - id get so sleep deprived i couldnt wake myself up and/or would become too drained to function) but circadian rhythm disorders are full on seen as nonexistent by a majority of the population and those that do know of them often think its just "being a night owl" and you "can just work through it with a little discipline". so access to a diagnosis and/or accomodations is virtually nonexistent and i basically just have to either constantly deprive myself of sleep and permanently wreck my health or just put my entire life on hold for almost a third of every month. and im fortunate enough to have a job that (somewhat) allows me to work flexible hours and generally lets me work only the days im awake to, but because of my disorder being so invisible i know that from the perspective of everyone else there i just look like a guy with unpredictable attendance who comes in at inconsistent times and often only stays for like three hours, with nothing at all that makes it obvious that its because of a fucking disability. so to almost everyone that doesnt intimately know me, for the rest of my life, i will look like nothing but a profoundly lazy and unreliable individual. and it sucks!! and it makes me so mad!!! and its hard to face the fact that even what i CAN do still isnt enough so i constantly have to break my fucking back and put a lot of strain on my body just to meet like what are considered bare minimum standards. im constantly walking on thin ice because there is just no understanding from people of what things are like when you have a lifelong disabling condition that cant be fixed. and i still have it relatively easy! bcos during the times when im functional during the day i have pretty much no issues doing so. but for people with an invisible disability that affects their ability to function or work All The Time theyre Still often held to the same standards as everyone else because of perceptions of what "being disabled" is and basically i just really really hate how society treats invisible disabilities. fuck. its not fair or sustainable its literally killing people

[mithliya]

You don't have to answer this obviously, its embarrassing but I feel like I don't know where else to ask - NSFW

I've always found penetration difficult. I feel like I'm broken as a woman because it feels like everyone around me is able to do it and enjoys it and I don't. I don't want to be graphic but I don't know what to do. I'm scared to go to a doctor in case they diagnose me with vaginismus. I don't know if I should even try to make it better or just leave it. I feel like I can't experience my body fully because I cant do this one thing. I know thats stupid but its what I think in my head. I can't use tampons, and sexual penetration is terrible. I can use my hand, but I can't feel anything. It just doesn't feel pleasurable and I can't go in very far. If I use a dildo, it hurts. Not every second, I go slow etc but I can't get much in. It feels painful at the side of my labia. No matter what direction or position it just hurts. I can almost feel a bone blocking it or something. I feel like I'm broken and a freak and I don't know what to do. I cant talk to my friends because they all talk about how they love penetration and I feel too ashamed of my situation. I'm scared I'll never be able to satisfy a partner even though I'm a lesbian because I see women on here and tiktok talking about strapons etc and I know it would hurt and be impossible to have sex like that. Even when I relax and am definitely ready to try penetration, it doesn't work. No matter what I do it always feels uncomfortable in some way. If it doesn't hurt, it feels like nothing. I'm afraid I do have vaginismus or something is really wrong with me. I've never allowed a partner to try. I've not had a long term relationship and I worry women will be really put off if penetration is something I can't partake in. Ive not had loads of dating experience so idk if this is even a reasonable worry to have. im so sorry this is all over the place. I totally understand if you cant answer. Ive tried googling stuff but i cant really find much.

sorry for taking a while to respond. first of all i dont see whats embarrassing about this?! you have not said anything here that i think is embarrassing.

i don't particularly enjoy penetration and ive come across MANYYYYY women who don't. particularly many lesbians. its ok if you don't enjoy penetration. it doesn't have to mean you have vaginismus either, although what you described might be that (potentially on top of you already naturally not being keen on penetration). that said, there is no shame in being diagnosed with vaginismus either. receiving such a diagnosis can help you understand your body better and if you do think you could potentially enjoy penetration then maybe a diagnosis would help open that door for you somehow. it might also end up that you don't have vaginismus. either way, there is no must or need in enjoying penetration. there's probably even straight women who don't like it! just because there's many women who do, does not mean there's something wrong with you for not enjoying it.

i don't use tampons either! im 26 and first time i tried to, i was 24 and ever since then ive used it maybe a grand total of 2-3 times? it feels uncomfortable and painful for me too. its ok, many women do not use tampons so you're really not missing out there. it isn't a requirement in female adulthood.

also penetration alone does not feel pleasureable to an even larger group of women! so once again, there is nothing abnormal about not feeling much when trying it on yourself and its not abnormal to not find it pleasurable. and i don't know how experienced you are sexually, but the other stuff you mentioned could also be because you're dealing with shame & fear & aren't aroused enough while trying penetration on yourself. and if your friends were to judge you for not enjoying penetration, then frankly they're the ones that are weird, not you!

and from my experience at least, women have not been put off by me saying i don't like certain things (like penetration) and prefer other acts. if you're not sexually compatible with a woman then that is fine, but no one can expect you to enjoy a particular sex act and then judge you when you don't.

i think before worrying yourself this much, you should first find a woman you are comfortable with and attracted to. you could tell her about your fears & insecurities before having sex-- it can help if you're going to engage with her sexually bc it takes off anxiety from you while also making her aware of how she should be mindful & gentle! if you end up trying things with penetration with her and it becomes clear to you that you simply do not like it or like it with certain limits & restrictions or love it or whatever else-- all of that is normal. but don't worry yourself this much over something so small & a normal preference like not liking penetration, its really not abnormal to not enjoy it. if you're sexually inexperienced and have barely even dated then i get why you're worrying yourself so much but i promise when you're sexually active then normal people do not care about that the way you might think they do. penetration isnt for everyone, it doesn't have to be something you want or enjoy either

[dykelibraries]

sup its me jack welcome to my vent palace heres my motherfucking sityaaation trigger warning for maybe everything under the sun this is genuinely gravely serious but ill try not to go in depth w anything.

yah tldr here my awesome backstory dads a pedophile i cut him off a few years ago he did some narsty stuff and my mom knew and didnt dooo anything. and she says she hates him now but my brother still visits him and im not allowed to say anything. my dad also severellllyyyy neglected me (he had sole custody for a whilee)

uhh my mom keeps making Choices in men. her last boyfriend tried to kill us and my mom had me lie to the cops about it. her current boyfie is a racist and has referred to meee and my brother and family with slurful wordage maybe a couple times. and he constantly threatens to kick us out if we ever say anything negative about him but then my mom gets on my ass about not liking him.

my mom straight up fakes my identity constantly soo she has control of my bank account and medical records and like. i dunno. everything that should be private. she comes in with me to doctors appointments and will lie to the doctors if she doesnt agree with a diagnosis. also she hid my social security card and birth certificate so thaaat suuuuucks

she refuses to let me learn how to drive, and. gestures. i have horrible chronic pain, i cant usually walk past my driveway in all honesty. soo i cant really GO anywhere.

uhh my mom kinda gaslit gatekeep girlboss Manipulated me out of reporting my dad when i had a chance to. and then kinda sorta told me i couldnt trust my therapist. who i havent seen in a while so idk. my mom also refuses to get my brother help with his eating disorder and kinda. encourages it a lot if im being honest.

uhh i recently figured out that i think my mom may have been posting child porn? of my brother and i growing up. which isnt superbly sick i dont think. idk maybe im being dramatic. i posted a couple comics on here about some stuff shes said/done in this context so i guess yall can decide if anyones even reading this.

