I’m so excited about this. I just wrote about it last night but I’m going to write about it again after spending last night and this morning looking at more pictures and watching more videos. I can’t wait!! The drive through parade is three weeks from today. The event is the following Friday on February 11. I’m so excited.
I picked out my outfit on Amazon. I’m going to buy it when I get paid this week. I found a pretty pink knee length tutu. Thick white tights. Silver flat ballet style shoes. A black or white crop top (I think I’ll wear the white one but it comes with both so I can try it on and decide which one I like best). And a Jean jacket that has pearls sewn all over the shoulder area. I’m going to paint pink flowers on the back and maybe something like “autistic princess” or something like that on top. Then I found a pearl necklace too. I’m so excited!! I also found an “autistic princess” t shirt I want to buy and maybe wear that for the drive through and the other for the virtual event. Maybe I will buy a different color tutu too for the drive through. Maybe black because my shirt is purple and I already have cute black boots. I’m excited.
I’m excited too because this all feels like God. At the beginning of this year on the first day I was awoken and felt like God told me it’s time to come into the light. No more hiding in the shadows. Then later that day, it was a Sunday two weeks ago, the sermon was all about just that. I could hear God talking to me. I bought a wall decal for my sensory corner at work in the office me and my second momma who’s now my boss share as I’m her new assistant in activities for assisted living seniors. The decal is the Matthew Bible verse “Let your light shine.” Even my second momma says “this is your year. I can feel it.” So can I. So when her cousin came into her life who just made history as the first person with a disability to be elected on the county board for disabilities and has been helping my second momma help me and had her sign me up for my first event: Night to Shine, we got even more signs. The host church ended up being my second mommas sons church. And I had no idea until we looked into it that it’s a Christian based ministry with the whole message to let my light shine. That even with my disability God loves me and made me special. And the more I look into it the more I see this ministry also has a branch to help churches become inclusive.
I already knew churches weren’t inclusive. I’d done research a couple years ago and tried to work with my pastors when church just became too much for me. It’s always been too much but suddenly after I began to understand why I realized we as a church could make minor changes and reach a huge community. I read how most people with disabilities and their families stop going to church because of the lack of inclusion. My pastors were okay with the idea but we didn’t know where to begin and then the associate pastor moved and then CoVid. Suddenly I’ve found a place. And so I’ll be watching the online service in an hour and hope to start going in person. Maybe my second mommas kids (her daughter and son both go and I call them my family too) can take me sometimes. Knowing it’s a church a part of this awesome ministry feels safe. I love church but I just don’t feel accepted where I’m at. Maybe this is the prayer I’ve been praying. My faith is my biggest special interest. I love religion. I love God. I love the Bible because it’s the one place in this world people like me are the hero’s of the story. It was the first place I was wanted and loved and had purpose and I don’t need words to pray. God calls me and wants me and while others try to change me and hide me Gods been working to undo that and reveal me. Now it’s time.
I hope I can attend the virtual event at my second mommas house or her cousins with her cousin. I know if I do I can be me and that my other family, my non biological, God given family, will celebrate and dance and have fun with me. I won’t be asked how long the event is going to last. I won’t have to compete with whatever they want to do. I won’t be made fun of or felt like an inconvenience. I hate that feeling in this house. I can’t wait to have my own place. I know God is working on that too. My parents aren’t bad people. Just self focused. It’s about them. But this event is for me. I just want it so badly. I wish it was in person but I trust the virtual is what God wants for me this year. Oh I pray it goes well. I want so badly to be in a community of people like me.
I saw on one of the videos I watched a girl who had stuffed animals too. I found Pluto, my stuffed bunny, a black bow tie and white collar really made for kittens but that’s what his current bow ties are and they work well. So he’ll be dressed up too. We’ll take pictures. It looks really overwhelming and overstimulating but it also looks really, really fun. What people don’t always realize is just because something is going to be really overwhelming and overstimulating for me doesn’t mean I don’t want to do it or shouldn’t do it. Just because it overloads me to the point I can’t speak and need my headphones and don’t engage much doesn’t mean I’m not happy and don’t want to be there. Sometimes it does but usually I just need people to switch into my form of communication and enter my world.
So anyway, I’ll probably write about Night to Shine a lot in the next three weeks. I’m very excited. If you are someone with a developmental disability or know someone who has one who is 14 years or older (I’m 32 and my friend is 41 and people are even older who attend!!) I encourage you to look into Night to Shine. My research says it’s in every US state and 36 countries!! Chances are there’s a place close to you.
This is my year. I can feel it. My year embracing my autistic self 100% no matter how different this makes me in the world. No matter how many people stare or try to force me to “act normal.” I won’t hide who I am or put all that effort into being what I am not to make people comfortable because I deserve to be happy. I deserve to be me. Because who I am is not wrong. I don’t hurt people. Feeling uncomfortable because of how I am is not hurting you but your behavior does hurt me. Your comments. Your whispers. Just because I don’t talk much doesn’t mean I can’t hear or think. I might look lost in my own world but your words get in. I might not know why you’re staring but I do notice. That’s why I wish people would smile and say hi. If you’re trying to figure me out, smile and say hi if you’re friendly because I’m trying to figure you out too.
And God is with me this year. He’s the one who brought me here. And there’s no easing into this year. It’s come with a huge push. It started with my second momma (non biological and also recently my boss as I switched from house keeping to her assistant in activities at an assisted living place for seniors) having a cousin come back into her life who has a disability. This person is my hero. She’s not just any person. She’s famous and groundbreaking. She just made history as the first person with a disability who receives services to get elected on the county board for people with developmental disabilities and has been in the news and on the front page of the paper in the last week (I cut the article out and have it proudly hung in my second mommas and my office). And she’s been helping me and mg second momma get me connected to more resources and connections so I can have more independence and community.
The first event is in just a couple weeks and the more I look into it the more I see this is God and I’m excited and terrified. That’s Night to Shine from the Tim Tebow foundation. It’s a prom for people with disabilities 14 years and up and I’m all signed up to go. My second momma loves and celebrates and puts light on my autism (with my permission). She sees the beauty and gift it is and all people with disabilities are. It’s not how I was raised. I was raised to hide my differences. I was hidden and medicated and made to believe I was broken and should be embarrassed to act the way I do: to stim, to talk differently and in ways not usually using verbal language, to carry stuffed animals, etc. Being disabled growing up was shameful and not something I should talk about. It was an awful life. I was made to believe being proud of who I was and talking about it was wrong. So this kind of feels wrong. Night to Shine.
I read online how I’ll get to dress up. How *I* will be the *VIP.* ME. Me? Yes, ME. Why? Simply because I exist. Simple because I have a disability. That feels wrong. I don’t have to DO anything. People always say people shouldn’t get free handouts just because they’re disabled. At least the people I grew up with. I was taught I had to earn kindness. That I had to overcome my disability. That people wouldn’t accommodate me and shouldn’t have to. Suddenly here I will be going to an event and it’s made for me. And not the other people. What?! Who does that??
I’m struggling with it. I go from total excitement. Like seriously, I can’t verbally communicate it, but it comes out in squeals and huge amounts of laughing and excited hand flapping (I’m SO excited. I wish I could scream that but my second momma knows that’s what my behavior means). But it is punctuated by stabs of fear because new things are scary and new people and it’s overwhelming but then I know my second momma is going to be there and my new friend is doing it too and in the pictures everyone looks so nice and like they’re having so much fun and so my fear for once really isn’t too bad. The other strong emotion is actually guilt. I feel guilty I get this.
My second momma is excited too. There’s two nights because of COVID for my local host spot. The first night is a drive through event in person where I’ll get a tiara and special goodie bag. I’m so excited and have already expressed I want to wear it at work the entire week lol because the next event is the virtual dance the following Friday. My second momma says we’ll take her husbands truck (who we call my other dad lol) and she said we’ll decorate it. I don’t ever dress up like this. Parties are overwhelming. I think back to all the dances from when I was in school. They were awful. I was always an extra wheel and excluded. The only prom I went to was a last minute thing some people at school talked me into. My mom wasn’t happy I wanted to go. I borrowed a dress. I did my own hair. I lied to get money to have my nails done. But I didn’t dance at all. It was awful. No one wanted me there. It just was terrible. People were not kind. I tried so hard to fit in but I never could.
I waited to tell my parents who I live with about Night to Shine. I haven’t told my siblings who are both married and live elsewhere. I knew I’d have to hide my excitement because it wouldn’t be treated as a good thing here. I was right. I can’t wait to get in my own place. Where everyday can be a celebration of me. Of who I am. This isn’t vanity. It isn’t ego. It’s the ultimate self acceptance. There are still bullies. People say “no way she’s autistic! She’s faking!” I’m pretty. I’m incredibly intelligent. I’m also very gifted in art and music. If you hear me talk on religion, space, or nature, you’ll see how smart I am. I love those things!! But I still struggle and it’s wrong for people to have denied me help and to call me names because they can’t get past the fact I don’t fit their stereotype.
Last week people loved the outfit I wore Thursday. I had black leggings, a black tank top, and a brightly colored long sleeve button up shirt I wore with just one button buttoned the then tied at the bottom. I had black wedge zipper boots. My hair twisted in a bun. It was the day I was loud and talking a lot as I led my seniors on an indoor scavenger hunt for pictures of bugs as I educated them on really cool facts about each one. I drew a beautiful picture on our dry erase board to go with it. A stranger out have been shocked if they saw the tour to know I am level 2 autism. It would confuse them to come into the office after as I sat in my corner on the floor in my sensory area with my stuffed animal, boots off, now no longer communicating verbally but with a new sort of language when I bothered to communicate but mostly shut down and retreat back into my world. This world.
