I have a very short but important thing to share. I can’t understand faces. One day I saw a person and decided I was going to draw them. But as soon as I look away I did not remember what they look like. I did not think of it much at the time. Later a friend (also with autism but more capable of some things) ran up to me and hugged me and my reflexes was to hit. After a few seconds I understood it was my friend, and explain I did not know that. They show me of prosopagnosia- the inability to see faces. I was think on this for a long time and it made me understand some things like why I could not know some pictures was of me. It’s always good to understand what is different for me so that I don’t have to feel bad and so I can help new people in my life work with me. Now I can tell program why I need see they tags or friends why I don’t wave if I see them somewhere different- I don’t understand that I see them. I learn to understand people by other things like where they are or certain things they wear or stuff. But it can take a long time to learn how to know a person, and maybe take a few minutes when see them to understand it’s them especially if something change.
I had a success today. It’s not a big kind to most but to me it is. I was able to get summer shoes. And I did not have any meltdown, even stay at a 3 the whole time. I never had summer shoes I mean sandal I learned that word today on Dynavox. It was hard to find a kind that was comfortable. It took 3 stores (all my 1st time there). But that ok because usual it take weeks or months to find shoes I can wear and a few meltdowns to. It helped to have Allie, a Starbucks, and a friend. And that I learn to ask for a different store. Here is a picture of what I mean by 3
I am writing this so people can understand me a little better and what I have been through so that they may think about it when they interact with other people called Autism. For those who think I’m high functioning because I talk of independence, sorry no I am not. I talk of independence because I due to abuse and stuff I was homeless a lot , and because of that I don’t have the help others had as child or adult. Every time I go to hospital they want to put me in a home- but I don’t want to. I still head bang and bite. I am nonverbal and am incontinence. I love Disney and Rugrats. I have lots of Minions and Paw Patrol and stuff animals. I can’t always make a bowl of cereal if I can tell I need to eat and I need Allie help to not run into traffic. But I am most happy with my life. This is the only life I know. I’m not sad for a life I didn’t have, even if I want stuff sometimes. My iPad air 2 helps me lots and so do my Dynavox with schedule and timers and more.
Do I have less behavior than I did before as child? Yes. But not because I got better or cured but because my environment is better, for somethings I can use Dynavox, but mostly I learned to survive. To survive you have to hide. And if anyone see you then you have to nod and agree and let then do anything they want. At 25 for the first time I hear (on Kreed world) cooperation not compliance. After learning what it means I like it but most people don’t do that. Behavior was and still can be the only way my body can handle stuff and the way I can communicate. It’s not in my control. On my worst days I can’t even hide before it happens. But I learn to survive so good that me did not be seen unless me could be okay. I’m just now trying to let myself be me again and not scared of others.
Ok so what do I deal with besides Autism? PTSD as you can see by the above. I struggle with that. I don’t think I struggle with autism itself but only some things of it and mostly I struggle with society. But PTSD is hard, I get so scare to even think for myself. I have nightmares. I have flashbacks that are like nightmare but you are awake. Most of it is from obvious abuse and taken advantage of. But some of it is from people and programs who may have mean well to teach me better. I have been restrained over 6 hours because I needed to brush my teeth. In residential and in most hospitals I learn that to show any communication mean I was going be in trouble and hurt (because they didn’t understand). So now my reflexes is to be quiet and to protect myself if am touched.
Sensory processing issue are hard for me. I can’t understand lots of noise or things I see. I always always need music, it’s been the single most important thing all my life, and also sunglasses. Well now I have regular glasses but they are dark like sunglasses. We didn’t know I need them until was adult. People are hard for me because I have hard time understanding what they say and they are always moving to. If I focus on something else with my senses so I can understand them they get upset because I’m not paying attention. I am hard with textures, I keep a stuff animal and other things for my hands to calm. And always have stuff to chew, bite, suck especially as they don’t like me use my fingers.
