The spectrum of autism spectrum explained 

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

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

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Today’s adventure and mini rant

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

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

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

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

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

Disability without a family 

I see this thing a lot that says autism doesn’t come with instructions it comes with a family that doesn’t give up. But what nobody talks about is that there are children with autism that don’t has loving supportive understanding families. There are those like me who grew up abused and or homeless. Where you don’t get food much less treatment. Where you may not go to school. And when you do all they can see is behaviors. And then eventually you get put in a residential or psychiatric hospital or both or other institutions. And they may send you back to the abuse after they discharge you or maybe you’ll be sent to a foster home or a group home and may be abused again by strangers who just want the money for having you. People who know the basics of my story are surprised I’m alive. Actually pretty much every cop and doctor type person who has ever seen me is surprised. I don’t know how me survive me just do. Just lucky maybe. Weeks without food doesn’t kill me. I’ve walked into traffic, into water and had to be rescued from drowning. When me was 16 I’m was less than 100lbs with almost no understanding of language at all. I’m was in a residential that now is closed because kids has died and been raped there. In strange ways my autism has saved me. It kept me safe in my world not really understanding everything happening. It had me focused on all the beautiful things like pretty trees and stars. My behaviors and meltdowns from overstimulation kept me safe sometimes. And because of my sensory differences me was always in quiet dark places away from people which kept me safe lots of times. There was good people at the residential. A lady who helped try to communicate with me. A guy who let me do whatever I needed as long as it didn’t hurt anyone.   After the residential I’m was homeless again. Random people came into my life. Some helped me and made sure me ate and had clothes, others hurt me and did bad things, many did both. Eventually me met my old caregiver. Was he perfect? No. But he did more good than bad. He work with me for years on communication and self care. He learned of my seizures and had me see doctors and stuff. He got me important things like ssi and food stamps and eventually housing. 

 And then he was gone. And there was no one. It’s been a little over 2 years that me hasn’t had a full time caregiver. And that me has been type this blog thingy. And in that 2 years Me has learned how much Me needed him. And with the MS I’ve needed him more than ever. We didn’t know when he left that me had it, but me did. Not even the doctors had put my symptoms together even as he was teaching me how to say something hurt. Everything got blamed on autism. Even my cerebral palsy. Well now me know it was wrong. But here me am alone. My interest keeps me happy most the time. Mostly me am like a little kid with my Disney movies and toys. I stim the best me can, me has meltdowns and shutdowns here alone. But me do things. Sometimes me eats or takes bath. The other day me spend 3 hours getting dressed by myself and went to build a bear. But it’s hard both the mental and physical parts from understanding me needs to eat to thinking all the steps to getting my body listening to holding stuff (me do has tools to help hold stuff). Even open the fridge is more hard than thinks. 

   Most people you see that has such physical disability has family and friends that help. They live with people. The same for people with neurological differences like mine. But not me. Here me am in this apartment doing things and not doing things. Nobody to help me but nobody to judge me or hurt me or make things worse by trigger my ptsd or messing up my sensory needs. Some days when me thinks on it me am proud of me for surviving and doing things. Other days Me has all the feelings and wonders why I don’t have a family to help me. Most days I’m to much autistic to think of anything that isn’t related to my interest or routines or sensory things; or to anxiety thinks of what to do and how to do it. My autism is a neurological difference, a important part of me am. It’s what makes me Me, happy and creative and determined and always seeing the best. Even my cp is more of a difference because I’ve always had it. My MS is a disability it takes things away from me and makes me not able do things me love. 

Anyway the point is not everyone who has autism or other disabilities no matter how severe is lucky and has a loving understanding supporting family. Some of us are or was homeless and or abused and are just surviving. And that we are surviving because of our differences and disabilities just as much as in spite of them. Being different doesn’t mean you get a good family. Honestly because of how hard it can be taking care of us with the most and most severe disabilities we’re prolly more likely to be hurt by those who should love and care for us, like all these sad stories of kids killed by they parents. My mamá try to kill me and me am glad it not worked. Mine life isn’t easy but there is love and happiness not just pain and nobody should take that away from me or anyone else no matter how different we are. Even when we can’t talk and may always be stimming and running and other stuff and even when we can’t barely move our own bodies. 

