The Need for Opportunities

Not many people realize I have autism. It is not a topic that comes up very often in everyday conversations. And I have grown so much in my abilities to communicate and cope with my surroundings that I hardly notice it much of the time. Through all this, I have realized how important it is to have opportunities to learn and grow.

Most people take talking for granted. They see friendship and having conversations throughout the day as normal, everyday occurrences. This is not always the case for someone with a disability or for someone who is a loner or an outcast or even just an introvert. I remember being afraid of my voice as a teenager and young adult because I used it so little that I was constantly afraid it would not come out right when I needed it.

I have grown so much over the last several years because of the opportunities I have been given to communicate with others. I have seen the differences in my abilities to communicate because of the practice I get in communicating. I talk to people constantly at my work and at home with friends and family.

This has not always been the case in my life, and I first started noticing the difference when I visited my sister’s family on a regular basis. I noticed that it was easier to communicate and the words came more readily because I would always talk more when I was with my sister. I would read books aloud to her children. I would be engaged in conversation with the family and extended family. I was given the opportunity to use my voice more in those situations, and it created a notable difference in the rest of my week.

Since that time, I have been given an incredible amount of opportunities to improve my social and communication skills. I was asked to teach a class at church. I translated often at work and conducted orientation meetings for new hires. I gained a best friend that pushed the limits of my communication skills and allowed me to explore the social demands of friendship in ways I never had before. I was constantly using my voice and communicating my needs and using my social skills. They say that practice makes perfect. I am not sure if that is true, but practice definitely makes you better. The more I was able to practice my skills, the better they became.

My point with all of this is that growing up, I went to therapy and had scattered opportunities to learn communication and social skills, but it was not enough. I learned the skills necessary to place an order, ask a question, or do other things that were required of me, but it never came easily. It was a constant battle to communicate my needs and not feel lost in a world that I could not seem to understand. Now, communication and life in general has become much easier to handle. I know how to do things that I never thought possible in my earlier years. And things do come relatively easily.

I don’t know if it would have been possible for me to have more positive social experiences while growing up. I was an outcast and bullied and extremely cautious with who I trusted because of those things. But I hope that the world has changed enough that it is more possible for children today to have these experiences. I hope it is more possible for children with autism to learn social skills by practicing with their peers. I know the importance of those opportunities. I have seen how much of a difference they can make. And I hope we all try a little harder to give people the opportunities they need to become better.

Advertisements

Hangry

Last week was an especially difficult week emotionally. I had multiple breakdowns a day and just struggled to control my emotions several times throughout the week. By the end of the week, I realized that this was not simply the result of inconvenient timing of mood swings but was instead directly correlating to my eating habits. The longer it took for me to get food, the more aggressive and anxious I became.

I have always known that I struggle with handling needing food. I can tolerate hunger and can go without eating for a while without issues, but if I do not get food when I am expecting to eat, I lose self control. I lash out and have even injured myself at times. This probably sounds a bit extreme, but I looked up a couple articles about “hanger” and aggression around hunger. The ones I found most relevant explained that low blood sugar can decrease serotonin, which increases stress and affects the ability to regulate your mood.

As someone who already struggles with serotonin levels and mood regulation, this can easily send me over the edge. I remember as a kid, kicking myself off a bed because I was so hungry that I didn’t know what to do with myself. The biggest problem with all this is that it is difficult to provide food for yourself when you get to that point. Trying to cook something when your brain isn’t working leads to more anger and frustration because the process takes too long or is not going as planned.

At this point, I have realized as an adult that I have three options. I can withdraw myself from the situation until my body tires itself out and I no longer have the energy to be aggressive, or I can try to maintain self control just long enough to get something to eat, or I can allow things to get to the point when I explode and am at risk of hurting others or myself. I can’t tell you how many times I have experienced these problems as an adult, much less as a child. Granted, as a child, someone else was mostly responsible for providing food for me, but I had less control about how or when that food came.

I think it is interesting to note the differences between what we expect of children and adults. Often when we become most frustrated with how someone is acting, there is probably a physiological component to their behavior. Maybe they literally cannot just keep calm and carry on. Maybe they cannot communicate their needs. Maybe they cannot provide for themselves in the ways we expect. The difference between children and adults though is that we expect the child to learn to do these things and the adult to know how to do these things. But maybe instead we need to focus more on why things are happening to help prevent the physiological reaction because at that point, it is too late in many ways to avoid unwanted reactions.

Keep Going

The other day, I did something that was impossible for me a year ago- I said hello to a friend in the grocery store. I know that probably sounds pretty trivial to most people, but I have never been able to greet someone if they were not looking directly at me. I have a hard time controlling my voice volume so I was always worried that I would be too loud and scare the person or that I would be too quiet and they wouldn’t hear me.

I also had a major fear of touching someone, like on the back or shoulder to let them know I was there, which is another thing that has changed recently. I have gotten “pins and needles” before when a friend rubbed my back. I was not used to being touched and my body reacted in negative ways to it. But the other day, a friend rubbed my back and there was such an incredible warmth that went through me. It felt like love radiated through me from the touch of their hand. It was such a beautiful and calming feeling.

