#mediumsupportneedsautism

I’m always being dependent on people who help me. I can’t always do what I want. i have a free will, my own ideas, my own desires and my own concerns, but i am not able to implement them alone.

even with inclusion, with care, with help adapted to my needs, i will never be able to live as self-determined as non-disabled people.

If I need to take a phone call, i need help. I can’t do it on my own. Most of the time others must take phone calls for me. If no other person is with me, I must wait. I only can do phone calls with my wife, my other care taker and can reply calls from my mom. I often can’t even call my mother. I write her that she must call me.

If I need to go to an appointment, I can’t go alone. The only appointments i can do on my own are appointments in known environment, where i was before with a carer, where I know the people and where I know what’s happen. For example ergotherapy or therapy and some appointments in psychiatric ambulance. On every other appointment i need someone of my carer come with me. So most appointments have to be arranged that the care person has time to accompany me.

If I’m hungry and I’m alone I’m most of the time only able to eat unhealthy snacks or a dry bread bun I eat every day for breakfast. Only make myself cereals are to many steps. My wife must be by my side when I want to make myself a bread with topping. Sometimes I am able to warm up some food for me and my family. And when my wife helps me, I can cook an easy meal with her. But alone I’m not able to do stuff like that. So if I want to eat a full meal with good nutrients I’m always dependent on others.

If I need to shower, I must wait if my wife is home. She must be by my side while i’m in the shower, because shower is so overwhelming that I could get a meltdown or a shutdown and than i can’t shower by myself or use a towel to get dry. I also forget some steps until I shower and it is easier for me to do all steps when my wife is by my side. So i’m not able to decide when I want to go to shower. Same thing with brushing teeth btw.

If I need to do laundry, cleaning the kitchen, the bath, my own room… I need help. Some parts I can do, like vacuum cleaning. But never all steps. So if i want fresh clothes, a clean kitchen or bath where I don’t get sick or sink in my own mess I’m always being dependent on others.

If I need to arrange my medication for the week, i need help. I’m not able to arrange it on my own. If I don’t get help I have no on demand medication and my other medication I would forget completely. Also when I get help with arranging my medication, I need help with taking them most of the time too.

I could write down so much more….

Open Post, manage bank account and money, paying bills, taking decisions, sometimes even to order my thoughts… It’s like staying alive is always dependent on others.

But I don’t just dependent on others for things i must do, also for things I want to do.

Going to swim, going to bushcraft, going to a concert, going to a meeting at fishing club, going fishing when strangers are also fishing. Can’t do alone.

For many disabled persons it’s difficult to go to the barber shop to get a hair cut.

Today I go to my brother-in-law with my wife and her parents to get my hair cut.

Today day-center is really hard. The other people here are very loud and they discuss about lunch like every day. Every day the same struggle. They talk and talk and talk. I have nothing to say. Sitting and try to keep calm, because their discussions are so exhausting. But I can’t move or go away because I don’t now how to behave. If others go away in those situations, they called to came back or get trouble because of bad behavior. So I don’t know if I am allowed to leave. But I can’t handle such situations and get psychological pain. I wasn’t able to speak. Don’t now how to ask. Don’t now the right moment to speak. So I’m not talk about my needs and be quiet, start to mask.

Today I had work therapy, but I don’t need to join, because I had to fill out a self-assessment. It was really exhausting for me. A employee from the day-center must be by my side, while I fill out the assessment, because I had problems with understanding the questions and the risk that I get overwhelmed and get a meltdown is very high. At several points I needed help. I got very stressed because I’m not good in self-assessments. After the assessment I needed a break and I was able to communicate it, and don’t mask my need away. That was good, and I was a little bit proud of myself.

