This post was originally published at http://takealeftatthemoon.blogspot.com/2012/04/take-left-at-moon-to-i-wish-i-didnt.html and is reprinted here with permission from the author.
Take A Left At The Moon To: “I Wish I Didn’t Have Asperger’s” #AutismPositivity2012
I wonder who you are. I wonder if you’re okay. The Google Search, “I Wish I Didn’t Have Asperger’s” that was typed in by you and has spread across Aspie blogs and friends of Aspie’s blogs, and most probably Facebook and such, to be addressed today in this Flash Blog April 30th, event. I hope that you will see at least some of these posts and not feel so alone or so sad about being on the Spectrum. I can only write this from my perspective. My experience with being an Aspie and this is what I am doing with this post. By sharing my experience I hope it will help you not feel so alone.
Sometimes people who are not on the spectrum can make people on the Spectrum feel very “other”, like outsiders, misfits, wrong and bad for being different from the “norm”. But there are wonderful people out there who are really worth getting to know because they will think you’re really worth getting to know too. I don’t want to say that being an Aspie has been an easy ride. It hasn’t. And I’ll write about that a bit, but then I’m going to also get to the positive side of being an Aspie, at least for me. And I really hope none of this sounds like a simple pep talk.
Part of me thinks I understand where you may be coming from, but I’m only guessing because I do not know you at all. Sometimes I think that too; that I wish I didn’t have Asperger’s. Not because I’m unhappy with who I am and who I am becoming, but because it can be downright difficult. I have sensory issues that keep me away from events that I’d like to be at with my family members.
Like just yesterday, my son attended a Frisbee competition with my other family members, but I knew it would be too loud (it was inside a stadium and there were loud horns, loud announcers, people yelling, etc.), and I couldn’t. All I could do was wait outside and take pictures of the outside of the stadium because I knew my senses would have become totally overloaded and I would have been a mess. It would have led to stress and feeling angry and to heart palpitations and other problems, perhaps a bit of a meltdown later on. It’s difficult being on the outside of things when you want to be a part of what’s happening with those around you.
When I was growing up I was ridiculed quite a bit. I was bullied. I was beaten up. I was teased. I was frequently misunderstood and frequently misunderstood others. I didn’t dress like everyone else, I didn’t talk like everyone else. I frequently felt alone and depressed and very, very angry. Angry about being treated so poorly and angry that I didn’t understand how to change that. Angry that I was different. I was not teased just from other children, but adults (teachers), and sometimes even relatives did a bit of teasing and making fun of me. It was freaking hard. I did not fit in anywhere. Really. I did not fit in anywhere.
I was always nervous, even when I stayed at the home of a friend whom I had known for a few years. I was always nervous. It was very difficult being “on” all the time with no down time and wanting so badly to be able to fold myself back into my own schedule with my own things. There was rarely security outside my room and outside the places in nature that I would go to feel comforted and connected.
By the time I got into college I was doing a bit better in so far as I was learning to navigate through the NT world. I developed something I call: Transparencies or Prosthetics, while I was growing up. I would put on the “skin” of someone else and then let that personality guide me through my actions and speech. I basically was sort of mimicking what I saw TV and movie stars doing or someone from around me. I didn’t want to be them, but I did want to be able to help myself speak and move about with the group I was at and get along with others and not stick out like a sore thumb, as they say.
But college, well, I got good grades in the classes I could handle being in and was even well liked by my classmates that I was involved in group activities with. I was smart and they liked having me help in their group because it insured the group a good grade.
I also made a friend who was very helpful with me being able to maintain a job on campus at the library. He was really understanding about me and thought I was very shy and such, so when people needed help and I suddenly could not do what I needed to do due to being overloaded by the questions, the sound of the person’s voice, their perfume, my friend would take over for me. I don’t think he knew that was what was going on, though. Frequently I would work in the back amongst the books and periodicals. It was quiet back there, a little darker, and it was free of people coming and going so frequently. He even showed me a place that he enjoyed to escape to himself and I used it as a place to cool down and get myself back together again.