When my body can’t stim

I know me write that funny. But it’s for reason. I’m not talking of being told not to stim. Or making yourself not. I’m talking of when my body is so weak it can’t. Stimming is a big part of how me interact with the world. It’s a way of communication. And more important it’s a way to keep me from overwhelming and shutdowns and meltdowns. I don’t stim on purpose most the time. If me thinks on it or gets me reminded I’m may work with a stim like moving my finger for a chew tube. But it’s mostly natural and automatic. Over the last few months mine ms (multiple sclerosis) has be get more bad so my body gets tired and more weak and hurt more easy. The 1st stim to get hard was rocking. I have always rock lots. Not being able to rock alone or in a chair is really hard. It helped me focus and without it I’m has more hard time understanding spoken words and process what me see. It also was my best way to calm down feelings. Without it my feelings get so big and scary. I’m do vocal stim lots more now that me can’t rock but it’s not as good. Me bites more and headbang more. I don’t mean to but my body has to. Sensory stuff is harder. Besides rocking now me can’t always hand flap or even cover my ears. And chewing is way harder. Me used chew all the time but now after less than hour my head can’t no more. At my worst I’m a rag doll. And all these things hurt my brain and ears and eyes and skin and feelings and me can’t do anything. My body just kinda lays there. Maybe I can barely move my head or a finger or make a small noise. But mostly not. I’m get stuck with all this pain and there’s no escape and nobody knows or understand. Night and morning is the worst. I’m still can’t sleep. But for hours and hours I’m just laying there awake. Sirens come and go. People talk and construction starts. Clothes hurt my skin. Lights hurt my eyes and head. Electricity is so loud. There’s all this sensory pain and of course the body pain. Without being able to stim I’m tortured and trapped. Autism is not trapped me. But this ms traps me in a world that tortures me. I’m need stim more than breathe. I cry more now and my feelings get big. I’m not able to communicate with people as much as me was. I can barely leave my room. I’m has to take Allie to potty but it’s not the long walks we liked. Everything is to much. I hide in my safer places. Taking more baths again. Even when I can’t get out the tub by myself. I’ll stay in there for hours under the water to be ok. And I think of how crazy it is some people put themselves in this torture of not being able to stim. And me thinks how sad it is that some people force others into this. You know this constant torture on the body and brain and sensory can cause ptsd. It’s not the same as the abuse you think of but it’s still traumatized. Trust me I have ptsd from abuse. And this constant fight on my body and mind is just as hard. So me wanted to explain this to maybe helps people understand. If you has autism stim is ok because it helps you. And if you know a person who stim let them, it’s a way to cope with the world and understand it and communicate. 

Proud?

I have been sick lately and when I’m sick my words are more bad and takes more time. I know lots people feel sick at this time- but mines special. And not in a good way. I have a minor partial cleft palate- basically little holes inside my mouth that means mine sinuses and everything drip from nose directly to mine mouth and throat. I gets bad infections. But it’s not worth surgery to me. Anyway I’m feeling better today mostly. I forgot to charge my chair so instead of PT I got to stay in bed (FYI still at my friends house). Lucky yesterday me did the important thing and sign the papers for the lady to get me this accessible apt as soon as 1 is open and she say by November. Oh and mine bday was Sunday- me did turn 26 so says mine calendar. My friend made me a Thomas the train cake.

