Autistic Person vs. Person with Autism Follow-up

I wrote this post about 3 years ago, but never posted it because I was still unsure of how I felt about everything. However, after my last post, I feel this post will bring more understanding to my point of view.

I have never understood the whole debate between whether we should refer to someone that has been diagnosed with autism as an autistic person or a person with autism. Who decided that saying someone is autistic is an insult? Who decided that we lose value based on how we are labeled? Who decided that the order in which we say something connotes the importance of each part of the phrase? And ultimately, who decided that the order of words determines whether we are people first or disabilities first? Who decided that who we are has to be ordered?

To me the debate is completely unnecessary and detracts from life as a whole. If we can’t even say a sentence without someone arguing about the way we phrase something, how can we possibly hope to have a wholesome and healing conversation about autism and what it really means?

Autism is a noun; autistic is the adjective of that noun. Why does this have to mean anything other than that? Why do people even talk about person first language? We are all people. Who says that saying we have a disability detracts from our value as people? Who says that saying we are autistic people means that we are less than saying we are people with autism?

And in reality maybe we should be asking, what makes autism less than the rest of the world? Why is autism considered less, not as valuable, demeaning? Autism is a disorder. But this does not make someone with autism of less worth than someone without autism. Is a blind person less than someone with sight? You who see the world differently, does that mean my world is of less quality than yours? Perhaps I could show you things in your world that you never even knew existed. Perhaps my world is of no less quality than yours. Maybe it is just different.

And that is what we need to realize. Autism is not less. Autism is not person first or disability first. Autism is not an insult or a lower standard of living. Autism is a difference. Autism is the reality of a world that the rest of the world may never know.

And it is okay to be different.

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My Open Box

I feel like I live in a pretty protected community. That’s not a bad thing. Everyone is really nice and they are willing to help out when needed or asked. Sometimes though, I just feel somewhat out of place. I feel like everyone has their lives wrapped up in nice little boxes, not fancy or anything- I don’t feel like people around me are self centered or pompous. I just feel like most people around me are the stacked up boxes ready to be shipped out of the UPS store. They are “finished” and sealed up and ready to be delivered.

I feel like an open box. I don’t feel like a broken box or a messy box, just an open box. I feel unfinished. In a world where everyone seems to present the completed parts of themselves, I feel like I am somehow behind or missing something. Parts of me are being taken out and rearranged and put back in. Some things are taken out and replaced with better things. It’s just a constant process. I am in a constant process of change and growth. And I don’t see my box being closed up and ready to be sealed anytime soon.

Looking around though, I feel like maybe I am missing something? Maybe I am behind and still need to catch up to everyone else? Is everyone else really done, just with the possibility of being decorated a bit before they’re presented in their best state of being?

I have always been a little behind developmentally. I feel like I went through my teenage years in college, my single years didn’t really start until many years after I turned 18, and I am still working on the whole dating life and getting ready for marriage even though I feel like I should be ready to do those things by now. Is that all this is though? Is it just that I need to catch up to everyone else? Or is it that I haven’t figured out what I need in my box yet?

I guess my question really is when or if my box will ever be closed. Will I ever be done like so many others around me seem to be? Or am I just an open box sort of person, constantly trying to switch out my contents for the next stage in my life?

I know a few other people that are like open boxes. I see them growing and changing and rearranging themselves. I connect with these people. I understand them because that’s how I am. I just sometimes want to be a closed box. I want to be finished, presented in a nice little package for my next stage of life.

I get that we’re never quite “done”. We keep learning and growing and becoming better. I just feel like most of the people around me grow and then get to a comfortable spot and stay there for a while until something new comes along, then grow again and get to a new state of consistency and do it over and over again. And I just wonder if I am missing that consistency or if it is just that I will constantly be different from everyone else. Am I missing out? Or is this just another way of living?

Chameleons vs. Rocks

My best friend is a chameleon.
I am a rock.