Anyway, I said hello to this person in the store, and we had a conversation like we would at church or any other place I might see them. It was simple, natural, completely normal to any onlookers and something that person probably didn’t think twice about, but I was ecstatic. I texted another friend to celebrate my accomplishment. I had wanted to do this my entire life. I even asked for help on this blog at one point to get ideas about how I could learn to say hello to someone. It seemed like a daunting task at the time, but has become less terrifying as I have learned how to communicate and express myself better. In this moment, I celebrated how far I have come in the last few years.

I have come so far and made such amazing progress that I just want to encourage everyone to keep going, keep trying, keep working on getting better. Looking at all of my progress is almost unbelievable. Things that were impossible are now normal. Things that used to make me feel uncomfortable can now help me feel the incredible love others have for me. These changes have truly been a miracle. One of the biggest miracles is that most people don’t know how hard these things used to be for me. They see who I am now and think nothing of these major milestones because it fits me now. I have become the type of person that talks to people and loves and feels love, and that is probably my biggest miracle of all.

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.

 

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.

Friends and Talking

I love the movie, Mozart and the Whale. The movie itself isn’t necessarily that great, but it is the most accurate depiction I have ever seen about how I feel. There is this part towards the beginning of the movie where the main character says, “I just never know what to say.” I feel like that a lot. I am not very good at talking. I don’t know what to say or how to say it, which makes conversations very difficult.

Sometimes I have a lot I want to say, but I don’t know how to bring it up. So I try to think about how I can shift the conversation to talk about what I need to work out, but by the time I’m done thinking about how I can bring it up, the other person is done with the conversation. A lot of times I think that’s why I don’t have much luck making friends. By the time I know how to talk to someone, they have already made a decision about who I am, and most people don’t change their first perceptions without a lot of work.

I hate it. I hate that I don’t know how to talk to people. Even with my best friend, I can’t bring up what I need to say. I feel like people get frustrated with me because I get quiet so often. It’s just that my mind is trying to figure out how to say something, while trying to process what is still going on, and by the time I’m ready to share what I have been thinking about, it is usually no longer a good time to say it.

There’s something else in the movie that really strikes a chord with me. The main character says, “People with Asperger’s want contact with other people very much; we’re just pathetically clueless at it, that’s all.” I am so clueless at talking to others. I want to talk to people, especially my friends, but I don’t know how.

I’m not really used to having friends. It’s only been in the last few years that I really felt like I had friends I could talk to on a regular basis. Growing up, the only friends I had were my sister’s friends and friends I had at activities I attended. Outside of those activities, I didn’t know how to interact with people.

So I always get anxious about talking to friends or doing things for friends or trying to make friends. It feels like unknown territory, which is scary because I can get hurt. I remember the first time I tried to make friends. I was 8 years old and in third grade. I was teased relentlessly. I didn’t quite know what I did wrong, but I knew I wasn’t wanted. That feeling has always stayed with me. Every time I try to make a new friend or talk to one of my current friends, that feeling comes back. I try to ignore it. I try not to let it stop me. Sometimes though, I just fall back into those feelings of being unwanted, of being hurt and vulnerable. I wonder if I’m a bad person, if there’s something wrong with me that makes me unlovable.

I have pretty amazing friends that make me feel wanted and loved, but the feelings haven’t gone away. I still need lots of reassurance that I’m doing alright and I haven’t messed things up yet. I hate that I need that much reassurance. I hate that I fall into thoughts of loneliness and anxiety and depression so easily. I hate that I have recurring feelings of abuse and teasing and the feeling of not being enough. I wish I could just trust my friends like I know I should. I wish I could tell my mind to stop thinking these thoughts. I wish I could just keep the feelings of being loved and wanted and feeling like a good person. I know that the things I have faced in my life have brought me to this point, and I’m in a good place in my life right now. Sometimes though, I wish I didn’t face quite so much because maybe then I could get these thoughts out of my head that cause so much heartache and anxiety.

Socializing

Apparently, I have become a master socializer… Me… The girl with autism… The girl that couldn’t make friends for 20 years because I was socially awkward and had terrible anxiety. To go from friendless to more amazing friends than I ever thought possible has been an interesting journey. It is interesting to look back on my life, to see the little girl that was teased at recess, that cried every night for just a single friend, that prayed and pleaded and hoped for someone to just talk to… To go from that to this… Is the most amazing feeling ever.

Last night, I went to an activity and talked to people and made friends, like it was a totally normal thing to do, like I was a natural. And I laughed and had fun and socialized and people looked to me like I knew what I was doing, like I was good at it. It was so wonderful and strange.

This world is hard. It’s loud and crazy and too rough and too much to handle and I struggle to breathe it all in. But I keep going. I keep trying. I keep pushing on and pushing through the hard things over and over again. And eventually, I get a day like yesterday when everything goes right, and I think, it all paid off, it was all worth it for this moment, this moment I have conquered.

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!