The outfit I wore was because dressing is difficult and overwhelming. It’s hard now because I wear a new outfit everyday in my new position instead of a uniform. So that day I had on leggings because they’re the easiest to wear and what I wear most often. No buttons or zippers. All overwhelming and sensory nightmares for me and challenge motor skills that vary based on overload. That’s why my shirt was only buttoned once. People thought I did it to be cool. Honestly I think I would have preferred it buttoned more. As I got ready that morning I remembered the one time I was in a psych hospital as a teen and I had accidentally button my shirt wrong and because of my auditory processing issues I didn’t understand what the staff said but he pointed and laughed at my shirt and when I looked I realized my mistake. I felt ashamed and embarrassed. I never told anyone that before. I never tell people how much I struggle because I’m used to people not believing me and also making me feel embarrassed and guilty and ashamed. So because of how smart I am I’ve learned to compensate. As a teen I lived in pajama pants and flip flops even in the winter. Now I know how to dress nicely and still fit my severe sensory needs and to account for my motor skills pooping out on me. Some days and times of day I could button my shirt all the way up. Some days I could tie my shoes. It’s sometimes about whether I can or can’t physically and whether I can or can’t mentally. Shoe tying is very challenging both mentally and physically. I only buy slip on or zippers but I don’t do zippers on pants because that’s extra steps. All these steps that seem like one for most (put on pants, put on shoes) is actually multi step and my mind sees it all and doesn’t always work. So I do things differently. I’m super independent and rarely ask for help. I think this is partly a trauma response (I had to learn so I could survive because I was in a family that still bullies me for needing help) but I do like doing things myself. Usually if I can’t do something myself another learned response is I’ll just refuse to do it which used to get me in trouble and still can because people think it’s defiant behavior instead of an inability. No one ever thinks to ask if I need help. They just punish.
But Night to Shine. I look at the pictures. Adults with disabilities like me. It looks like so much fun. Volunteers with smiles and high fiving. Am I going to be treated that way too? I’m sure because it’s like when I’m at work and my friends get excited to see me and are nice and get excited when I do. When they laugh it’s not at me but because I’m laughing too because we’re all happy. But work is an isolated bubble. I’m not not used to other places being like that. I’m used to grocery stores with people staring. To church with people whispering. To home with people ignoring and hiding and criticizing. To have another place where I’ll be accepted and loved is so exciting. My place in this world is growing.
I wonder if my second momma and me will pick out a dress together. I wonder how we’ll decorate my other dads truck. I wonder what color my corsage and tiara will be. I wonder if my second momma will help me do my hair. Maybe my friend my second mommas cousin and us can all look for mine and her dresses together. I want to make sure my stuffed bunny’s bow tie matches. My second momma will want pictures. I hate having my picture taken. She tricks me to take my picture now but I think if I look like a princess maybe I will like it and if I am with people I love. Maybe my new friend and I can get a picture together in our dresses. I wonder what hers will look like.
When I start to feel guilty, I remind myself this is a gift from God. Night to Shine is a Christian ministry. My local host is my second mommas sons church which we didn’t know until we went to register. It’s another sign. All of this. It’s about God having a purpose and plan for peoples life even if they have a disability.
I’m glad I can offer the world something. I’m glad my art and talent is wanted and accepted in the world. But I am so looking forward to a night where I don’t have to do anything or earn anything. I don’t have to try or think or play or act. I get to just be me and that’s going to be celebrated. That’s so freaking cool.
Not that I’ve told anyone I’m writing this blog but if anyone who does interact with me were to read this, I’d like to tell them when they wonder out loud “I wonder what’s going through her head” as I giggle and rock in my own world, it’s this last paragraph above. It’s dreaming of being a princess and hoping for it. My fairytale is coming true. And what I always hoped would be the case is true: I’m my own hero.
I’m so excited!! I’m going to go look at pretty dresses. I like the idea of a puffy long pink tutu with a ribbon around the top and a sparkly crop top but I can’t usually wear sparkly things because I don’t like the feeling and I’ll definitely have to have shorts under my outfit because I love being on the floor and I am always climbing and laying down and sit with my feet up so I’ll look for pretty shorts too. And I was princess shoes. I want sparkly princess shoes. I like dressing up. It brings my inside world out. Oh I’m so excited!!
Today there was a situation. I was in the office working on a project in my corner on the floor which we set up to be really soothing and sensory friendly. I prefer the floor. I love corners. I have soft white Christmas lights and we always keep the office lights low. I have a lap table to do work. I have my stuffed animal friend and pillows and soft blanket. We have a space heater for warmth and white noise. I love our office. I’m the assistant to my friend who is basically a second momma. She helps me so much. She takes me to doctors appointments. Schedules things for me. She advocates for me when I am unable to. She is always supporting me and pushing me.
Becoming her assistant for activities is a very recent change. I’m only in my second week. Prior I did housekeeping. We are work in an assisted living facility for seniors. Working as an autistic person has always been difficult. This is the most supported and most successful I’ve ever been working. I have trouble communicating verbally. I’m prone to meltdowns from sensory overload and slow processing. I have severe sensory struggles and specially regarding noise and touch. And I have selective mutism.
Verbal communication is SO difficult for me. People do not always understand this when I first say it because I can come across having very strong verbal skills at times but those times take the most out of me hence me being in bed now at 6. I could fall asleep but I wanted to get a situation from today written out because it confuses me.
Most people know me at work and love me. They understand my autism. They understand my social difficulties. They aren’t offended when I don’t respond or engage in conversation. They know I’m happy and loving and giving and talented and hardworking. They know I think and communicate and experience the world differently. So it’s not very often I offend someone at work or confuse people. We don’t often have to explain I’m autistic. But today we did. Well my boss momma did.
I was engaged in a task. I don’t engage in small talk. When there’s more than one person talking I can’t keep up with the conversation and so the noises blend together. It’s overwhelming and unless I really have to use energy to try to follow I won’t. And when I’m engaged in a task I hyper focus and don’t care about the noise around me. I don’t see this as rude. I’m not trying to be rude. Communication is REALLY difficult. I’m often flat affect but usually I feel very happy. It just doesn’t often show. I’m a very content person. But I live inside my head. You have to come there if you want to engage with me. Use sign language. Write me letters. Talk to me even though you know I won’t respond because you know I’m listening even when I don’t look like it. I care. I do.
We had a volunteer come in while I was working on a flier for my boss momma in my corner. He was chatting to my boss momma and I was of course not responding or engaging. I was listening. I wasn’t processing. I was focused on the flier I was making. I was listening to the back and forth sounds even though the words didn’t make sense. I love was processing. I was content. I was focused. I wasnt trying to be rude. I often shut down when I’m my corner so I can engage when I have to outside with our seniors who love me and are very accepting and understanding.
He suddenly stops and turns to me and said something like “if I’ve said something to offend you I’m really sorry” and I was confuse but my boss momma jumped in and quickly explained I’m autistic and I just like to listen and am not upset and am well loved and all of that. I think everything was okay after that and that he understood.
I don’t “look autistic.” At least I don’t look how people who think autism has a look looks. I’m tall and slender and like to dress like the pretty people I study on the internet to look nice. I think it’s fun to dress up. I’m quiet and quirky and a very talented self taught artist and musician. I will laugh and play and wiggle but people think “quiet, shy, quirky girl” not autistic and the problem with that is they misassign meaning to my behavior.
I don’t get verbal communication. I listen to people. To their words. To the sounds of their words. To the patterns of their speech. I don’t get sex or intimate relationships. I don’t get small talk. I don’t get enjoying verbal communication for the sense of talking. I don’t like talking about my problems. I don’t find it helpful. When someone else is upset I don’t know what to do. Someone my boss momma knows died today. She found out with me. I listened to her. She had tears in her eyes. I never know what to do. She like coke and she had bought me one yesterday because I like to be like her but I don’t like to drink them so I saved it for her and when she was done talking I asked her if she wanted a Coca Cola. She just laughed and said yes and then asked if it was the one she bought for me yesterday and I said yes and she laughed again as I gave it to her. I think that helped.
I do have empathy. I’ve been accused of not. If you don’t know me and understand me I seem uncaring. I don’t look at people when listening. If I am looking I’m probably not listening. And I don’t like verbal communication. I script and practice words all the time but when someone is upset I care so much I don’t want to give them fake. I don’t want to give them empty. But then sometimes I won’t do anything because I don’t know what to do. Sometimes I’ll pat my friends heads and walk away. One time my boss was upset at my last job (who had a LOT of experience working with autism so she was very good with me too) and I gave her my stuffed animal and then went back to what I was doing. My stuffed animals help me. I’ll pray quietly for the person even though I seem like I’m doing nothing. I have SO much empathy but I live inside my head.
Sometimes I wish people knew how much was in my head. I wish they could come inside because I have so much space in here. I guess that’s why I get lost. I sometimes wish people had to experience the outside world like I do. I wish they had to struggle just as much just so they could understand. But I don’t think they would. I think if people had to experience what it was like for me when they got done and went back to themselves they’d think autism was a tragedy and that I needed fixed or changed.
