Saturday, March 26, 2016

Delayed Diagnosis

     I was diagnosed with Asperger syndrome when I was 19 years old. When I tell people this, most of the time, their question is, "Why did it take so long for you to get diagnosed?" I have several theories to answer that question, and I actually think it was a combination of things. Today's post will talk about those factors.
     First of all, people with Asperger's are usually diagnosed later in life. Because we are on the higher end of the spectrum, our characteristics are less severe and, therefore, less noticeable. My parents and teachers definitely noticed I was different, but they didn't know it was because of Autism. I was the one who learned about Autism from working with young children, and I noticed similarities in myself and them.
     Second, one characteristic of Asperger syndrome is average to above average intelligence. Most of the time, a child is recognized as having a condition because they are having trouble in school. However, I always had good grades and never really had problems with school. Obviously, being on the spectrum, I had social and emotional problems, but they were thought of as "quirks" or "just who I was". I did get in trouble quite a bit because some of my teachers didn't understand me and how or why I did certain things. Eventually, everyone just came to this understanding of "that's just Kelcy".
     Third, Asperger syndrome, which is my official diagnosis, is a relatively new diagnosis and now an obsolete one. Hans Asperger first described Asperger syndrome in 1944; however, it wasn't an official diagnosis until 1994 when I was already 4 years old. Now, I was diagnosed in 2009. As of 2013, they changed the diagnosis and the criteria. It's now just Autism Spectrum Disorder, and there is a range from mild to severe. Asperger syndrome doesn't exist as a diagnosis anymore.
     Fourth, I am a girl. Autism presents more often in boys. On top of that, it is recognized less often in girls because people put more expectations on girls to fit in socially and have better social skills. Girls are expected to know how to talk about their feelings and make other people feel better. They are expected to be the nurtures and social butterflies. They are expected to go into professions that involve people skills and dealing with other people. I understand that is slowly changing, but it was that way for a long time. Autism is still less recognized in girls than boys.
     Finally, my mom pointed out the other day that I grew up in a small town with a tight-knit community. Everyone knew and looked out for each other. I was pretty well protected and sheltered from many things in our little community. We pretty much had our routines, there were no strangers to me, everything was familiar. It would explain why the characteristics of an ASD would be less noticeable until I was older.....like when I moved off to college. Even though I was only 30 minutes away from home, I left that familiarity. I left everyone I knew, the routines, the protection of the community I had known for almost 18 years. It's when my ASD characteristics became so much more pronounced, interfered with my life, and I sought a diagnosis.
     I've been asked a couple of times if I was mad or upset I wasn't diagnosed earlier. That maybe I could've gotten services or at least known. No, I'm not mad or upset. Also, I don't blame anyone. For the most part, I'm glad I wasn't diagnosed until later in life. I wouldn't have understood it as a child anyway. Also, back when I was in school, I feel like the popular thing to do was to stick a label on you and put you on medication. Well I didn't need medication....or a label. Plus, the "services" I would've had at my disposal were limited and probably wouldn't have helped anyway.
     I'm glad because my parents raised me believing I was like everyone else. They had high expectations for me and always pushed me to do my best in everything I did. I was expected to have social etiquette and manners.They understood I did things differently, and that was ok. Growing up, I knew there was something different about me; though, I didn't know what it was. But because of the way my parents and family treated me, I knew it didn't matter. I was no less than anyone else.
   