i guess this is more petty teenage bullshit than a serious problem but shes really mean to me. and its not great i think. idk she does this thing where shell act like im an unstable and horrible person and i have been since like..i think three? is the number she usually uses. but she acts like im the devillll and shes calm and collected so Obviously im in the wrong. and shell say really mean things and act like i started an argument by standing wrong. like leaning on a wall or smth. i guess shes kinda mean at kinda. vulnerable times too. like i remembered. something my dad did. and she kept yelling at me for crying cuz it wasnt a big deal. sophie said it was a really big deal but i dunno. or another time when i had a really really bad ptsd episode at school and when i asked to go home early she made me stay Past the end of the school day bc she wanted to teach me i couldnt quit. or another time when i had a chronic pain flareup while at work and my boss straight up TOLD ME to go home (librarians arwe chill like that) and she came to my workplace and uhh. gestures. had me stay multiple hours past when my shift would end. while i was like. yk breaking down cuz of the pain. she was there the entire time and just refused to take me home or give me the painkillers she keeps in her purse for Her chronic pain. i dunno. shes really mean to me.

uhh she checks like. a decent. amoutn of my social media. she slipped up one time and told me. n shes had friends in the past tell her things behind my back so i get kinda nervous telling people anything tbh. and she listens in on verbal conversations.

this isnt her fault i guess but it makes things harder for sure. but i dont havee my high school diploma. long and complicated story i dont feel like telling. shrug. and i dont have literally. Any friends offline, nor family i can talk to outside of this house.

i dunno what to say after this bwomp. if you read all this heres a sticker ⭐

[idaliascruelworld]

My grandfather died and idk. Its hurts in a way i cant describe. I wasnt always fond of him bc he is kind of conservative and definitely favored my cousin over everyone else but there were so many moments where he deeply cared for me like no one else did.

Like when i said id love to go to the mountains we literally went the same day and the day after.

Or making sure the tv in the room i was sleeping in actually works while not caring if it works anywhere else.

Or when he picked us all up from the airport he would always ask us what we want to eat and not sit down until everyone had something to eat even if its just a slice of bread (tho he would kill us for just eating that and nothing more)

My grandfather was a hardworking man always caring for his garden in his village (we spent most of our time there) he planted several vegetables and had apple and cherry trees. He would wake up early just so he can work around, build us a hammock, prepare the inflatable pool when it was hot outside, plant flowers so it looks nice, drive the extra mile to get us whatever we want.

And now hes dead

He suddenly fell ill and we found out that its some type of cancer. I visited him 2 months after the diagnosis and he was so skinny and so fragile just looking out of the window we werent even allowed to hug him. It was really hard for him to talk or walk or eat or do anything. My hardworking grandfather became a man chained to a chair.

He just became skinnier and skinnier, the medication wasnt helping so he changed it, the new one wasnt helping either so they started chemo in January. That when they said he ll only have four months left to live.

My mother showed me a video of him in the hospital. Even skinnier, no hair bc of chemo. My father crying in the background. My mother had to go to türkiye several times for several weeks so she can help. At some point he had to wear diapers and be fed because he was too weak. I remember being angry at my family for having my mother leave me with my sibling but now i regret nothing more than that it was so selfish of me to say and think that.

On the 19th this month my mother suddenly left to visit him since his condition got really really really worse and just at 1:10 AM 20.02.2024 he died in the hospital.

My brother woke me up to tell me he died i begged them to let me go to türkiye so i can visit his grave and when my brother left the room i looked at the ceiling and started crying for hours

I had to take a later flight than all of my family members so i was flying alone and i cried all the time. I cried and cried and begged him to forgive me and cried and cried and then i was at the village he grew up in, where i spend all of my summers. I went into the house he built for us with his own hands but he wasnt there. I hugged my aunts and uncles and my grandmother and lastly my father and i just couldn't do it anymore.

I had to think about my father and his sibling who just lost their father.

I had to think about my cousins who grew up with him until they moved here and even called him father.

I had to think about my grandmother who had lost her husband of 55 years.

He wont ever pick us up from the airport again

He wont ever protect me from anyone

He wont ever drive me to the mountains

He wont ever grow the best cucumbers and tomatoe ive ever eaten.

He wont ever just walk around in his garden doing stuff since the sunrise.

He wont ever repair stuff we broke.

He wont ever just sit there and watch us have fun.

I wont ever see his face again.

I wont ever hear his voice again.

I saw his grave and there was no tombstone it was just a big pile of dirt with two big stones indicating where his head and feets are. They told me its tradition to wait for the dirt to completely settle on the ground before getting a tombstone which only made it harder to realise.

This year already started horribly and its just getting worse and worse and worse and worse and

[abcsofadhd]

I’m sorry this is way too long and too depressing, I ended up venting because I don’t have anyone to talk to about this. If you see this ask, feel free to ignore, you don’t need to publish all of it or any of it. My question is at the very end.

I was recently diagnosed about 3 months ago and started meds with the sole, singular hope that I would be able to start tasks. that’s it. no other symptom I have matters to me, i just want to be able to start the tasks I want to start when I want to start them. I’ll accept any shitty side effect if it means I can actually do the work I need to do. I’m so fucking desperate to be able to get my work done, my entire workflow was absolutely destroyed and every coping mechanism I ever adopted rendered totally useless by COVID. My inability to work, meet deadlines, and follow through on promises has been ruining my life since March.

I was tentatively excited (among other weird complex feelings) when I got my diagnosis because I’d hoped that meds would be a solution. I’d read peoples accounts of how all the tasks that were hard for them suddenly became so easy, and I was so hopeful that maybe I didn’t have to be like this forever.

But it’s been three months now, and I’ve been through several stimulants at various dosages, and none of them have done literally anything. I haven’t felt the calm people talk about, I haven’t felt anything at all, and I certainly haven’t seen any increase in productivity at any point. The stimulants I’ve tried either have super inconsistent benefits, or they have no beneficial effect at all at any dose my GP is willing to prescribe.

One of the meds actively hurt my productivity because not only did it give me fucking nothing, I spent two weeks (until I gave up on it and we moved to the next one) coming home utterly exhausted and lightheaded with a headache and laying in the dark at 5pm refreshing twitter for hours and feeling helpless and shitty about how much work I wasn’t doing. That med was the worst one, the rest mostly did nothing except make me not hungry. The most effective one so far increased the frequency that I had hyperfocus, which was better than increasing fuck all, but I still couldn’t choose what to hyperfocus on or switch tasks, so it still didn’t give me the one and only thing I need. And for some reason it stopped even giving me that at higher doses?

And I guess at this point I’ve just lost hope that meds will ever be effective for me. I know it hasn’t been that long, 3 months is basically nothing, I’ve read this can take years. And there’s still other meds to try, and if the next one doesn’t work my GP will refer me to a psychiatrist who might be willing to try higher doses. But in the meantime I’ve continued to not be able to work and faced the professional consequences, and it’s been so humiliating and frustrating and hopeless. It’s like I’m waiting for a miracle to occur, and my life is on hold until it happens. I keep getting angry at random posts that share their success stories and talk about how different it is when you start meds, because that’s exactly what got my hopes up. I feel so helpless.

It’s just so demoralizing that I’ve spent my entire fucking life until 3 months ago assuming that I don’t have it any different from anyone else, so if I was struggling, it must just be because I’m lazy and stupid and worthless. And I just accepted that that’s how I am and I can’t change it, so I was able to make my peace with it and find ways around it. But now, I find out that maybe I wasn’t ever lazy and stupid, and there’s a solution that’s supposed to fix me. And now I can’t go back to just accepting that I’m like this forever, I want that solution to work so badly. But the solution isn’t working, nothing’s different. It’s supposed to be different and it’s not. So I’m still just as worthless as I always was and might still be forever. The status quo remains unchanged except for the fact that I don’t know how to accept it anymore.