I love who I am though. I like how I experience the world. Yeah not being able to filter any sensory input means I get overwhelmed and can meltdown and crash and not be able to function and need to wear noise canceling headphones and take sensory breaks but it allows me to see things others miss. I can at times predict the future but it’s more I believe just me noticing small patterns and minor signs that seem invisible but they’re not. I love nature and love my unfiltered senses because I love taking in the natural world. The way the leaves dance. The smells the breeze carry’s. The animals trying to stay hidden. The unique bird songs. I listen and call them by name. It’s beautiful and a gift others don’t get. If people could experience my world then I don’t think they’d ever want to give autism up and would be envious if that was all they knew.
But autism is both. And it’s not good or bad it’s just different. It’s different ways of communicating. Different ways of expressing emotions and empathy. Different standards for what is rude and what isn’t. It’s direct. It’s focused. It’s just different. Not rude. Not scary. Not bad or disobedient. I mean okay it can be scary but all different things can be. And the way we get rid of fear is through understanding and learning. We change our fear by changing ourselves not what we are afraid of because our fear isn’t what we are afraid what we don’t know or understand. I notice people afraid of all sorts of silly things that are harmless and last night I felt very afraid of a bad dream that woke me up even though I knew it was silly to be afraid.
Anyway, please don’t worry so much if someone you’re talking to is quiet and doesn’t respond. Maybe they aren’t trying to be rude or ignore you. Maybe they’re autistic or have dementia or have another world they live in. Just be their friend. Be kind to them. Save your worry and upset for people who really are trying to be rude and mean. The ones who spread hate and unkindness. People who say unkind things and do mean things. Being quiet isn’t unkind. Quiet is peaceful. Quiet is healing. Quiet is educational. Quiet is freeing.
I wish people could come inside my head. I wish I could have taken that volunteer by his hand and walked inside my head. I’d show him the color and how I was thinking about bugs I’m learning about and how I ponder the beauty of space and where I have my house for God that I tend to in faithful prayer and quiet with God. I’d show him the music room and the building room where I take the sounds from people and make them make sense and how I take them apart and use them so I can speak when I have to. I’d show him why I don’t like that room when I have so many others that aren’t work that are freeing and beautiful where my art and music and love come from.
I was very content. I’m not easily offended. Being able to be offended takes skills I don’t have like knowing what socially acceptable to say and what’s not. Like when he and my boss momma were talking about her age indirectly because she looks much younger and he thought she was very young so she was asking him what’s middle aged because she might be and he said no way and their words were dancing around a number so I just said she’s 47. She just laughed and said how I’m very direct and unfiltered. Later she asked with a smile what if she didn’t want him to know her age. I told her that’d be silly because she looks so young and she’s so beautiful and none of it matter anyway because it’s just a number. I guess I don’t get offended easily or really at all because I know I accidentally offend people all the time like this. She wasn’t offended because she obviously knows and loves me but it’s happened with others.
So of course I wasn’t offended by anything he said. I just was disinterested and don’t understand the flow of talking when there’s multiple people and I just listen to the sounds and think about the words.
It’s all so confusing. I’m going to go eat some chocolate icing now. That sounds good and I have some in the fridge.
I mentioned in my last post and several posts autism and special interest and hyper focus and all that fun stuff. For me, art and creativity are my number one and lifelong passion. I can hyper focus on art for an entire day (no exaggeration) and completely lose all sense of time and bodily sensations. It’s not even that I’ll forget to eat or go to the bathroom but rather those sensations cease to exist. I don’t feel it. I don’t register anything. There is just me and my art.
I’m working on art now. So why am I writing? Because I’m in a transition. I just finished burning and painting and staining my last two boxes which I’ve spent countless hours on at this point. The last thing I have to do is sand them once they completely dry and then seal them. And I am SO excited for these!! I am SO proud of these and I love the people I made them for so much and cannot wait to gift each unique box. I think I will be able to tomorrow. I made a total of four boxes in addition to the several other gifts I made this year.
Each box is unique to the person. Each gift is. My art is a born gift and ability. Wood burning is a very recently self taught skill I’ve fallen in love with unlike other passing interests.
I’ve heard many autistic individuals have a very strong creative ability. Ironically I believe my extreme creativity is why many people challenge my autism diagnosis. I have excellent handwriting as well. I’ve taken time to explain to a few people who actually listen to me that writing is just another form of art for me. Each letter, each word, is a picture. Writing is just another form of drawing for me. But it’s also why I can write something and not know what it means. It’s why I struggle to read when something is written in many colors or fancy fonts or a combination. It’s why I get very overwhelmed by paperwork and such like that. Because it’s pictures and I have to translate. And it’s not easy. Copying is easy, though. Processing not so much.
I love art. My whole life I’ve told people I wanted to run away to the woods and be a caveman painting pictures on a cave wall for just me and God. I guess God has other plans for me and my art. Lately I feel another big shift in my life and purpose in this world. I feel God moving me. Of course there’s the obvious of my new job change.
I know God works in unexpected ways and uses unexpected people. Still, I always somehow think I’m the most unexpected of them all. I have a conversation with someone and then after have to shut down and feel so drained. I cry from loud noises. I’m debated and I confuse people and scare some. I’m misunderstood.
There are many people when I confess these feelings that turn me to all the good. Many call me an angel and that worries me because of the people who don’t like me and think I’m a fake. Someone is wrong and sometimes I fear I am a fake. I pray to God to tear me apart and expose me if I am. I know what happens to the hypocrites in the Bible. I don’t want to be them. And then I remember even Jesus had his haters—people who called him a fake too. It was so bad they killed him. I won’t be killed.
When I make art, all my worries disappear. My attention to detail stains wood burnt pineapples two different shades. I paint a sunset and I feel close to God who paints sunsets in the sky. I think of the person the gift is for and all those who will see it and be amazed and feel joy and awe and we will praise God for this gift in me.
This world makes no sense to me, and often I feel anxious and lost. But when I make art and look at my art, everything feels right and nothing else matters.
In a couple hours I’ll be going into work on my day off with my daughter and friend to pass out the Christmas cards I made for my residents. I can’t wait. I might play my ukulele for them a little too. At least some of them.
Well during this break I have realized how badly I do need to go to the bathroom. I’ve been up since a little after 5AM this morning working on art and watching Christian Christmas specials. I have a new book about David in the Bible. He faced much adversity too and was one of those unexpected people. What I love about religion and the Bible is only in the Bible are people like me—disabled, different, a liability—chosen to be loved and to be hero’s. Only God could have a purpose and desire for someone like me even when I was at my lowest. It’s easy to love me now but it hasn’t always been that way.
Anyway, here’s my boxes!! They’ll look even better after sanded and given a pretty glossy seal.
So a big part of autism are “special interest.” I put it in quotes because it seems like a silly to me. I like “specialities” or something like that. Everyone has things they’re into. When someone on the spectrum is into something, we are REALLY into it. Meaning we learn everything about it. We collect it. We know so much about it. And when we get started on it, it’s hard to get us off.
Some of mine are extra intense but last only a few months. My NBF (non biological family) will tease me when a new interest pops up “I give it a month.” Often I don’t even make it that long!! Like cookie decorating. I fixated on it for about a month learning everything I could and planning it and had a whole business in my head. When I set to actually start doing my project, turns out I liked the idea of it more than the practice. Because of how I am, of course I nailed it, but I didn’t enjoy it. I don’t like mess or dishes (dishes are my LEAST favorite chore because I dislike my hands getting wet which is why showers used to be a huge issue; it’s the dry/wet/semi moist transitions I hate!).
Some special interests come from masking. I want to be like someone I think everyone likes so like once there was someone who ran. Well I took her running and turned it into a special interest. (Yea I’m using “the term”) I learned everything about running. The mechanics. The proper form. I even trained for and ran a half marathon!! I hate running!! But at that point in my life I masked and wanted so badly to be liked for the image of someone I was trying to be instead of myself. Runners are cool. People like runners. And running is a solo sport. And when you’re in a group of runners you talk about running and I taught myself the language of running.
In fact that’s kind of what special interests are for me. It’s a language. A way to communicate with others.
I’m glad I don’t do special interests for others anymore. I’m glad I’ve found who I am and what I like and can try out different things for me to keep finding myself and finding more ways to add to the world.
Some interests are enjoyable for everyone. People LOVED my cookie baking and were disappointed it came and went so fast. However my Marvel phase they still just tolerate. It’s not THE special interest so my wardrobe isn’t Marvel anymore and I don’t constantly watch Marvel movies and interviews and obsess over the cast. However if I’m around someone who does love Marvel, I will jump right back into it. I do enjoy Marvel. I relate to superhero’s. They’re different and sometimes feared and sometimes admired but even with special powers they make mistakes like everyone else but they’re just trying to make the world a better place. That’s me.
And the same can be said for space. I LOVE outer space. I’m fact I tried to go to school for it, but despite my extreme potential to learn, school is too much for my processing issues. One day maybe I’ll find a way to do it like I’m learning for work. Failing at college for my special interest took a hit on it. If I had been successful I’m sure I’d still be obsessing over space. I LOVE outer space. I love the stars. I love to look up and imagine The Little Prince (my favorite book other than the Bible) and my own planet where I belong. One that’s designed for me. Without buttons or buzzing electronics or bright lights. One that moves slower and is quieter and where people help each other out and communicate without noise. With lots of trees and not much clutter. Where people work hard for each other and love. And everyone is themselves. No hiding or games or accusations of faking anything. If someone changes, that change is celebrated like a caterpillar that finally became a butterfly. Ignorance is not the master on my planet. And I love looking up because space is infinite with our current knowledge. You look anywhere else and you hit matter. No looking up. I can breathe looking into space.