Saturday, January 16, 2016

Autism in Love

     This post is inspired by the documentary by the same name, Autism in Love. It premiered on PBS and can be purchased to stream online, like from Amazon. I've also been wanting to write this post for a while and just haven't had time. However, since my recent graduation from college, I have more time and now am ready to write this.
     At the time I'm writing this, Tommy and I have been together for almost a year. It has been quite a journey getting to know each other and building our relationship. We've grown as individuals and as a couple. We've seen each other at our best times and at our worst times. Being on the spectrum presents some unique challenges to our relationship at times. Never anything we can't handle and work through. We both know each other's pasts and deepest secrets and yet.....we're still together and going strong.
     My past in relationships is not a good one. It's filled with heartache, abuse, unfaithfulness, and rejection. It broke me. It broke my trust in every other guy I tried to date. It broke my self-esteem to where I felt I didn't deserve a good guy to love. It broke my faith that a guy could ever love someone like me, with everything that had happened to me and all my flaws. I was single for four years in which time I worked on myself. I got to know who I was as an individual, worked through some of those negative feelings, and dealt with my broken past. Then I met Tommy.
      Even though he may not have known it at the time, I knew there was something different from the very beginning. I don't believe in love at first sight, but I knew something was there. People tried to warn me, told me to be careful. I didn't want to listen. Surely they must be wrong. I just knew that if I stayed true to myself, who I was, and what I believed in, I'd have nothing to worry about. I was right. He tells me often how I changed him and his way of thinking. However, I want him to know how much he changed me too.
     He accepts me the way I am: flaws, past, and all. When he found out I was on the Autism spectrum, he treated it as another fact about me. He didn't flinch away. He didn't get weird about it. Most importantly, he didn't treat me any different, and he didn't leave. A couple of guys I've dated, once they found out that I was on the spectrum, just left. Stopped talking to me, didn't hear from them again. Not Tommy. He's gone above and tried his best to understand everything that comes with having a girlfriend on the spectrum. I couldn't ask for anything more.
     I have also feared that if being on the spectrum didn't turn a guy away, my past would. I used to feel unlovable at times. I used to think that no good guy would want to be with me if they found out the things that had happened to me. I thought that maybe they would blame me for what had happened. Tommy and I have both shared our pasts with each other. He proved that not only does he love me despite my past, he vowed to never bring it against me and to never be like the guys in my past. He showed me that no matter what had happened to me, no matter what any of those other guys may have said, I am lovable. I am beautiful. I matter. I mean the world to him.
     He taught me how to trust again. I hadn't realized that in addition to not being able to trust, I had also built up this enormous wall. Every time I shared something else personal, every time I opened up, the wall came down just a little bit. I was surprised, however, to discover just how big I had built that wall. All these fears and insecurities I had, secrets I withheld, being scared of physical contact. He's proved to me time and time again, each step we take, that he's not like the rest. He's not like the ones I've had in my past. I was right from the beginning; he is different. This time is different. He respects me and listens to me. He tries to understand, and we communicate with each other in a way that I've never been able to communicate with someone before.
     My mom used to tell me that when I found the right person and was in love, I would just know. I never knew what she meant until I met Tommy. She was right. I just knew. That little something inside me telling me this one was different. There was something special about this one. I love him with all my heart, and he means the world to me. I may have a hard time expressing myself sometimes, but I want him to know just how much he means to me and how grateful I am that God brought us together.

Saturday, July 18, 2015

Working with Kids When You Have Sensory Issues

     In previous posts, I've written about how working with kids and having autism can sometimes be a challenge. This continues to be proven in my current job at the preschool I work at, and I continue to find ways to overcome and compensate for these difficulties. 
     Two of the things my preschool kids love to do is play with shaving cream and paint with something called Puff Paint. Puff Paint is made with shaving cream, glue, and food coloring. These two things are hard for me to do with the kids because of my sensory issues. I don't like stuff stuck to my skin, especially on my hands. Both shaving cream and glue feel very weird to me. I especially don't like glue. It's sticky and messy and hard to get off. Shaving cream isn't as bad, but it's still messy and feels weird. 
     One of my coworkers asked me the other day exactly why I didn't like the feel of these two things. What specifically about them did I not like. She loves doing these activities and loves the feel of them. I can't really point to the exact thing that causes me to avoid touching these things. I can't really fully explain most of my sensory issues, especially touch. It just feels weird. I don't like it. Something in my brain is wired differently so that when I touch these things my brain says "That's not right. Don't do that." Logically, I know there's nothing wrong with these objects or substances, but logic doesn't seem to matter with autism and sensory issues. My system is still going to react negatively to these stimuli. 
     Sometimes when people find out I'm sensitive to one or two things, they start asking me what else I'm sensitive to. Some people don't understand how I can be sensitive to certain things but not other things. One person couldn't understand that I don't like shaving cream, but foaming soap doesn't bother me. It's because those aren't the same texture. They don't feel the same; not even close. 
     Be sensitive to someone with sensory issues. Don't tell someone with sensory issues that their difficulties don't exist, they're just in their head, they're weird, or they don't make sense. Be kind, try to understand, and learn from people with sensory issues. It's hard enough for us as it is. Don't make it harder. 