If meds just don’t work for me at all, then that means I’m just stuck like this forever, and like. That means I should probably stop wasting my time and everyone’s time and drop out of grad school. If meds cant get me to start necessary, important, time sensitive work, then I will not be able to complete this program and I definitely would not be successful in the competitive career I’ve worked towards. I don’t know.

I’m sorry for venting, I’m sorry this was depressing. The question I wanted to ask is, is there a good way to tell that meds won’t work for you? Is it supposed to feel like something, or not feel like something? Do you think there’s a point when it’s not really worth it to continue trying meds and upping dosages? Thanks, sorry again.

Hey, no need to apologize. Genuinely. 

See, finding the right meds and right dosage takes time. I had to try 3-4 meds at 5 or so different strengths till I settled on one that worked for me.

Everyone ticks differently. So different meds can work differently with people.

⠀

How I figure out the effectivity of meds is how easy it makes it for me to shower. Its usually such an effort for me, usually taking up to an hour of psyching myself up. 

On meds, or rather the right dosage of meds, I can just get up and shower and immediately. 

⠀

Your experiences are valid. They are also common among ADHDers. 

I’ve gotten asks many times from ADHDers wondering if there was a point in trying out different meds. Cause yea, trying different meds can be tiring and take a lot of mental effort.

⠀

There’s also something I wanna add at the end, from what you’ve said.

every coping mechanism I ever adopted rendered totally useless by COVID

⠀

Stress and large changes make coping harder. A lot of ADHDers are struggling more because of it, medicated or not. 

My point is that THAT could be the reason you arent finding your meds to be as useful as they could be. 

Meds make it easier to do things you want to do. Coping strategies allow us to structure tasks to make it easier to do. 

So what happens if our coping strategies fail? 

Well, meds wouldn’t be as effective.

[darkobssessions]

Coping Tips for Autistic Women

I am compiling a list of resources for aspie women along with tips to manage symptoms and navigate the world. Regretably, most of my personal experience comes from living undiagnosed and unaware about this for the last 27 years. There was a giant elephant in the room with everything, and I have only recently worked it out. This means that most of my habits prior to this point were ones attempting to cope with a giant unknown, the limits of which were unclear. But they more or less worked, because, as I am realising, there’s always been something they are attempting to address.

With other diagnoses and ways I attempted to explain and understand my difficulties, there were finite causes and treatments. I should have been improving if I tried x, y, or z. And I did improve my symptoms in many ways, but there was something missing from the picture. That is that autism is my personality, my state of being, how I process and view the world. And no tool, medication, process or treatment was ever going to change who I really was. Being misdiagnosed (or being missed and failing to receive the autism diagnosis) means that I have been trying to correct something that you cant ‘correct’, and shaming myself for something fundamentally me.

Some of the tips I learned over time, from how I am as a person, without the framework of reference of neurodivergence or autism:

Sensory:

My sensitivity has always been a big waving flag. I felt and saw things others didn’t. I felt more deeply. I sensed the microeffects and changes in everything. I responded harder and faster to any chemical, environmental shift, any positive or negative event, As we all do on the spectrum, we attempt to navigate our sensory environment. And we come up with coping mechanisms, good or bad, before or after we realise we are on the spectrum. For me this was a strong aversion to the things that upset me, that disturbed my senses. It was an orienting of myself in a way to avoid the disturbances, going inwards, withdrawing and even shutting down. I learned that I could not and did not want to handle crowds, loud places, supermarkets. I lived in a giant simulation attempting to minimise and avoid as much as possible the things that hurt. I learned that I was extremely sensitive, no one else seemed to be, and I just had to manage it. Since discovering autism in the last weeks, I am able to embrace the fact that sensory overload is a thing, and I really do feel pain in my body when things are too much and too loud, and just wearing earplugs has mitigated so much of this. I was gas lighting myself before about feeling a certain way because there was no explanation, that I was aware of anyway.

Physical:

I have had so many problems over the years, since I was a young girl. I used to get food poisoning symptoms really easily. I had hidden allergies. I remember a lot of my childhood spent doubled up with stomach pains, or having a fever. My family didn’t know any better and fed me and treated me as they did every other member. I was not the same, I did not feel the same, but I took it all in. By the time I was in my early teen years, I had cemented my aversion to certain foods, taken the only control I had at the time against an encroaching and controlling mother and turned it into anorexia. I avoided things I didn’t like, again, and set up a system of control that made more sense than the gaping wounds and confusion within me. Starvation triggered bulimia. And a viscous cycle of malnourishment and dysregulation unfolded. I didn’t learn until many, many years later that my system was so sensitive and damaged that if I tried to go back to how I used to eat as a child, I would get terrible symptoms. So my coping tips as I have healed from the eating disorders and become more aware is to figure out what the triggers are, what hurts, and to avoid it. This along with adding in nutrient dense foods and working on the deficiencies has done wonders for me. I’ve done tremendous work on my autoimmune conditions, gut problems, sensitivities and inflammation levels and the difference is like night and day. That I can induce psychotic symptoms by deviating or introducing foods I am intolerant to is no joke. The tip I can share is elimination diets truly do work, the keto diet is recommended, and eating the carnivorous way saved my life. My eating disorders for almost 15 years INCLUDING the 7.5 years I was a vegan, mostly high raw and fruitarian depleted my nutrients so badly that every symptom was enhanced 100% and I was eating pretty much ONLY food I was actually intolerant to. Ahem, plants, I’m talking to you. The peace I feel, the nourishment and rest on a nervous system level having eliminated them is unreal.

Social:

I have always known I was different, in a deep, visceral way. How the adults in my life answered questions was inadequate. I saw through people and things. I was far too intense and serious. I learned to watch and observe humans and pick up cues so as to attempt to fit in. I spent the majority of my life masking, something I am only now finding out about and unraveling. I kept notes on the human experience, and saved colours, sounds, feelings, because I felt like I couldn’t communicate the truth of myself otherwise. Over the course of my life there have been inexplicable (until now) events. Lost friendships and relationships, strings of broken promises, people not acting on what they say, confusions and miscommunications, and many dangerous situations and predatory bonds. I made what sense I could of it from whatever lens I could find. It was the trauma, it was my soul contract, it was what I deserved, it was being targeted- all close, but not quite within the realm of being so naive, open and fundamentally different as you are on the spectrum. I just always assumed everybody was like me. I had to learn the very extremely hard way that not everyone felt and thought in the same way, nor had good intentions. I still struggle with the fact that humans don’t tell the truth. It is of no relevance whether they secretly know it. Most people are more comfortable with illusions. I always knew this, but the diagnosis gives me a lot more peace around it. It’s allowing me to accept the fact that if I look around the majority of the people I see are not walking around processing and over-analysing everything, feeling sounds, decoding patterns and obsessed with hacking the code of reality. Less pressure that way, and more in the way of what can be viewed as natural interaction on my part. I will solve the mystery of the universe out loud otherwise, and get the blank looks and the discomfort. I have found my people, a tribe of likeminded individuals, I have gathered friends over the years that didn’t run from my weirdness. But I am mostly content to be on my own, knowing that I can only use what is around me to try to convey how I feel and who I really am. And that will probably be a book, a movie or a work of art, much better than a 2pm rendezvous when I can’t stop talking about the hidden signs.

