There Is A Reason

     Often times individuals who have an Autism Spectrum Disorder will be asked why they do particular things. Sometimes people think its weird and want to know why and sometimes people want to have better insight as to how the individual thinks. Given that I see things from both sides, I tend to over analyze things quite a bit. I mentally document each time I had a meltdown, what caused the meltdown and how far apart the meltdowns have been because I want to learn to prevent them and I want to have them increasingly farther apart. I primarily try to answer why meltdowns happen so that they don't happen in the future. After a few months of doing this I have come up with some conclusions. Most meltdowns have an underlying reason that may be deeper than we sometimes realize.
     First and foremost, each meltdown I have is typically triggered by one thing that is stressing me out. Once I have processed through that one thing, I begin to realize that there are other things underneath the surface that have bubbled to the top. This is when I have learned that it is time to stop talking about the things bothering me and begin to distract myself. If I continue to talk about things, I get into a repetitive circle that then causes more anxiety for me and thus more frustration and more crying. If I distract myself, I am then able to calm down, sleep on things and if need be talk to someone the next day about my frustrations. The meltdowns aren't always caused just by frustration, but sometimes that frustration comes from a subconscious level in which something in my routine has changed and I don't realize it. There have been two recurring examples that I have finally picked up on.
      Transitioning back to my dorm at the end of the day can sometimes be a real struggle. Often times when I come back to my dorm at the end of the day and my RA or my Resident Coordinator aren't there to check-in with, I begin to get irritable. I try to distract myself and unwind, but sometimes it is difficult. I always chalked this irritability up to the fact that coming back after a day of classes and settling into the evening was a big change, but it is so much deeper than that.
      I never viewed my mother as a stay at home mother because she has always worked. My mother has had her own business for almost 20 years and she is very proud of it as well she should be. Fortunately or unfortunately, depending on how you view it, she has worked out of our home for most of my life. This has always been extremely convenient when my brother or I have been sick and it was also convenient when my brother and I would get off the bus at 3 o'clock in the afternoon. Each day, when we got off the bus, my mother was there to greet us. A typical afternoon would entail getting off the bus, throwing our backpacks in the foyer, going to the bathroom and heading for the basement to check in with our mother. This happened for 10+ years and has since become an engraved habit that I subconsciously still follow today. Unfortunately it's hard to do at the dorm.
     I have recently realized that my need to check in with my RA or my Resident Coordinator at the end of the day has been my brains natural way of adjusting to a norm that is no longer a part of my life. I would greet my mother at the end of the day for many years. Now that I'm in college, I don't have a mom to go home to, tell about my day, and give a big to. Today I enthusiastically come back to my dorm and hope that I have someone to look up to and talk about my day to. This has naturally fallen on my Residence Life staff. When I am unable to do this, this leads to irritability because it is changing something that I have known since I was in 1st grade.
     Friendships and planning events have also been extremely difficult for me this year. For quite some time, my RA and I would think that I was upset because people weren't able to schedule things. We figured it was because I like having a set schedule and a routine. I would always tell ask people if we could do something at a particular time and the answer was typically, "I don't know what I'm doing yet". This would often times upset me because I thought people made plans. Unfortunately unwritten rules of society change.
     Growing up, I had a lot of trouble making and keeping friends. I always wondered why people couldn't hang out. My therapists and my parents would always tell me it was because I had plan things a couple of days in advance. I always had difficulty with this. When I was able to plan "playdates" in advance, my mother would typically ask me exactly what I was going to do when I had friends over. I learned to plan things because I had trouble picking up on how to entertain my friends. I liked having my friends over, but often times my brother would have to entertain them. Today when I want to hang out with someone I feel like I need to plan something and plan exactly what I want to do.
     Now that I am in college, things have changed. I meet with my RA/friend every other week to spend some quality time with her. I alway ask her what she thinks we should do a couple days in advance because I have been taught to plan. This past week she informed me that she wasn't going to put the time and energy in to planning something. I was taken aback by this, but realized after a discussion with her that it wasn't that she didn't care, but that it really doesn't have to be an event like I was taught. Simply having her door open and me having access to her and knowing she was there to "chill" was what she was thinking. For example, this would be a good time to do our own things, maybe chill in the same room, listen to music and talk on and off as we pleased. As a child, you have play dates, as an adult you relax or partake in leisure activities. Once again, this is an unwritten rule that changes.
     Often times I will get into deep conversations with people who I trust because friends share how they really feel and share there deepest darkest secrets. Interestingly enough I am realizing that isn't exactly how best friends work. Typically as soon as I trust someone, I dump all my personal life stories on them. I'll constantly ask how they are, if they are okay or what is wrong. I thought that is what defined a friend, someone who you could share your true feelings with. What I am learning is that this is not the case. Friends are people who you share a sense of humor with, you converse with in short simple give and take chatting. Yes, friends do share stuff, but it isn't as much of a word vomit as I like to think it is. Give and take, take a long time to develop the friendship. It's not something that you share your life story and your friends. There is more to life than struggles, it's about the goofy stuff we do, the quality time, and the memories that are made!

