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.

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When Someone Understands

My entire life I have dealt with not being okay. There are different reasons why I might not be okay- maybe it is too loud or too bright or too hot or there are too many people or there is too much going on or I am hungry or tired or anxious or just not okay for some other reason. Sometimes I do a pretty good job of getting myself to become okay again; other times not so much. I have learned over the years that there are times I simply cannot handle a situation in a positive way because of how I feel. I have also learned to find a way to escape when I feel this way so that I won’t do something I would regret. But, until recently, I was generally alone in figuring out how to deal with all this.

A few days ago I was at a family event that was overwhelming for me. I felt crowded and hungry and the noises around me seemed extra loud. I went to a chair in the corner of the room and tried to pretend like I was okay. I didn’t really expect anyone to notice or do anything. I was just trying to disappear into my head. But, my sister did notice. She asked if I was okay and if I needed to go to a quiet place to be alone for a while. She and her husband hugged me and told me that it was okay that I was having a hard time. They showed me where I could go to get away from everything for a bit, and while I was away trying to calm myself, my sister made me food and brought it to me.

It felt so amazing that I cried. I cried because people are starting to understand. They are starting to realize when I’m overwhelmed and need a break, and they are helping me. When someone understands it changes everything. It is easier to become okay again when others don’t expect you to be okay in the moment. If they get upset with you or frustrated or scared or react in a way that makes you feel abnormal, it invalidates your feelings. You get upset with yourself because you should not react in that way, you should be able to control yourself, you should not be overwhelmed by the situation.

I feel like I have pretty good self control. I can generally hold in a meltdown until I get to a place where I am alone. I can generally calm myself down enough to get to another room before I get overly upset about a situation. It is hard though. It is hard once you are not okay to do everything on your own to become okay. It is hard to be alone, yet that is often how we believe we must deal with how we feel.

Over the past few weeks, I have had a lot of times when I was not okay. But I have been amazed at the positive, helpful responses I have received in these times. Not everyone has responded positively, but a few people have let me be not okay with them for a few minutes so that I could get to a point of being okay again. It has helped me to become okay so much faster and be able to still participate because I didn’t have to leave before I really wanted to go. Maybe it is not always that easy. Maybe sometimes other people can’t really do anything to help, but if someone can understand, if they can let you know that it is okay to not be okay, that can change everything.

 

Voices of Special Needs Blog Hop

Welcome to Voices of Special Needs Blog Hop — a monthly gathering of posts from special needs bloggers hosted by The Sensory Spectrum and The Jenny Evolution. Click on the links below to read stories from other bloggers about having a special needs kiddo — from Sensory Processing Disorder to ADHD, from Autism to Dyslexia! Want to join in on next month’s Voices of Special Needs Hop? Click here!

Deserving Love

I used to think that if you were loved, you must deserve it. I thought that in order for someone to love you, you had to have done something worthy of love. Love wasn’t just given freely, it came with a price. I wasn’t sure what that price was, but I thought that only truly good people could be loved.

I heard people say to “love the sinner and hate the sin.” I knew that people in church expressed their love. I heard the words, I love you. I just didn’t see it. I didn’t see where love lasted past someone doing something wrong.

Last night, I kind of understood what love really means. I was at my brother in law’s family’s house. I have always loved being in their house. It just feels good. It feels like love. Up until this point, I thought that everyone in his family just deserved to be loved because they were so good. Last night though, it struck me that it wasn’t what they did that made them loved. They are simply loved because of who they are.

They have this tradition on someone’s birthday where they go around the room and say things they love about that person. I have been there for a few of their family members’ birthdays. I am always amazed at how loved each of them is. As I sat there listening to the things they were saying, I finally understood that love isn’t a one way path.

There is no one thing you can do to deserve love. Each person is different and unique and has different things about them to love, but each person deserves love simply because they are. It is not the deeds that qualify a person for love, their simple being means that they are worthy of love. You just have to look for the part of them that you can love and then love them because of that.

I haven’t felt loved for a lot of my life. That wasn’t because I was not loved, it was because I didn’t understand love. I thought that anger meant hate. I thought that I could never be loved because I would mess it up. I felt love and affection at times, but other times, I felt unlovable. It seems strange, but I sometimes even thought that I was too unworthy to even deserve to be punished. When I did something wrong and didn’t get the treatment that one of my siblings received, I felt like I was so far gone that I wasn’t even worth correcting.

My friends don’t understand. They tell me they love me and wonder why I doubt it or why I seem to think that changes. I thought that was how love worked. I thought you loved someone until they did something to make you stop loving them. I was never sure what makes people stop loving you. So anytime I made a mistake or hurt someone in the smallest way, I worried that their love would be taken from me.

I don’t know how long this feeling will last. I don’t know if I have really internalized that love is simply given, not earned. I can’t say that I’m going to stop asking my friends if they still love me. I do know that I have been changed though. I know that I’m a little closer to understanding what love really means. Someday I hope to understand a little more. Someday I hope that I can know that I deserve to be loved, not hurt, and that I realize that love isn’t a reward; it’s a gift.

Dear Best Friend

This letter is partly for my family because they have always been my best friends, but also for my non-relative friends who have been there for me in big and small ways over the years.

Dear best friend,
I want you to know how much I love you. I want you to know how much I appreciate you. I want you to know how much you mean to me.

Dear best friend,
I want you to know that it’s not your fault when I’m not okay. I want you to know that I don’t expect you to cure me. I want you to know that you do help more than you know.

Dear best friend,
I want you to know that you have saved my life more times than I can count. I want you to know that the dark loses its fight against me every day because of you. I want you to know that you make me a stronger and better person.