"I live in the same world you do; I just experience it differently. I am a human being with feelings, just like you; I just express them in my own way." ~Me~

Sunday, June 28, 2015

Eye Contact: A Personal Victory!!!

     Autism is a life-long condition that currently has no cure. There are treatments and therapies that can help individuals improve or overcome some of the symptoms of autism, but it never truly goes away. Sometimes progress is slow, but those little victories can be monumental for some with autism. Even though I have high-functioning autism, I still have my share of personal victories of overcoming my autism. 
     The most recent one was last night. I've been with my boyfriend, Tommy, for a little over 4 months now. Naturally, as relationships do, we've grown closer together and have gotten more comfortable around each other. Last night, we were having one of those intimate moments where we were talking face to face. One of those really close and special moments. During these times, I've always been aware that he looks, or tries to look, into my eyes. However, I've never been able to meet his gaze. Now, I've written a post on here in the past about why eye contact is difficult for people on the autism spectrum, or at least for me. I always look at people's mouths 1) because it makes it look like I'm making eye contact and 2) because it helps me understand what people are saying. Sometimes, in the past, I've tried to make eye contact but could only hold it for a few seconds. Last night was different though. 
     Last night, I decided to try an experiment. Last night, I decided to be brave. For the first time since I can remember, I met someone's gaze.....and held it! I wasn't looking at his mouth or his nose or the top of his head but into his eyes! I noticed something.....I didn't feel anxious or awkward or overwhelmed or confused or anything like that. I don't think I can fully explain to you what I felt, but it was good. Even though I did see a lot of emotion in his eyes, it wasn't overwhelming. I seemed to understand them all. I was able to hold his gaze for maybe 15-30 seconds (which is a lot compared to 1-3 seconds before) before I would have to look away. I would regain my thoughts and composure and then could meet his gaze again! This happened 3 times! 
     We ended up talking about it later. He thanked me for trusting him that much to step out of my comfort zone and try something like that. I swear, I almost started crying tears of joy because I felt so good. You see, "typical" people take this kind of stuff for granted. It's not that easy for us. Every obstacle we overcome, every triumph we gain, every little victory we have feels huge. Overcoming the challenges of autism means being able to connect better with the people and the world around us. For me, I didn't just make eye contact with someone. I connected with him on a new level, a level I've never been able to do before. That's why we celebrate. 

"I live in the same world you do; I just experience it differently. I am a human being with feelings, just like you; I just express them in my own way." ~Me~