And there are a few precious gems that are lifelong special interest. In fact I can think of three: religion, art, and writing. These are my highly learned and specialized skills. They are high areas of interest I’ve done my whole life. They are passions that bring me joy and freedom and that I can literally talk non stop about fluidly. Now, like all verbal language, while special interests I tend to be able to talk non stop about without much notice I speak differently (giving people who only speak to me in the language of special interests whether mine or someone’s I’ve absorbed the impression I have no speech difficulties and then when they see me struggle they assume I’m faking it). When I am tired or compromised (sick, upset, hungry, etc) even special interests will be a struggle for me to verbally communicate. So there’s a tip. Want to know if I’m okay? Try to engage me in a special interest conversation either my current obsession or my long lasting trio. If I don’t start talking non stop about it or engage, I’m overstimulated or something is wrong.
So anyway, I have a new current obsession and it’s fashion. Which is ironic since many people think autistic people never care about fashion and can’t have a sense of style or wear makeup. WRONG. And honestly once this one—wait for it!—goes OUT OF STYLE (haha, see what I did there??) I probably will go back to not caring and wearing the same pair of pants every day. But for now with my transition to a new position I had to buy dress clothes because I didn’t own any and I’ve gotten fixated on fashion. I LOVE matching. I’m not sure which part of my autism this is. I’ve always been infatuated with patterns and with matching things. Like how I have a matching agenda, contact book, blankie and now water bottle and soon some more office supplies for my new work space. So with my new style I’m fixated on matching. My shoes, my outfits, my nails. And it’s an endorphin rush and I love it and it makes me happy and it’s what I’m consumed with. That and my art of course. (I’m almost done with two more boxes for Christmas presents. I’ll reveal those later.)
So anyway, I just wanted to talk about it and share my outfit today because it makes me happy and I match. I bought cheap large necklaces. I bought a nail kit. I’m so bad with money because of special interests and in the future will get help managing money but right now I get an idea and will buy something.
But I always carry a stuffed animal friend and Pluto is my go to. My bunny. Because Piggie is so old I’ve been leaving her home more and just taking her out on the weekends with Pluto. Someone told me recently maybe I need to retire Piggie and give her a special place. She is not an object. If there was a day I needed to say goodbye to Piggie I would have a proper funeral and burial for her. I don’t care if people think this is silly. Piggie and Pluto are my best friends and I have a very strong emotional connection to them. It doesn’t need to make sense to others.
Anyway, but Pluto comes to work with me and I always have my stuffed animal friends with me so I decided they needed to be included in my fashion too. Plutos bow ties will be here tomorrow and I’ll post another picture. After much looking and thinking I got a 30 pack of small dog bow ties. I still might need to tailor the collar of the bow ties because Pluto has a pretty small neck, but then he’ll be able to mix and match too. Today he would be wearing the red one (I can’t remember if there’s a red and black because that would be even better). He’s excited too.
That’s one of my favorite things about my residents in the assisted living facility I care for. They love my stuffed animals and have perfectly normal conversations with me about them. They refer to them as my friends. They ask me their name. They treat them with respect and love them. It’s not weird to them I’m an adult with a stuffed animal. They don’t ignore it because they see it as a part of me and something I love. Many of them have stuffed animals too. Sometimes I think it’s curious how my seniors meet me where I am. In their former life they probably would have acted like most of society. But at this stage in life they meet me where I am. They left me in adolescence and they join me at the end. Where do you go in the in between? Are you glad you went there?
I watch people and wonder that a lot. I know people look at me in my own world and wonder the same thing. In my silences they’ll ask, knowing I won’t answer, “what is it going through your head?” Honestly, usually I’m just absorbing all the senses—figuring out what that strange noise is, guessing correctly who’s walking down the hall based on the sound of their footsteps, figuring out smells and sights. Or if I’m listening to music, I’m in the song. I’m riding every word. I’m feeling it with every atom. Or often I’m trying to process confusing thoughts like why that lady at work said those mean and hateful things about me. Why she is hurting so badly she hurt me. What can I do to help? I’m a problem solver so I’m often working on a problem in my head. People say there’s no solution but maybe there is it just hasn’t been found yet. And I talk to God a lot. I can be quiet to do that. And special interests. And I’m practicing words and building conversations so I can use verbal language. I’m always practicing your language. It’s exhausting. So I’m grateful when people don’t demand my words. When they find other ways to communicate with me. When they let me be in my silences which I love and still stay with me and love me there.
There are so many languages in the world and autism has so many! Special interests, silences, art, music. You think I speak so well. That’s because you’ve never listened and you get mad when I won’t use your words because you think they’re mine. When people learn my language and talk to me in my native ways, I am always beyond thrilled. The best gift you can give an autistic person is just enter their world. At least that’s the best gift someone can give me. I love that more than anything.
I am autistic. I am officially diagnosed by a highly specialized autism doctor using various tests specifically designed for diagnosing autism in various settings over several long visits. I was diagnosed recently as an adult because I am a verbal female with very high artistic abilities and ability to watch something and repeat it and perfect it. I have a gifted IQ.
I’m also just getting diagnosed because I spent most of my life misdiagnosed with mental illness. This is again common for females on the spectrum at my age.
I’m highly sensitive and highly empathetic but my ability to understand and express emotions in the moment is a challenge. My verbal abilities come and go but this used to be accused of me doing it on purpose. I assure you I do not. Losing the ability to communicate verbally is really frustrating and scary.
I am socially pretty. I’m tall and thin. I’m told I have a pretty face (however this one guy I clean for keeps going on and on about how I ruin it by wearing glasses). I am very talented and self taught in art. It’s a gift I refuse to sell and is well known where I work. It’s admired and envied. Admiration is kind but when people start to envy my gift or something about me they forget the cost and that there’s more to me. I am good at art because of my autistic mind but not all parts of my autism is great. And just because I look pretty doesn’t mean I can’t be autistic. No matter what the outside looks like, autism is a neurological difference that has no physical look. I think and process VERY differently in a very specific way that is called autism.
I have heard it is common for people to accuse an autistic individuals of “faking it.” I’ve seen it. What sickens me and saddens me is most often, and both times it’s happened to me, it’s from mothers of autistic children. Because the person they are causing is nothing like their autistic person they know, then they believe that’s the only way autism looks. They’re wrong.
Today was the second time it happened. Not to my face but indirectly. A friend at work who I love and is like a father (I’ve got so many mommas and dads and grandparents of course because I work in an assisted living place and sisters it’s wonderful!). He just found out about my new position I’m starting in two weeks as my non biological family’s (NBF) assistant in activities. This position is perfect for me because I’m so creative and energetic and I have experience in it from my previous job with adults with developmental disabilities.
I am scared to take this position too. Aside from the fact a few people (and it really is just a few; I’m very loved and safe at work) are saying it’s just because me and my NBF want to spend more time together (it’s not; yes we enjoy each other and love each other a lot but we love our residents and I compliment her chaos and get things done with my organization and art). I’m scared because I know this position pushes me to my limits and without proper support I will fail. I used to have meltdowns every single day at my last job. Because they worked with disabilities like mine and were desperate for help they didn’t care but they also didn’t make my work environment any better for me. I can’t meltdown like that here but I am also VERY supported.
However recently I had to get top management involved as I felt targeted by a few people in my supervising department and HR. She was VERY responsive and kind and took immediate action and my NBF and her held a training. For some it made it worse.
When my friend was talking to me this morning, super excited that I was moving into this position, knowing it’s perfect for my art, he started talking about the ornament I made him and how he wants to get me something and asked what I wanted and I told him with absolute sincerity that the people who love and support me is all I’ve ever wanted so I have everything I desire. I mean this 100%. I’ve been homeless. I know what it’s like to have nothing not even food or a shower. But in all those dark times all I ever wanted was someone to love me for me. Who I could be myself as different as I am and be loved. I love to love and I love to be love. I love playing and hugging and being silly. I’m not interested in gossip or social media. I love religion and believe God created me special for a reason.
My friend said he’d always stand up for me and protect me and he didn’t care what my boss (his boss) said that he’d even stand up to him and his assistant talking about me. And I was like “wait what?” And he was like “oh yeah they were talking about you faking autism and that you went to [head boss] because you want to do whatever you want but I think you’re awesome!” He was talking so fast and had no idea how bad the news was he told me. He was so excited for me and is such a nice man.
We said bye and I went immediately to my NBFs office (soon to be mine too but she always called it mine too) and sat shaking. She was coming in late because she’s working late tonight so I texted her what happened. Her current assistant was there and in her feelings and that’s fine. I think she’s needing extra love as she’s about to leave. But she had no idea I was upset but my NBF got there shortly after and I was on the floor and just started crying. My NBF came and pressed her head to mine and asked what she wanted me to do. I didn’t know. I said “I just have two more weeks in this department” but I also said if they tried to prevent me from transferring after that because they’re so short housekeepers I will walk out. And I will. I will not work for this department with vipers who are not only not helping me but hurting me by spreading harmful lies and rumors.
If someone were making racist comments there would be outrage and the person fired. Disabilities aren’t given the same respect yet. Ableism is still tolerated and encouraged. My NBF promised me I’d be safe in my new department I know this is true. I know I am safe at work. The vipers are only a few and I have an army that protects me that are much more powerful. I am safe in my heard.