I also have cerebral palsy and juvenile arthritis. My body doesn’t always work. Sometimes my hand goes crazy not like stimming where it has more rhythm and feel good, but just crazy. And sometimes my legs forget how to move. Sometimes my eyes can’t focus. I drop stuff a lot. I feel funny a lot and a friend eventually explain to me that I’m in pain even though I don’t exactly understand. That sounds different but it’s true if I feel funny I could be hungry or have a headache or arthritis is bad or I’m hot or anything. And it’s hard understand because if I am in pain most the time I can’t tell you how much because I have nothing to compare to understand how different for me or others. And because my brain forgets most stuff fast, I can mostly just understand the present moment and not remember any different time to compare. Do you know what’s it like to tell your legs to move but they don’t? To be in wheelchair sometimes or stuck in bed because you’re body don’t listen? For everything even sitting and holding something to eat to be hard but you do it because that’s all you know and because if you don’t people will be mean. To feel funny but not understand or be able tell anyone. This is my life, my normal and until recently I wasn’t even know it not same for everyone.
I have OCD. Some parts are obvious like I need things a certain way and I’m obsessed with numbers and I’m really clean like sometimes I need 5 showers a day clean. The worst part of it you can’t see where my thinking is stuck. I may think about a thing good or bad for days or months. I get obsessed with a food or toy or movie. I have to do something or by something and I can’t help it. Now this is hard because sometimes I really like a thing and sometimes I don’t but my brain needs it. And it’s hard to explain the difference, and more hard when close like I love minions but I don’t like bed spreads but when I was obsessed I got one because it had minions. And then there a thing called intrusive think. It’s a think in my head that I don’t want but not hallucinating. Most people have this once in a while. But for me it may not stop. Now most people with this know they don’t mean it, but I can get confused and sometimes act out because all I want is it to stop.
I am transgender. Now that’s not a thing people would expect. They don’t think I can understand that to say it. And they were almost but not enough right. Until I was 17 I didn’t understand that I wasn’t a boy. I really think I was. At 17 I was in residential still and one day I finally understood I was suppose to be a girl. But I didn’t feel like a girl. After residential I got in a shelter and a friend there help me understand. I had a therapist (for over 5years) who talk with me about a lot and help me understand trans and other stuff to like ocd and autism. And my doctors agreed because of some my medical test look male. I forgot that means I am a type of intersex, but people know the word transgender.
I also have other stuff like seizures, my blood sugar is funny, I have stomach issues, and lots of allergies, and heart problems and lung problems (some related to CP), and some other stuff. They can make me have behaviors even if I don’t understand. People make it worse, if I am alone I will lay down. But people always want to talk and move and do stuff and they don’t understand I need to be alone. I’m trying to learn to say I need a break. Yes I have meltdown alone and you may find me banging my head or biting or something, but I do that less alone. Because I can keep my senses ok in my own space, and I don’t do stuff unexpected. If I need to go to the store I plan it out- and it can take hours or weeks to do, but other people will just say on the spot to go and I get so confused about what is going on.
The other thing about is because of all this stuff I need things a certain way. I have to understand what is happening. I need things to be in order and everything where it should be. I do my best with help to stay on a schedule for everything even eating and going store and park. I don’t eat a lot of different food (mostly ensure type drinks and gfcf pancakes and sweet potatoes). I like things the same. I love my world of color and music and order and away from people sensory. It’s not that I don’t want to ever do anything new or ever be around people but that I need support. I need time to prepare. I need it explained in detail with pictures so that I can process. If you tell me we’re going to the store I need to know yesterday, and how long and what store and what do we need and what else. It’s not because I want to be difficult. But I get very confused. I don’t always recognize the street I live on (thankfully my service dog and Google maps do). And I need to prepare for sensory stuff and practice the movements for my body. I need to really understand or my body and brain may have a panic attack or anxiety attack or shutdown to protect me from to much stimulation physical and mental. Sometimes it looks like rocking or biting and other times it looks like me way to quiet or acting confused. And of course sometimes those mean I had a seizure.
