u/RainetheTundraDragon

Mad frustrated confused

Scared to meltdown at home because everything gets taken away until I'm "better" so can't feel no no no because feeling means lose anything to care about. Stuck at home no working no friends have lost technology. Can't go to friend's wedding for just one day free.

But on other side have worked places where is "meltdowns are just how you feel things" reduce shame make it safe. Not safe don't leave me to meltdown day and day and day slam head into walls bite scream not SAFE.

Why is there no middle? Help to keep me safe WHEN I feel? Can't all be prevented tired tired tired keep myself zoned out read read read scared to fall apart. Too much always. 

Tired tired tired everything everything everything scared 

Can't do anything til better

What is better even

Not improving just HIDING scared not existing in brain so can be free but why why why if freed then won't be able to handle not actually better

Not okay 

I am supposed to want to be independent and want to be helped and want to be better and I don't know what it means. 

4 years ago I started existing in my mind thinking but also same time was adulthood and also suddenly having to be social. Most people learn sense of self inside slowly.

It was all at once for me now I am in constant confusion tangles always. I have collected information and advice but all is useless because so much of it I am always overloaded. 

Around me people were becoming independent starting relationships finding career paths for me I just fell apart. 

I learned tasks slowly but by middle or high school I think I stopped learning. I did not regress I did not burn out. I just got stuck independent task wise. My parents were bridging the gap so it was fine. Then college on my own demand increased my capacity did not I still couldn't handle the same tasks alone my meltdowns became violent daily uncontrollable confusion and spirals more and more words fading motive to try gone because no one told me how I can never even tell if I am trying 

Everyone has treated it as if it's emotional I need self confidence or to finally know I am autistic or I need medication or therapy that I am lacking desire I am wanting wrong or not enough 

I don't know I don't know I don't know. How does that fix it? Emotions need help now because years of struggle confusion too much information and I don't know how to read them they are so much bigger than when I was little and not inside my mind 

But how does it fix that I don't remember deodorant after lists and reminders and prompting for years and years I can't follow my lists I don't remember to pee I can't make my own food consistently or plan meals or clean without direction or notice when things need to be fixed or replaced or understand finances no matter how many times explained or modeled or buy things or choose to go anywhere or form opinions choose much of anything not understanding picking out clothes or what temperature means or organizing or asking for help or anything or socializing or handling casual interaction or speaking to new people or choosing words or knowing what I mean or personal hygiene or dealing with doctors or phone calls or that I can't drive or prioritize tasks or handle all the information coming in always all the time sounds words emotions visuals smells memories signals. 

Do I just not want to focus enough?

I can't hold it all it slips away I am watching the world through a glass bubble I can see through but can't control I am a ghost trapped experiencing while everything happens around me no control just feeling seeing hearing all. I can't think enough can't keep up. 

How do I know what to focus on and what to work on and how. I tried tried tried to figure it out all I did was get more confused lost overwhelmed no way out why am I expected to? Always I am needing to know what I need feel want. I can't I don't know how so tired tired tired

It feels like help is too late or wrong. What am I supposed to be capable of I don't know I don't know I don't know? How do I figure that out? Maybe is all just lazy and detached and distracted and not wanting enough but how to know?

Sorry sorry sorry for very long. I do not know how to condense or what I mean.

Last week I moved in with my aunt and uncle because my job ended and everyone thought home would be emotionally abusive.

Scared and upset and confused and lost purpose and routine. But aunt and uncle tried hard to help and they did lots of calls but therapists were long wait or needed primary care doctor first and I haven't been to the doctor but most said my case is too complex because verbal struggles and late diagnosis but not clear what else is going on because never been evaluated or in the system. 

I have been suppressing so hard at their house. Two years I have had daily meltdowns bad. Scared of meltdowns in front of my aunt and uncle so bad. I did lots of going into the woods to meltdown alone and lots of curled up biting myself so wouldn't be heard. 

Had accidents and lost speaking a lot couldn't make all the choices I needed to couldn't remember water or food.

And yesterday melted down because uncle and aunt are also moving and visited my grandma to look at apartments and long in car and their bird is noisy and unexpected trip and so much and then aunt tried to get me to drink something and gave too many choices and melted down.