So they did it, the publish story on Allie and me for World Cerebral Palsy day. And here it is-  http://www.tobiidynavox.com/better-communication-rounding-circle-life/ . It’s a super nice thing they say of me. But not all of it makes sense. I mean anyone who has trouble talking prolly has anxiety even if they don’t have autism. Also technically cerebral palsy is a traumatic brain injury just when a baby, and lots of people with CP and/or Autism has aphasia- it’s just more a notice problem for people who lose language when they’re older. And lots of people with autism don’t think in words. And Core has smaller buttons not bigger. But in the end they was so nice saying nice things of me and Allie. And letting people know the different kinds of supports Dynavox Compass has that can help people. And they didn’t focus on any of the bad parts of life. I hate when people make my life this super sad story. 
I really like what they write. But I think the other part for me is that people want to be proud of being able to communicate better now. I’m not. I’m happy of it but not proud. Maybe proud of the people that made the device and software, and proud of the people who work so hard to get it for me and teach me how to use it. But I have a problem feeling proud of myself for something most people can do as a toddler or young child. I mean I know it’s not my fault I’m different or that I didn’t have the support when I was small, but I don’t know if I did anything to be proud of?

I’m going to share a rant thingy me had earlier to my friend. It shows some of mine thinks.

“I have tried college a few times but it just doesn’t work. But I still want to find a way to help make the world a better place. I know some people are able to use their art to make job opportunities. It’s awesome. Unfortunately all my stuff stays stuck in my head. My body doesn’t work well enough to move to drawing. But I do make some cool collages and photos edits and such sometimes. But that’s it. It’s fun and sometimes talented but mostly fun, and definitely nothing good enough to do anything with. It’s hard when you have great ideas but your brain and body can’t process them out to share or do. Sometimes it’s no fun being stuck inside your head. Even with baking I can’t usually get all the steps done by myself, and when I do it takes forever. I sit on the edge of accepting myself And differences, and feeling like a failure at life because no matter how hard I try I can’t do anything that’s expected from someone my age to contribute to society. (Granted our society sucks but still. ) Maybe this book will get done and be awesome, give me something to be proud of besides basic survival.”

So the point is 1) sometimes I feel like I can’t do anything and that I should try harder (even though it never works out and I usually wind up in a hospital) and 2) I’m working on a book. It’s about a white tiger and a wolf who learn what family is really about and how to believe in themselves. There will adventure and a bit of magic. 

I guess the thing is I’m young and trying not to die for a long time, but what do I do with my life? I love to color and watch cartoons. But I also want to do something that I can be proud of and enjoy.

I know I’m a awesome person but who I am is something almost nobody sees. Actually I think only 2 people have ever had a good idea of who me am. My old therapist, and my friend I told I have feelings for. I’m still searching for a way to express my soul. My body and brain make it hard because I don’t have good ways to use words or control my body good enough to do art. I did find this video and really want to see if I can find something to do like that. For music or art. https://youtu.be/XQ9V96NQPg4.

Here’s a pic something I would have wanted to draw but instead did the best me could as collage.

And a piece of poem art that me thinks did an awesome sauce job with.


That kind of autism 

I don’t like when people say but my child don’t have that kind of autism. I see that on Facebook a lot with some of the autism things I follow (mostly I follow cartoons like curious George and paw patrol and scooby doo but it’s nice to not feel alone being different so I have a few autism and cerebral palsy things). Mostly it’s by parents with children less than who are nonverbal and/or may also have a intellectual disability. They’re saying they’re their child is low functioning and using it as an excuse that they can’t do something and never will be. A development delay is that a delay, it may take us longer but it can happen. I really really hate it when its of they child can’t say how they feel or think, which is where I see it the most. If you’re on a post that is asking people with autism their thinks who are you to decide that everyone who answers is “high functioning ” and that you’re child is to “low functioning ” to ever respond to a question. I’m nonverbal and have a intellectual difference and physical limitations and I still can. Sure I need help. I’m not very good with words and use a picture based system even for typing. I have to look up stuff or ask someone to explain a lot but I can do it. It may take awhile to find the best way to help your child find a way to communicate but it’s possible- there are hand signs, pictures, AAC, tv scripts, and of course typing. And maybe some other stuff. Instead of looking at us adults who you see on fb and say my child will never be like that you can think there’s hope because these adults find a way. Or you can even ask us what helped us. But it’s not fair to decide that children who have more obvious differences won’t never learn. Be patient and keep trying new ways. Yes I know there are people with and without autism that have a more big intellectual difference than me (one of my longest time friend does) and they are still valid are able to find a way to communicate to. Don’t you limit them. Our bodies and brains may be different but we still has souls with thinks and feels just like everyone. 