The moral of the story is that I’m complex. There’s a whole lot going on inside me that you can’t see. I don’t like when people say I won’t do something when I am trying my best but I can’t. Just because you think it’s a easy task doesn’t mean I do. Little things like eating or understand what you say or getting out of bed can be super difficult for me. Don’t look at behavior as being bad, look at it as communication. My body is telling you stuff that I can’t. It can tell you about a seizure and about CP and more even though I may not be able to understand or find words to tell you. A final note my abuse and stuff both on purpose and not have helped me with some stuff but at a high cost. I don’t understand when I can say no or when a person is hurt me on purpose and so I let them because I trust if they say they love me or that it’s to help me. I would be better if I could have more behavior that helps people understand what is wrong instead of me being so quiet until I can’t move or completely lose control. To this day I don’t always get the medical help I need because I just hide and because I was not teach of Doctor stuff so sometimes I wind up in the hospital really sick because I didn’t understand. Nobody wants to see me, to deal with meltdowns and shutdowns. They want to pretend that because they only see me when I can leave the house smiling that I’m great, and I let them because I don’t want to be homeless or put away again. Instead of helping me mostly they made me worse, I have nightmares and have been rape because I was afraid to express no. I agreed to a lot of stuff that I didn’t understand or like because all I knew was to do what others wanted so that I would not be hurt, by being homeless or abused or other. And you should always listen to a person with differences about how they are- we live with us 24/7 trying to make us feel better. The final think is remembered Kreeds world #cooperation not compliance and #nolimits.
P.s I may try to type more by using my Dynavox with the pictures to help, but more short since won’t be take months to get ready.
I have a great service dog named Allie Rice. Here’s some stuff that we want to share .
- Patience . She may need to potty at 07:30 but me an struggle so so not outside until 09:00. She doesn’t bark at me or pull me. She may “ask” a few times (by go to door) or check with me if needs help (she comes up to see if need her help stand up), but she not impatient. She understands I’m doing my best y we will get there. And if she don’t come at first when me call (with a noise, not say her name) me will wait a few seconds and try again or go by her side if important.
- Keep trying. Sometimes I have meltdowns and may self harm, she will keep coming up to distract and calm me until it works. Sometimes I can’t get up and for almost a hour she will keep help me stand. Sometimes she can’t ignore the rabbit and me will keep call her to keep on track.
- It’s the little things. She is so happy to go outside and I love it. I’m so excited to see her smile and she do it when me needs it most or just because. I give her special treats because that all it takes to make her day better. And she will hug me or lick mine hand for the same.
- It’s awesome sauce to be yourself. She’s a dog, she likes to chase squirrels. And I let her because it makes her happy. I’m me and I like to swing and she will be sit happy while me swing. And I “stim” when I walk and she is still happy and not trying to stop me because it looks funny. She is happy I’m happy and that’s enough for us. *Oh she not chase them when on leash. *
- Pay attention. I can’t read her mind, and I don’t think she can read mine. But we are both good at knowing what the other needs. We pay attention. She can tell I need to slow down because she hears my heart rate, and she can tell when somethings is wrong with me even upset because I must do something different. And I can tell if she needs potty by her go to door and by thinking of the time (we try keep routine). And if she bark because a stranger or to get mine attention (to calm down). And she can tell if it’s ok to ask for all the belly rubs or if should leave me alone.
- Schedule is awesome sauce. She knows she will eat and it’s yummy , and when it’s time to go outside. Which helps her know if me needs help (like if I’m not up yet). I know when it’s time to calm down for bed because we follow a routine.
- Unconditional love. It’s not easy on us. We are about 2 feet away 24/7. Sometimes she really wants to run and me just can’t deal with the outside. Sometimes I can’t understand why she wants to go a certain way. But we don’t get mad, we still find other things to make us both smile.
- Respect. Sometimes I let her lead where we walk even if I don’t want to, and sometimes she has to follow me. It’s not her or my fault that’s she’s a dog and I’m “disabled”. We don’t always understand each other. But we work together the best we can and always look for a way to make the other smile. We respect that we both have needs and feeling even if can’t understand. I don’t understand why she needs to roll in dirt and she don’t understand why I need to rock or shout or bang mine hands but we don’t care because we can respect we are different.
- Forgive. Sometimes she scratches me or I step on her. But we don’t get upset. We still hug and kiss the same.