I see this person watching me. I can see the disgust in her face. Her judgement. What have I done to her? She is mad because she cannot touch me. My work is perfection. She can’t come at me like she does other housekeepers. She has pushed so many out. So she attacks my other behaviors and when I’m protected because it’s related to my autism (like needing sensory breaks which I take in my NBFs office—I don’t like verbal communication so we’re not in there chatting often. Talking things out doesn’t help me and usually makes things worse. Usually I’m just listening and shutting down a little and I like to rock with my stuffed animal and now blankie too). And the fact I’m allowed to do things she doesn’t like she is saying I’m faking autism and feels qualified because her daughter is diagnosed high functioning autism. But her daughter can’t hold a job and isn’t where I am in life. But she also talks mean about her daughter and once I asked why her daughter didn’t work here and she was like “oh she couldn’t do that” in an unkind way. She lets her daughter live at home and do nothing. I’d probably be a lot more like her daughter if I’d had that option. I didn’t. I grew up in an abusive home and kicked out. I was blamed and punished. I was homeless. I’m resilient. I’m innovative. I’m highly intelligent and creative. I am a survivor. Yes I’m nothing like her daughter.
Comparing autistic people is silly. I want to say “you can’t be neurotypical. You’re nothing like my neurotypical mother!” That’s how silly it is. Or to the first bully who only knew of her 3 year old autistic son who actually spoke much better than I did at that age, “you can’t be neurotypical because you’re nothing like my 9 year old neurotypical daughter!”
Why do people get so threatened by autistic people who don’t fit their stereotypes? Why do people blame the autistic person instead of their ignorance? We victim shame and blame. We blame rape victims for their abuse. People blame autistic people for the accuser’s ignorance. That lady is a really mean and ignorant woman. She has many enemies at my work prior to attacking me.
I’m not a hateful person. My NBF said she doesn’t think I have that in me. I just find that draining and it pulls me away from my faith. The Bible says God will take care of the bullies. I’m easy to hurt and take advantage of. But this person is poison. She is a dangerous viper and I fear her. But I look up and I see my heard and know I am safe.
In the animal kingdom pack animals like elephants and buffaloes when being attacked by predators will form a circle and in the circle is their young and vulnerable. I’m in the middle of the circle. I don’t understand why we’re being attacked. Why are they trying to get me? I guess for the same reason. I’m vulnerable. I’m an easy target. Predators never go for the strongest. They go for the young; the innocent; the vulnerable.
My heard is strong. I can see the predator and I am afraid but I know they cannot hurt me. I know I am protected. But like the babies cry so do I. I’m afraid and confused. This world makes no sense.
I went into work VERY anxious and it sort of set the tone for me being incredibly anxious and absorbing all of everyone else’s emotions. The cause of me starting the day off anxious was because I forgot my iPod and didn’t have my phone so I had no way to tell the exact time and no music.
This minor change was a HUGE anxiety inducer. Then my non biological family—soon to also be supervisors current assistant who I’m replacing in two weeks was there today after calling off last two days and I’ve been anxious around her lately because she’s snapped at me a few times. I don’t think she meant to or maybe even saw it that way but I’m super fixated on my new position and anxious too so I’m asking a lot of questions and this is something I do a LOT and a lot of people don’t like it and find it annoying. I ask questions ALL the time. I want to understand the world around me. I want to understand the why. I’ll ask why CONSTANTLY. I’m not trying to be rude or defiant. I really do just simply want to understand. She snapped at me saying my new position isn’t that hard and I’m overthinking. It wasn’t very kind and it wasn’t helpful or reassuring and has just made me more anxious. Today I felt like she was annoyed I was watching her work. I wanted to understand what she was doing and again the why. Why was she doing something a specific way. That way when I do it, I can do it and I can do it more efficiently. I’m a problem solver and I observe and then make adjustments. It’s not a competition or about showing anyone up. It’s just how I operate. I want to do things accurately and efficiently and to the highest level of quality. I’m a perfectionist.
But I feel like I get in the way a lot. I don’t really socialize but I do like to ask questions and talk about current fixations. Right now it’s pretty much my new position. I can be difficult to engage in verbal communication. It’s just verbal communication takes a LOT of brain power. It makes me focus on and process noise and meaning and all these other things when I’d rather figure out the puzzles in my head like how can I do what my coworker was doing but more efficiently so there’s less mess and it takes less time and looks nicer. And what activities can I plan. And why would someone be mean to someone who is nice to them.
I get stuck a lot. I’m repetitive and have lots of repetitive behavior which is a huge part of autism but sometimes I get fixated on something because I’m anxious and can’t get off it easily. Fixating on work is enjoyable. But today I kept building up anxiety and then my non biological family (NBF) lost her keys and she seemed upset and because I was already anxious today I got fixated and stuck on this and wanted to find her keys for her and got more and more anxious that her keys were lost and she was upset and it was bad. She missed my cues and it was a bad communication day mostly for us. I couldn’t understand what she was communicating and it was much different than last few days so I was anxious and it just all felt off today.
Her keys ended up being locked in her car. She mood seemed to improve. I know she was stressed after last two days of her assistant calling off. I know she’s trying to get me a structured schedule built for when I come over. She does so much for so many people.
Then I get upset and think I am going to mess this up. I’m going to mess up being her assistant. I want to do a good job. I want to help her. I was to be useful. I don’t feel like I was today. She didn’t like my idea for a bulletin board today even though one day she did and I couldn’t understand why today. She lost her keys and I couldn’t help and couldn’t find them. And I felt like I got in the way and started getting emotional and couldn’t communicate any of this.
I finally calmed down when I got an extra, tight squeeze. I like tight hugs so I call them squeezes. I get one in the morning and one before going home. Because I got emotional I started to get upset wanting another. I just was able to say “I feel scared.” And I did. I don’t know why. I don’t know what I was scared of. I just felt scared. Then she said I was doing a good job and I did a good job and I finally calmed down and felt most of my anxiety leave. I think I just needed that communicated. I couldn’t tell if I was doing something wrong.
I take in SO much information from people. Their tones. Their partners. Their value. Their words. Their smells. Their looks. Their behaviors. All of that. And minor changes or inconsistencies raise a flag. This might be a huge part to my trauma disorder in addition to my autism. But these inconsistencies can mean danger. Plus I struggle to understand emotions in myself and in others. I’m HIGHLY empathetic but I’m not good at relating to others emotions or understanding them or mine or what to do with that information. So my NBF losing her keys someone explained is stressful and had nothing to do with me. But I can’t relate that my social interaction that isn’t our usual happy, fun, quiet interaction and instead feels distant, distracted, disengaged isn’t because of me but because of her thoughts in her head of all she has to do and her lost keys. All I can understand is it’s she and me and she seems upset. So I become fixated trying to find her keys because she says keys is problem so I try to find keys to get kind, smiles, happy back and think it’s all my fault and my responsibility.
Of course when it’s happening I can’t understand think. I just get caught on “I need to find D’s keys.” And I start to want familiar words. Sometimes I’ll get caught in loops of wanting to repeat words or phrases over and over with someone. I’ll get in loops of asking someone over and over “you okay?” Or I’ll ask over and over “what’s the matter?” Sometimes I ask someone what’s the matter when I’m upset.
Words are tricky and hard. Some people say “Liz is so good at communication.” Other probably think “I’ve never once heard her talk. I didn’t know she could.” Some people think I’m not very smart and other think I’m faking autism when all they hear are my well practiced short scripts when I’m in very favorable conditions. Verbal communication is all difficult for me. No matter how much I seem to be struggling or not. Sometimes it’s easy to spot I’m struggling like when I stutter or become really repetitive or just laugh and point or am hand flapping agitated unable to get words. And oftentimes im mistaken as rude because I don’t look like someone with a disability so when I don’t respond they think im being rude. But sometimes nothing seems off. Usually those times are the times that take the most from me. Those I am using all my energy and need to actually recover in silence for a long time. Those times lead to the stuttering and repetition and silences.
But writing is different. It’s quiet. There’s no back and forth. Im in control.
I don’t know how tomorrow will go. I will have my phone. I also have my iPod in my bookbag too. I got a new contact book and blankie both that match my new agenda. I like when things match. Actually I LOVE matching things. I love matching outfits and matching accessories and matching rooms. So my new stuff for my new position makes me very happy. It makes sense. It’s organized in my head. I don’t feel anxious when I look at my matching items. I am looking for more I can match too.
I’m very sensory seeking for touch which is why I love this blanket. I carry a stuffed animal friend everywhere with me and I think this blankie will be another traveling companion too. My stuffed animal friends and comfort items help me feel calm in a very unpredictable and chaotic world.
Once again I’m writing at nighttime to try to empty my head. I’ve been up since 5 AM. I’m sure I’ll be up by then tomorrow. I’ll start the coffee pot. Go to the bathroom. Brush my teeth. And go to my garage art studio and continue working on Christmas gifts. I didn’t get as much done today as I wanted. But today was a success. I got my new glasses with my mom today and for a Christmas gift and much needed sensory aid she bought me prescription sunglasses. I’ve desperately needed those my whole life. I have light sensitivity especially outdoors and in stores. Fluorescent lights are the worst.
