So me has see a thing problem with trying to share mine experience. No matter how me do it me am not good enuff. Is always a reason not has to listen to me. If me types my normal with little help from anyone me am to hard to understand or my obvious intellectual and communication problems makes me invalid. But if me gets help me am see as to smart and people think am ‘high functioning’ so can’t possibly be like the other nonverbal kids who still has behaviors. Even tho me am still having behaviors. Besides behaviors is a form of communication and brain body self defense. As me am less can type me am has more behaviors. Not on purpose but is the only way you can see if me has a headache or am overwhelmed or as pain, when mine body can do nothing and me am rag doll you not can know anything of mine feels and thinks. Judging me or anyone is bad especially based on how we type. You don’t know us. You don’t see the hours working on these words. You don’t see the meltdowns me has. And even those who are ‘high functioning’ you don’t see them struggles and shutdowns. Mine friend Grr is called high functioning autism. Him works and talks. But him also stims, has meltdowns, has trouble with things like baths, has sensory problems, and can has times of nonverbal. The thing is how much you can do in 1 way is not how you do in all the ways. Do me need more help than him yes. But that not means him not needs help to. But if all you see is us typing then you not can know what him needs. You not can see his meltdowns by him typing.
If you are read my blog for the first time here’s something you need to know for this post. Me an not a teacher or parent or professional. Am adult with multiple challenges including nonverbal autism, intellectual disabilities, and ms. So me am talk from mine experience.
This a new thing me hear people talk of lately called presuming competence. The way me understand it and thinks is the best way to understand it is to believe a person can learn. (Not to mean to ignore any challenges and say the person is not trying because you ‘know’ they is more smart.) Why do me thinks this is important? Because so many people look at a person with any easy to see physical or mental differences and think they not know anything and or not can learn anything so they not even try teach. A developmental disability means some things take your body and or brain more time to learn, it not means you never learn anything or so many people would never learn to crawl or even communicate more than just crying like a new baby. And a disability someone gets later like ms or after a stroke do not change who the person is inside. It may mean the brain and or body not can do the same things or may needs more time but the person is there.
Some people who body acts different like has cerebral palsy or ALS or even “severe autism” are really really smart but you not can see that. Think of say Steven Hawking as proof. Or Christopher hills (you can YouTube him). Or rockysclimbingjourney he has a blog to but also there is a video of him. Once the person is able to communicate you can surprise how smart them is.
And sometimes there is people like me that may have an intellectual disability and or learning challenges (like dyslexic type things). But even then if you take the time to find how best them can learn they can do things. Me learning to type was not a easy thing and even tho am 26 mine read and type is low but me learned and still am learning. People with Down syndrome learn things to and not likes when you talk of them like them is babies.
For a not school place presuming competence is like believing the person can understand things even if needs a little help or not can show it in normal way. A really good example is this. . A time me went to breakfast with someone and they sister and her son who has ‘severe’ nonverbal autism like me but was like 8. They told us we was going to the park. Before me even understand what was said the boy had put on his backpack. His mom then was acting like he had a behavior and her try to take the backpack. She did not even think for a minute that he was understanding her. The problem was they did not say when we was going to the park so to him (and me to) it was expect to be going when her say it. Another example is people that talk of a person but not to them even if them is rite there and that’s just not nice. Most of us are not Deaf (but even then is not nice) even if we take a few minutes to understand. My friend Grr does something me really likes, him will talk to me even when him know me not can respond back. And at doctors him tells them to ask me stuff even if he needs to speak for me, he gives me a chance to be involved and always tells them to wait if he can see me am trying to understand or communicate something no matter how long it takes. And Cheetos helps me understand things that may be important even if hard to understand. For example some politics like what is going on with Medicare and Medicaid. He explains stuff in way that makes sense. A lot of people not thinks we can or needs to know of things like that. But we do so we can advocate for ourselves like the cripthevote thing. A lot of people who see me in my power wheelchair especially when they see me not can talk act and talk like me am not a real person with thinks and feels. Me has see people who respect and communicate with toddlers more than me. And not to say they should not respect and communicate with them, but to think of this . . If you can believe a person who is like 2 has something to say then why you think a person that is 26 (or any other age) not has something to say? We has see and experience lots of things. And similar people who see me type not so good just sort of dismiss me because it’s obvious that me has challenges. Mine thinks is just as important. My brain and body has challenges but mine soul is fine. Especially when say we’re talking of something related to autism which I live with. And related to that even tho me am different am able to be a good friend. Maybe a different friend than you has but like me tell Cheetos I may not be the best at understanding everything but am good at listening and being understanding and support.
