#mediumsupportneeds

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.

People say to disableds you are more than your disability and yes, it's somehow right. People shouldn't reduce disableds on their disability

But

There are disabilities which causes restricted thinking which bassically can cause that a person feels like their identity consists only of their disability or mostly consists of their disability and that's okay and in general it's okay when a disabled person sees their disability as a big part of their identity or as their whole identity.

For example, I'm MSN autistic. According to my official care needs categorization, I need around 3 hours of care a day. That is a lot of stuff like making my breakfast/dinner , cleaning my room , doing my laundry , making appointments for me or helping me with showering, tooth brushing, tidying my room, dressing and so much more. I live in a carehome because of my care needs because my mom couldn't deal anymore with my challenging behavior. So, my disability has a really big impact on my daily life. The topic disability is also my special interest, so my thoughts are very often about the topic disability. I see my disability as a very big part of my identity. I think 80-90% of my identity is my disability and that isn't bad for me. I like to write texts about my disability. I like to make posts about my disability. I like to chat with other disableds, especially other higher support needs autistics. I often have disabled joy . (My definition of disabled joy is joy due to my disability for example, when I'm happy because my posts got liked. My definition differs from the definition of most people.).

So please

I was in my room and lied on the floor because of executive dysfunction, but I wanted to put a few things on the places where they should be. I was able to force me to stand up and go down. So I did it. When I was in the caretakers office, no one was there, so I sat down on the floor to wait. At first, I leaned on a cupboard behind me to stabilize me because I often can't hold my seating position in such situations. When it didn't work anymore, I leaned. I'm a corner of 2 cupboards I I leaned on to sides. I bit later that also don’t worked anymore so I lied on the floor of the caretakers office. I called the name of the caretaker by mouth. Another disabled person said he's outside. I have to wait. I tried to call the other group of the care home to get help from their caretaker, but I ended the call because the caretaker came in. I called his name by mouth and he came to me. I told him what happened. At this moment, the other group called my phone. I accepted the call and said "Yes I called, but the caretaker is already with me," and then I ended the call. The caretakers helped me to go upstairs and was with me while I put the things on their places. Now I'm lying in my bed and write this post. I still have some muscle cramps.

In the last 2 weeks, I only had 2 Meltdowns. It's probably because of the new antidepressants. I already took that medication from 12 to 16 there it hadn't that effect but at that time I wasn't in a "world" specialized for disableds like I'm now. Now I have less stress in general.

Many people would say that's good. I personally have issues with it. The reason is that it causes self invalidating thoughts. It feels like I wouldn't be a valid MSN autistic anymore, although my support needs haven't changed. I'm also scared of losing my identity due to improving symptoms.

Meltdowns are valid suffering but suffering from self invalidating thoughts because Meltdown frequency has reduced is valid suffering too.

Even in the autism community, some people are mad at people because they aren't happy about that their symptoms improved but their are reasons why improved symptoms also can cause suffering in autistics

- self invalidation (many autistics have self invalidating thoughts if one of their symptoms gets better even if it's only short term)

- restricted thinking (Restricted thinking can cause people to be scared of losing their identity due to improving symptoms)

I saw this post in an autism Tumblr community. I wanted to answer in a post because it's better for me than in a comment. I asked the person if I'm allowed to do it. The person allowed it, but I should censor the name and the pfp. So, now I make this post.

I'm a 17 years old boy with MSN (moderatesupportneeds) autism. I will turn 18 on April the 5th.

I was also scared of becoming an adult. It started when I was 11-12 years old. I didn't felt like other tweens, and I was scared that people would be more judging about that I like to play with toys when I'm an adult. That feeling became more and more until 15 - 16.

I'm officially severely disabled and in need of care since I'm 9 years old which was shortly after my autism diagnosis. My care needs were and also are significantly more than it would be normal for my age. I also have a lot of challenging behavior which also makes my official care needs categorization higher. Until 12 I absolutely don't realized how severely disabled I was. With 12 I realized it a little bit. With 15 I realized it fully but I tried to forget it in many phases because it was hard to accept that I never will be able to life on my own or work a job. Having issues to accept my disability also was a reason why I was scared to become an adult. I was an age dreamer at that time. It was helpful to imagine I would be 5 years old because my care needs would be normal for that age.

With nearly 17 and 17, I learned to accept my severe disability. Being an adult also became just a number (the number 18) for me and not a behavior or something similar.

Now I'm not scared of becoming and adult anymore. I life in a care home for disabled adults (and 16-17 year olds) since April 25th, 2024. My mom visits me often. Every few weeks, she goes to a toy store with me. I buy fidgettoys and also other toys. I don't really think much about what others in the toy store think about me. My mom also told me around 1 year ago that most people who see me in stores can see that I have a developmental disability. I know that not many things will change when I turn 18. I will need a legal guardian in some areas (in the Austrian system of legal guardianship people don't have a legion guardian in all areas when they only need one in some areas unless they say they want it in all areas). I'm even happy to become an adult because when I'm 18 and have an extreme meltdown and need to get brought the the psychward by the police it won't be the paediatric psychward anymore and in adult psychwards you are allowed to keep your phone. Many people who were in paediatric and adult psychwards also say their experience in adult psychwards was mostly better. So now 18 is just a number for me without much change.

I'm not really an age dreamer anymore I play with toys when I like to but I don't age dream anymore or really really seldom but I definitely think people should age dream / age regress if it's helpful for them.

The care home I should move in in autumn noticed that they aren't good for my needs.

The other one has a place free much sooner and is better for my needs.

I'm happy and scared at once.