I Bet They Have Aspergers

"I bet they have Aspergers", I say when someone isn't very nice about something! "I bet they have Aspergers", I say when someone does something weird. "I bet they have Aspergers", I say when someone does something stupid. I don't like saying, "I bet they have Aspergers", but I do and it comes so naturally to me.

Every April is Autism Awareness month in which the big evil organization Autism Speaks spread awareness of individuals who have Autism. I can't stand the organization because they have a belief that individuals who have autism can't speak for themselves. In April you will often times see things lit up blue to promote Autism awareness. What other things happen during autism awareness month? There may be a few walks that raise money for this horrible organization that uses hardly any of that money to provide services for individuals who are battling the condition now. As one person said, "finding a gene isn't going to help me find a job".

You have the Autism Awareness month events sponsored by Autism Speaks, including walks, documentaries and PSA's demonizing autism. On the other side of this, when it's not Autism Awareness month, you have the large media outlets sharing horror stories of mass murders. It seems like the majority of the time, the individual who ends up doing the killing have Aspergers: Adam Lanza, Elliott Rodgers. Do they ring a bell? If your not hearing about this your hearing horror stories of individuals with autism who have gone missing or parents who have attempted to murder their autistic child: Issy Stapleton and her mother. If you have ever seen Autism Speaks documentary Autism Everyday, you have seen a mother discuss the want to driver her autistic daughter off the Washington bridge.  Then there is the story of the ice bucket challenge in which peers decided to dump feces on and individual who has Autism during his challenge.

Speaking of the ice bucket challenge, people decided to come up with this really stupid idea in which you do the Twizzler challenge. Two people eat a Twizzler like they are Lady and The Tramp. How is that difficult? How does that show the pain of Autism? Then again, I don't want to show the pain, but who is going to want to donate money to such a good cause if eating a Twizzler is so simple? Why should I be upset over such silly things? Why am I upset that the challenge isn't showing the pain of autism if I am sick and tired of Autism being shown as such a miserable condition? Our world is really messed up.

We have all these problems in our society and all I want to do is share with the world how happy and productive people who have autism can be in our society. The fact that my parents were told that I would live in a group home and that I'm going to college. People who have autism have been great inventors. No one ever talks about those who have been productive. Oh yeah they do such as Mark Zuckerberg and Steve Jobs in which the media portray them as mean and nasty men who are successful, but no one gets along with. Then we have those who think the reason we don't have friends is because we don't want them. go watch the Social Network, why don't you?

Then there is me, ME of all people who want to show the world what Autism really is and then I constantly stereotype my own disability, I mean my own strengths and weaknesses. People with autism are humans that try just like others to connect with others, to maintain a job, to be happy. People with Autism are bright, intelligent people who have a passion for what they do. Yeah we have our weaknesses, but doesn't everybody?

I don’t wonder if people have Autism because they are acting out, I wonder if people have autism because I want to connect with someone.

What is a true friend?