I scared my aunt she didn't know what to do I hit my head a lot and couldn't communicate and tensing biting rocking flapping everything-- is very normal for my meltdowns I have had every day-- but is not normal for anyone to see. 

Now today my aunt said we should call and get me into inpatient near my home so can finally get help.

Scared because here is near my jobs where they were going to let me volunteer and help with animals and all of my friends and people who have been helping me and woods and animals I like and now being sent near home. 

I don't know what inpatient is like or how it will help or if people will understand or what will happen and I am scared and confused. And scared my family will be taking over again then and have to go home and confused.

And tired tired tired. 

I am not sure though my aunt is describing my verbal ability accurately and I think it is being misunderstood so is making it harder to find help for me but I don't know how to describe it.

I can speak full sentences. I don't have issue pronouncing things. 

I struggle to be loud enough and to enunciate and make no eye contact. 

I can't initiate interactions. I can't communicate what I need or want (usually can't even recognize). I can't bring things up unless I'm prompted. I can answer direct questions with yes, no, and I don't know, though it is not always accurate.

If it is an area of interest or a topic I have written about, I can talk a lot.

If it is a new topic, I can't say anything.

I can barely say a word to new people and only open up after a few months of consistent interaction, and then mostly I chatter facts.

I will engage in conversation by saying a fact based on one word in a conversation. 

I also have many times where it is hard for me to think and form words at all--new situations, when I am stressed or upset, when it is loud, when there are more than two people, and then randomly certain days I just have no words. Sometimes I have words in my head but can't say them. 

I can communicate well in writing. But also depends on the day.

My aunt has described it as "not effective verbal communication" when trying to find a therapist for me and I am worried that is being misinterpreted as nonverbal. 

Is there a term that could describe my communication better so that I can be matched with correct help?

Edit: Also I use "code phrases" a lot-- I can't express things so it comes out as something else I repeat a lot (I don't know, did you know, I want to go home, what what what, I miss you). Written and spoken. I can't script. 90% of things I intend to say I end up texting instead or never communicate. 

When I do talk it is like I can't control it and it tumbles out fast and no one can say anything back. It is only stories or information not anything meaningful and it makes me feel bad and I didn't want to say it I don't know what I am trying to say. It is usually much simpler words than I can write too. 

I write to communicate any real thought. Writing is how I think. Even then I can't do an actual conversation and I use code phrases and don't understand what I mean or am asking for or am trying to express. It is I describe what I experience hoping someone can translate into what I am needing because I don't know. I get misunderstood constantly because of it.

Things usually happen around me and I feel like I just have to always deal with the consequence because maybe one day it will teach me to actually say what I need to. If I can't figure out how to say yes to a question or ask a question when I need to, then I don't deserve whatever I needed. If i can't even write a question I need to ask then I must not actually need the answer. If I cannot think fast enough and communicate that, then that's on me. 

Everyone in my life thought I needed a break from working and that that's what the problem was so now I am stuck at my uncle and aunt's home with no expectations but do what I want and now nothing has purpose or structure I don't know what to do when or how to know what I need and I'm constantly expected to communicate it and I'm exhausted and scared and there's no next step. 

Everyone is treating therapy as if it will fix everything but counselors scare me I have never been able to communicate and they give advice I can't implement and I'm so stressed and overwhelmed I'm worried it's not going to do much especially because now I'm more stressed out because every moment I have to decide what to do

I don't want to self direct I need structure and routine and it is all gone now I'm scared I'm trying to be brave and strong I'm so tired. 

Please please please what do I do I'm sad I'm sad I'm sad I wasn't doing good enough because I was stressed by too many decisions and responsibilities and open ended things and now the thing I was good at following directions was taken away. 

I don't know what to do with myself I don't want to be alone with my thoughts I'm scared I'm tired confused 

This is torture and no one listened to me when I said it would be now I am trapped in my head and I hate every second of it

Late diagnosed is associated with masking so much but I know for me that is not why-- what are other people's experiences?

It is a number. I can do math and everything but it has no value to me. I can't apply my understanding to reality. 

I don't use money. I don't realize I need things. I will run out and just not realize it. If something is not there, it doesn't exist. 

I have made two independent purchases ever, independently meaning either I ordered it alone without prompting (though I needed to be reassured it was okay) or I asked to go to the store to get it even though I needed someone to guide me through the store.

