#highersupportneedsautism

[antonsautismlife]

It's okay if you aren't more than your disability

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

Don't reduce disabled people on their disability but accept it if a disableds person sees it that way that their identity only or mostly consists of their disability. That the disability of a person is (nearly) their whole identity isn't automatically a bad thing.

[antonsautismlife]

Hi, I'm Anton. I'm 17 years old and want to start a blog about my life with a disability because I have heard that more higher support needs autistics are on Tumblr than on other platforms.

My conditions and official stuff:

I have the following conditions♿️:

- autism (moderatesupportneeds)🧩

- adhd

- ocd

- anxiety disorder😱

- ptsd

- infantile eye nystagmus 👁(A condition which causes my eyes to wiggle 24/7 automatically. I'm 1% over the border to the visual impairment in my country because of it. I have 30% of normal vision.)

I'm officially severely disabled, in need of care, and incapable of work.

My life situation:

I live at a residential care home.🏠 Under the week while day, I'm at a special workplace ⚒️for disableds, but I don't do the work the others do. I'm mostly in my safe haven and doing things on my phone📱. My safe haven is a bed with a roof which my caretaker has built because the special workplace is a woodwork. When I started at the special workplace I did the normal work, but it led to Meltdowns nearly every day. Which would be a bigger problem now where I love at the residential care home because my mom had more time to calm me than the caretakers at the residential care home have.

In autumn 2025, I will move into another residential care home because my federal state wants it. Now I live at a residential care home for adults (and 16-17 year olds) with intellectual disabilities but I have a normal IQ 🧠 so my federal state wants me to move into a residential care home for psychiatric disabilities which autism is according to the Austrian system of disability categorization.

My disability aids:

I wear my eardefenders 🎧 nearly the whole day. They have built in Bluetooth. When I talk with others, I wear them only on one ear. I often have fidgettoys with me and I nearly ever have my comfort item with me. My comfortitem is a plushie pig 🐷 called Nilschwein. He is called that way because he is a pig but looks a bit like a hippo. The German word for pig is Schwein and the German word for hippo is Nilpferd. I wore glasses when I was younger but now I don't wear them. The reason is that they hurt under my eardefenders. My eye doctor said that not wearing glasses can't make the vision of people with eye nystagmus worse if they are older than 8 years. Additionally, my glasses don't really help me. The reason is that eye nystagmus can not really be corrected by glasses. I see much better without my glasses than the average person with astigmatism without their glasses, but I see much worse with my glasses than the average person with astigmatism with their glasses.

Queer stuff:

I'm a transboy 🏳️‍⚧️♂️ and aroace🏳️‍🌈. (Aroace = asexual + aromantic). I had my coming out when I was 11 years old. My whole environment calls me Anton. I will change my name and gender legally soon.

Other information:

I live in Austria. 🇦🇹

The area where I need the most support is the area of life skills to due issues with executive dysfunction. There I'm definitely MSN. The area where I need the least support is the area of language. I'm fully verbal, and only sometimes I have issues to speak.

[antonsautismlife]

An example of my muscle cramps and motor skills that are psychosomatic / caused by executive dysfunction which just happened.

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.

These cramps aren't as severe that they would be painful, but they are as severe that they impact my ability to move properly and to hold my seating position.

[antonsautismlife]

Improved symptoms aren't always good for everyone

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)

It's okay that people are a bit jealous at people whose symptoms improved but it also should be understood that improved symptoms aren't only good for every one.

[antonsautismlife]

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.

I don't know the support needs of the person who wrote this text, but because the community isn't especially for higher support needs autistics, the person probably has low support needs compared to other autistics. (Sorry if it's wrong) I know that many autistics feel the way described the text, but I luckily don't feel this way anymore. I told my story in that post, but I know the experience of becoming an adult of lower support needs autistics is different.

[antonsautismlife]

My mom just told me that I will move into another care home on April 4th.

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.

According to things they told me, it seems to be better than the one which was planned for me.

[antonsautismlife]

Today I will go shopping with my mom and buy decoration for my 18th birthday.

It's still a bit time until my birthday (It's on 5th April 2025), but yesterday I told my mom I probably want a pinata for it and she asked of I want to go shopping with her tomorrow to buy it and buy other decoration for my birthday

[antonsautismlife]

I'm so stressed after showering. The caretaker who helped me is a cis men. Normally, I don't have issues with him, and he helped me already a few times with showering, and it wasn't an issue. But today, I had intrusive thoughts that I should ask him sexual things it is really really stressful to have these thoughts in such situations.