      "Mom, what is a true friend then?", I often ask! Back in middle school I was still learning what it meant to be friends with someone and that there is a difference between friends and acquaintances. My mother would often times tell me that I didn't have any "real" friends, but some day I would developed a true friendship. I would often times reply with, "Does this mean Emma is a real friend?" Emma was probably the first friend I had; she was the friend I met in daycare and the friend who would come over every Christmas Eve to decorate cookies and exchange gifts. "We've known each other since we were 6 months", I would often times here Emma exclaim when she introduced our relationship to a stranger. As we grew older though, our interests grew apart and for the last couple of years we haven't had Christmas Eve together.
       Today I still battle with the question, "who is my friend, and who is an acquaintance?" I often times find someone that is nice to me and that I trust and I automatically think they are my best friend because they understand me. Unfortunately, over time I have realized this is not the case and these relationships end up revolving around me and my emotional well-being. I end up sharing my deepest darkest secrets and I end up just venting to these individuals which turns into depending on these individuals. I know, when you think of a friend, you think of someone who you are to depend on as we are all somewhat dependent on others. It's human nature to depend on others, but more in a social sense, a sense in which you are able to develop common interests and relate to each other on a more informal level that I don't totally understand yet.
      People often say that individuals who have Asperger's syndrome don't understand empathy, but its much the opposite of that. When I was younger, my mother once shared an article with me that described autism as a condition in which we actually feel the emotions of everyone around us and therefore look like we aren't empathetic because we shut down to deal with our own emotions. I really didn't believe that was the case for me, but as I learn more about myself I am realizing this is true for myself too. I've always been someone who hates to see others upset. I continuously feed off of the emotions of others and worry about how others feel to the point of anxiety. "Are you mad at me?" and "Did I do something?" are often times questions that I ask. Given these struggles with understanding who are my friends versus acquaintances and how I interpret empathy along with my ability to understand these concepts, I am better able to understand my relationships with others.
      Typically the people who I value as friends, are those who first and foremost understand me for who I am and are nice to me. Secondly, I love the people in my life who I know there particular interests. For example, I have one close adult "friend" who I love because I know how to please her. If I were to ever get a gift for her, I would get something that had to do with sock monkeys, the color purple, or something zebra print; A McDonald's sweet tea would always do the trick too.
      A lot of times people have talked about the different types of love and I definitely think my type of love is the giving type. I show my love by giving someone something that I know they will like. Often times this makes things harder to truly build those relationships because I don't always have the strongest conversation skills and I often times monopolize the conversation. The problem is that people want to be cared about and sometimes that means being able to put yourself in their shoes and understand emotionally how they are feeling which I don't always get. I also don't know how to really strike a conversation about something with someone without telling a story. Really, what do people talk about? I love telling funny stories and to be able to have something to talk about you need stories, but then conversations change and then I feel lost. I often times have trouble with change and when conversation changes, I don't always know what to add. Sometimes I'm still focused on what I wanted to add to the last conversation. Friends are such a complicated matter.

Goals and Growth

     I've been in school for two weeks now and I have already learned so much. I've even learned a lot about myself. Guess what? The meltdowns have been a little bit closer together, but it's not anxiety, it's growth. I'm going through a social/emotional growth spurt again!!! I'm learning so much and I have so many goals that I'm working on right now. Some of the goals that I'm working on, include  meeting people half way,  building social and emotional stamina, and being able to read my body more clearly and learn new copings kills.

     Ever since I've been at college, I've been extremely socially active. I go to events on campus all the time, but I always seem to go alone. The actual activity of going has kept me going; it hasn't been the friends that I've made. This summer I met with my Vocational Rehabilitation counselor and we set some goals. One of the goals we set was to meet people half way when it comes to what activities I participate in. Last year, I would often times eat alone because I wanted to eat on my own time and I would always go to events I wanted to go to, not events others wanted to go to. For example, I never wanted to go to the gym at 8 o'clock at night, but I'd love to go see a comedian. Sometimes my pod mates would want to go to an event, but it would be when I had to get school work done. This year I'm finally going to events with my pod mates. Today we're having a little league party and watching a game on television. I'm not a baseball fan, but I want to be with my people.

