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.

Advertisements

Autistic Person vs. Person with Autism

There is a great debate in the autism community about how to refer to someone that has been diagnosed with autism. In general, it is usually parents or individuals who do not have autism that advocate for the terms “person with autism.” It is usually adults or teens living with autism that prefer the term “autistic.” I have a different perspective than most on this subject. For me, the terms are both equally applicable, but not equal in meaning. Saying that a person has autism is not the same as saying that person is autistic.

Autism for me is a thing. It is an abstraction. It is a label that is meaningless and insignificant until you apply a meaning to it. I consider myself to be a person with autism, not an autistic person. I have been diagnosed with autism, but I have not and generally do not allow myself to be autistic. You see, to be autistic is to be part of a community that lives differently. Being autistic is embracing the differences that come with autism and learning to live those differences rather than hide them.

To show you what I mean by this, I will give two examples. The first is a child who is born deaf. If that child is born into a family that is aware of and embraces the deaf community, the child will learn sign language. They will learn to communicate using their differences and to embrace the world created by their differences. On the other hand, a child born to parents that are completely unaware of what the deaf community has to offer may opt for cochlear implants, may teach their child to read lips, may communicate with their child through writing rather than words, or do other things to help the child live life despite their differences. One approach teaches the child what is possible because of their differences. The other approach teaches the child what is not possible because of their differences.

Another example that may be applicable to more people is terms used for athletics. Someone who plays sports is called an athlete. Someone who places an importance on sports so that it becomes part of their life is athletic. I enjoy sports. I play them when I can and have played on teams before. However, I would not say I’m athletic. I may have an athletic build, but I am not athletic in how I live my life. Likewise, I have autism, but I am not autistic in how I live my life.

I admire people who can be autistic. I also admire people who have autism, but are not autistic. One way of living is not necessarily better than another. It is simply different. However, in saying that, I need to make a point that I believe we should be more accepting of autistic people. The general public tends to admire people with autism, the people that pass for “normal” and do not show autistic traits. We say that they learned to control it, that they overcame this obstacle, that they faced opposition and did not let it stop them. While this is all true, it does not make the autistic person less valuable. They have learned to embrace what others fail to even acknowledge. They have learned to be themselves even if it doesn’t look like the people around them.

Honestly, I do not want to be autistic. I don’t think I could face that pressure. I have always wanted to be “like everybody else.” I pride myself on my ability to blend in. I cling to my sense of belonging. Maybe someday I can be autistic, but for now, I am simply a person with autism, and that is okay.

For the Love of Autism

I love looking at pictures of best friends. They come in all different shapes and sizes. Some look alike and some couldn’t be more different. But the amazing thing is that somehow, someway, two people saw the best in each other and decided it was worth sticking around for.

I’m so grateful for my best friends over the years. My first best friend in kindergarten didn’t last long, but she gave me something to aspire to. My next best friend in middle school really didn’t need me. She was more popular than I could ever hope to be, but I loved her because she saw me for who I was. She saw the good in me.

In college, I felt like I made my first real best friends. The kind that wanted to spend time with me simply because they enjoyed my presence. Unfortunately, with all of these best friends from elementary school to college, situations change and I didn’t know how to keep a friendship outside of situational happenstance.

At 20 years old, I made my first friendship that really lasted outside of school or work or church. She’s been my best friend for about the last 7 years.

Last year, I made another friendship. I didn’t really think that it could get better than it was. I didn’t think that God would send me another friend because having one best friend was all that I ever hoped or dreamed of. But I am so grateful for our friendship. This past year was one of the hardest and best of my life. I didn’t know how much I needed my friend until I had her. And now I can’t imagine my life without her.

I never really knew what it was like to love someone so much that when they’re not around, it feels like a part of you is missing. I didn’t fully understand the feeling of missing someone until I had my best friends.

There is a connection in friendship that is like a bonding of your heart to theirs. It’s not that I didn’t feel that with my family, it’s just that with my family that bonding felt more like a computer network. We could be far away from each other, but we were still so connected that I didn’t ever feel a separation. I feel the same way with my best friend of over 7 years. But with newer friends, that bond feels more like a piece of gum. You can be apart for so long and still feel connected, but eventually that gum strains and breaks, and it takes a piece of you with it. You can reconnect it and get it back, but sometimes the person just never comes back into your life.

Some people think that people with autism don’t understand love, that we don’t value the people around us. It’s not true. I remember everyone from Kindergarten to now. I remember everyone who was kind to me, who talked to me. I feel love. Too much.

