Beauty in my autistic world

We know there can be so many problems with having autism and trying to fit in to the neurotypical world. But there is such beauty in mine world to. The way me understand things and process things is unique and can be lovely. Mine sensory processing differences can be artistic. Yes sometimes me gets overwhelmed but other times if me can avoid chaos it’s beautiful. When me can get lost in the color of the sky, very much Pocahontas like Jejeje. Mine deep love of music, me experience it so much powerful. Feeling textures, me has rub a leaf over and over for hour. Sometimes me looks silly enjoying these things but who cares because is a type of joy and love for beautiful nature most people needs. More people needs find little things to make them happy. And more personal needs loves nature so will take care of it. Mine brain may experience all these things different but me not thinks is bad. Do me needs helps to cope and be safe yes but me not wants be ‘cured’ of mine experience and lose this joy. Especially as mine body is giving up more than ever its these little things that help me. Differences can be a good thing and strength to not always a bad thing. With a little help me made a list of some good things that can come from mine differences . . . OCD helps me remember things

PTSD helps keep me safe

SPD let me really enjoy things like music and baths for coping skills 

Autism helps let me be myself 

ID helps me get happy more easy

Cerebral palsy helps me be patient 

Seizures help me be understanding 

Asthma help me learn medicine is important 

GERD can help learn eat more healthy 

Mine body giving up (them thinks ALS) gives me more time to study words and watch tv

Bedsores help me try move/exercise 

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The spectrum of autism spectrum explained 

The best way to understand the spectrum is not just as autism. Some people think is just autism and some people has a lot and some a little. Me not thinks that. There is more than just autism that makes you, you. Your personality and culture and experience to. Me likes the fruit salad model by Donna Williams. It say you has autism but there’s all this other stuff you can has to that make your autism different. Like different sensory processing disorders, dyspraxia, alexithemia, face blindness, and other stuff. There’s also a bunch of comorbids you can has and sometimes people call it all autism like seizures, mild cerebral palsy, mental health things, intellectual difference, sleeping disorders, tummy problems, etc . . . The thing is it’s easy to call it all autism but it’s not. Some things you not can do much about but is good to understand what’s exactly going on so that you can help some things. For example learning that me had seizures was super important. Learning that mine friend son has celiac saved his life and helped his ‘behaviors’. Giving mine cousin meds for his mental health helped him has less behaviors, communication more, and do more good in school. 

Also there’s this thing sometimes people say everyone is a little autistic. Me not thinks everyone is a little bit autistic but let’s think of it like this. If you a great great grandma who was black and everyone else was white you’d not be black but you may have a black trait. If that grandma was autistic instead of black then you may have a autistic trait. I don’t care if you call me autistic or say I have autism, I care that you respect me as a valid person. From what me understand that what people on both sides want. Me says I’m autistic because to me it’s the same as saying I’m Hispanic. Me not has Latino. And also me thinks is like how Deaf people say it, because it means a culture and or community identity. But still it comes to respect. Like the word slow. I know me am slow, my brain takes extra time to process. So if you call me that as a fact or description then it’s ok. But calling me slow to be mean or make me seem less than you is not ok.

Sharing your autistic experience 

So me has see a thing problem with trying to share mine experience. No matter how me do it me am not good enuff. Is always a reason not has to listen to me. If me types my normal with little help from anyone me am to hard to understand or my obvious intellectual and communication problems makes me invalid. But if me gets help me am see as to smart and people think am ‘high functioning’ so can’t possibly be like the other nonverbal kids who still has behaviors. Even tho me am still having behaviors. Besides behaviors is a form of communication and brain body self defense. As me am less can type me am has more behaviors. Not on purpose but is the only way you can see if me has a headache or am overwhelmed or as pain, when mine body can do nothing and me am rag doll you not can know anything of mine feels and thinks. Judging me or anyone is bad especially based on how we type. You don’t know us. You don’t see the hours working on these words. You don’t see the meltdowns me has. And even those who are ‘high functioning’ you don’t see them struggles and shutdowns. Mine friend Grr is called high functioning autism. Him works and talks. But him also stims, has meltdowns, has trouble with things like baths, has sensory problems, and can has times of nonverbal. The thing is how much you can do in 1 way is not how you do in all the ways. Do me need more help than him yes. But that not means him not needs help to. But if all you see is us typing then you not can know what him needs. You not can see his meltdowns by him typing. 