     A large goal that I have been working on is building social and emotional stamina. I've always been an outgoing people person, but I also like to go back to my room to reboot sometimes. In past years I've been able to do that. This year, it hasn't been as easy. I started my first part-time job as a full-time college student and I'm involved in a lot of clubs on campus. I'm also mentoring new students. It's all been great, but it doesn't give me much free time. When there is an event in the evening as there has been every night since I've started, I always want to go. Sometimes though, I end up melting down from exhaustion and the tears just come. Our school has an even every night for the first 3 weeks to get us acquainted with campus. I hate saying no to the events because I don't want to miss out on anything. This in turn has run me into the ground and then I ask myself why I'm crying for no reason at my age. My RA has been a tremendous help in helping me understand that I am going through a lot of changes. Among those many changes are of course the busy schedule, but most of my friends have graduated and my parents are in the middle of a big move.

     Coping with all the changes and excitement has been pretty tough, but I'm learning how to read my body a lot better. I've always been someone who over analyzes everything so I'm acutely aware of how my body works and how Asperger's affects me. I've learned a lot of coping strategies. When I work at the ice cream shop, I try to work on tasks such as stocking things instead of doing something that requires multitasking when I'm overwhelmed. In school this year, I haven't been reading my body well enough to realize that I'm exhausting it. I'm trying to teach myself that sometimes i need a break. After the second meltdown I had this year, I finally decided that I really do need to say no to things. Finally, last night there were 2 or 3 different events I wanted to go to. They were all back to back. I finally decided that I could go to all of the events, but I needed to go for short durations and take breaks if I were to make it to the end. I got to spend quality time with some friends I haven't seen for a while and then I got an hour break before the last event. I rocked it last night!


     As the year moves forward, I'm sure I will learn so much more about myself. One of the biggest things I have learned, is that a nice walk in the fresh air can help with anything. I can't wait to see how God allows me to grow over this new school year! :)

A shield: fixation

    I am a young woman who just so happens to have Asperger's Syndrome and a Generalized Anxiety Disorder. I also, just so happen to be in the process of moving. These two things don't go well together at all and have caused me to be fixated on everything. Given that I have Asperger's, I typically do get fixated on stuff, but lately I've been fixated on EVERYTHING.

     I am not always fixated on things to the extend that I am right now, but the fixations I have had lately are almost like a shield against all the changes I am going through: new bed, new room with purple walls, heck even the new house in general. I also tend to feed off of the stress of everyone else in my family too. The fixations aren't bad, but they are there and driving everyone crazy. I rather be fixated than anxious. If I am fixated, I can go to a happy place

   Two weeks ago, I was fixated on 4th of July. this one is a given since we have a party at our house every year. This year will be our last because, like I said, we are moving. I worried up until the actual party wondering if we would actually have anyone showing up. We ended up having 45+ people over to our house and we had a blast. As soon as the party was over, I was fixated on the next thing, Arts Fest.
 
     The previous week I was excited that a family friend would be coming to town to visit for a day and to see Art's Fest. Sadly it rained the day she was supposed to come, but I will see her in August. Not only was I fixated on having the friend over, but I was fixated on getting to see the tents and getting to have Art's Fest food: Scott's Roasting, Cowboy Kettle Corn, and lemonade.
 
      Once Art's Fest got here, I was fixated on the idea that I was going to see KJ on Sunday. KJ is a singer/guitarist who I grew up listening to at camp and she was coming to my neck of the woods. I got to see her and I even got my picture taken with her.

      Last Tuesday, I was fixated on the fact that I was supposed to be going to a family friend's house for dinner. I found out on Monday, that my father had to go out of town so we may have to reschedule. I was not having any of it because I was looking forward to dinner with friends and I don't like my schedule to change.
 
     When we finally decided we were going to the friends' house, I was fixated on the fact that we needed to bring and play Mexican Train Dominoes. My mother had to remind me a couple times that there were other younger kids there and it may be a little to chaotic for Mexican Train Dominoes.

     I'm always fixated on Frozen stuff. In fact my mother has to reel me in when i see something revolving around the snowman Olaf. My mother even made me a homemade Olaf blanket for Christmas and I still get pulled in towards the Olaf blankets at Walmart.

     At work, I'm fixated on everything to. As soon as I come in the door to work, I have to check to make sure all the cups are stocked, coffee drawers are filled, spoons dispensers are filled, and lastly write down what dates I need to take off for Dr. appointments or in the case of this week, write down my last day of work for the summer. God forbid I go and scoop ice cream until that was written down.

