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.
I know there’s all this stuff of high or low functioning and stopping the levels. But that’s not what this is of. There is another part that is important to think of and that’s if a person can live independent/alone or not. This is mine thinking place of my functioning and able to live alone.
There is a pattern of what people think of me. If you only see me for small amounts I’m low functioning and where is my caregiver. If you spend a few hours by me or see my writing I’m high functioning despite my obvious disabilities (and you think I’m way smarter than me am). If you take the time to know me and close I’m low functioning but strong and smarter than people expect but in different ways. And everyone is wrong. I’m not low functioning or high functioning. I don’t need to in eyesight all the time. But I can’t even pretend to be neurotypical for a few minutes. Should I live alone? I don’t know. Can I cook? No. Will I burn down the apartment? No. Do I need help? Yes. Do I need to be told what to do 24/7? No.
I know I’m like a child. I spend most my time watching cartoons, laying with my stuffies and toys, or coloring. Or playing kid games on my iPad. But I have the responsibility of adult. I have to find a way to eat and put on clothes and pay rent and go see doctor. I’m not the best at any of those but I do them eventually. I have a lot of supports on Compass (Dynavox) and the iPad to help with these. Do I do better with people help with those? Yes. But there’s more to living with people than getting help. When I’m alone I have way less (and less severe) meltdowns and shutdown. I control my sensory environment. I’m not miscommunication with myself. Nobody is trying to make me be age appropriate or be social. Nobody is messing up my routines and rituals. Nobody is upset that it takes me hours and days to do things. I’m not a burden on anyone. I’m disappointing anyone by not hugging them or being able to do things they think I should. If I go to the store I can leave if I need to or take hours and nobody will care. People come with expectations and they needs. I have a hard time with my own needs, I can’t handle anyone else’s. I’m not trying to be selfish or uncaring but I’m just not able to. I don’t need expectations, I need you to see me as me am not who you want me to be. I’m sure some of this comes from my past. the abuse and the homelessness and the aloneness and abandonment, but also the times I’ve lived somewhere with people. As much as I know I could use help it’s not worth my sanity. I can’t be hurt anymore on purpose or accident. I love the peace of my own safe place. I may not take the best care of my physical health, but my mental emotional health is better. I’m mostly happy with myself and my life when I’m not worry of what society wants and expect of me.
I have a service dog. Her vest says Autism dog. If you ask about me you will hear I have autism. I have a lot of different things, and Allie is train for most of them. So why just the word autism? And why let people know and not just have a service dog label? The word autism because it covers most of my differences, especially what you see. People hear autism and understand I may not talk and that noises are loud and that I may have trouble with stuff. And they usually know autism can have lots of other diagnosis to. And I think my life and mind is better to just accept I have autism than to make my life about a bunch of medical stuff. I don’t want to spend my time trying to go to doctors to fix everything they think is wrong. I am more happy to just be, and only work on make myself feel better by say swinging or yes some medicine like my inhaler. But I don’t want to waste every minute worry about my medical stuff or why I am me or if I am broken and need be fix. I love me. This my life and my normal. Most Deaf people don’t want be fixed to be normal and me don’t either. This all I know, I don’t want to be a different person.
And I don’t mind if people know because again I love me, and because they are more understanding, but mostly to take a word from Kreeds world #nolimits. People don’t think a person with autism, well not as “low function ” as me can do anything. But they see me walking with Allie so maybe learn that even if I need some help I can do some things. I walk to the park by myself. I go in the store by myself. I may look funny to other people how I do it, but the good part is I do it. And I do it better alone because I know if I can’t be in there and can leave without need someone else, and I can put my music loud and take a long time to find something with nobody trying to talk to me or rush me. Allie just waits and when I need to go, she helps me find home. I think it would be more easy if a person took time to help me plan for store and what to get and more, but since they don’t then I don’t want them there when I need to focus really hard to get a thing and not meltdown. But I have to say Allie has made everything a lot more easy. She really helps in ways you can see like calm a meltdown and in ways you don’t like let me know I am safe.