Autism, alexithymia, and depression 

I’m already on here so may as well finally remember to type this. Me has been work on for some time and me thinks is done. Me almost called this depression or politeness? Sometimes people thinks me am depressed. Usually it’s very easy to say no me not and most that knows me super can agree is not. But the last little bit me has to think on it. Is me? It’s not like would know. Alexithymia makes it almost impossible for me to understand mine feelings or even others be it sad or mad or hungry or cold or something else. Now me knows that they say some people on the ASD spectrum shows depression by avoidance more than sadness or other more neurotypical ways. But the thing is even if me can almost agree am avoiding things and people me has other reasons. 1 of them being polite and not wanting to upset people. You know the if you have nothing nice to say then not say nothing. Besides me likes make people smile not make them upset. And me not wanting peoples think is all of me and me not care of them problems to or that me only wants them when needs things and not just to has fun. And also a lot of things is just hard and hurts and not always possible. Even typing can be so hard. Me has always had problems with words/language thanks to nonverbal autism and aphasia, but now it’s even more hard, even using a switch can be hard. And all of it takes time and just is not always worth it unless someone else starts and me not wanting ignore them. And then there’s crying which is something me can blame on ms, me used to never cry but the last few years it slowly became a thing even tho me not usually feel sad. And the thinks on being a burden. The thing is how much can you really call that a silly think just from depression when on fb so many days is stories of people like me being neglected or killed by those supposed to care for them and so many people are just like it’s understandable because all of the stress and put that with my personal past of people hurting me or leaving me. Some people think you can tell someone is depressed because of barely eating or sleeping. But for me I’m barely able to eat because of choking, and I’ve had insomnia and sleeping problems mine whole life like many with autism or ptsd. Staying in bed for days and lack of interest is also physical reasons. Well I still have interest just not ability. The thing is I’m not sure you can say for sure if me has depression or not. It’s been a thing mine old therapist used to think of because of mine autism and alexithymia. And now with the new challenges it’s even more hard. But you know a thing him did say was even if me was it wasn’t mental illness. That it was a normal response to what me was going thru. And honestly if me am now me thinks the same is true. I’m going thru a lot and in addition there’s some pretty scary things on the news and Facebook that is relevant to me.  The best me can do is try communicate with mine support people best me can and do what we can to make things more easy. And this is true for anyone with differences/disabilities or in general. Even if for some people taking meds for depression is part of that. For me I’m personal immune to those and most meds even pain killers. At the end of the day people need to understand that even tho depression can definitely be a serious mental illness, it can also be a normal response to depressing things. And to never ever dismiss how a person feels or what is going thru because you think that being sad for more than a few minutes must mean something is wrong with them brain. Like all the people most especially teens that get in the hospital for depression or even anger or drugs and put on meds and then put right back into abuse or homelessness. When maybe then not need meds so much if someone was able to help with them life. But also even if it mental illness like mine ptsd and OCD you should still be understanding and not dismiss because ‘it’s all in my head’. Like dumbledore says of course it’s all happening in your mind but why on earth should that mean it is not real. Ok I’m done and if you not remember most all of this just remember to be supportive and understanding of what a person is going thru. 

Today’s adventure and mini rant

What have I done today? Mostly typed this slowly but surely, mostly from inside my tub. Yes there was a reason and me tell you in a minute. But 1st me wants to say why am typing at all. Because this is 1 them times me am to overwhelmed to knows what am feeling and thinking so typing helps me focus from the racing in mine head. But also because me wants support but not to bother nobody because it’s not an emergency and mostly me prolly needs be or get used to this. 

Anyway the reason me was typing in tub was because was stuck. Worse than stuck, me fall not 1 but 2 times off the safety seat, maybe not so safety seat. Maybe this was my mine fault but even then me wants rant and be upset. Why? Because it should not happen. Me not do anything crazy. All me did was shave and brush mine teeth. Now sometimes me ask Grr or Cheetos to shave but them is working and me was itchy so me do it. It was bleed after but no more itch. And then me remember not brush mine teeth today so did that to. That’s it. Then me got in the tub. Me took mine time not that me has much choice anyway. But me guess was just to much ask mine arms do all mine hygiene. After all this I’m prolly not getting off the bed for tonight. 

