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?

Be a Weed

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I had a thought today as I was looking at the weeds in our grass. Our sprinklers broke a few weeks ago and the grass has mostly died, but the weeds are still coming up green. As I looked at those weeds (and the other weeds growing between the cracks in the sidewalk), I had the thought, “I want to be like that.”

It is interesting to me that weeds are the plants that are the most stable, grow the best, and stay the greenest longest. Weeds have deeper roots than grass and as such, are very hard to kill. Everything about weeds is great, except that they are weeds. If grass came up without much work and stayed green without much watering and would keep coming back no matter how many times it was stepped on, most people would be delighted.

So what makes weeds so bad?

The short answer is that they don’t fit in. The longer answer is that they look out of place with the rest of the lawn, and they are hard to get rid of, even with weed killing spray and digging deep to try to take up the roots.

Anyway, to get to the point…

Being a weed is not always a good thing, but it can be very good to have the qualities of a weed in a lot of life’s situations. I want to be like a weed because of their resilience. I want to be like a weed because of their boldness in standing out from a crowd. I want to be like a weed because of the deep roots that ground them when life gets tough.

Don’t be afraid to be a weed in difficult circumstances. Be a weed in standing up against injustice. Be a weed in standing your ground when others are asking you to compromise your morals or values. Be a weed in fighting depression or anxiety or health issues or other trials. Be a weed in coming back up when life knocks you down. Be a weed in having roots so strong in what you believe in that no matter how far someone digs, they cannot kill that part of you. Be a weed when your circumstances are not ideal, but you are determined to grow up strong anyway.

And perhaps most of all, be a weed in being okay with being a weed. Be okay with being different. Be okay with not going with the crowd. Be okay with standing up for yourself. Not everyone will love you for it, but sometimes being a weed is the best thing you can be.

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Finding Your Voice

I have a hard time talking. I mean, I can speak. I just have a hard time finding the words and putting them in sentences when I am speaking. I have heard a lot about assistive technology for communication. I don’t need a device to communicate my needs, but I can relate to the feeling of helplessness with communication. I have needed to find my voice many times over my lifetime.

I found that voice in writing. Most of my good friends have been made through letters or texts. I need to write like I need to breathe. I am a very social person, but I struggle with spending time with people because I don’t know how to talk to them. But when I write, I can say everything I need.

I used to get embarrassed by my need to write things down to communicate. I know it is a different way of communicating than most people use these days, and I felt awkward and alone. People just don’t write letters very often anymore. People don’t write messages to put on the wall for people to see. And if they do, it’s usually something cute or important. My messages were just about telling someone how I felt or what I needed. It was the only way I knew how to tell people what was going on with me.

I have become more comfortable with how I communicate now. I know it is different, but I am different, and surprisingly, people understand that. So I encourage you to find your voice if you have trouble communicating your needs to others. Find a way to tell people about you and what you need. And remember that it’s okay to be different. The ones that matter most will understand and love you for it.

 

The Disconnect

You can be in a room by yourself and not feel lonely. You can be in a room full of people, sitting by yourself and not feel lonely. What makes you feel lonely is not being alone, it’s feeling disconnected from the people around you.

I don’t know what I have in common with people. I don’t think like other people. I have been through things that a lot of people my age don’t understand. I’m not super involved with my appearance like most girls my age. I don’t obsess about boys. I haven’t even really been on many dates.

Sometimes I just don’t see what I have in common with the people around me. And it makes me feel like an outsider. I wonder how I’m going to find a way to be part of the world around me when I don’t seem to be like anyone else. Where do I fit? Where am I meant to be? How do I find my place? And will I always feel as lonely and separated as I do now?

I don’t know. I know I don’t want to be like everyone else. I know I’m not really meant to be. But I want to feel more like everyone around me. I want to feel like I belong. I want to feel connected.

It’s Okay to Be Different

It’s okay to be different. I have to keep reminding myself of that. As I sit rocking in my car before class, I have to remind myself that this doesn’t make me a failure. As I feel the urge to bang my head against walls or hurt myself in other ways, I have to remind myself that this doesn’t make me a bad person. As I flap my arms out of excitement or anxiety, I have to remind myself that it’s okay to be different.

I don’t know why I feel these things, but I have to resist the thoughts asking what’s wrong with me. Maybe nothing is wrong, maybe I’m just different. And maybe it’s okay to be different.

Where Do I Fit In?

I will always be different. There are a dozen reasons why this is the case, but the simple fact remains that I do not fit the established norms of society. I am not talking about everyone being unique and the fact that everyone is different. I am talking about the boxes that we put people in. I am talking about the labels that we all use to make sense of this world we live in. The truth is that I do not fit the boxes.

Whether we talk about gender or religion or personality or even autism, I tend to defy the stereotypes rather than connect with them. I guess some people might say this is a good thing, but it makes it hard to feel like you belong. The symbol for autism is a puzzle piece. People say the phrase “until all the pieces fit”. What if you are a piece that cannot fit? What if you were never made for the puzzle that is this world and your piece will never fit because it was never meant to?

I do not know what I am trying to say with all of this. I guess I just wish I did fit sometimes. I wish I was a little less different. I wish I could find my box, my place in the world. I wish I felt like I belonged. But maybe I was just never meant to belong in the first place.