I haven’t had an eye exam in years but thanks to my mom who was surprisingly amazing the whole day and I am SO grateful for it, I did well. I had my stuffed bunny Pluto with me and everyone at the place was nice. We went to a different place for my glasses. Because I broke my glasses during a recent meltdown I needed new ones asap. Eyemart Express gets you same day glasses. Not just that but it only took an hour to get my glasses and sunglasses. We were at the mall which is a treat because while we didn’t go in (I cannot handle malls even a little) it has a restaurant where I can get vegan fried pickles and also there’s a Whole Foods where I get vegan junk food. (I’ve been vegan for several years and vegetarian for about half my life).
After that we went to a few stores at home. Because I’m so hyper fixated on my new position but still have two weeks left in my current position and because I struggle with transitions and this is a HUGE one I am still stuck on wanting clothes and have been constantly searching things I can do with my residents and planning the art gala I will do in three months.
And this hyper focus on my new position and total obsession with it turns into anxiety and I think “I can’t do this. I don’t want to do this. I’m not doing this.” But then I remember how done I am with housekeeping and how I can’t do that any longer so then I think “I need to leave and find a new job at a completely new place doing something totally different.” But THEN I look at jobs and realize how little I can do and tolerate. Things like “you don’t drive” and “you don’t work well with kids and don’t enjoy kids” and “this job would have too much verbal talking” and stuff like that. So then I think how I can perfect my new position and take the anxiety and I’ve put myself in debt buying more clothes even though I now have enough to wear a different outfit for two weeks and bought makeup even though I never wear makeup but I want to look pretty and bought a nail kit even though I never wear nail polish because of those same reasons and my daughter wanted her nails done and I wanted to match my NBFs boss (non biological family) who will be my boss too soon. She’s the reason I was so drawn to the leopard print glasses I got. Because she and M also in our trio like and wear animal print and I don’t know. But I feel guilty and ashamed I keep spending money but am so caught in a loop right now.
And I get in these anxiety loops and naturally I am a busy person. I give myself massive projects to do like all these Christmas gifts and making 175 Christmas cards with goodie bags. And I try to trust God and pray and really I need to start doing yoga again but I go go go and can’t easily stop. That makes sleep REALLY difficult. My anxiety increases sometimes when I’m still. This is normal for my heightened state I’m in. I have a trauma disorder with my autism and have had trauma counseling. It wasn’t helpful but it did teach me some things. Like how when your body is constantly used to being in flight mode, resting can cause huge spikes because it feels dangerous.
It’s going to be a little rough these next two weeks and possibly longer. Weekends are the worst because I don’t have the structure of work. I wish tomorrow was Monday.
So something my mom said to me today is bothering me a little. My sister made a similar comment before. It’s about how from their perspective my autistic traits have gotten more noticeable and worse over the years. They say “this didn’t seem to happen when you were young.” And I say it did happen it’s just we didn’t know it and it showed itself in other ways. Alexithymia is where you can’t easily understand your emotions or label and communicate them. It’s something I spent YEARS in therapy tediously going over emotions and it’s annoying no one recognized this sooner. I think “it’s so obvious!” My autism was SO obvious. But when you choose not to see it, you won’t see it.
That and a lot of my autistic traits I was bullied and abused into hiding. I was so scared. But even though I didn’t hand flap like I do now and I scripted ALL the time or just made people angry not taking at all (whereas now I use my own language sort of which is limited scripting because it does drain me, single words with pointing or gestures, ASL, and repetition), even though I didn’t wear noise canceling headphones or sunglasses indoors, even though I couldn’t label what was bothering me, it happened and it showed in violent and self destructive ways. My body is over 50% covered in scarring from self injury when I hid my autistic traits. I used to drink and smoke cigarettes. I was attempting suicide monthly for about 11 years. I struggled HORRIBLY and those were autistic traits too. Those were the dark autistic traits from being abused and not allowed to be myself and being made fun of and punished.
I’m not more autistic now. And my hand flapping and rocking and limited verbal speech isn’t a loss of abilities or an increase in autistic traits—or as my mom incorrectly labeled it “worsen of autistic traits.” My autism hasn’t gotten worse as I get older and understand my disability and mind better, it’s actually gotten better and people would realize that if the focused on the inside and not the outside.
I’m HAPPY today. I WANT to live. I have a full time job. I have SO MANY people who love me and support me. I am making art at an incredible level. Those are traits of a very healthy and thriving person.
I went from actively trying to kill myself (and being near successful too many times to count and being mad at God for it) and self injuring and using chemicals to numb myself and being heavily drugged on psych medications unable to hold a job in and out of psych hospitals to being HAPPY and WANTING to live and not hurting myself with the exception of an occasional meltdown which are happening farther and farther apart. I went MONTHS without a violent one prior to a little over a week ago. They used to happen DAILY sometimes more than once. Unmedicated. Working full time and about to move up.
I don’t know about you but I’d say that person is growing and getting better. My autistic traits were not as obvious to most people back then as they are now but that’s proof of autistic traits being HEALTHY for an autistic person. I’m proof rocking and hand flapping and finding my own way to communicate no matter how outside social norms it is is HEALTHY. And anyone who prefers that old me because it appeared more socially acceptable has no idea what they are saying or wanting.
I don’t ever want to go back. I am HAPPY. Today I am HAPPY and I WANT to live. Sometimes I just say that to people because I can’t believe it. I’m humbled by it.
And I just was telling my nurse friend yesterday I will share my story and always fight to make the world a better place and to change stereotypes and fight for inclusion and better understanding and acceptance because it makes me so sad to think if I had been successful killing myself at 14, 16, 22–I would have missed out on this great life I have now. I feel sad for that girl I used to be. But there are still girls out there where I was and I’ve got to help them get to where I am today. I want them to keep living and fighting and hold onto hope. Because hope is out there.
I actually have hope tattooed more than once on my body. One of my favorite tattoos is my large rib cage one. It’s a pine tree silhouette with water color splash behind and a Latin saying at top “while there is life there is hope.” If you are still alive, there is hope for you. Do not quit. Do not give up.
It’s hard when you feel hopeless to believe a strangers words. It’s hard to grab for something that seems like a mirage. I get it. Even now with my new position coming I keep thinking it’s impossible. They’re going to change their minds. I’ll ruin it. And then when my NBF said she’s already been talking to her boss about adjusting my hours so I can attend the art day program for people with disabilities like mine—something I’d given up hoping for because I wanted it so badly that it was easier not to want it—I still don’t allow myself to think it could happen. And I still think I will screw this new position up so I fixate and obsess and ask 100 questions (literally probably asked close to that yesterday. My NBF teases me sometimes because one of my most common phrases is “I have a question” or usually just “question please” which she knows is me asking to ask a question; I ask so I know I have someone’s attention. I can’t tell so I need them to say yes or hold on or wait. I can’t read other cues to know.)
Hope is tricky. If I can’t picture it, it feels impossible. And right now I can’t picture how I can succeed in this new position. And I can’t see how I can attend the day program when I don’t drive and am still waiting for a case worker and services. I am in darkness. But ten years ago I couldn’t see the life I have now. I didn’t believe someone like my NBF was possible. A person who loves every part of me. Who allows me to invade personal space and encourages my natural behavior and teaches me without being unkind. Who stays even after meltdowns. And a job where the head manager doesn’t just supports me but fights for me to have a safe space. Who forces a training less than a week after our discussion to correct and educate about me and my community. This life exists. I remember a time I couldn’t picture a life that didn’t involve physical pain and blood. And that’s so terrible to remember.
So if my life can transform once, it can transform 1000 times and so can yours. Hope isn’t light. Hoping for something doesn’t turn on the lights and make sense of anything. Hope is the crazy strength to keep going even in the darkness and storms. Hope is strength. Hope is freeing. Hope removes chains of fear and anxiety that keep us in one place. Hope is freedom.
Let yourself be free. Keeping hoping. I will too.
Now I’m going to try to sleep. Oh yeah, but here’s my new glasses!!
(The last picture is me trying out makeup lol. Poor Piggie looks so worn. I love her so much!)
I got up at 5 today even though it’s Saturday. I came to my workspace in the garage to start working on my next round of Christmas gifts: more wood boxes for my friends who are more like family at work including my NBFs (non biological family) daughter who I tell people is my sister.
Recently I taught myself wood burning to make a ukulele for my NBFs son. For Christmas I made a wood pineapple for him. I posted a picture of it already but I’ll include it now.
For the boxes I draw the design and then I’ll burn it. The bamboo wood is so pretty on these I think I’ll just seal them and not stain it. However I’ll also be making wood crosses for my family and for my NBFs husband and the pastor at work I love. Pastor Karen. I bought a group of 10 of us from work matching autism awareness shirts from Etsy too that say “Love needs no words” and beneath that “autism awareness.” I am bad at money management. Once I get set up with services someone will probably take over my finances but for now I do it myself and always spend it. I get ideas like making these boxes and want to do it so badly I can’t wait. Or when I was anxious about my new position last night I bought more dress pants worried I won’t have enough or that something will happen to the others.
Now I’m finishing watching the movie “The Little Prince” and taking a break from the boxes as I have to prepare to transition now to wood burning now that I’ve drawn the designs. Transitions are tricky for me. The Little Prince is my favorite book and I have I think four different Little Prince tattoos. I love that book and the cartoon movie I enjoy too. I used to watch it on repeat.
Anyway, my thoughts were wandering so I decided to write them out and then I’ll start to burn the boxes or draw on the crosses. I think I might draw and then later do burning. Wood burning is a slower more careful art. You can’t erase your mistakes!! And I’m a perfectionist.