Ok the part to remember is to always believe a person can learn and understand things no matter how much help or time they need. Be creative. Also never ever give up finding a way for a person to communicate (gestures, pictures, words, etc )
I’m want to say a thing. Me types and you see that. But you don’t see all the words that I never find or can’t get out. Lots of mine feels and thinks stay in mine head. I don’t know if that is true for all nonverbal autism people that learn to type and or talk or not but it’s true for some of us. And you don’t know who. So don’t judge and assume anyone language skills just because they type or talk a little bit. Some may be really good at say what they thinks but not what they feel. Some may be good at both but not good at understanding what other people say. Some may be great at understanding what other people say but can’t say what they want. Some may be like me and still trying to work on all those things with extra supports and time. Language skills and communication skills are very hard to understand and you should take time with the person and try lots different communication ways with and without words to see where a person is. But that’s still can’t show you what is on the inside. Like how a paralyzed person knows how to walk but can’t make they legs work some people know what they want to say but can’t get it out because the brain scrambles everything.
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.
I know this will be weird. But please read. Us with autism may have problems with friends. We have little in common with the other people our age. And we may have learning problems. I do. My old caretaker used Facebook and YouTube to try help me with these things. On Facebook you can follow cartoons like Winnie the Pooh and Sesame Street and Disney and nickelodeon. Or other stuff you like. So he gave me those. Just by have Facebook it was nice to feel like normal person. Then when I see pictures or videos he would help me read. At first it was easy words like the name Winnie the Pooh well easy because I can see pooh and know it’s him. And when me show more wanting to know what it say he did more. Like if say honey show me the honey. And he would show me how to match type letters on the keyboard on google images to see pictures to learn what the word mean or on YouTube to get videos of my favorite shows. And he show me how to use the stickers to say something like the kitty with the pizza if I wanted pizza. And he help me match type letters from PECS to type. he did ask if I like the RUGRATS and when me point to yes and he ask why and me show it is my favorite he help me type that comment. It was so cool to see what me had to say. And people can like it. And then with Dynavox it became more easy because it can talk and the iPad can type what it say. Matching letters on the Dynavox keyboard gave me pictures of words like google images but faster and only 1 so not to confuse. And he show me how to follow a few people like me to know I’m not alone. And how to use it to message him even if I did not see him beside me. We would have long messages with mostly stickers. And a few words I learned. So it may sound weird but Facebook can be used to help with social skills and communication and learning. And YouTube and google images can help to. They are not normal use for special needs but that part of how they work for more older child is to have something Cool that helps. Or even just say they feel bad because they like Winnie the Pooh but on Facebook they can see lots of people like Winnie the Pooh and that may lead to friends even if only online.
People have these thinks about other people and it changes how they act to them. And I don’t like it. There is a person who knows me and also knows a (9year old?) child who has nonverbal autism to. This person expects a lot from me, way more than I can do even though I try until I shutdown. And They expect me to understand everything they say even though I don’t at all. But when they tell the child they are going on a walk and the child goes to the door, the person doesn’t understand the child went to the door to leave. The person think the child just wanted to look outside. The person didn’t want to walk at that moment but they didn’t say that or when. Now this is silly. But the reason is I have a communication device that I can use, and the child does not. But the child is better able than me at understanding spoken words. It makes me upset to watch the people not think the child can do stuff. Nobody but me has been able to help him use Dynavox because nobody else can see him. They don’t see how smart he really is, or how his body doesn’t listen to him (I think he has CP too). He’s not getting the chance to learn to communicate because they don’t see him. They are focused on behavior but not understanding. They don’t understand that if he’s taking off his clothes he’s probably hot or uncomfortable. They don’t see him at all, they don’t even look. I do, I let him walk to the park with me and Allie. And for a little bit he was himself with no pressure. We didn’t need words. There was a lady who work there at the school who saw us, and I wondered what she saw 2 autistic children who needed help or a older child helping a younger child. I was very much like a type of big brother that little bit, because someone had to let him know he was ok as himself. Most people think I am very smart if they see me use my device or they think I am not smart at all if they don’t see me use it. I am not smart as most people my age, but I do have a brain. And the child is the same. He can learn to be even more able than me if given the support. When I was that age I didn’t understand people at all. He has less behavior than I did. I believe in him. I am as able as I am because someone took years helping me. They worked with me to learn how to use Google to understand words by finding pictures, and how to type by matching letters from my PECS.
I spend roughly 97% of mi time trying to prepare for everything that’s going to happen places I’ll be, things people will do and say, sensory changes ect. . . If i can know and semi understand what going to happen or could happen i can try to prepare how to handle it, what do or write. But anything happens of script say i drop something or get asked a cuestión and I’m lost. And i even have key word scripts for instance if i hear the word ok i agree, i hear mi name i look ect. . . And then there are words. Allot of time i ‘speak’ in riddles or circles trying to get something out but unable to find the words so i try to make people dance around mi language to figure it out. But the other thing is that everything i do communicates things sometimes very important things that no one gets cuz it’s not verbal. For instance nodding mi head means something like i don’t know what’s going on but sure you’re right. Or the few words i use over and over (written) that have meaning that no one really gets such as Mew which i think translates like need support our giving support even though I’m not able to understand/explain the issue. Even the fact that i do everything the same over and over explains that i don’t know what to do if stuff isn’t where it’s suppose to be (hence of script). There’s a message in most things that i can’t pin point out always know i should. But it works similar to the body language things neurotypical people have that i barely understand. Unfortunately neither side understands how the other communicates very well. But that doesn’t mean no one is trying.