Other things have been I have been told to make a list for food every few weeks or I have been told I need to get something for school and then taken to the store without me asking. My mom has had to get tissues and toothpaste and vitamins and basically everything for me repeatedly because I don't pay attention to what I need. 

Prices I don't understand. Or working for money? I work because of the structure it gives-- money doesn't motivate me at all. I would do any of my jobs I've had for free because money is not the reward, having direction is. There have been times I have been paid less than others and my family was outraged and I didn't care.

I know I need to pay attention to it and my dad keeps having to reexplain the same steps and I don't understand it. 

I am good at saving money though because it is so abstract to me. 

Does anyone have similar experiences?

I am confused scared tired

My mom told me anxiety would make me institutionalized she said I was sensitive manipulative overreacting wanting to feel special pretending to be disabled ungrateful constantly complaining. 

She said I couldn't trust my mentor because of her age nor myself because of my age. She said mental health help couldn't be trusted.

She said I was too high functioning to need help and I'd be diagnosed autistic if I were tested but that's for quirky people who want a label.

I tried telling her I was struggling she asked for examples I told her I kept forgetting the stove on she told me to just not do that. Tell myself to talk to people. Act like I could communicate. Put myself out there. Try to socialize. Push myself to be a vet.

She told me crying was giving into the devil and not trusting Jesus and that I don't perceive myself right and look how smart and creative I am and how much she supports me and all she's done for me and said I shouldn't struggle. 

She physically forced my eye contact. She forced me to speak and took offense to silence. She responded to my letters with hour long lectures. She mocked my stimming and how I hold my arms and let my siblings chew in my ear when I have bad misophonia. She got mad when I hid in my room and when I would text people about things she'd say. 

My mentor at school said she knew I was autistic in 30 seconds. Most people don't take long.

I didn't notice anything about myself and because of my mom, desperately tried to prove everyone wrong, that I couldn't be autistic because everything was my fault and I could just try harder and fix it. 

My school and work had to deal with severe meltdowns. I couldn't communicate with counseling couldn't apply any advice. 

This spring supervisors talked with my mom about my meltdowns. They did a lot to help me. One of my supervisors is level 1 so she was able to help some. 

My mom was very upset because she didn't know how bad it was. She helped me access assessment so finally I am diagnosed. 

She tried to get me home and manipulated the report to say it says I need to be home. She told me I can't trust the supervisors who tried helping me. She emailed them behind my back to tell them she wanted me home and emailed the counselor she found telling her I'm codependent on my supervisor. 

She explains why she acted the ways she did she tells everyone as if they must hate her she tells me why she restrained me and told me I'd be institutionalized. She tells me she's sorry and how much it keeps her awake and how hard she's trying and hasn't she done so much for me.

She pulled me out of my nana's funeral because she thought I was getting too upset and that stresses me out. She constantly asked questions she cried when I melted down and fluttered over me and it felt awful. She told my autistic cousin to respond to my texts or she has his number and take care of himself because she hadn't taken care of me.

She loves me but is she helping me?

I'm so confused. 

She's anxious, hyper reactive, self critical, cynical. She talks to no one about her life and is a stay at home mom despite her youngest being in high school. She gets only 2-4 hours of sleep at night from ruminating and worrying. She cries when she's opposed, she's mad when someone disagrees. She says my dad micromanages her and explains herself to us and won't consider that my dad could be autistic and that's the source of his rigidity and need to control specific things. 

When my brother played video games in secret, she cried all the time over it and told the rest of us to never be like him and told him she didn't know what to say when his teachers told her how amazing he was because if they knew the truth. She compared us to her friends kids and held us to our childhood dreams.

She's trying to help in the way she knows how but is this normal?

Tired confused scared she'll never stop til I'm home. 

I'm going to go stay with my aunt and uncle but she desperately wants me home. It feels like I am hurting her by staying away. I want her to be okay. 

I'm tired tired tired. 

She loves me so very much and works very hard. How do I know when to trust her and listen to her and when she will be able to help?

I get very overwhelmed by my awareness. I am overwhelmed most of the day but then alone suddenly I can think kind of and everything is too much and memories are piling up everywhere. 

And I have an urge to wander. 

Usually either I am able to keep myself inside or I wander in the day and find very interesting things in the woods and end up being able to go back. 

