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.

Autism Thoughts

Imagine not being able to talk to your friends when you wanted to or needed to.

Imagine not being able to recognize if someone is friendly or bored or rude or hostile.

Imagine not being able to cry out if you were hurt or ask for help when you needed it.

Imagine not being able to say anything, not because you had nothing to say, but because you physically could not move your lips.

Most of these things are fairly common feelings, but as someone with autism, these are daily realities. I’m sure that at some point, most people have felt like they couldn’t talk to their friends for whatever reason. I’m sure most people have probably droned on about a topic that others in the room find relatively boring. I’m sure most people have resisted asking for help because they don’t want to seem needy or they want to be independent. And I’m sure most people have been unable to find the words to express themselves in times of grief or intense emotion.

Some people say that everyone has autism to an extent. This statement is true in the sense that everyone has a little bit of experience with almost anything. For example, you may experience some pain or discomfort in your back from lifting a heavy box, but that discomfort is on a small scale compared to someone who fractured a vertebrae. I guess my point is that if you don’t have autism, you can understand to some degree what it feels like, but the extent of it is not something I can adequately explain to someone without autism.

How could I possibly explain the paralytic feeling that creates a wall between my need to communicate and my ability to do so? How could I help you understand the tangible density of thought that prevents the formation of vocal expression? How could I express the reality of emotions cascading through my body without physically reacting to them?

I don’t know if there is a good way to explain autism. I don’t know if I could paint a picture of it or draw a diagram or even make a video of how it feels. And my autism may or may not be the same as someone else’s autism. My experiences may or may not be applicable to how someone else feels in the exact same situation. I do know that when you look normal, everyone expects you to act normal- to act like they do. When you have depression or autism or dyslexia or some other unseeable condition, everyone questions when you cannot do what they feel you should be able to do.

I call this blog autism thoughts, not because all of my thoughts are autistic, but because autism is real. It’s not something that goes away because I have learned how to cope or blend in or appear to be “cured”. I talk about autism and depression and suicide and gender identity and anxiety because I need people to understand that it is real. I need someone to understand that it doesn’t just go away with positive thinking or effective therapy or religious convictions.

Yes, it gets better. You learn and you grow and you cope and you live, but it doesn’t go away. I still have and will always have autism thoughts and suicide thoughts and depression thoughts and gender identity thoughts. That doesn’t mean it is hopeless or I shouldn’t keep trying to live better with these thoughts. It just means that it is okay to not be okay sometimes. It is okay to struggle. It’s okay to be autistic and depressed and anything else. And most of all, it’s okay to be me.

SensoryBlogHopNew

Welcome to the Sensory Blog Hop — a monthly gathering of posts from sensory bloggers hosted by The Sensory Spectrum and The Jenny Evolution. Click on the links below to read stories from other bloggers about what it’s like to have Sensory Processing Disorder and to raise a sensory kiddo!

Want to join in on next month’s Sensory Blog Hop? Click here!

 

My Story- The Other Side of Autism

In my last post, I described the social situations that led up to my autism diagnosis. This post will focus more on sensory differences, repetitive movements, and restricted interests.

“That’s not normal.” “Normal people don’t do that.” “Don’t be seen.” “Stop.” “Someone is looking.” “Disappear.” “Be like them.”

These thoughts and more, have flooded my mind over and over again for as long as I can remember. I have forced myself to fit in, stopped myself from doing things that seem strange to others, and carefully analyzed the world for signs of acceptance.

I feel like I don’t know myself. I don’t know what I like to do or what makes me happy. It hasn’t mattered up until this point. It wasn’t about me; it was about everyone else. Flapping is not acceptable; having a meltdown is not acceptable; refusing to try new things is not acceptable; reacting to loud noises is not acceptable; escaping uncomfortable situations is not acceptable; enjoying or seeking out certain sensory experiences is not acceptable. Acceptable- that has been the thorn of my existence, triggering the ultimate thought, “I am not acceptable.”

How did it come to this? How did I get to the point where I was afraid to do anything for fear of doing something wrong? How did I become so scared of being different that I felt like it would be better for everyone if I wasn’t alive at all? How did autism collide with depression and suicidal thoughts, resulting in fear, hiding, cowering behind a cover of normalcy?

Things have gotten better. Fear isn’t as strong as it once was. Suicidal thoughts aren’t as prevalent. But, I have yet to accept my differences.

There are so many groups, websites, and people promoting autism acceptance. They say to be yourself, to flap, to sensory stimulate, to do what comes naturally. I don’t believe it. As much as I try to believe that autism acceptance is possible, my rational brain rejects the idea. How could people possibly accept what they have told me for so long to hide? I am not strong enough to endure the criticism of allowing myself to appear autistic.

I have not done what I could have or possibly should have done to promote this blog. I convince myself that it is because I simply don’t have the time, but the truth is that a large, well-known blog attracts controversy. People will do anything they can to destroy any hope that threatens their perception of perfection. I have experienced this in my life and it has brought me into hiding. I hide my sensory, behavioral, kinetic differences in order to preserve them from being attacked, to preserve me from letting them die.

So I do not flap in public, but I flap openly in my room. I am also starting to do so more at work and church and school when I happen to find myself alone and the chances of being seen are relatively low. I do not rock in public, but I find a quiet, solitary place to release and calm down. I do not chew on pens or furiously scratch ink onto notebooks; instead I calmly draw little pictures, take pens apart and reassemble them, and silently trace little designs with my fingers. I do not twist my hands or do complex body movements to relieve tension; instead I crack my fingers, stretch, shift in my chair, and attempt to distract myself.

Is there such a thing as being free or is freedom learning to live within the structural, social, cultural, religious, and legal constructs of the world? I don’t know if this is freedom, coping, or hiding. I don’t know if this is ideal, disheartening, or simply necessary. I don’t know if it makes me happy or sad, frustrated or satisfied, anxious or relieved. I do know that it’s not likely to change soon.

I am not likely to suddenly start flapping in public or allowing my textural interests to show or talking about my specific topical interests for more than a few seconds or allowing my body to do complex twisting movements. I am not likely to allow myself to show that I am autistic. But, the thoughts of hiding my differences and forcing normalcy are becoming kinder. I am becoming kinder with myself, more understanding of my weaknesses, and more accepting of my sensory needs outside of the public view.

SensoryBlogHopNew

Welcome to the Sensory Blog Hop — a monthly gathering of posts from sensory bloggers hosted by The Sensory Spectrum and The Jenny Evolution. Click on the links below to read stories from other bloggers about what it’s like to have Sensory Processing Disorder and to raise a sensory kiddo!

Want to join in on next month’s Sensory Blog Hop? Click here!