Still, I could not get some of the college professors to understand my issues and so I had to drop some classes and not actually finish getting my degree. I am just now again considering going to back to school and getting a certificate or something, 20 years later.
Now, those were the difficult things. And I know that there were times when I was depressed, upset, angry, sad, feeling alone, overwhelmed, and sometimes like I wasn’t worth much of anything. I kept comparing myself to others instead of seeing what I was capable of doing myself. Still, there were positive things as well. Lots of them and I had to switch my focus to see the positive things I was capable of. That’s tough to do when it seems the world around you is letting you know all the things you “need” to change about yourself.
I was able to start writing poetry from a very early age. Even though I had trouble with my motor skills for a while, I still wrote poetry and even short stories. No one could read my writing, but hey, I could. 😀 And I loved to write. LOVED IT. And I was good at it. I eventually had poems published in magazines and Online. A short story I wrote for one of my classes was voted best in the grade. I wrote the differing styles of communication section for a program that I helped develop with a group of people that went national. I, never in a million years, imagined that I would have ever been able to do such things.
I also loved to take photos and photography became my passion for a while. I would snap photos of all my favorite things. Mostly animals, trees, flowers, paths in the woods and fields, and my favorite belongings. I even made some friends and that was wonderful too. I also began to learn that I was a someone, not a no one and I began to slowly gain confidence and I’m still working on gaining confidence with everything new and all the changes life brings.
I began to identify myself as a rebel. I faced challenges every day and I sometimes fought them, sometimes I navigated through them, sometimes I challenged them and myself, sometimes I crumbled under them and had to drag myself up, but I was still standing at the end of the day. I was still here and alive. That is what made me a rebel, a champion. It helped me get through the tough times. I decided that I would always be standing at the end of the day, even during those times I felt sad, overwhelmed and miserable. I can honestly say that part of my Asperger’s is stubbornness and determination and a sense to never really totally give up. That’s part of my strength. I may get slapped down a thousand times and feel like crud, but I’ll stand right back up and try again. (It took a long time for me to realize this was actually me giving me self worth.) But it still was not easy by any means.
I got married and had a baby in my 20’s. My son is an Aspie, too. I got divorced and remarried and have the man I will be spending the rest of my life with now. He’s probably Asperger’s, too. (His Asperger’s gives him the amazing ability of focus and he is one of the best designers at his work place. My son’s Asperger’s gives him amazing attention to detail and imagination and he draws as if he’s been through college classes. He also plays piano and is amazing at that as well.)
Having Asperger’s means that I have been able to experience and see the world like so few get to. There have been times when I have been able to figure things out easily when others have struggled to figure out how to handle a situation. I can see what other people cannot. Many times I can see the truth of a situation long before other people can. I guess my mind has the ability to cut through the crap and get to the basics of it all. I can see patterns in behavior after I study it for a while. I notice detail and patterns people miss all the time. I feel deep empathy for others and can sense emotions long before other people can sense it in someone else at times.
I’m super passionate about things like the environment, animals, and helping others. I raised a son who is a really awesome person and I never thought I’d be able to do that. I love being a Mom. It’s the best!
I met someone named Ray, and he became my best friend about 12 years ago. He accepted me completely and totally for who I am. He’s really quite an incredible human being. Through him I learned a lot about human nature and how the NT brain works, though he’s about as NT as I am. Ray is not on the Spectrum, but he’s the most passionate, compassionate and loving person I’ve ever met. And he’s always, always 1000% honest. Always. What a lovely thing. We both value that in one another so much. If it were not for Ray, and I mean this, I would never have gone outside of my comfort level and done some of the things I’ve learned that I can actually do for myself because I was taught by teachers and classmates and society in general that I simply wasn’t good enough. I was simply too weird, different, strange, and stupid. They were wrong. Dead wrong. And Ray helped me realize this at this next stage of my life.