These things is horrid. Part of me is super proud of how well me do. But part of me is so much upset of the struggles me go thru and how much slow the state is to help me. It’s scary. Falling in the bath is able to get hurt, but me can use bath wipes when not can get in the tub. But what more scary is than me can barely eat or drink or take meds. Almost everyday me choke on something even if it’s just air or saliva. It takes me 3 hours to drink my brekky and is only the size of a Starbucks medium/grande. And that may be all me has all day besides a few sips of water. These things can make problems. Me has passed out because not enough air and unable to move. 1 time started drowning/choking laying in the tub, now that was most scary even if me finally got mine head move to side. I may not be able get dressed or leave the apartment for days and has already had a few minor bed sores but am get better at trying to move a little more even on bed. And what if something happens like a fire and I’m here alone unable to get in my chair. Mine eyegaze device is approved so hope to has soon but there is things that a computer not can do. 

Me will stop now. Me am happy to has some great support people who do what then can when them can and for the service people that worked and is working to get me things like the eyegaze device and the new power wheelchair with better support. Mine insurance lady and doctor is pretty good to but there is things they not can do because has wait on the state DRS. And with the new changes and stuff me am scared will soon not be able has the things me need to live in a community and be forced into another institution and not be taken good care of or has freedom be myself to best me can. But for now me will try focus on what can do and what has. 

Do you know what is funny but not ha ha funny? Me am typically for me. But even this me has to invalidate mine feelings because so much scared to upset anyone else or be a burden. Everything me type me has thing in mine head and heart that says mine problems is not that bad , that me not should bother anyone, that mine needs is not as important as them comfort and/or stress, that if them gets upset is mine fault even tho me not ask for be different or has these challenges especially now with ms. In society everything is the on the person having the problem/differences/challenges whether is autism or needs wheelchair or Deaf you has to work all the extra to accommodate everyone else instead of society making everything accessible and being understanding. Do you know how not fair that is to expect a person to not only work extra hard to function best can but also to work even more extra hard to be the understanding accommodating person for everyone else because they not can handle that you’re different and needs help even if still independent. For us to always be ok making all the sacrifices and being the scapegoat and having our needs ignored , neglected , not understood even by people that we is most close and or depends on that may not know what they is doing or they mean good is harm. Like me was tell Grr a day us with challenges is so much considered a burden that is normal for parents and caregivers to neglect or kill us and most everyone says it’s ok and understanding that we was just to much stress. No wonder me stay scared be a burden. When me was little mine birth family tried to kill me. And me has been abuse plenty. And even not so long ago abandon by people because they not could deal with me and since then mine health has only got more bad and has more needs. Ok for real me am done now. Thanks for reading. And again me will say that me am happy for the good supports me do has. 