Emotional:

With the intensity of my emotions I have developed borderline personality disorder as a means to cope with being autistic and not knowing. I have been diagnosed with both that and bipolar because I have intense stints of emotions. They come and go in waves, lasting hours, lasting days and weeks. I consider it to be an energy management system to cope with the demands and stressors of modern day living. Creatives always withdraw and hibernate, and come out with new insights and art to share. The way that I feel and view the world is special. It’s at the basis of my writing, what I choose to engage with and how. My emotions make me who I am. I feel intensely, I share passionately about how I feel. I snap, I break, I shutdown, I come out again and I am a bright, shooting star. There is an excited little animal that lives within me and it is the strongest most passionate thing known to man. I thought that my negative experiences or trauma killed it, but this is before I knew it IS me and cannot die. So I have stopped trying to cram these emotions in or explain them. Stopped trying to attribute them to whatever script people were following when they dealt with me. Throwing me into the depressive, anxious, panic stricken, eating disordered basket case category. The missing piece now makes so much sense. The ways I responded to being autistic were coping mechanisms, such as developing a personality disorder, to deal with the pressure. My psyche splintered under the weight. My tip here is in embracing your inner life and world, embracing that you are different, so that all of the mental and emotional acrobatics needed to attempt to explain the issues or fit in can be put to rest.

Spiritual:

Being different and feeling differently means I naturally saw and expressed things in quite a strange way. I was convinced of a secret world to reality, behind reality, living on behind a paper shell, so to speak, that would rip if only I could reach out and tear it aside. That conviction was rewarded as year after year my awareness grew, my gifts multiplied, and the experiences I had revealed to me the hidden hand of god. There was very much design to the universe, a pattern, weaving through all things. And i was a part of it, not some discarded afterthought or simple byproduct that had no place. In the early years, I kept my convictions to myself, nursed them with experience. I died a thousand deaths in dark nights of the soul, crashing against the turf of my ignorance. I broke open, and everything I had been so sure of as a child was revealed to me again and again. I was convinced I had a purpose, I could feel the deep tides of human emotion and motion, could feel into the genetic sequence that had birthed me. I felt like an alien, but that slowly over time the map of my operation was being revealed to me. This is what it feels like so many years later to stand here and find out about being autistic and realise that how I felt in my soul all these years was real, and that I can begin to truly fulfill this mission now, to share my experience in words I know others will understand because they feel the same way too. It was the challenges that I never understood, while the gifts were the reason to stay alive. My message to myself and others now is that there is a point, a reason to persevere and understand yourself more. The suffering reveals so much of the true state of things, so that we can protect our tender hearts and build new things that honour who we really are, our souls. 

Resources, movies, literature to follow. I just wanted to share something of a summary now of my realisations since coming home to myself.

[thoughtsfromthevoid]

Things my parents have said and done that terrify me (I have anxiety and depression, ADHD and currently have tics ((Or a Tourettes diagnosis they don't believe in)) from being so anxious all the time)-

-That if I keep coming home late (normally like 5-10ish minutes because traffic) I won't be allowed to go out at all. (I'm not even the one driving, and my friend(s) aren't doing anything to keep me out past that time.)

-"You're only the 357 thousandth teenager to pull the 'I'm down' all the time, its not going to change anything. Drama is drama." (Said because I've been severely depressed lately and not reacting to things like normal.)

-"There was a miscommunication between us (mom and dad) on what you're allowed to do at night." (Had to have me stop for a bit until I got on tic meds, it was very bad. Doctor told us to. I had been doing after school things and been on the meds for 2 weeks at that point)

- "Don't manipulate me into saying yes to things." (Accidentally said friends and I were going through the drive through at wrong restaurant which they wouldn't have said yes to)

-"Don't wake me up if the house is on fire." (Said not to me, but to other parent, out of frustration of being startled awake because they don't sleep well)

-Some more things I won't say on the internet

-Disagreed with my tourettes diagnosis so strongly because they didn't see the tics I referred to happening in the past and since they notice everything, it makes this invalid.

-Also said I don't have tics like others with tourettes and that they don't say random things and is more repeated and that I don't do that when I definitely do, said a wrong definition as well, even after research

-This morning I wasn't apparently allowed to talk when coming into the living room bc it didn't need to be said to them while cooking, not allowed to go in the kitchen at ALL during this time either

-Said every child who doesn't have to do the same amount of chores as me was a spoiled brat or had a ton of siblings when I was struggling with chores and schoolwork for a bit

-Constantly talks negatively about me behind my back to other parent thinking I can't hear when 90% of the time, I can, instead of having a conversation with me about it, its always me being in trouble. Also never sees my improvements and only the failures, it doesn't matter if im working to fix something until it's fixed

-Their autism being used as an excuse constantly as 'it just is this way' and whatever they saying always having to be the truth, even when it isn't. Its not the autism thats the problem, its the constant excuses because of it and toxic mindset and unwillingness to listen. They aren't the only neurodivergant one, I have ADHD. I struggle too. This doesn't seem to matter

-Getting upset when I talk too much and wanting me to be quiet, not wanting to know any of the details when im excited, even when its harmless, the overall frustration of it and wanting me to stop talking so often

-This is normally in effect especially when they are watching stupid (and passable) mindless tv, that I'm constantly triggered by. I constantly have to close my room door to not hear it while doing things like homework, is still always too loud, this is every day after school in the living room, or every weekend. I cant be in that room anymore basically because of it. They get frustrated when asked to pause it quite often, or when I ask for space when doing chores out there, because I hate them looming over me all the time, the TV also makes an unbearable noise for me recently as it is going to die soon of overuse, every time it is on, which stops me from watching basically anything out there or being in the room too long

-Not feeling comfortable enough to practice when parents are home because of looming, coming in while practicing when its not necessary, getting mad when i play things wrong and yelling across the house about it

-my room is my only space, one parent claims entire basement and sometimes I'm not allowed down there at all, even sometimes when I had to sleep down there to feel safe (unrelated issue but still) other parent has living room

-"I dont understand the want/need to go over there." Me asking to go to a friends house after school, everything needed to be done was done, after a really hard day and me feeling trapped in the house. Apparently I need a reason to go and hang out with friends. I do not feel safe going for walks or anything for other known reasons.

-Getting frustrated with my chair placement every concert in orchestra, never proud of me for anything like that either. (Or at least expressed to me) Makes me feel worse and worthless, to the point where I am considering quitting even though I love the instrument, the anxiety and depression now caused by these issues and pressures being put on me over the years is becoming unbearable. Pressure and anxiety lead to me quitting and hating piano after 8 years as well.

I'm really sick of being in trouble for things I can't control, or something I didn't do intentionally. If it was on purpose? Yeah, I get it. If it was something bad? Sure. I never do anything I think is bad, or know I'll get in trouble for. I don't want to be in trouble. I hate it. It makes me feel very afraid. I wish they would trust me more. I know my mental health is bad, but I'm not actively trying to do things wrong, and I do actively try to fix my mistakes. I wish they would really listen when I tell them these things, even be a little more lenient. I wish I was good enough, I really do try. I love my parents so much, they can be so very much amazing, but they can be toxic to me too. Even if the intent isn't there, it still is harmful. It makes me feel mentally unsafe in this household. I don't know whats going to be taken away at any moment. At least I feel that way. I want to move out. I really do.