Through Ray I got to be involved with a program that was developed to help parents of children (and professionals at times too) on the Spectrum or who have a mental illness of some sort. Many issues were discussed and there were a few of us in there helping the program to be formed. We got to do a test run and a teaching session and it was the first time I ever was able to openly discuss having Asperger’s with Moms and Dads of children on the spectrum in a group setting before. It was incredible to be able to answer questions, help them understand things a bit better, and to know that their children were beautiful people who simply processed differently than they did. Nothing was wrong with them. It was a matter of learning to bridge the gap and accept their children more and more and more and learn how to communicate outside their box of understanding of communication.
I never thought in a million years that I would grow up and get married… twice! Have a wonderful, beautiful baby. Help design a program that went national to help parents of children on the spectrum and with other challenges. I never thought I’d ever get to college, have good friends as an adult, and enjoy life so danged much.
I’ve learned to revel in the simple things and not beat myself up all the time for the things I don’t do because it messes up my sensory system or because it brings me too much confusion socially. Sometimes, yes, I do feel left out and that I’m missing things. But most of the time, I love what I love and do what I love to do if I can.
I like it quiet. I like my time alone. I do not handle certain sounds, lighting, scents and movement, and being around people nonstop is far too difficult for me. That’s just how it is and accepting myself and loving myself and caring for myself the way that I am (and sometimes pushing myself outside of my comfort zone and experiencing new things) is much more important. Plus, I then get to spend time doing the things I love to do. Writing, being with my cats, spending time with my little friends outside in the garden, gardening, taking photos, reading, and listening to music and dancing.
I get to spend time with my family and we do go out and do things together. We also play games together. I have such severe sound issues that it is sometimes difficult to be around them, too. But I have found ways to help me with that. Sometimes it’s just getting up and being somewhere else in the house for a few hours. Sometimes it’s switching what we’re doing so that I don’t hear that particular sound for a while. I also run a brown noise generator and that helps a lot. (white noise is too angry for me). I love game night when we invite relatives over for a good round of board games and good food. It can be noisy and I may need breaks, but I love those nights. We find things we love and figure out what to do with that as a family.
Being an Aspie has given me a wonderful connection with animals, with nature. It’s given me and driven me to have empathy with others who go through difficult things and face tough times. It gives me a deep and passionate love of life and the connection we all have as Earthlings, not just humans, but all Earth dwelling beings. I love to feel the energy that flows through everything and connects us all. I realize a lot of people do not feel that or realize that, but I can feel it and I know it’s there and it brings me a deep feeling of belonging which just hanging out with a bunch of people laughing at jokes I don’t understand sometimes, or trying to keep up with conversations just does not give me. It’s beyond that simple form of communication. Not to say that simple communication isn’t important too. It is, but it has its place.
I honestly did not know what to write to you today. I wasn’t sure what words I would use or how I would convey myself to you. I am not sure I conveyed what I really hoped I would be able to convey to you. I hope that I have written something that helps you feel not so alone and connected in some way.
To wrap it all up, I want to say to you that you’re beautiful as you. Sometimes people put labels on people and they categorize them and when those labels and categories do not fit neatly within their scope of understanding, they have a hard time dealing with it. It must overload their circuitry and they must sometimes become afraid and uncomfortable and do not know how to act around someone who represents a threat to their comfort levels and their limited understanding of what a human being “should” be like in their mind’s eye. That’s their problem that they have made into your problem. That’s tough to deal with. But there are ways to find strength, support, acceptance and connection.
And this is how: Reach out. Reach out to others on the Spectrum. Read their blogs, join chat groups, and become involved with people who will be much more understanding of where you’re coming from. Reach out to what is available at this time to you and give yourself a lot of credit. Try and find the beautiful and the strong inside yourself and really see it.
Having Asperger’s can be one heck of a challenge. I understand that and I’m not pretending that it’s not. I really am not. Having Asperger’s can also be a huge blessing and an amazing way to experience life. One of the most difficult things I found for myself was learning to accept myself when the world around me simply did not accept me. It’s still tough to do sometimes, but I’m getting much better at it.
Brightest blessings to you, whoever you are,
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