I am alone. This should be great. I have a hard time dealing with people and it should be a great step to independence, part of growing up. But with great freedom comes great responsibility. I am now in a place to make choices for myself. It should be wonderful. I love having say so in what I’m doing and where I’m going. But it seems I can not make them alone. And even the ones I do, I need help do them. I am smart and should be able to do this but I am different and this becomes way to much way to fast. And I have no one to turn to. Some people think I have lots of friends to support me. What they don’t know is I call everyone friend even if I just saw them one time. Almost no one is what most think a friend. I have 3- al of which struggle with own differences. I love them dearly but they can’t really help but we all try to help each other as we can. And yes I am in a housing program y a autism center but neither seem to understand what I need help with or how to help. And i’m not always able to reach out or explain. It’s never been that I don’t want support or friends. Sometimes I feel more social than others but I am not able to be around people. I get confused and over stimulated fast. And I want to be able to live alone but I am starting to think me not can do that. And people sometimes ask if me do this or why doesn’t this work for me like it does them. And I have no answers. Being asked that or being told others sometimes feel that way only make me feel worse because why me not can handle it or process like others. Example I was told to set an alarm to eat, not a bad idea but that doesn’t help me with the 8 hour process of find out, getting, y make food if I don’t just give up. And it’s not suppose be this hard but for me it is and I don’t why but all I can do is cry alone.
So I’ve been in the hospital for a few days and am finally out. Apparently I’ve had an infection for 2 months but by time i understand it spread to mi kidneys. I was hurting which is new cuz i barely feel things they gave me morphine and narcos and antibiotics and stuff in an iv. They didn’t want me go alone so mi friend came for me and even bought groceries which was nice. They tried refer me get a worker from cau (community alternatives unlimited) but unfortunately cau denied me earlier this year. They don’t think it’s good that most (say 85%) time I’m alone. I have no assistance with things like keeping food and remember eat and take meds. I do mi best. The thing is I’ve always been me so i don’t really notice. Yes i know i have meltdowns but i rarely know why. I just try survive. And since i always say I’m ok then people assume I’m ok which makes sense unless you remember mi differences. If you want know things you have ask specific cuestiones such as did you eat or can you handle going to the store. And also i don’t always remember things or get them twisted in mi head. I’m just a space cadet missing a pilot – i am watching the
stars and hoping the bumpy ride don’t kill me yet cuz there is more beauty to see.
I know I’m smart . . . But to a degree. I know slot of things but have little or no comprehension. In allot of ways I’ll always be a child. In some ways better and in a few worse. For instance i can’t seem to make decisions easily when at all. I went to steak and shake and couldn’t figure out what to order. Mi head got jumbled with the choices and even though i wanted something different, i wound up getting the only I’ve ever got because by this point i was starting to have meltdown due to the confusion and all the noise and people. And all mi smartness doesn’t help me with social things or emotions. I can know i should say something or that somebody had a feeling but i won’t understand. Or sometimes late to get it. It’s very frustrating to understand you should know something but that it’s eloping you. Or say after a meltdown a few hours later i may be able to figure out what triggered and started it to a degree but that doesn’t help me cope or prevent it and most times i barely remember what happened. Even though I’m really smart i still need some assistance. Don’t get wrong i like that i can do some things but people seem to set me up for failure by thinking i can do more than i can based on mi intelligence and forget mi differences. You have to see all of me good and different.
People don’t understand how i panic. I try so hard to prepare for stuff but i can’t for everything and especialmente when I’m upset. Too much changes or nerves or excitement is just as bad as physical stimulation (such as lights, noses, e c t. .) Like today i knew they were bringing furniture but that wasn’t enough. There were several strangers around me talking and moving things in such a small space and they were all going way to fast. I tried to stay calm but it doesn’t work so well. It’s not that i was ungrateful. Honestly I’m thrilled people are finally trying to help me but it’s just to much. And then i have to feel bad that i can’t cope. I know it’s hard dealing with me but it’s also hard being me. I can’t control how mi mind and body reacts to different stimulation, i try mi best tho. It can be scary feeling like everything even yourself is out of control. And then they expect me to talk (or write) about what I’m feeling or thinking when part of me is blank and the other part is a million miles a minute. Mi mind and body are in fight or flight i can’t think of words during that time (even calm that’s hard). It can be hard. Take surprises they can be exciting and I’ll have no choice but to cope best i can which might not be so good depending on things. But if you warn me i could panic premature and not be able to go or just leave our hide. And just like I’ve barely understood anything that’s happened all week. People have talked at me so fast and i can’t do nada but just agree cuz i do want thier help but I’m clueless. I’ve never lived alone and it’s scary. I love having stable housing and is mine which is great but it’s a huge change from either being on the streets in la la land or having people around making sure I’m eating and other things. I just wish someone would take time to realize i can’t keep up and cope. I need a person to give some pics or something and take thier time explaining things and preparing me. I know I’m smart but i need time to process stuff.