She adapts to whatever situation she is in. She fits in with anyone anywhere because she knows how to read people and their personalities and act accordingly. She makes friends pretty easily because she is whatever people are looking for in a friend. The problem with being a chameleon is that she is often accused of lying or faking because how she acts isn’t always consistent with the rest of her life. She never tries to deceive people. She just finds her happy place in blending in with the people around her.

I am the opposite end of the spectrum. I am the same no matter who I am with or where I am. I am the same with my boss as I am with my mom or my best friends. I mean, the dialogue changes and some people see more of me than others, but I am pretty consistent. Even at concerts or when I am particularly happy, I don’t know how to get those emotions out of me. I can often seem like a “stick in the mud,” not because I am but because I don’t know how to express myself well. I have a hard time making friends and a hard time hanging out with people. I just stand out from the crowd, sometimes in a good way, sometimes awkwardly, and sometimes by being invisible.

We became friends because she sees me for who I am, and I allow her to be whoever she needs to be. Since I am a rock, she can act how she feels at the time because she knows I won’t change. She doesn’t need to act a certain way because I stay the same no matter what.

The thing is, it is hard to be a rock and it’s hard to be a chameleon. She needs me to believe her when other people are calling her a fake. I need her to be there because I don’t make much friends as a rock. We need each other.

I guess all I am saying with this is that even if you are as different as a rock and a chameleon, you can still be best friends. Give people a chance. Let people see you. See other people. You may be surprised at the friends you make when you do.

Picturing People

The other day I was thinking about a friend of mine that I went to help with some cleaning. It was interesting though because this friend is in a wheelchair and has been for as long as I’ve known her, but when I pictured her I didn’t picture her in a wheelchair. In fact, I totally forgot she is in a wheelchair until I was trying to think of why I had helped her clean.

And I just thought… wouldn’t it be awesome if everyone could picture everyone like that all the time? What if we could all just see each other without our disabilities, without seeing what makes us different, and just see what makes us the same? How different would the world be if we could all see how we’re alike instead of how we’re different?

I know it sounds idealist, but if I can forget about someone’s wheelchair, I’m sure people could forget about my autism or depression or other faults. So maybe I don’t have to worry so much about all my differences. Because if I can picture other people without their disabilities, maybe they can picture me without mine.

Limitations

Autism is defined by limitations. There is always more inside than what we have the capacity to express or act on. In truth, life is defined by limitations. We all have limits- things we can’t do or won’t do or are afraid to do. Sometimes we set our own limits, sometimes they are set by our environment and sometimes they are set by our own physical, mental and or emotional state.

It’s not bad to have limits and some limits are beneficial. However, our limits can at times make us feel weak or helpless or worthless- especially if those limits seem to be different than everyone else’s limits.

The people I look up to the most tend to be the ones that have no or few limitations in areas where I have huge limitations. And in turn, there are people who look up to me in areas where they have many limitations and I have few limitations. It’s hard to see why they would admire me when I look at my limitations and how much I admire their abilities in my weakest areas. But if we consider ourselves as a whole and other people as a whole, we realize that we all have aspects of ourselves that can be admired.

However, even in acknowledging our strengths and being proud of them, it can still be hard to accept our limitations. My limitations have been very difficult for me to accept over the past few years. I have so much more to give and so much more that I want to do, but because of my limitations I am unable to make those thoughts and desires a reality.

And to be honest, I sometimes envy those whose limitations are obvious. I know it sounds wrong, but I wish that my limitations were obvious so that people would understand why I can’t do certain things. No one would look at someone in a wheelchair and wonder why they’re not running. And yet, it is common for people to look at someone like me and wonder why we aren’t making eye contact or socializing with everyone around us.

So I would have to say that the hardest part of having limitations is people assuming that you don’t have those limitations. It’s hard to know that I can’t do certain things and it’s frustrating to try over and over and continually fail at those things. But what’s harder is thinking that you should be able to do those things. What’s harder is feeling like a failure because the rest of the world doesn’t see a reason for your struggles. What’s harder is knowing that you may never be able to overcome a limitation that no one else may ever understand you have.