But yesterday I wandered after dark. I didn't know where I was going or what I was needing but I couldn't get myself go to any building. It was all empty and scary and I don't know why. So I got stuck outside. 

The stars felt like they were pining me it was dizzying and my eyes couldn't focus. I ended up just stuck staring at the sky for a long time.

And then couldn't get myself back so I wandered and never thought to use a flashlight. I couldn't ask for help because I don't know the point where it's okay to ask for help and I didn't want to bother anyone. There were rustles in the woods and coyotes howling and owls and I was not scared at all. I walked down roads in the dark but only ones I knew so that is good? 

And then I got startled by a deer and felt actually scared and bolted to the nearest light. Which was also some place I knew.

It was confusing and hard to think and I don't know what was wrong.

I realized I needed to ask for help before anyone who could help was asleep. Coworkers were able to come get me so it is okay now.

I'm scared it will happen again but I don't understand what happened.

Has anyone experienced this and what is it?

Thank you.

I'm scared I don't know what I need everyone gives so much advice I am confused tired tired tired tired tired can't communicate what I need to people because I don't know

Everything is overwhelming and I am scared 

I can't escape

I need help I need help I need help but does that even mean anything if I have no understanding of what will help and no strength to meet anyone where they're reaching? 

So very stressed and it never turns off. I don't know I don't know I don't know. 

I don't know 

I'm confused I'm tired I'm scared

So much too much everything 

I don't want attention. I don't want to be a burden. I don't want to be something other people have to figure out I don't want to need help. 

I want to be able to feel without being scared I'll end up hurting myself I want to feel without hurting anyone 

I wish my mom knew nothing. I wish there were nothing to know. I wish I could figure things out. Or figure out how to explain what's wrong or where I'm stuck or what I need

I'm tired of existing

I'm tired of change 

I'm tired of hoping

I'm tired of being confused 

I don't know how to explain where I'm stuck or what I'm confused by or how anyone can help just no one is really helping and it's all adding to the storm.

I don't know how to figure out a decision when I need to be preparing myself for change because I am about to go through a big transition but also I have to choose what is next somehow. 

I hope I go numb I hope I don't care I don't know how I have any strength to care. 

Can it all just stop. 

I don't know how to be helped. 

I am so confused 

I was diagnosed level 2 social communication level 3 RRBs. 

I work full time. I need to. It is the structure that holds me together.

My job is very much based on my interests. I take care of animals and can do whatever sort of nature projects I want to. I am doing bone taxidermy now. Or trying to. I get to tell people about animals. 

And I do lots of dishes and cleaning. It's the same every day, same routine. 

But most level 2/3 can't work. 

So I am confused.

and I can't ask my evaluator it was just evaluation and then never see them again and so that is confusing and not helpful.

I can't mask. At my job I'm spinning and beeping and whistling and flapping and rocking and humming and flicking my fingers and fidgeting all the time. I tell the few people I can talk to random animal facts. I don't initiate conversations. I don't engage in group conversations. Words just wash around me and I'm not there. I write to communicate to my supervisor who is level 1 autistic. She has helped me a lot. 

I need my ear defenders most of the day. I don't have to feed myself-- my job does that and I don't have to go anywhere-- I live at my job. I struggle to eat because it is often too loud or the wrong temperature or there are foods I don't like or I just can't. I don't have to figure out when or what to eat it is done for me. I have to get myself ready in the morning and miss so many steps I struggle to shower and get through the steps of everything no matter how early I get up. 

I don't make decisions or self direct or hold opinions or generate direction or form relationships alone. I can't handle stores I don't go anywhere I don't do anything after work except curl up in a ball. 

I don't remember to drink water even with reminders and I will go 15 hours easily without peeing and I have accidents. I go mute for hours. Sometimes I freeze up. 

I meltdown nearly every single night usually over 20 minutes. Sometimes more than once. I can't tolerate existing in my mind it all just implodes til I'm exhausted. I whimper and cry and bite myself and pull my hair and flap and pace and rock and scream and slam my arms together and hit my head and slam it into the walls and floor. Nothing I have tried prevents it or calms it the only thing that helps is if someone is there and they block me from hitting myself and hug me so tight I can't move. But no one is there mostly. So it is until too exhausted to move.