Than it was lunch time. One rule in day-Center is that we eat lunch together. But most days I can’t eat here. I am very limited in eating things others like. My options of dishes have a small range. And in day-center Is almost never anything I can eat. And because I am not able to speak about it, not able to speak for myself and about my needs and wishes, there are always only dishes here that the others want to eat. I’m now half a year here in day-center and I only could eat lunch here on two days. So at lunch time I stay silent and hungry. Really hungry. And overwhelmed. Because the smell of the food, the eating sounds, scratching sounds from fork and knive on plate and talking sounds from the others freaks me out. I hate it. Every day the same struggle with the lunch time. Normally I try to mask my ass off while lunch in day center, but today I wasn’t able to mask and I generally want to mask less in day-center. So I was sitting on my chair, overwhelmed and overstimulated, only could think about that I need to leave this situation and how I could communicate it. Luckily one employee sits next to me. So after about 15 minutes of struggling and planning the next steps and how I could communicate I was able to whisper to the employee my prepared question. „can I go out“ - I whisper, to get as little attention from the others as possible. And she said „yes, you can go out“. So I was able to move because I was allowed to. I left the room directly. I went to one of the other rooms, and lay down on the couch.

Now I’m still here. Don‘t want to go back to the others. I’m not feeling good. Tired, exhausted, overwhelmed and hungry. I’m only able to lay here and wait to day-center end for today. Luckily I must go earlier today, because I had an appointment with my therapist.

(in this case changes of ingredients and packaging of safe foods)

Yesterday we went to grocery store to get the juice which I was able to drink the last months. i need this juice to drink anything at all. drinking water is hard for me and I have big issues to stay hydrated.

I was glad to have that juice because it was perfect. It was cheap (that’s important because I need much juice per week and we can not effort other juice), it has a low caloric ratio, it was easy to get in every city in my country so I don’t have trouble to carry many packs with me when I travel or have appointments in other citys, the taste was perfect to me, the consistency was perfect (not to watery, not to juicy), the packaging, the size of the opening for drinking.

In short this juice is a important piece of my daily life and a routine.

So yesterday I went to the drink section in grocery store and go to the place where the juice stands normally. But it wasn’t there. I directly became frustrated, because I need to buy this juice to be able to drink something the next three days.

I panicked a little bit and looked at other possible places where the juice could be.

Than I saw the bottle from the picture.

In the first moment I was glad because I thought this is a good alternative. But no no. I got it. They changed the package from my juice to this bottle. Same picture as on my juice, same name, everything the same except the packaging. That’s what I thought in that moment. But the change of the packaging stressed me out directly. Because I don’t understand the change. But I was able to calm me down a little bit because I could tell my brain that my juice in a new packaging is better than no juice.

With these mixture of happiness to can drink at all, and frustration and stress because of changes we went home.

At home I try the juice directly because I was very thirsty. Haven’t had drink the whole day.

I got more frustrated, the feeling of the bottle is a other feeling than the Pack before. It’s cold and slippy, the stability is bad - so wobbly. The feeling of the opening on my lips is different. The opening is much wider than from the pack. I even got more and more frustrated because I realized that this bottle was now a daily struggle to me.

I was in massive overload. But I needed to drink, I was so thirsty.

I took a sip… an hell no. The taste is so different. I got a meltdown because I couldn’t handle the changes.

After a time I could think straight again and tried to tell myself that it is only the bottle. That it’s only the bottle that causes the different taste. And that I should got over it and don’t act like a little child.

But no no. It’s not just the bottle that changes the taste for my brain.

They also changed the ingredients composition of the juice. The proportion of the ingredients are different. They changed the proportion of carrot juice down from 8% to 5%. I don’t imagining that the taste is different. The taste IS different.

But it’s pain and suffering.

Now I have a problem. What should I drink? What if I’m not able to get used to the changes? I need to drink. I normally drink not enough. And now I have even bigger issues to drink enough.

Why did they change it. I can’t understand.

I try to think rationally. But my brain steps back to frustration and stress only if I see the bottle.

Changes of safe things like food, drinks or items are enormous stress for autistic people.

Changes are so much. Changes are too much!

Over 12 hours of work destroyed in seconds because I can’t control myself while a meltdown.