Seeing me and my (dis)ability 

I know there is this like war on words of if a person is disabled or has a disability. It’s more like a war on disability itself where everyone loses. This is on all disabilities but there has some groups that have picked they own side- Deaf people like that instead of has deafness because it’s a culture and Autistic people mostly seem to think the same (but not all do). They use it to empower themselves.     But Me thinks everyone is wrong. Both groups are doing the same thing and making the “disability” a separate thing from the person. Why is this bad? Because both ways focus on the differences not the person 2)both ways separate the person from “normal” people. For the most part you don’t say “So my friend black friend Daniel. . .” Or “So my friend with blackness Daniel. . . ” . You say “So my friend Daniel . . .” And if it makes sense to help the person understand the story you may later mention he’s black (or African American if you’re proper). It’s the same with everyone no matter what the difference is. What happens when you separate the “disability” from the person is you get 2 kinds of people- 1) the kind that only sees your differences and 2) the kind that tries to ignore your differences. We all know of the 1st kind who are either nice and “I’m so sorry” or want to lock us all away or worse. But what’s the problem with the 2nd? Well in my life what happens with them is they become so busy ignoring my differences they forget to accommodate for me. It may be forgetting to talk slow or maybe trying to take me somewhere that I can’t handle (or do because my physical differences) or assuming I understand everything going on or acting like my body language is the same as theirs (with my physical differences and neurological differences it almost never is). Both kinds of people are harmful, have no understanding of my challenges, and are impossible to communicate with. I don’t want people to look at me with pity or awe, just basic respect. 

So what’s a better way? Drop the label disabled altogether. If it’s important then say the diagnosis. Don’t make it shameful, just a everyday fact. I have nonverbal autism and cerebral palsy. I’m not ashamed of being different, and I’m not some sort of special kind of human. (Saying Autistic adult sometimes make me think of saying Siberian Tiger instead of just Tiger lol.) This makes us all “normal”. Some people have Jewish beliefs, some have blue eyes, some have Chinese ethnicity, and some have Down syndrome. 

Why is that important? Because then you can see the person as a whole, which means spending time with them doing everyday stuff while being respectful/mindful of the differences. For example if you have a friend that has Jewish beliefs and you have a BBQ, you make sure (hopefully) there is some kosher food there and tell them of the food options what to expect . You don’t exclude them because of their differences, nor do you make the whole BBQ kosher because of them. Now if you want a friend that has autism to come you make sure there is a safe place for them to go calm down and tell them of what to expect the day to be like. You don’t not eclude them just assuming they don’t want to go, nor do you change the entire BBQ to what you think is autism friendly (which btw since everyone is different there’s not a set standard of autism friendly). 

Why is this a better way? Because it makes it normal to integrate all kinds of people together as human. This is true diversity and respect. This is how you show acceptance, by treating us like everyone else. And by that I don’t mean you do the same exact thing for every person. I mean that you show respect for everyone differences no matter what it is. Lots of people would not feel disabled if they felt included. Being different is a normal thing. But society is not made for different kinds of people, and that is what puts the dis in disAbility. By accepting it’s normal and making everything in the community accessible to everyone we can way lower rates of depression in those with differences. And we can help more people live in the community and be more independent and contribute to society, which would give money to communities instead of taking the money away because needed to run institutions. Everyone deserves to be part of a community. Because we are all humans, and have more in common than different.