[chronicillschronicpills]

so hey, i just found ur blog and tbh im really looking for any advice i can get on dealing with chronic pain and fatigue? i dont mean to be a bother sorry! im just slipping into hopelessness with some people and even doctors not taking me seriously. i have done hours and hours of research and i think my symptoms may line up with sjogren's? it's just so hard for someone to look at my symptoms (even though they have been worsening since october 2019) since absolutely nothing shows up in my tests.

Hey!

This is not a bother at all. Also sorry if this is a late reply, my Tumblr never notifies me when I get messages so I have to manually check! 

So to start off with, I know exactly how you feel. I have been there. It is truly horrible and I am sorry you have to deal with this. There is a massive problem with doctors not taking young people, especially women, seriously when it comes to pain and fatigue. It’s always ‘stress’ or ‘depression’ or ‘in your head’ and it’s just really infuriating. It’s a terrible place to be in. 

I think this is a really important post. Its going to be LONG. 

I’m going to first address the issues with doctors not taking you seriously. 

It took me 7 years to get a diagnosis. This is NOT unusual. In fact, I’m almost positive that the average diagnosis time period for someone with lupus is 6 years. My first piece of advice is SELF ADVOCATE. This sounds easier than it is and it takes a lot of practice. I used to just burst into tears if I was trying to explain anything to a doctor. It is easier to self-advocate when you are calm and are clear about what you are going to say. To help with that, I suggest KEEPING A JOURNAL of your symptoms and have all your medical records in order. Make it in depth. Before an appointment, WRITE DOWN WHAT YOU ARE GOING TO TALK ABOUT. This way, you won’t forget anything. I like to reverse in my head how it is going to go. You really have to TAKE CONTROL of the appointment. You are allowed to demand certain things. I had to demand a referral to a rheumatologist when one of my shit GP’s refused to. He ended up giving me one, and on my first appointment with the rheumatologist, I was diagnosed and put on medication. It is important to DO RESEARCH but not too much. Don’t let the doctors know that you’ve done too much or they will think you’re a hypochondriac or something, maybe hurt their ego, who knows. You need to have a GOOD GP. If you don’t like your current GP, find a new one. Do research on good GP’s in your area. Ask your friends and family about theirs. Also, the best indicator for a doctor to know where you are at in my experience is saying MY QUALITY OF LIFE IS POOR. Describing your symptoms in-depth and how they affect your day to day functioning is important. Lastly, I always think you should BRING SOMEONE WITH YOU. Bring someone you trust, someone who knows about your condition. This is useful because they can back up what you say, they are there for support, and a doctor is less likely to treat you like shit with someone else present. You should also brief the person who is coming with you about what you would like them to do in the appointment. Do you want them to just stay quiet, or would you like them to sometimes talk or want them to take control of the appointment? 

My advice for chronic pain

Pain killers (it make seem obvious, but they really help). This is a touchy subject for a lot of people, as there are obvious problems with long term pain killer use, but they are great for PRN. There is a possibility a doctor will not prescribe you with them though. 

NSAID’s (Nonsteroidal anti-inflammatory drugs) can be helpful for pain

Tricyclic antidepressants are used to treat chronic pain

Topical treatments; I use tiger balm patches. These are the ones I use: https://www.amazon.com/Tiger-Balm-Plaster-Warm-Patches/dp/B07Q6WN9ZM. They help tremendously for me. I sometimes used tiger balm cream. Other good ones are Icy Hot vanishing gel and bengay. 

Pillows: I used 12 pillows to sleep with. I know it a lot. But it works really well for me. Experiment with pillows; between your knees, under your arm, behind your back, under your hip, under your legs, etc. I literally sleep on a bed of pillows. 

Reduce stress. High stress= more pain

Join support groups; I am on several FaceBook pages that talk about the issues that I have. This blog on Tumblr has been incredibly helpful. It’s good to have people who understand what you’re going through. 

I cannot exercise, but some people find it useful (i never did) 

Some people find meditation helpful (i do not)

Massages help but obviously, that’s not always accessible, they are expensive etc. 

My advice for chronic fatigue

Medications; depending on your diagnosis, some medications can help with chronic fatigue. The medicine that helps with my chronic fatigue is Plaquenil which is often used to treat fatigue-related with Sjogren’s. There are other medications that can help with the quality of sleep such as benzodiazepines and tricyclic antidepressants. 

Do not do too much activity (that has helped me, but for others moving and doing exercise and movement can help) 

Have a routine 

If you study, make sure you tell all your teachers and lecturers beforehand that you have a health issue that may impair your ability to come to class all the time or hand in assignments on time. In my experience, they have always been really helpful and understanding. 

I also studied a lot from home, using online resources. I also took fewer papers at university to make it more manageable for me.  

Look after yourself, make sure you eat good foods. A lot of people try different diets but they haven’t helped me personally but have been beneficial to a lot of other people. Definitely talk to your doctor about this though. 

Give yourself a break, do not be too hard on yourself if you cant do the things that others are doing 

Some doctors consider stimulant medication but I have not tried this

Lastly! Sjogren’s!

I know a bit about Sjogren’s because it’s related to the disease that I have. It is an autoimmune disorder. If you think you have Sjogren’s then you need to ask your GP to do blood tests associated with Sjogren’s such as rheumatoid factor, ANA, antibodies (anti-Ro (SS-A) and anti-La (SS-B) antibodies). Ask for a referral to a rheumatologist. SELF ADVOCATE. Do not stop until you find your answer. Also, get routine bloods. It is common for them to change over time. I

If any of my followers have Sjorgens and have any advice, please comment!

I hope this helped, I wish I could come up with more advice on how to deal with chronic pain and fatigue, but I know it is really hard. If any of my followers made it this far and have any tips, please add to this post and reblog it so that more people can see and add to it.

EDIT TO ORIGINAL POST

This information was supplied by a tumblr user called @graciecatfamilyband who actually has Sjorgens. They said:

 Blood work and other tests CANNOT rule Sjogren’s OUT. This makes it very difficult to diagnose 

30% of Sjogren’s patients will have negative blood work.Other tests may also not be sufficient, depending on where you are in your disease progress

Doctors are often undereducated about Sjogren’s and don’t see it as as serious as it is

Many patients will have neuro symptoms as well as other significant symptoms like fatigue before their lip biopsy focal score is 1 (which is considered “positive” for Sjogren’s).

https://www.sjogrensadvocate.com/ is a great resource for people who think they might have this disease. It also cites research articles you can show your doctor if you need to

They also offered to help out anyone who want to reach out to them if they have questions or need advice about Sjorgens and also, with diagnosis’s.

Keep in touch, let me know how it goes. Don’t be afraid to reach out and dm me.