Saturday, June 20, 2015

Oh Yeah, I Have Autism

     I've known for a while that I'm on the autism spectrum. I've had an official diagnosis for a little over 6 years now. Many people tell me that they would never have guessed that I have autism. It's because I'm on the high-functioning end of the spectrum, and my autism is different than those on the severe end. There are times when I, myself, forget that I have autism. Of course, I don't mean that I literally forget. I just mean that, at times, it affects me less than it does at other times. 
     Then there are times like the other night, when I'm reminded that I am, if fact, on the autism spectrum. In certain situations, it's possible to see the defining characteristics of autism or to see a classic autism behavior or response in me. The other night, no matter how much I tried to reason with myself and be calm, autism hijacked my brain and shut it down. 
     You may know that people with autism like to have routine and rituals. Any changes to these routines bring anxiety, confusion, and fear. You may also know that people with autism can get attached to certain objects. This story starts by telling you that I sleep with a sleep mask. I do this because I can't stand any light when I'm trying to sleep. I can't make any room pitch black, especially when the sun comes up. So...sleep mask. I sleep with it every night. Also, I've had this thing for years. It's starting to fall apart. However, do I throw it out and get a new one? Nope! I like that one, and I'm used to it. 
     Well....the other night, I couldn't find it. I tore up my entire room trying to find it, getting more and more upset as time went on. This is where I tried to reason with myself. "Just go to bed without it. It'll be fine for tonight." However, every time I thought about doing that, my anxiety would only worsen. I can't fully explain to you why the thought of going to bed without my sleep mask for one night gave me such anxiety, but it did. It was a change in routine. It was the fact that I couldn't find something that I needed/wanted. It didn't help that I was exhausted because it was late at night. It was also the end of the week, and I was exhausted from work and summer school and everything else. I eventually became somewhat hysterical from what I remember, which is kind of hard because when I get like that, everything becomes a little hazy. I was searching frantically, crying, and the only thing I could manage to say over and over again was "Where is it? I want it." When I finally found it, I was so exhausted and all worked up that I laid on my bed and cried until I almost fell asleep. 
     Ladies and gentlemen, welcome to autism. This is something that can happen in the face of change, exhaustion, and anxiety. It happens to me, and it happens to others as well. Just like it was hard for me to reason with myself, it's very hard/near impossible to reason with someone who is in a meltdown. Anxiety takes over the whole person, and it's a downward spiral. Some people may read this and not understand it at all. They don't understand how something "so small" can trigger something "so big", such as a meltdown. But it can. For us, those things are not small. For us, those "small things" can trigger emotions we may have a hard time interpreting and expressing. They can trigger responses we may not know how to control. We end up crying, shutting down, or lashing out. Maybe if you saw the world the way we see it, those things wouldn't seem so small after all.

"I live in the same world you do; I just experience it differently. I am a human being with feelings, just like you; I just express them in my own way." ~Me~

Tuesday, May 12, 2015

Autism and the Dulcimer Festival

     Hey everyone! Sorry I haven't posted in a while. I've been so busy with life haha. I've had school, finals, went to a concert, and went to a dulcimer music festival. Actually, that last one is what I'm going to talk about today. 
     This last weekend, Tommy (my boyfriend) and I went to Glen Rose, TX for the 34th Annual Lone Star State Dulcimer Music Festival. We had a blast! My friend Wendy, who I met at Erin's wedding, was the one who told me about the festival. She was also there, and we became her unofficial roadies LOL. This festival consists of two full days of people playing music on the stage in the middle of the park, contests, merchandise selling, raffles, dancing, workshops, and jam sessions.
    After a crazy first night of getting in at 12:30am and sleeping in Tommy's truck, we found Wendy. We had actually been parked next to her the whole time haha. We had some drama with the front office and our tent situation. Long story short, I ended up staying in Wendy's two-room tent with her, and Tommy slept in one of ours. That craziness and change in plans is not a good start to a weekend for a person on the spectrum. However, it got better after that.
     We had a great time helping Wendy with her merchandise stand and enjoying the festival. However, because of my autism and the kind of person I am, I reach a point in my day where I am just done...with everything. I've been around people too long or done too much work that I'm just mentally done. My brain starts to shut down. I feel like a zombie moving around, only half aware of what's going on around me. I think that's how I must look too because some people notice it. I don't think Tommy knew exactly what it was, but he knew something was up and would as if I was okay. Wendy knew though and could tell I was done. She recognized it because she gets the same way. 
     Day 1 wasn't too bad. I got to that point, but it wasn't until the end of the day. I was able to put myself to bed and get some sleep. Day 2 was harder. I hit that point earlier in the day, about mid-afternoon. You have to understand that when I reach this point, I don't like to be touched a lot. I don't like to answer questions or talk a lot. Anything that requires a lot of mental effort is out of the question because my brain is just not working fast enough. I get irritated and frustrated very easily. Poor Tommy was on the receiving end of much of my irritability that day, and it wasn't his fault. He's very much a physical person. That is, he shows his love, affection, and concern through touch (hugs, rubbing my back, holding hands, etc.). That's very different from me. We've had to compromise.
     On that 2nd day of the festival, the more withdrawn and upset I seemed to get, the more he wanted to comfort me. The more he did that, the more annoyed I got because I didn't want to be touched. However, because I was in this state and my brain wasn't working properly, I couldn't find the words to adequately describe to him what was going on without being rude. All my mind was say was, "STOP TOUCHING ME!" I didn't want to yell at him so I said nothing. I eventually had to go off by myself where I could let my mind rest and reset. When I came back, I was able to coherently talk to him about what was going on and how I felt. He apologized and said he had no idea I felt that way and that he was making things worse. He also said he understood and agreed to give me my space when I needed it. I knew that communicating my needs was what I needed to do. It's just that sometimes it takes resetting my brain in order to do so. 