It’s just that I don’t know how to express it. I don’t know how to let you know that I like being your friend or spending time with you. It’s not that I feel like I’m better than you or that I’m indifferent. I just don’t know how to navigate the social skills to tell you what you mean to me. But I love you and miss you more than you’ll ever know. And no matter how small, you took a piece of me with you and I will forever miss that.

I know it’s hard for you not to hear I love you. I know it’s hard for you to feel like we ignore you or don’t appreciate you. I can’t speak for every autistic person in the world, but I can tell you that no one could love you more than I love my friends and family. Yes, we love. Sometimes we just don’t know how to tell you how much we love.

Autism Employment Forum

I have been thinking recently about the job experiences I have had as a person with autism in the workplace. There were a lot of things I didn’t understand that would have been helpful to know back then.

So I started researching support for working adults with autism. There isn’t really anything online. There are links to sites that will set you up with a job coach or employment specialist, and there are a lot of links about hiring someone with autism. But what if you have a stable job as a person on the autism spectrum? Or what if you are fully capable of finding your own job, but this is your first job and you have no idea what your rights are or what to do in certain situations? Where do you learn the things that no one really tells you about working and having/ keeping a job?

I am contemplating making a forum for working adults with autism, or for someone between jobs, or just entering the job field. I’ll answer questions I’ve had and initiate discussions about general employment practices or questions.

It will be a place where we can address topics such as: how do I know if I need accommodations? If I do need accommodations, how do I access them? Where can I go to get help? What are my rights? What do I do when I need a break but management isn’t readily available? Should I tell people I have autism? How do I quit my job? How do I ask for a raise? How do I ask for time off? How do I learn the rules and policies so I don’t get in trouble for breaking them? What can I do if I get in trouble with my supervisor or manager?

But before I go through the trouble of making this forum or discussion group, I need to know if there is interest in such a group, and if there is interest, I need help spreading the word.

That’s where you come in. If you would be interested, like or comment on this post. If you know someone that may be interested, share this post. If you have any input or suggestions, let me know.

If there is sufficient interest, I’ll get started on making a group like this. Thank you for your help!

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.

Life Savers

Tonight I had a meeting for church that lasted two hours. After about the first hour, I started getting restless. After another 20 minutes, I felt like I was dying inside. I pulled out the little ziplock bag I had brought with sour gummy worms and munched on those to get through the rest of the meeting. By the time it was over, I just about flew out of the chapel. Those gummy worms were life savers in that meeting.

Having autism doesn’t mean that I can’t do everything I need to do or that I can’t do what everyone else does. It just means that some things are harder, and sometimes I need more life savers than the average person. Granted, there are some things that I really can’t do right now (maybe someday, but not right now), but in general, I can do the important things given enough help.

Sometimes I feel like I need too much help. I feel like I am constantly in need of someone to save me from myself, from how I feel. There are some people that have literally been life savers for me throughout the years. They have talked me through suicidal thoughts and urges. They have helped ground me in situations where I felt lost and didn’t know what to do.

We all need life savers at some point though. There is a point where we all break or when things become too much for us to handle. Life circumstances and events and our physical, mental, and emotional states, all come together to determine where our breaking point is and when we get there.

For me, autism feels like taking in too much of the world. I feel everything. Sitting in a room, I feel like I can feel the gravity of everything around me. I feel the chairs and the lights and the people and the curtains and the jackets and the sounds. And it’s a lot. It’s a lot to feel every object and every emotion and every noise. And in loud rooms with lots of people shifting in their seats or writing on paper or even just breathing, my breaking point gets extremely close. If I have eaten and I am in a good emotional state and I am not in pain, I can usually handle it fairly well. If one of those things is lacking, I break pretty easily.

I remember one particular night when I broke more than I ever had before. I was at a camp for young single adults, and we were in a devotional meeting. I had been stressed from helping a friend move, and my mom had broken her arm, and I was in a period of severe major depression, and I had worked all day and then sat in traffic to get there, and the microphone was extra loud, and single adults tend to chatter a lot, and I was not feeling well physically. All of that added up to far more than I could handle, and I broke. The only thing I could think about was that I had to get out of there. I had to get away. It didn’t matter how. I just couldn’t handle it anymore. Luckily, I had a wonderful friend with me that night that understood and stayed with me and helped me get to a quiet place where I felt comfortable and could become okay again. I don’t know what would have happened that night without her.