Love Aston 

[radicalposture]

Hey, so were you diagnosed with autism/adhd as an adult? If you don't mind me asking, was that difficult to achieve? I'm 25, and I've often thought I might have adhd, but I've held off on looking into it because I hear it's extremely difficult and expensive to get it tested and diagnosed as an adult.

yes I only got diagnosed last october, I was 25 then too! it was kind of a weird journey for me, all of my siblings and my dad got diagnosed with autism or adhd one after the other and I was still saying “but I can’t really be autistic/adhd” right up until I actually got diagnosed lol. but since then my whole life suddenly makes sense for the first time and I really think things are gonna be ok! this applies to autism/adhd/other neurodiverse stuff but autism and adhd is what I know, but I hope it applies broadly as well

so unfortunately yes, it can be pretty expensive to get through the whole process. depends on where you live of course, I live in Ireland so even though we do have public healthcare I would probably have been on a waiting list for upwards of two years to see a terrible psychologist who didn’t know anything about adhd/autism so I went to a private psychologist. I already knew her pretty well bc my siblings had been to her and I knew she knew what she was talking about and I felt comfortable with her. seeing her cost me around €900 which is definitely a lot, different psychologists have different rates but the price can go up depending on what tests u get done. the more tests you do the more expensive it will be as a general rule (at the same time I saw a different psychologist who had a lower flat rate so idk what the “rules” are about this tbh) I got a standard assessment as well as autism and adhd tests which is why it was so expensive. it used up pretty much all my savings lmao but after getting a diagnosis I was able to apply for disability allowance (which was a hellish process) and I got rejected and had to appeal the decision but I got it in the end, which is fortunate bc I quit my job lol.

recently I wanted to look into medication so I had to go to a psychiatrist because you can’t get a prescription for stimulant medication from a gp in most countries I think? BUT he’d only see me if I got rediagnosed by his psychologist, so that was another €300 for each of them. I did get prescribed ritalin in the end but I’ll have to get the prescription refilled a few times a year bc it’s a restricted medication, which will mean paying €100 ish for each time I do. fortunately I don’t actually have to pay for the medication itself bc I have a medical card.

so yes, it can be expensive! all told it’s cost me almost €2000 to get it all sorted and will keep costing me maybe €300 a year from now on, so it’s definitely something you have to budget for. especially depending on where you live, I imagine things are v different from country to country. also I’m very fortunate bc I still live with my family so I’m free of some financial pressure and I’d been saving for it for a while but I know how hard it is to countenance paying out that kind of money, and wondering whether it’s worth it.

as to whether it’s difficult to achieve I think you’ve got to break it down because official diagnosis is only part of it. so if you think you do have ADHD I’d look at it from a couple of different angles:

1. self acceptance/understanding is absolutely the most important thing. I know people who’ve never been to a psych who know they’re autistic/adhd and really flourish, I also know people who have official diagnoses but who won’t accept it themselves and reject help/support and they’re making things so hard for themselves. so the most important thing is to educate yourself about what adhd means and, more importantly, what it means for you. everyone’s brain is different and understanding exactly how your brain works and why you think/behave the way you do is the most important thing you can do. there are a lot of resources out there, especially online, - I’ll put a link to a google drive of books and things I have at the bottom - and it can be good to connect with others online as well. having people who Get It and can help you is really paramount, I know often our irl families/friends can sometimes let us down so sometimes the only support you can get is from following ppl on twitter or something. the adhd subreddit is weirdly helpful and supportive, it’s great to be able to throw out a question like “I think like this am I insane y/n” and have other people go “nah ur fine” it’s very validating (also validation/external perspectives is super important for adhd bc we can be extremely bad at self assessment). so yes, the most important thing is firstly to know thyself by 1) educating yourself and 2) listening/connecting with others like u.

2. is it important to have an “official” diagnosis? no and yes. obviously you don’t need a diagnosis from a doctor to know what you are, and 70% of the things needed to help you flourish are going to come from your own research and the support systems you make. and if you cant afford or access a psychologist or psychiatrist it doesn’t make it any less real or bar you from educating yourself/accessing resources etc. HOWEVER. if you can get a good diagnosis then I really would go for it, bc: 1) it opens a LOT of doors to official resources, whether that’s access to welfare, supports and accommodations at school or college, medication, etc etc. a lot of the time the supports we need are behind this diagnostic paywall, which sucks but it is what it is :/ so that’s one consideration. 2) it can be really validating and help set your mind at ease about whether you “really” have adhd or if you’re “faking”. like I said I didn’t believe that I was “allowed” to be autistic before I got diagnosed. I also didn’t consider that I might have adhd, I went in thinking I’d just get the autism diagnosis so it wasn’t something I would have found out on my own probably. so it can be good to get an outside opinion, especially as, like I said, we can be really bad at self assessment. 3) it feels good to know you have a piece of paper to throw at rude family members/teachers/doctors who don’t believe it’s real 4) if you can find a good psychiatrist/psychologist it can be such a good thing to have that support and to get genuinely good advice from a professional you trust. doesn’t always happen but if u can find one it’s a godsend

wow this got long. to summarise, if you think you have adhd or anything else I would

research and educate yourself. for adhd probably the best thing to do is read driven to distraction and delivered from distraction, written by two psychiatrists who are adhd themselves. they’re both in this google drive along with loads of other resources I’ve collected, there’s also books about autism as well. as a disclaimer not everything/everyone here has my 100% endorsement some of it is there for academic/historical interest or only parts are helpful but by and large it’s useful. also watch this video and feel Seen

look for a good psychologist/psychiatrist if you’re going for a diagnosis. see if there’s an adhd organisation in your country/area and if they can recommend anyone. a lot of the time you’re better going to a child/educational psychologist who’ll see adult clients as they tend to Get It more. do look for someone who is clear about having experience in adult adhd bc unfortunately even qualified psychologists get a LOT wrong so make sure you get someone who knows what they’re doing before you give them your money

yes it can be really expensive. but if you’re needing to access things like medication or welfare I think it’s well worth the trouble and the money. my sister got diagnosed in her second year of college and was able to save her degree bc of extensions on projects and things like that (I didn’t get diagnosed until after college and spent four years torturing myself I WISH I had known) and it can be something that’s better done sooner rather than later. So if it’s something you can do without putting yourself in financial danger I think it’s good to bite the bullet and go for it. like I used up basically all my savings BUT I now can access disability payments and medication so it was worth it for me. it’ll be different for everyone so use your judgement obviously

anyway hope this helped! let me know if you need anything else! and good luck on your journey

[hannybstudies]

Hey i hope this doesn't bother you. Because it doesn't have anything to do with studying. But I have aspergers and my school refuses to give me special ed. Because im good at school and they say im not really autistic if im good at school and it just really puts me down because it makes me feel like i cant be good at anything if im autistic and getting special ed would help but they refuse and that makes me feel even more stupid. And i just dont know what to do because i just want to be accepted

hi, honey! I am SO glad you reached out because this is not okay! just because you are “good at school” doesn’t mean that you are doing good in a social or emotional aspect! you deserve services and i’m gonna tell you about your rights:

(I’m about to get real nerdy and bring out some receipts so bare with me…)

IDEA (Individuals with Disabilities Education Act) requires schools to find and evaluate students suspected of having disabilities, at no cost to families. once kids are found to have a qualifying disability, schools MUST provide them with special education and related services (like speech therapy and counseling) to meet their unique needs. IDEA states that ALL children have the right to receive a Free and Appropriate Public Education (FAPE). Here’s what FAPE requires a school to do:

provide special education to meet the student’s needs. this means specially designed instruction.

provide related services to help a student benefit from special education (such as speech therapy, counseling, transportation, etc).

provide services at no charge

teach students in the least restrictive environment (LRE). this means that students should be learning alongside students that do not receive SPED services. placement in a separate class is only allowed if it is necessary to meet the student’s needs

provide accommodations and modifications that help students learn and participate in class. for example, audiobooks, extra time on tests, preferential seating, etc.

create an Individualized Education Program (IEP) for the student. by LAW an IEP must include things like services, progress monitoring, annual goals, etc.

luckily, autism is covered under IDEA! it baffles me that your school refuses your SPED services because they are FEDERALLY MANDATED to offer this to you! here is what I suggest you do:

1) locate the SPED program providers in your school district. (for me this is called Student Support Services but this program may have a different title where you are)

2) if you have an official diagnosis, bring proof of it to student support. if you do not have an official diagnosis, you should request to be evaluated by the schools. in my experience, every student/parent that requests testing gets it! sometimes students can “fall thru the cracks” so stay on top of the school if they forget about you! as they say, the squeaky wheel gets the oil!