"I live in the same world you do; I just experience it differently. I am a human being with feelings, just like you; I just express them in my own way." ~Me~

Monday, April 20, 2015

Wedding Weekend!

     I apologize for being away for a while. It's been a while since my last post, and that's because my life has been crazy busy. The end of the semester is coming up, projects are due, I've been doing stuff with the social club I'm a part of, I have a boyfriend, and my best friend, Erin, got married. Wow! Now, this last weekend, I was sick. Ugh! It never ends! Haha but I found some time to write this today, and I want to tell y'all about Erin's wedding! But from the perspective of someone with autism.
     Weddings are great and fun, but they can be tiring and a little overwhelming too...even if you're not the one getting married lol. I knew going into that weekend that I would be around a lot of people I didn't know. I knew that although I was going to Erin's wedding, I wouldn't get to spend a lot of time with just her. I knew that I'd be sleeping in people's houses that I didn't know. There were just so many things that I just wasn't sure of, and that made me nervous. However, I was super excited because I was getting to see Erin, whom I don't get to see very often. I was happy to get to be a part of this joyous occasion in her life.
     It was hard though. I'll admit that while it was a great time and I would do it again, I was glad to go home at the end of the weekend. The weekend was full of running around, people I didn't know, no alone time to process things, changes in plans, and high emotions. By Saturday night, I was just a bit overwhelmed haha. Saturday is when plans changed. Hey, it happens. However, by that time, I was tired (physically and emotionally), hungry, and completely overstimulated. With other factors that played into that change of plans, I nearly had an anxiety attack. Good thing I have really good friends who understand and are willing to help me out! On my way back to where I was staying the night, which was 2 hours away, I had myself a good meltdown. I'm pretty sure I cried for a good hour and a half of the 2 hour drive. Sure did sleep good that night lol. Like with many autistic meltdowns, people have to understand that it's not just one thing that sets them off. It's an accumulation of things that pile up and eventually become to much to handle, leading to overstimulation or feeling overwhelmed. 
     One of the best things about that weekend, though, was I got to meet some of Erin's other "sisters". They were some pretty amazing women :) I found it easy to talk to them, which is saying something for a person on the autism spectrum. I don't really know what else I was expecting though LOL. It's almost like there was this automatic acceptance of each other. Like, we didn't even know one another but since Erin was our friend, we were friends too. I liked that because I feel like I don't get it very often from people I've just met. For them, my past didn't matter. It didn't matter if I had bipolar disorder or autism. It didn't matter if I did things differently or that my social skills were a little lax. They accepted me as a friend and "sister" anyway. Also, I felt I could just be myself around all of them without having to try so hard to be "socially acceptable" or "normal" or "typical". Pick your term. Sometimes when I meet new people or am around certain people, I feel like I have to try too hard. Then there are those that I know I can just relax and be myself (You know who you are LOL). Also, I have to give some credit here. I was thinking about it, and I realized just how easy it was for me to talk to those women that weekend. Part of that had to do with their personalities, but part of it had to do with my going through RUSH. Going through RUSH really brought me out of my shell and gave me confidence I didn't have before. I realized that if I hadn't gone through RUSH, I may not have talked so openly with those women that weekend. I'd have been happy to keep myself, or I'd have been afraid to open myself up to people I didn't know. However, after going through a process like RUSH where you're meeting new people all the time, meeting a couple of new people that weekend was a breeze! Lol Also, being in club has taught me that opening up to people won't kill me haha. Some people are willing to listen, and they can be trusted. Just because your past is a little rocky doesn't mean you're unlovable. Just because you're a little different doesn't mean people won't accept you.

"I live in the same world you do; I just experience it differently. I am a human being with feelings, just like you; I just express them in my own way." ~Me~