So my thoughts were circulating how my NBF is constantly worried about people taking advantage of me. It happens all the time but it upsets her much more than it upsets me. I’m a people pleaser and love to give and make people happy and want people to like me. I have no attachment to money. And I am also very literal and take people at face value. If someone is being nice to me I think we’re friends. That was actually a question my doctor asked when doing the very in-depth assessment to diagnose me. She asked what makes someone my friend or something like that. I thought about it and said “if they’re nice to me then they’re my friend.” People who care about me love that it’s so simple to me but worry. I see it in their faces. I just don’t understand it.
It does create problems for me because I live by rules and justice and there are rules friends follow. Like you don’t hurt your friends. You help your friends. You are always kind to your friends. So when I think someone is my friend because they’re nice to me but then they break these rules it’s confusing. And so many people I thought were my friends and cared about me hurt me very badly. It turns out they never liked me. Or that they just wanted something from me. What my NBF is very vocally concerned about people constantly taking advantage of is my artistic abilities and also spending money. But with my art I don’t sell it. I won’t. Money is complicated and when you sell something you allow demands and expectations and all that stuff. I don’t want that. My art is freedom and my voice. I already get told what to do and have demands and expectations and struggle to speak. My art is freedom. I won’t let money change that.
However as my art becomes more well known as well as my generosity I have people making demands for my art. People do not understand my art. They don’t understand where is takes me and when they demand it they only hear their own voice.
Often times I will do it, but I get overwhelmed by all I take on. And when people start to pressure me to do certain projects I get really upset. I guess my NBF is right to get upset because she’s the one I go to when I’m upset because she’s my safe person. My worst meltdowns happen with her and my deepest secrets are told to her. If I’m scared how someone will react or if someone has done something wrong, I go to her because she’s safe. She will get really angry for me but she never lets me see that anger which I need. I need to feel safe and reassured. My biological mom is a very angry person and I would get yelled at and there’d be cussing and mean and all the things I hate and really hurt me. My NBF is different.
But I’m so used to people taking advantage of me and when I do what they want they stay happy and I like that. I want to help people. But it gets confusing and so I’ll share with you what I was thinking about that sparked this conversation.
There’s a girl at work who loves my art. She asked me for something for her daughter several months ago and I said yes and did it and she loved it. She keeps asking for me. I did a second piece for her. But still she wants more. I have been so busy making Christmas gifts which is what I want to do and is just as much for myself as for my loved ones who do not demand it and my NBF actually told me not to for her and her family because of how much I’ve done (I made 175 Christmas cards with goodie bags for residents and staff and family already and will pass them out next week). But I don’t listen when I there is something I really want to do.
Anyway, this girl. She’s the other housekeeper for my building. We work in the assisted living section. There’s 3 floors. I clean all of 2 and half of one including the main lobby. I’m very good at my job. My residents and other staff will struggle when I switch to my new position (and I will too) over the quality. There is a very high expectation and standard set now. The girl I’m talking about cleans the other half. This is good because I don’t work well in a team. I’m VERY controlling in my environment. This is already starting to cause problems in my new position but I’m just my NBFs assistant so it’s just me and her mostly and she knows me and is used to this. She knows how I am and knows how to redirect me if I start to get too fixated on something.
Anyway, most people aren’t and don’t understand my behavior and it’s been the biggest reason I’ve struggled so much in other jobs. I like rules and structure and repetition. When people break rules or do things in what I feel is the wrong way or a very inefficient way, I get upset.
So this girl I don’t interact with a lot but I am pretty possessive over the whole building and the residents. I love them so much and want them taken care of to the highest quality and get upset when areas aren’t as clean as mine and stuff like that. Luckily my NBF also has high expectations so we’re actually very well matched here. And people will say constantly I’m the best housekeeper. People from all departments notice it. I am not one to be on my phone at work (some days I don’t even bring it). I don’t socialize much though I do talk to people more now. When I first started I never talked to people. My NBF and I first communicated through written letters.
I’m so off track. I can’t filter information. This other housekeeper though. She’s nice to me when I make art or when she wants art so I think we’re friends but all other time she’s not. And because I started to run into issues with a few staff in management and HR not understanding my autism and autistic behavior the head manager I talked to had my NBF do a training this week for all management and HR. Prior to my NBF giving the meeting, she wanted to run it by me first. She asked my permission to talk about me specifically even though the meeting would largely address all people with disabilities in the workplace. I said yes because I trusted her and I’m great with people know I’m autistic.
I have a hard time following along when someone is talking at me which she knows so I don’t actually know most of what she talked about or even what she said about me but she was starting her meeting my addressing stereotypes and inappropriate speech. I have heard people use the R word so she was going to talk about that and then she was going to address the Rain Man stereotype and my NBF current assistant doesn’t know Rain Man and interrupted to ask and my NBF explained it’s a movie with a man with autism who lived in an institution and that is what triggered a thought as my NBF explained to her current assistant how people with disabilities used to all be sent away and hidden.
And then I interrupted because of the thought and I just said it to comment on the conversation and I said how that other housekeeper said to me a couple weeks ago I should feel lucky and blessed I wasn’t in an institution because that’s where most people with my disability go. My NBF suddenly lost track of her meeting and was like what?! She was much more upset than me. I wasn’t. I told her I did feel upset when the girl first said it but things like this happen so much it’s just normal.
I explained I’d been braiding a friends hair who is a caregiver. I’m very good at overbraiding hair even my own so this friend and sometimes my NBF assistant will ask me to braid their hair. It’s another thing I’m good at and enjoy doing. My friend was working on the third floor that day so I was braiding her hair at a table and that girl was also sitting down on her phone there too taking a break. I was talking to my friend and I forget what unkind thing my mom had done that weekend but I was saying it to her and that is when that girl told me what she did. She said she used to work with people with disabilities in facilities and their families would never come so she’d spend extra time with them. For thanksgiving she volunteered at a homeless shelter. But her voice always sounds negative and abrasive and it causes so much conflict. Good deeds don’t make you a good person but I don’t think she’s a bad person but she’s not a nice person and so it’s all really confusing to me.
I told my NBF all that and she was completely shocked this girl said that to me even after I told her the story and every time she asked “are you serious” I replied yes. I don’t know why people ask that over and over. I tell the truth. I don’t joke. I’m completely literal. I know she couldn’t believe it and maybe it’s because I said it so casually but like I said, things like this happen ALL the time. I’m always getting dumb and insensitive comments. People comment on my functioning level all the time. Which is dumb and hypocritical. I can’t go around to others saying “you must be a very high functioning person” or “I never could tell you were normal!” (Though now I think when someone tells me I’m very high functioning I’m going to reply with a smile “Thanks! You seem very high functioning too for someone without autism,” and see what happens. I’ll report back.)
I guess that conversation ended up in her training. I was talking to my nurse friend yesterday who is the director of nursing and who I love and she loves me and she knows I love to smell things and so she gave me a whole box of bath and body works sprays and lotions once. It was the best gift ever!! She said when my NBF said that (and I was like “oh, she told you guys that?” And started to giggle because I found it silly because to me it really was no big deal) my nurse friend was like “yeah. I wanted to throat punch whoever said it!” And she reassured me she is always here for me and if any nurse says anything or caregiver to tell her and she will take care of it. There is a very strong and powerful group who do protect me and support me at work. So I am very safe and my job is very secure which is a blessing and is new to me. Most jobs management level do not stand up for me or support me because I’m a liability and because I’m replaceable. This job does not view me like that and it’s taken me 30 years to find but I love it there.
So anyway, that girl. Later that day though yesterday she was back to asking me to make something for her daughter. A little wood burn ornament. I’m about to make it real quick. I don’t hold grudges either. Someone can be the meanest person to me but as soon as they start acting nice again they’re my friend again and I like them. I don’t really dislike anyone but usually the mean people and the bullies I am scared of. They’re unpredictable and confusing. I always try to be nice and a good friend so I’m confused when people are mean.
I don’t get people taking advantage of others. I’m not sure I even understand the concept. If someone gives to me I always give back to make sure it’s balanced. But I don’t give with expectations because that’s not the right way to give so I don’t mind if people don’t do anything back. I just don’t express myself well expect through art and I used to make people mad and called ungrateful because I didn’t show it. And it was upsetting because I am a very grateful person. So I found through my art I can express it. I want people to know.
And I’ve on multiple occasions given homeless all my money. I got pregnant from unwanted sex. I’ve been completely taken aback when someone I thought was my friend publicly told people I faked my autism. I didn’t actually really know her but she had a 3 year old autistic son and I was nothing like him (duh) and she only saw me in superficial settings and again I don’t fit stereotypes for autism.
I also don’t understand why it upsets people when I am taken advantage of. I love my Bible and read it all the time and it says God will take care of it. He’ll take care of the people who hurt the innocent and pure. So I don’t have to worry about what to do when someone hurts me or change at all because God will take care of it. And I don’t really know what to do when it happens. I usually just ignore it. I don’t even tell. Sometimes because I’m embarrassed because I feel silly I didn’t know it was going to happen. And sometimes because it’s just so common.
And I can’t tell the bullies from the friends. To me if someone is nice they are friend and all nice people look and sound the same. When a bully is nice and a friend is nice it feels the exact same. I cannot tell the difference. I do keep my distance though and my NBF said she was going to teach in her meeting how people with disabilities because of this often have one person they kind of obsess over and cling too. It’s their person. And it’s logical. In a terrifying scary world that’s unpredictable, when you find someone who’s safe who you trust you cling to them. Most people in my life have not understood this part of disabilities and she is right because I remember working with other adults with disabilities and often times at work I was the person or this other lady who’d been there forever. And at home there was someone else. It’s not inappropriate. It’s logical. I was so glad she was teaching others on that. My NBF is my person. But even her I don’t think to tell when people take advantage of me if I even recognize it.