3) to qualify for IDEA, a student must have a disability and need special education because of their disability. because of this, some schools (like yours) may still report that your disability is not interfering with your educational progress. if they are still denying you services under IDEA, you can consider a 504 Plan. this is different from IDEA and stems from Section 504 of the Rehabilitation Act. most students who are not eligible for IDEA meet the criteria for a 504 Plan. either way, the school should be working to provide a free and appropriate education for you!!

I hope my droning on actually helped and didn’t bore you! I want you to advocate for yourself and get the services you need. you deserve it!! let me know how it all turns out, love!

[tumblunni]

Oh holy shit that's disturbing! I live in Wales and I get these same benefits and yeah the assessments are still stressful but i've never experienced this level of predjudice in them. I didnt know i was so privilaged for living here! I hope things get better for you, i wish we could get the whole nation unified under equal quality of the nhs for once.

The state of the union.

Westminster are demonising disabled people. This is sickening.

[sweetandsavageautistic]

Who’s ready to lose more braincells thanks to Twitter? (CW: Pedophilia mention)

"I'm Alive Because of YOU!"

The Innocence of an adult with autism and his BFF Lost & Found EMMY ;)

Love You, Love You My Boo Bear  

Mommyand (aka) #SMAARTMom

Meet My son Dustin & My Inspiration for Creating the Autism Welcomed Decal Symbol

Oh, decedents of men she loved/trusted... what a great idea!

To me, there's just something about what the innocence of a child would bring to that kind of a role. Or even a high functioning teen or adult with autism...

#WritingCommunity

Lauren, as a mother of an angel with disabilities, I would like articles about parents and adults with #Autism who share success stories. What makes a positive outcome?

Son went out with his grandad today amazing how are kids adults with #autism behave like angels for there grandparents lol.

As the parent of an adult child with autism I always tell young parents to never underestimate their child Our children CAN They are true angels sent to us by God

I worked as a parapro for three years and have seen people on every part of the spectrum- the way he spoke and carried himself should NOT influence anyone’s decision on their theory of his guilt or innocence. His demeanor is very typical of someone with high-functioning autism.

One thing I know about people with Aspergers is, they dont lie, they are often shy at 1st, but once they know you, they arent the type you ask "does my butt look big in this" coz they'll tell you outright that if does with such innocence & charm.

The innocence of people with autism is truly incomparable, it's their raw emotion that's sets them apart from the rest of the world.

@realDonaldTrump

hope you can meet Ganesh. #helpganeshmeettrump

Brother godbless ur boy.His curiosity is apparent and his calmness is heartwarming to see he realizes this isn’t going to hurt us.Autism holds a special place in my heart for my niece is also Autistic and any child,I see an innocence about them that makes me smile.Good job dad

You’re not alone , we autism moms are in this together and know exactly the heartbreak you are feeling

give it time and a lot of therapy Jenny, things will get better !! Just remember that his innocence is soo pure that he’s an angel here on earth for you

Not just autism but any diagnosis/disability. My saying is "do not look at my child w/ different eyes when u see him do something that's considered out of d norm" & also "don't break away his spirit because he can still see the Innocence in life better than you" -Margarita Rubio

Same here brother. My youngest son is autistic and I cant imagine how anyone..especially a "father" could do something like this My son has random seizures and everyone of them rips my heart out Autistic children have more heart & love than anyone on earth Innocence of autism

The ABC series "Love on the Spectrum" was / is a beautiful uplifting and inspiring work. The wonderful openness, hopefulness and general innocence of the autistic folk is a lesson for everyone. Love for everyone has challenges. I hope people don't use autism to express contempt

I love being around people with Autism. They radiate pure energy and innocence.

My son has autism and he is just beautiful in his innocence, thank you very much!!! He does not have black coal for a heart and not beholden to Satan

When Quamaine helped me with the snow shoveling. He was happy to help. I adore him and his innocence. I hope he knows that. #adultwithautism #autism #adultoconaitismo #autismo #quamaine #autismaunt #snow

Mothers of children with autism know their kids intimately because they cannot leave them with anyone. They protect their kids fiercely, because they are vulnerable due to their innocence

Sarah's effective portrayal of an autistic role clearly depicted the charm, candidness, innocence and frolicsome attitude of people with autism.

Autism. A neurological condition where purity and innocence collide to form an abstract masterpiece.

THE REAL CHAMPIONS IN THIS WORLD ARE CHILDREN LIKE KAYLENE. WITH AUTISM  SPECIAL NEEDS & CHILDREN FIGHTING CANCER SO MUCH MORE LOOK AT HER SMILE SO INNOCENT

The people with autism can understand a lot of things very clearly. Autistic children tend not trust adult humans becoz for them they are constantly in movement which doesn’t allow things to sync with them. BTW they are fantastic human beings with a child like pure heart.

People with autism are the most perfect human beings on the planet to me bc they don’t bother a soul or hurt anybody an is purely innocent 💯‼️❤️

I have a soft spot for people with Autism.  We aren’t worthy of their creativity, intelligence and innocence

I love being around people with Autism. They radiate pure energy and innocence.

Thank you

God bless you too!

I believe people with autism are special gifts and their purity cannt be denied]

I’ve been the happiest in my life being around people with autism. If you don’t have a friend, brother, or neighbor like them you truly haven’t experience the purity in life.

People with down syndrome, autism, etc, arent capable of hate, malice, greed, intolerance, etc. They exhibit all the things that those of us "normal" people try to be but cant. They're not equipped to be evil. They can only show purity.

I dont know, that's my take on it.

By living with people with autism, we are be able to regain the purity

True, but at the same time these aren't necessarily different things: pedophilia, anti-pedophilia & dumb-girl-philia can stem from one & the same mental trait, i.e. the idealization of childlike Innocence; which in turn is arguably a form of autism: other people can't have minds.

#Undateables #TheUndateables I adore this show. The pure honesty love and kindness of these beautiful souls blows me away

. Their innocence and hopeful view of this world is something that could teach many. Appreciate what you have

#autism #specialneeds #learningdisability

Which film? I love the innocence of kids. Every day my kids say it as it is and their attitude keeps me so grounded. We could all learn a lot from autism x

This sickens me 2 the core.Trump started this he is to blame. We are one let us not forget this. We need 2 learn again from our young who see no difference. My son with autism never sees any difference. Such innocence. The world will not change him .He listens to me I accept all

My son who has been diagnosed with #autism loves painting.He is lifting my spirits with his joy 4 his work he has done.Some he started this week & finished. R #Hamilton #Ticat #Football colors. Love the innocence its so grounding 4 me. Blessings 4 all you are doing

Pope john paul the second said children with autism were closer to god than any other. They have a innocence about them.  We should take notice and learn from there how love and live

And now, some tweets from people who think Greta Thunberg is being exploited just because she's so passionate about stopping climate change:

If This Little Girl GRETA really has AUTISM How Terrible Easy For Adults To Manipulat Her IT IS A PARENTS JOB TO PROTECT THE INNOCENCE OF OUR CHILDREN IM SO ASHAMED AND SO SHOULD THE CLIMATE CHANGE COMMUNITY GOD FORGIVE HER PARENTS. THEY KNOW NOT WHAT THE DO

Democrats like John Kerry are using an innocent little girl with autism to feign innocence while the Democrats just voted to spend 738 billion dollars on environmental destruction. How ridiculous.