      The fixations aren't bad, but they really are a shield to protect me against the anxiety. Sometimes when i fixate, I feel fortunate. Other times fixations can get me upset. For example, if I fixate on something in my schedule and then it DOESN'T HAPPEN, that can be very bad. Maybe I just have a love hate relationship with them, but a few have saved my sanity.

I feel Autistic

     Sometimes I feel normal and sometimes I feel autistic. Most days, when I am my cheery self, I feel normal. When I am overstimulated, I often feel more autistic. It's not easy to explain, but some of the feelings make me happy and some of the feelings make me frustrated.

     Today, I felt autistic. I didn't want to talk. I wanted to stare in space. I wanted to stim. This past week has been a really long week, and it has been hard for me to handle. It's been a good hard, a challenging hard, but hard none the less. At 3:05 during work, I finally melted down. I'd already promised myself this summer at work was going to be different and I wasn't going to shed a tear. Well that planned got messed up today. By 3:15 I was all better and back on the floor working.
      If you notice the beginning couple sentences of the previous paragraph, that's kind of what my thinking is like when I feel autistic. I don't want to talk and my answers are short and sweet. If I can, I try to get away with one word answers or yes and no answers to questions. God forbid, I answer more than that, I start breaking out in tears. Tears are frustrating, zoning is not. When i can zone out, I can think about my own stuff, not worry about the expectations of the world. This makes me feel happy. I begin to calm down.
     When I feel autistic, I also begin to fixate on things more. This week, my fixation is arts fest of course. I am determined to make it to arts fest. When I got in the car after work today, I started talking to my mom. I used as few words at a time as I could and I still broke down again. When expressing myself and reassuring myself about art's fest, I finally broke what I wanted say down to, "Sunday". My mother replied, "yes, we will go to arts fest on Sunday". I was happy. The short one word phrases are always a noun.
     Over the years, I have had experience working with kids who have autism. Often times they will say what they want at which point we coax them to say, "I want...". With my understanding of the way I think is that the child is just saying what they can to get there point across without exhausting themselves. It may not be that they don't know to do it, but that it's exhausting. The child is most likely overstimulated by the world around them and trying to process what they want. Once the child goes into meltdown, they have lost patience with trying to express their needs and wants. It's something so simple, but yet it's so hard to understand. 

Charley

     Charley died! Charley is no longer on earth with us and it's really hard to believe. Two years, I didn't really get emotional about stuff outside of my own little sphere. Just last week, I was talking to another individual who has Aspergers and we were discussing how we reacted to particular events. "I don't cry like most people do when someone dies", I said. As I've gotten older, it has gotten harder. Lack of emotions can be one advantage of having autism. 

     I was accepted into the occupational therapy program at school in December and I start in August. I've been checking my school email, on the school portal, everyday this summer. Along with your school email are various other things including announcements. "Student Death Announcement", read one of the announcements. "Seriously, again?", I thought. We have had a lot more deaths at my school in the past two years than is normal. It's sadly one of those things you get used to. I don't know if it was coincidence or not, but I just felt this feeling in my head or in my heart that when I checked the announcement, it was going to be someone I knew (not typically the case). In fact it was.

      It was one of the first friends I made my freshman year in school. We haven't been really been close for a while given that we are in different majors and have different classes and interests, but she was one of the first. Charley was quirky, quirky in such a way that was so awesome! Charley had a hilarious shirt I remember that had a big cat on it that frowned. The caption surrounding the cat was, "this is my happy face". I'll never forget the day Charley was sitting in the common room as my mother and I walked in, my mom having never met her, she stood up, turned around and introduced herself wearing a wonderful Thor helmet with a plastic toy axe! This is just a glimpse into the life of Charley. 

     As my freshman year progressed, we began calling her chuckles, because her best friend, an RA was nicknamed Smiley given her last name was Miley. Eventually her name became Narles, and I'm not really sure why, but it stuck. That's what we called her. I remember one evening, we decided to tackle the boys and convince them to do face masks with us too. Charley will truly be missed. I rally wish we had more time with you Charley. It's really hard to know you are gone. :(