We were talking yesterday about my new position as her assistant and she said she’s worried people will take advantage of me because I will have more freedom in this new position and be able to do a lot more and she’s worried people will try to get me to do other peoples jobs like cleaning and caregiving and she doesn’t want that because I’m in activities now. I told her I didn’t think I’d know if someone was taking advantage of me and she said “I know but I will.” She will be watching.
The people around me are another reason I don’t have to worry about people taking advantage of me. If someone hurts me, I have a pack of people who will protect me and keep me safe. I feel safe and secure and that is the biggest blessing in the world.
Okay friends. Now I get to go get ready and get new glasses!! I’m so excited. I have some pictures from their website picked out to try on that I like.
There’s a few others so I’ll post later what I picked. The last pair most closely resembles the pair I broke only they were black. But again, I’m going for a more artsy look and fashionable stylish one to match my new job and outfits!!
I hope the people are nice to me at the place. I think I’m bringing my stuffed bunny Pluto. He’s been going everywhere with me. I’d like to bring my dog Buddy but I feel anxious thinking about not having Pluto. And again Piggie seems so fragile lately. I love her so much. So Pluto is coming.
People are so weird about my stuffed animals though. They seem uncomfortable and unsure how to act. People are so silly. Pluto helps me feel calm in busy scary places. Pluto is my friend. Friends help each other. Friends are safe. That is what Pluto is and does. My stuffed animals are my friends. Don’t make it weird.
Last night I fixated on my new job position and slept very little. This morning at work prior to my NBF (non biological family who’s assistant I’m about to become if you didn’t read last post and I’m going to assume you didn’t) arrived I got overwhelmed by it all and cried while making todays dry erase board: (The trivia question was what I did yesterday)
What I want people to know when they see me cry from overload is I’m okay and crying helps. If you see me crying it’s okay to stay close by but talking and touching will make it worse. It’s overload. It’s overwhelm. I just need a break from my senses and a little quiet and art helps a ton too. I know by now what to do usually so as long as it’s just a calm crying I’m okay and don’t need help calming my body. These meltdowns I can’t control the crying or how overwhelmed I am by my senses but I am I’m control of my body. I can’t easily communicate at this time and there’s really nothing anyone can do. I just need quiet and a minute to reset. These will always happen to me because these happen from a result of my hyperactive senses. It is what it is. I used to be embarrassed by it but now I just know fighting it or hiding it makes it worse. I know what to do and it’s okay.
When my NBF got there I started to get anxious. I suffer from bad anxiety like most autistic people. Because I’m about to switch positions I’m starting to hyper fixate on this change. Hyper fixations are a total autistic thing but I can get stuck when I’m anxious. I did feel embarrassed because I got snapped at by the girl I’m replacing. I have a notebook. I write my questions. I am obsessing with every aspect of the change. My NBF answered a lot of my questions but she was leaving early today because she works this weekend and said we’d answer more next week. I have 13 days until the change anyway. I have a hard time waiting. When I get stuck I feel like it’s the most important thing in the world. When I get an idea or start to fixate on something, it’s all I can think about and focus on. It’s all I want to talk about and if it’s something I want to do I often will do it even if it means spending money I don’t have or making unsafe choices. It’s going to be something we will work on. It is something we work on. A month ago I was stuck on needing dirt to repot the plants at work and needing the indoor garden to look nicer. I didn’t listen to my NBF and spent my own money to buy more plants because I didn’t want to wait for her to use the work card to get them.
I also have hyper focus. When I’m in a task or fixating on something I become very unaware of everything else. When I make art I will work for hours unaware of anything and have worked for 8 hours with no break to eat or toilet. I was home alone that day. Today I was so hyper focused and fixated on this switch that I forgot I needed to go to the bathroom…until I sneezed. Luckily it wasn’t that bad.
I LOVE routine and repetition. Especially with my daily life. I do the same things in the same order every day. When I don’t as far as getting ready or working I will miss steps. Two days ago my belly was upset so I went to the bathroom before brushing my teeth which is flip flop and it wasn’t until I was at work I realized I forgot. I panicked. Luckily one of my residents I visit every morning had an extra toothbrush and gave it to me and let me use a little toothpaste. I was so anxious that morning when I first went in her room because of it.
I don’t know why certain things suddenly feel so important. I will interrupt at really inappropriate moments and get really upset about it. I panic. It’s so consuming. I don’t really understand it. Maybe one day I will. Today all I can do is tell you about it happening.
So continuing my hyper fixation on work, I’m going to talk about the second topic: fashion!
So this is a curious thing for me. I both equally love fashion and also don’t care at all. I just bought several new outfits for my new position. Currently I wear black sweat pants (nice in place of scrubs because scrubs are what I’m supposed to wear but are a sensory nightmare for me because of texture) and a gray polo. On Friday’s I wear jeans (a recent change after finding pull up stretchy jeans which are very sensory friendly and allow me to wiggle and sit in the odd positions I love) and a work t shirt. In my new position I can’t wear sweatpants and still can only wear jeans on Friday. So I needed new clothes. I didn’t own dress pants and only had graphic t shirts I’m unsure are allowed (it’s on the list to ask next time I get to go back to asking).
I used to copy peoples fashion in my life I look up to. Sometimes I still do. Either on purpose or not. I bought black face masks to match my NBF. I bought fake uggs to also match her. She’s my person so she’s the one I tend to copy most. Her boss and I are also close and she is the best dressed person I’ve ever met! She’s one boss away from the top and always matches from top to high heel bottom. Her nails always look perfect and her hair and makeup are model level. My NBF is a more casual version but still beautiful inside and out even though she isn’t big on being complimented for physical beauty.
But fashion is communication. I like that part of it. So I looked online to decide who I wanted to be. Who am I? Sometimes I dress for passions. When I was really into space all I would wear was NASA and if anyone said anything about it I caught them in a whole space conversation. I still love space but I donated all my clothes. For a while recently it was marvel. I love marvel superheroes (who else is obsessed with Hawkeye series already??? I’m SO into these series Disney + is doing now). But I donated my marvel stuff too. I don’t like to hold onto clothes when the obsession eases. I don’t have a lot of space for clothes storage. Right now my wardrobe is most autism awareness stuff. I like a good graphic tshirt. However I don’t think I can wear them to work for my new position. So I had to decide how to dress.
I am an artist. I wanted to look artsy. I also wanted to look important like my NBFs boss. I wanted to look slender and beautiful like my NBF. And our third core M always looks so nice too. I wanted to fit into the group. Stylish and pretty.
Many autistic people do not care at all I have read. And like I said, this can be true for me. I have no problems wearing shorts over pants in public and have because the shorts were NASA boxers and I was so happy to have them and wanted people to see them. So for me, the outfits are a form of art and dress up. I will say clothes shopping is VERY difficult and I’m not sure how many of these pieces I will actually wear consistently. I am pleased with the pants thank goodness. But I bought a button up shirt for looks alone not taking into account how much I struggle with buttons. We’ll see how often I wear it. I’m unsure I like the texture of another shirt.
So for me clothes need to fit a certain way. They need to be form fitting but not too tight. They have to stretch. My pants and shirts. I don’t like winter jackets and don’t even own one because I find them too restrictive. I only wear sports bras. I wear high waisted underwear. I cannot stand lace or sequins. Zippers are a problem on clothes. There’s just a lot of factors when clothes shopping. And since I buy on Amazon mostly because I’m overwhelmed in stores I obsess over reviews but I have bought so many things and donated immediately. I don’t have the skills and get too overwhelmed to return so I waste a lot of money here and do feel bad for it. I don’t have good money management skills.
Anyway, I’m excited for my new outfits and wanted to share some that came in!! I have a few more things coming and do wang to make a Target run for one more dress.
Oh yeah, I have lots of tattoos. I’m up to about 14 I think. Many were done in someone’s living room. I drew a lot of them myself including the airplane in my arm in the last picture. I have a lot of scarring on my body too from a decade of self injury. It’s been almost a decade more since I last self cut. I do have bruising not visible currently from biting and I had minor abrasions from scratching but again meltdowns when I leave marks don’t often happen anymore. So I’m glad for that.
I finally get my glasses replaced tomorrow morning. I cannot wait. I’ll post again and include pictures. I’m going to go start getting more ideas for activities to do with my residents. I will do art every Thursday morning. I want to start doing chair yoga with them at some point too in the evenings. And crafts.
Now I’m just in sweats and an oversized t shirt which I love. Pluto has been my friend coming to work with me lately. Piggie is my bestest friend but she’s so old I’m worried she’ll be hurt so she’s been at home lately with my other friends. These are my stuffed animals. I love them so much. Pluto is a bunny. I love the Jellycat brand of stuffed animals. That’s what Pluto is. They’re expensive but my favorite. Pluto actually has singe marks from when I first bought him and accidentally almost caught our backyard on fire. I had an unsupervised bonfire but luckily my roommate came fast and helped but I felt so guilty for hurting Pluto and after that we agreed I will not do bonfires by myself.
This cat is Mattie. She usually hates me so I love this picture but I was actually really scared she was going to bite me. I’m going to watch the Thundermans with my daughter now. We love that show. It’s why I bought Paramount +.