On dependence and friendship 

You know what’s really hard? Finding friends like me. Well ok making friend at all. But even for a nonverbal autistic adult who is mostly housebound I’m having extra trouble. Do you know why? Because I’m not smart enough. There are things on Facebook and the internet for adults with disabilities to make friends. Lots of nonverbal adults and or housebound adults use them. But I’m not a very smart nonverbal person. My iq is a little higher than you expect by looking at me but not super much. I have help reading and typing but even with that there’s the problem that I just don’t understand stuff. I’m not a very good adult friend. Some people kinda just deal with me like a baby brother or just ignore me. Both is sad. I’m smart enough to know I’m different. Most people like me don’t have Facebook. They have family and or support living. I think we need a space to make friends like us. I like to share paw patrol pictures and stuff on my Facebook. I has learn that Facebook can be very mean so I don’t add people I don’t know anymore. But me wish was something for us. Sometimes I’m not sure if I’m to disabled or not disabled enough. I guess both. To disabled to make friends like me and not disabled enough to not know. And it’s more bad in my head because sometimes I feel like a fake, like maybe I’m not trying enough. Part of it is the problems from ms – things like pain and heat flash and tired body and brain that you can’t see so it’s like why can sometimes I sit up and feed myself and others I need trunk and head support and someone to feed me. Part of is that with support and time I can do things like use Facebook or make this blog and it seems like the world thinks if I’m I can type at all me should be very smart and always able to understand what people say and if me has any understanding I’m should never has meltdowns or shutdown. Like I’m supposed to be really high functioning. But that if I’m dependent on others then I should have the brain of a baby. It’s all you see. People like who have severe differences that leave them nonverbal (autism, cp, ms, als, etc. . .) either is shown being average or above average smart when they get a device or they’re shown as completely helpless and not understanding anything. I will say great support means everything. I have 2 main caregivers. For now it’s still not all the time but is working with the state on something better. But both is mine friends. But it’s funny because 1 likes to do everything for me and let me know it’s ok to want help, and the other likes to do as much I can but will still help when me needs it. So like I’m being told to be more independent and less independent at the same time. Kinda confusing for me because I can’t find that point of where I’m pushing myself to hard, maybe because it changes everyday. Almost everything can cause pain and tired from brushing mine teeth to changing myself, even trying to sit up with no head and chest support. So I can be independent and hurt and be sleepy or I can let someone do things for me so I can be awake and enjoy them. Anyway the great thing about both of them is they completely accept me. They are ok that I’m very childish and need help but they still talk to me like a person. Maybe not exactly how they do other people our age because they respect what I can and can’t understand or deal with. But they don’t make me feel less. Even when I can’t move at all and am like a rag doll they joke and talk to me as tho I’m was able to reply . One even says my reply for me lol. The best thing tho was a day I’m was having a panic attack. I can’t understand words when I’m like that. I sent a picture text of my 5 point scale to show how me was. And when I didn’t respond to word texts he started finding ways to text with pictures to help me calm down. He was super patient and eventually I calmed down. It meant everything to me because nobody has ever do that before. Communication on my level was awesome. And honestly me wish more of the time people would text with in pictures since reading is so hard for me. Which again goes back to why having friends on my level would be nice. The other thing people don’t think of is communication with me on the go. I have a power wheelchair and a communication device (luckily am getting new better ones this year). The problem is even at mine most able times it’s impossible for me to drive the chair and type. So when we walking I can focus on where we are going or I can stop driving to process what the person say and find and type a response. The other option is to be pushed in a transport chair. Basically at mine absolute best I have to choose between independence or having a voice. I like being able to go where me wants to show things me sees but then I miss out on jokes and things. As I’m more and more housebound tho it’s not a problem but when I’m doing better and want to enjoy fresh air and have fun for a little bit it’s sad. I thinks it’s even more hard on me tho because I’m just getting more good at communication so it’s like now I’m learning how to say things and want to share but I’m not able to. It’s like in order to enjoy the friends me do has I has to give up most mine independence so that I can communicate and not be overwhelmed by pain and tired. But it’s hard because I’m already to dependent to make any new friends. And words the thing that is supposed to free me is something that has always been to hard for me. Even now that I’m learning ways to use them my brain gets to tired to understand or use them both trying to listen to people and trying to text. I want something like Tippy talk and bitmoji and Facebook combined. A way for us that have trouble with words to communicate with each other. But like with groups because some of us are still childish and will want to share cartoons and coloring but others are more smart and will want to talk of dating or politics. Idk I’m just sometimes feel like I’m the only person like me. I guess my past is to blame because of the abuse and homelessness. I didn’t have family keeping me safe from the world. I didn’t learn independent or communication skills I learned how to hide. And when I got help in my 20s it wasn’t by professional it was by a person my age. So me was teach different things and was teach them differently. And me got MS which stopped me from doing the things me was learning. I had learn a lot even if needed help but then it got take away. And for the last few years all me has to work is words. And even tho it’s the most hard thing ever me has done good. It’s a way to say me has needs and wants and feels and thinks. Me still uses lots supports but me can type this and me has Facebook. But it means that me has learn that me am alone. Learning is supposed to be good but not learning that there is a whole big world and you don’t belong anywhere not even with other people that has same things as you. In other news they should make a towel for wheelchairs. Like that attaches to it and covers it but is wide enough to fold over and cover you to with a head piece.