Dear best friend,
I want you to know that I would do anything for you. I want you to know that I recognize the things you have done for me. I want you to know that my life is brighter because you are in it.

Dear best friend,
I wish I could tell you how I really feel about you. I wish I could communicate how much I love you. I wish I could tell you how much you help me.

Dear best friend,

I wish I could be okay for you. I wish all my problems could just go away because I’m friends with you. I wish I could be the person you want me to be.

Dear best friend,

Thank you for loving me anyway. Thank you for being there for me over and over.

Dear best friend,
Thank you for being my friend.

A Plea

This weekend I was supposed to go with a friend to visit someone from church, but I was caught in traffic and didn’t make it. I was supposed to take a midterm that luckily was rescheduled. I was supposed to do laundry and go to the temple and finish a programming project and read talks and write in my journal. This weekend, I was supposed to pick up my dad from the airport and spend time with family and help with the kids.

I didn’t really do any of those things. Of the things that I attempted to do, I was either too overwhelmed to accomplish or circumstances prevented me from being able to finish.

So what did I do this weekend? I cried a lot. I slept a lot. I curled up in my bed or in a corner of my room and just tried to forget about the world. I broke down and just caved in to the exhaustion.

Sometimes you just have days like that, weeks like that. Sometimes you just have times when you can’t even pretend to be okay. And it’s okay. It is okay to feel like you just can’t do it anymore. It’s okay to feel like life is too hard or too much or simply that you need a break.

I hope that when those times come, you try to be kind anyway. I hope you don’t give up on the world or yourself. I always just tell myself that it will get better. I tell myself that it’s okay to know the darkness, but to not stop recognizing the light.

As much as it gets better, I have realized that there will always be days when I’m not okay. There will be nights when I will desperately long for a friend to be there for me, but will be far too afraid to ever try to reach out to someone. There will be hard times, but I am grateful that I don’t have to face them quite as alone as I once was.

This week, I went to a funeral, found out my friend was starting inpatient treatment, heard stories of heartache and pain, and as I said before, broke down multiple times. Each of these circumstances reaffirmed to me what I posted about a few days ago… That loneliness is a far greater trial than any other hard thing you can go through.

Please, if you can do anything to help someone be less lonely, please do it. I know it’s hard. I understand that you’re busy. I know we all have different priorities. But loneliness is real. It’s a feeling I understand well. If you can do anything to help someone who may be experiencing loneliness, I plead with you to act. Life is too short to struggle alone. Maybe we can’t cure loneliness, but I can make it better for you, and you can make it better for me, and we can make it better for others.

Phone Calls

My mom called me last night after reading my post about how nervous I was for the tests I’m going in for. We talked for a few minutes and just connected about our health issues. She helped me feel a little better about going in to the doctors and a little less nervous about everything.

After we got off the phone, I found myself tearing up. It was just so incredible to be able to talk to someone on the phone.

I hardly ever talk on the phone. I’m not good on the phone and I get nervous that I’ll make a mistake. But whenever someone calls me just to see if I’m okay or just to talk, it’s one of the best experiences ever.

I have this one friend that has called me a few times. Every time she does, it makes me so happy. It is honestly the best gift anyone could ever give me at that time.

As hard as it is to talk on the phone, I am so grateful when I do. It lifts my soul in a way few other things do. I am so grateful to those few people that do call me sometimes. It means more than they will ever know.

Gender Identity

It happens all the time… So much that I should be used to it by now. It still surprises me a little though when people call me sir or refer to me as male when I’m wearing a skirt. I understand that it may be confusing when I’m in jeans and a t-shirt, but I would think a skirt should be fairly obvious.

It used to crush me. Hearing someone call me sir was embarrassing to say the least and caused a fair amount of social anxiety and dysphoria. It made me feel like less of a person, worthless, hopeless, helpless. I avoided shopping, using public restrooms, going out to eat.

I was afraid of being called what I was not because I feared that the people I cared about would see through me. I was afraid that if my friends saw or heard someone treat me like a male, they would question my character… as though someone’s perception of my gender would indicate deception or inconsistencies in my life. I was afraid that not being seen as a woman indicated that I was not worthy to be a woman, to go to activities for women, to associate with other women on a girl-to-girl level. I was afraid that people’s perceptions of me created my reality.

I now realize that my thinking was faulty. My friends aren’t going to disown me because someone calls me a guy, and they are not going to question everything they know about me because of a misperception. However, they may stand up for me or comfort me or reassure me that I am okay and that they see me as more than the random stranger that calls me sir.

Still, getting called a man so often makes you question your resolve. It makes me wonder how easy it would be to become a man by society’s standards. How easily could I blend in? How hard would it be to transition? It would likely be incredibly easy and a fairly smooth transition in most areas of my life.

But the truth is, I like being a girl. I don’t like wearing skirts and dresses, and periods are the bane of my existence, but overall I enjoy the quality of my existence. I enjoy “girl talk”, even when I don’t exactly relate to any of it. I actually sort of enjoy shopping, when I don’t have to worry about getting kicked out of dressing rooms or getting strange looks from people. And I love the mother daughter relationship I have with my mom and the sisterhood I share with my only sister.

But, for my sanity, to be okay with being consistently called a male, I classify as genderless. To not get offended or embarrassed, I don’t identify myself by my gender. I am female, but that doesn’t really matter because it’s not how people see me, but who I am that matters.

If I have learned anything from this process of acceptance, it is that it doesn’t matter how people see me, but how I see myself. I am not my inconsistencies. I am not my misperceptions. I am worth just as much when I am called a man as when I am called a woman.