I read about children and teenagers and adults with autism wandering off, and no one knows where they are. It is really not that we are trying to leave safety. We are trying to find safety. We are trying to get to a place where we can be okay again. Maybe if we had more life savers, we wouldn’t get to that point. Maybe if we could lighten some of our burdens, we wouldn’t reach our breaking point. There is not a one size fits all solution, but what I can say is that we need our life savers. I know I need mine, and I am so grateful for all of my life savers over the years. I don’t know where I would be without them.

How Autism Contributes to Depression

I have been lonely for as long as I can remember. I didn’t know how to communicate with people that I wanted to spend time with them, and I didn’t know how to just go and talk to someone. Most of my conversations with my parents were on car rides because that was the only way I knew how to initiate a conversation, when I knew I would be with someone for a designated amount of time and they wouldn’t have anywhere else to go or anything else to do. One of my best friends was probably made because of that exact situation. I would give her rides from work and we would talk on the car ride. We would also talk at my desk when we finished our work and didn’t have anything else to do.

Thinking about it, I still don’t know how to initiate conversations with people outside of those parameters- a defined period of time, a setting where we are required to be in the same general area during that time, and a specific task or event that requires our focus on the moment. People are often surprised by how naturally I start and continue conversations in these situations, but they are just about the only situations where this is possible.

Here is where depression comes in. I used to think that my depression was a direct result of my loneliness. I felt that if I could make friends and be able to spend time with them, I would no longer be depressed. I have now realized that my depression is not just from loneliness. I am prone to thoughts of depression. I am vulnerable to thoughts of suicide and self hatred even when I am not lonely. However, my lack of communication skills always contributes to the severity of my depression.

I have two best friends. They are both completely amazing and I would do anything in the world for them. They help me through my depression on a daily basis. However, my need for their love and approval, and my lack of the adequate skills I need to interpret their actions and communicate my needs, often contributes to thoughts of suicide, depression, and self harm. One of my best friends has been my friend for about 7 years. I don’t worry about losing her because I know that she will always need me at least as much as I need her. I have a problem communicating my needs with her though. I do not know how to tell her that situations are too overwhelming for me and that I need an escape. The biggest issue I have with my other friend is that I do not know how to read her signals. I do not know how to tell if she enjoys being friends with me, or if she wants to talk or wants some space, or if I am too much for her at a particular moment or not enough at another moment.

This is where depression and autism entwine and run away with each other. Depression tells me that since I can’t read someone’s signals, that must mean that they think the worst of me. Autism tells me that I lack communication skills to remedy the situation so I might as well consign myself to a state of depression because this will never get better. Depression tells me that since I cannot adequately communicate, I am a worthless human being and no one would ever really want to be my friend unless I do amazing things for them all the time. And since I suffer with major depression, there are times when I cannot do anything for other people because I am struggling so much myself. And these thoughts all cycle in my head. Depression feeds off of lack of communication skills, which I don’t feel I can improve because autism makes communicating harder, and then depression feeds off of my hopelessness, which leads to increases thoughts of worthlessness, which leads to greater isolation and self doubt, which increases my desires to die, which deepens my depression.

I know that the only way to reconcile these thoughts is to untangle depression from autism, to look at each one separately and see how they contribute to each other. The only way to sort out my thoughts is by communicating them with people to find what is true and what is only a reality in my head because I’m looking at things through the lens of depression. It really is okay that I can’t be in crowds for very long without needing to have a break at some point. It is okay that I carry ear plugs around with me everywhere I go. It is okay that I’m not sure how to communicate my feelings and I stumble on my words when I try to speak without taking the time to construct the conversation in my head first. Depression wants me to see these things as unforgivable faults that can never be understood by others.

The truth is, that my friends already see it. They know that when I walk quickly through a crowd, it is not because I don’t want to walk with them. It is because I need a break from the sensory input that has been too much for me for longer than I was able to express. They know that I try to do more than I’m capable of because I care too much to let autism stop me from trying. They know that when I lash out at them, it is because I have been trying to stay calm on my own for too long and I finally reached my breaking point. But most of all, they know I love them more than I am capable of expressing. And that is the one thing that depression can’t touch. That love, that amazing, wonderful love that I have for them and they have for me, will always get me past the thoughts of depression and inadequacy. And I know that despite the autism, despite the depression, despite how hard things get, I will always have a reason to keep on trying and keep on living and keep on keeping on.