Hearing Voices

I have been incredibly busy the last few weeks and I’ve had a ton of thoughts going through my head of posts to write, but this has been on my mind a lot lately so I figured I’d go ahead and talk about it.

Hopefully the title doesn’t throw people off. I’m talking about voices from when people are actually talking to you, not voices in your head or hearing things when no one is around.

Hearing the sound of someone’s voice is very hard for me to do sometimes.

I don’t know how most people hear the world, but when I hear the world I usually hear background noise first. I hear the sound of the wind rushing past my car as I drive more than I hear the sound of the radio. I hear the sound of the dishwasher or the dryer or the air conditioning or heavy breathing more than I hear the words someone is saying to me.

Unless sounds are at a different frequency, I have trouble differentiating between words and sounds. So if I’m listening to someone talk and their voice is at about the same tone as the sound of the dishwasher, I’m probably going to understand only about half of what they say. Meaning, I’m basically gathering the rest of the conversation from the context of what I do hear.

So if you’ve ever wondered why someone turns the sound up on the TV during the talking parts of a movie but then back down again during the action scenes, that’s probably why. The background music or other noises make it hard to decipher what people are saying so we try turning up the volume in an attempt to understand what’s going on. But when the other noises come back, we hear them at full volume and need to turn the sound back down. (Well, at least I do. I really don’t like loudness at all.)

So if I ever ask you to repeat something or look at you like I have no idea what you just said, it’s not because I’m not listening. I just can’t hear you with the sounds of the rest of the world. And I’m hoping that if you say it again, I’ll gather just enough from the context to understand the rest.

Why I Gave Up My Tablet

In order to help my best friend who is struggling right now, I bought a tablet from her. I paid her the full price she had paid to buy it new from the store. So it wasn’t the cheapest tablet I could have gotten, but I was helping out a friend so it wasn’t a big deal.

Anyway, I decided after about a month of owning the tablet that it is not a good idea for me to have a tablet. The thing is, I am obsessed with games. It’s an addiction. If I have access to a gaming device, I will literally play on it for hours. Even after I need to go to sleep or do something more important, I will keep playing sometimes until I make myself sick. I just feel a need to get to the next level or complete the next objective and then the next one and the next one.

Why are games such a problem for me?

Because games make sense.

Games have rules and objectives that I can understand. I don’t have to try to decipher social cues or maneuver my way through awkward conversations. I can just follow the rules and everything will work out the way it’s supposed to. And the best thing about games is that if you make a mistake, you can always try again. The game isn’t over until you give up or you get it right.

Life isn’t like that. Sometimes in life it seems like you’ve lost the game before you even had a chance to start it. No matter how hard you try, you can’t make up for inadequacies. And even when you think you understand the rules, there’s always things that can happen that seems to put you back at square one.

Have you ever played a game for the first time and felt completely lost as to what the rules were and no matter how much you learned as the game went on, you always felt like you were two steps behind everyone else? That’s what life has often felt like for me. I don’t understand people’s intentions. I don’t understand how to start conversations. I don’t understand how others seem to make friends so easily or start a conversation with ease. And when I feel that lost, it makes me not want to play the game ever again.

So it’s easy to see why games can seem so much more appealing than real life. It’s easy to see why people who feel different play games so much. It’s easy to see why I can play games until I’m sick because it’s one of the few things that makes me feel not broken.

But I gave up my tablet. I gave up playing computer games. Not because I don’t enjoy them, but because life is more important to me than feeling whole all the time. Life isn’t easy for me; playing games is easy. But I’d rather be involved in something that’s not easy but has meaning than something that is easy but doesn’t have meaning.

So I gave up my tablet not because I didn’t like it, but because I’m willing to take on the hard stuff to become better. I know it’s not going to be easy because it never has been, but it is worth it.

I think sometimes the world tries to convince us that life should be easy or that we should try to make life easy for our kids or those we love. But the truth is that it’s in the difficulties that we really live the most. The most memorable lives in history have been the ones that weren’t easy. So don’t be afraid to live a hard life because that’s what makes your life great.