That's a good argument? Because it's what SHE *wants* to do? She is a child who does not yet fully grasp the perils of public life or climatology. She's also a child diagnosed on the autism spectrum. She deserves privacy and protection of her innocence. It will end poorly.

I've started to suspect she was selected for this job because of her autism. She can play innocence whenever someone publicly calls her out for the childish nonsense that comes out of her.

Greta is a 16-yr-old kid with autism who is being used by her parents & the crazy adults around her as a political pawn. She's not a savior. She's a kid who is having her innocence and anonymity stripped from her by a**holes pushing their stupid climate change crap.

I think she is being used. The fact that she has an Autism Spectrum Condition should be respected. She is very articulate and very focused partly because she is Greta and partly because she is autistic, but she also has the innocence of a teenager and someone with an ASD.

[consultingfujoshi]

adhd anon here 1) your experience with adhd things that are dismissed in women so they go undiagnosed for a long time 2) rejection sensitive dysphoria!!! i just read about it and started to cry 3) what did you think about your mental health before you were diagnosed like what diagnosis you had for yourself unofficially i always had my eyes on anxiety but now i suspect something else i wonder what that is 4) hyper!!!!fixations!!!!! please and thank you

1) from what admittedly little I've read on it, ADHD tends to go undiagnosed in women (counting myself as a woman here because like even tho I'm nb I've been socialised and treated as female my entire life for obvious reasons) because it tends to manifest verbally rather than in physical behaviour. girls with ADHD tend to be excessively talkative which is often overlooked since ADHD is most commonly recognised through hyperactive body language and restlessness. A kid with ADHD manifesting in not being able to sit still is much more likely to get diagnosed than a kid whose ADHD manifests in them talking too much, which was the case with me. I haven't really looked into this side of it too much because my struggles relating to like. It taking so long to get me diagnosed wasn't because of my gender but because of the fact that I was a "gifted" kid. ADHD is seen as an intellectual disorder rather than what it actually is, which is a developmental disorder, so the general opinion is that ADHD = stupid, and someone like me, who is just overall very intelligent and always excelled in school when I was younger, couldn't possibly have ADHD. The fact that I was intelligent allowed me to fly under the radar until around GCSE's (16 years old for those who don't know) because school work didn't require much concentration. But when it got to exams and I actually had to put real effort in and do work past the six allotted hours a day and take the initiative to voluntarily learn and produce work, combined with the fact that I was able to breeze through 12 years of school without having to learn how to revise and study properly, the realisation that there was something wrong hit me hard and fast and I was forced to confront something that I simply hadn't had to think about earlier on. My lack of diagnosis wasn't necessarily caused by the fact that my ADHD manifested early on in my life in a way that was overlooked; it was mostly caused by not having to consider I may have a learning disability until I was expected to take my learning past a point that could be completed and set aside quickly and easily with minimal concentration involved.

2) (I'm gonna talk about the pre-diagnosis before RSD because it kinda feeds into that nicely) I was diagnosed with depression and anxiety when I was 12, and while I definitely think I was suffering from what the professionals call "low mood" at the time that was unaffected by my ADHD, I don't believe that those two things, at least now, exist separately from it. ADHD is often diagnosed as anxiety and/or depression, especially in teenagers and young adults, because the inability to concentrate and commit to anything is attributed to the lethargy and apathy of depression, and the rejection sensitive dysphoria (RSD) is attributed to the paranoia and forced asocial behaviour of anxiety. It's understandable considering the stigma around ADHD being "a child's disorder" that a lot of people with ADHD are labelled with depression and anxiety, but it can be so harmful to those who are misdiagnosed, simply for the reason that anxiety and depression are "temporary" issues. You can get therapy to fix depression and anxiety. You can learn it out of you. It takes time, but it's possible. That's not the case with ADHD. You can't CBT the ADHD away. It's something you're stuck with for life, and mislabelling the symptoms of ADHD as disorders that you can fix gives you false hope that one day, if you try really really hard, all of this will go away and you'll just be "normal" again and everything will click into place. I was failing all of my subjects, but I convinced myself that this inability to work through it was just a barrier I could overcome if I worked at it, because it was caused by depression, so eventually I would feel better and it would go away and I'd be able to magically fix my grades. But ADHD doesn't work like that. You can't prevent it; you can only learn coping mechanisms. The realisation that my inability to perform to the standards expected of me because I could just Not Do What Was Being Asked Of Me, even simple things like a worksheet or a research task, was not something I could just power through, brought about the realisation that the path I'd set out for myself of getting qualifications, going to university, getting a degree, etc. was impossible because the kind of things that were expected of me were things ADHD would not allow me to do, which was and still is crushing, and I've basically been forced to have to rethink. My entire future. And that fucking sucks. And all it comes down to really is that I wish I'd been diagnosed sooner. (I'd like to talk about this more in depth at a later date but this post is already so long so I'm just gonna leave it here. Basically: if you've been diagnosed with depression or anxiety but you suspect you may have ADHD, please assess your symptoms and see which they fit into best. You may have been misdiagnosed. It'll save you a lot of time and stress.)

3) RSD!!!!! IT'S NOT FUN!!!! I don't wanna talk about this too much because it just makes me sad but yeah I had no idea this was a thing until one of my friends with ADHD pointed it out to me and it was like the mist cleared and for the first time I saw clearly what the fuck had been going on with my stupid brain for the last however many years. RSD fucking sucks man. I've lost friends over it. I've missed out on a lot of experiences because of it. If you have been diagnosed with anxiety but you suspect you have ADHD, I am BEGGING you to read up on RSD. It's a very specific type of anxiety exclusive to ADHD and it definitely called me out more than once.

4) (I cant do much more of this because my head is killing me but I'm trying my best ok) hyperfixations!!!!! they rule my life!!!!!! and every single one is bigger than the last!!! every single time I get a new hyperfixation I'm like "I'll never care about anything else as much as I care about this" and then six months later I CARE ABOUT SOMETHING ELSE MORE. IT'S NEVERENDING. ADHD brains are wired to think about one thing All The Fucking Time, so everything makes me think of good omens. just like everything made me think of pacific rim this time last year. everything can be related to the hyperfixation. there are no exceptions. looking back on my childhood I definitely had a lot of hyperfixations that went unchecked, like the one with the hunger games when I was 11 where I would force my friends to play pretend games where we murdered each other in the fields behind our houses.....that and like. dinosaurs. basically every year or so I reshape my entire personality around a new obsession. I cannot just Enjoy things. I must Become them. and no one else gets it!!! NO ONE ELSE GETS IT. I get made fun of a lot by people around me for getting so excited and emotional all the time over seemingly tiny little things, which in turn plays into the RSD (ADHD is its own worst enemy for fucking real), which is why I enjoy being here so much. because like....everyone else is exactly the same. and I'm really thankful to have found people who feel things as strongly and care as much as I do. so....thanks for that everyone

if you want me to talk about anything else or go into more detail I would be very happy to but unfortunately it is 2am and I have a splitting headache and also I've typed nonstop for about an hour now and that's more than the stupid hyper dumbass idiot brain usually allows and now I'm exhausted lmao....but thank you for taking interest in this and I hope this. idk. helps in some way??? gn