But I haven't severely hurt myself even though it's been daily for years. I'm still able to do what I'm told I'm still doing my job. And the only support I have is what my job does. I need that structure. I'm extremely overwhelmed all the time and not able to access support on my own or try new things without falling apart but I'm alive and I still do what I'm supposed to so is it really that bad. 

My job does a lot to help me. They warn me of changes and give me directions instead of choices and recognize when I am stimming lots and overwhelmed and tell me to go to a quiet place and give me break time to nap and let me explore my interests and go to the store for me and gave me my own room away from everyone and assigned me a spot to sit at meals and let me wear headphones and stim and info dump and write when I can't speak or use communication cards and remove me from the situation when I meltdown.  My work environment is a very rare situation and it is almost over it is only seasonal and I am probably not going to be able to find something with enough support to replace it. Especially because I have never independently found a job and my mom says I need to not work so I can be fixed. I'm so completely exhausted because the support I do have isn't enough and it's not getting better.

...but I can work. Working is the only time I'm doing well. 

When I am not working when I do not have a task is when I can no longer function. Suddenly it goes from one focus to a billion things and I don't know how to tune it out. 

I don't understand my levels. 

It does not seem like my experience is a common one. 

Please is there anyone who can help me understand? Is my level assignment wrong? Does anyone have a similar experience?

I am sorry I write a LOT and all over the place. I tried to be concise I don't know how to say it in less words.

Thank you

I don't know how to handle it when I think. 

No more tasks for the day just stuck in my mind

Words and memory and everything everything everything seeing hearing feeling 

It's so LOUD

I can't escape my own mind

I'm sad scared I feel insane that just being alone with my thoughts and trying so hard to keep distracted and still end up running into the woods and hitting my head on trees and even when I manage to get myself back to a building then I'm screaming and flailing and slamming my arms together and hitting my head on the walls and floor because my thoughts hurt and I can't escape.

Is not the content of thoughts that hurt. It's just that I have thoughts.

And then by the time I can text someone to beg for help... I'm already near exhaustion and then I've bothered someone else for no point. 

It's loud it's loud it's all so loud.

Scared.

A week ago I was diagnosed level 2/3

I don't know what to do now.

My report had some recommendations but didn't seem helpful overall. 

Like it suggested using ice cubes and rubber bands for my meltdowns. When I have already tried and have been unable to independently implement things, and have tried many other calming techniques.

And it recommended that employers allow me to write to communicate and offer sensory breaks and warn me of changes. Which already happens.

And that I should go to the doctor for my headaches and other things when that was already the plan.

The only new recommendation was CBT for helping to recognize emotions and internal things. Which also does that help?

I can't on my own schedule or go to appointments so my mom is helping trying to figure that out... but it will take a while.

I am frustrated because I wanted to be assessed because I have tried and tried and tried to meet my own needs myself and I haven't been able to, and all the suggestions I've found researching don't help or I don't know how to implement and everything just keeps getting harder. 

I don't know what would help me and I thought being evaluated was supposed to give some direction.

So... what now? 

I'm so tired tired tired. 

Helllooo! I have finally been diagnosed! I am level 2 social communication and level 3 restricted repetitive behaviors. My evaluation was online and that was weird. I have been reading a lot of posts on here for a long time but now I am actually diagnosed hooray!

I am surprised by level 3 for restrictive repetitive behaviors but I am not surprised by level 2 for social communication. I guess it is because of my meltdowns? But I don't really understand it very well. I feel like I messed something up and the level 3 part is wrong. My mom was assuming I would be level 1.

My special interest is weird animals and I will gladly dump facts! Please if anyone has good facts I would love to hear them. I also like weird historical events and color mutations and ciphers.

Also I like to write and draw and I have been working on a story with autistic characters and they are foxes!

I am now very lost feeling because I don't know what is next or what it means now. I have been fighting so long to get to the point where I can be diagnosed and now I am so so disoriented I don't know what I am doing now.

It is good though to finally have an answer-- it was very hard for me because I was questioning if I was autistic but everyone around me just assumed it. I didn't want to claim something that was not true.

And hopefully now I will be able to access support... though I don't know what that looks like or what would even help.

Anyways I just wanted to say hello and thank you to this community for being so helpful and lovely. And also can someone please explain levels to me because I don't understand it...

I hope everyone has a wonderful day!