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Friday, August 24, 2012

The Silent Struggle: What is Different About Me?

I've been thinking a lot of my years growing up as of late. Sometimes this hurts as I think of times that, socially, everything went wrong. Back then I had no idea that there may have been a reason for my oddities and quirkiness. Back then I had no idea that not everyone shared my physical reaction to fire alarms or that not everyone shared my intense interest on whatever it was I was interested in.

Slowly I began to notice that my classmates would socialize about anything. It seemed to be almost as if I were watching a scripted television show because it was so seamless. For me, any conversation outside talking about facts was nothing short of an ordeal as I tried to make every sentence perfect which led to a choppy speech pattern.

As time went I began to wonder what was different, or even wrong with me. Where was the circle of friends like everyone else had? Why could I do difficult math problems with ease but when it came to figuring out why a joke was funny was an impossible task. Why could I name every state and its capitol but not understand why some people got mad if you told them the honest truth of the situation (i.e. "Why don't you know that?" "Why are you wearing that?")

From those few examples to enduring thoughts like that every day I ask you, what conclusions can one draw? I didn't have a diagnosis of Asperger Syndrome. Well, for the first half of my schooling years it wasn't even a diagnosis yet. Anyway, what conclusion could I come up with? Maybe it was that all my other classmates were weird? Maybe it was that I was smarter? Or maybe even you would think that I thought that all was normal? All those answers are wrong as each night I thought to myself, "Am I bad? What is different about me?"

It was a silent struggle and I had lots of issues trying to describe this but for the most part I kept quiet about my core feelings. I mean, how could I explain that I felt different? Without understanding that people are different how could I accept that fact? Without knowing about Asperger Syndrome how could I ever forgive myself for my social awkwardness?

I was my own worst enemy and it wasn't until I got my diagnosis and wrote my book, Finding Kansas, that I began to ease up on myself and begin to accept who I am.

Why do I write this today? I've been hearing a trend of stories from younger people who have been fighting the same battle I was when I was their age. Even though we have social media and more ways to communicate than anyone 25 years ago could ever have imagined, when it comes down to it, we humans are still social in a physical presence. Social oddities stick out and the way I felt when I was young was that of being on a island, stranded, but people are always swimming by and as I call out no one hears my words.

Feeling alone is a horrible feeling and even more so when one feels alone and does not know how to describe it. Another thing I've heard in recent months, and I've written about it several times, is whether or not to tell a child that they have Asperger Syndrome. I want to say I wish I knew and I wish my classmates had known. Through understanding comes compassion and while I was never bullied I was also really never included; I was simply there.

Finally, and perhaps the strongest aspect of fighting this silent struggle, is that the feeling of being alone grows and grows. When I get an e-mail, comment on this blog or my Facebook page, or when someone tells me at a presentation that, "I never thought anyone else felt like I do." I must admit I get this feeling of ice flowing through my body because I don't know if there is anything more important I, or any other speaker/writer/advocate can do because, before that point in time when one realizes they aren't alone, the silent struggle will continue. I know because I was there. The void of isolation grows and grows and since, socially, I could never seem to do anything right I figured that I would keep all my feelings and thoughts to myself because those must be bad too considering everything else I did was. And on top of it all my thought cycle was, "even if I spoke no one would understand."

I came out of the silent struggle through my writings. I don't want to imagine what I would be like if I had not found this medium to communicate. Still though there are those with Asperger Syndrome out there that are in the midst of this silent struggle. Perhaps they are diagnosed, and perhaps they haven't yet, or maybe never will, and for them I hope someway somehow these words will find them. First and foremost "you are not alone!" I know those words probably are irrelevant now, I know if someone had told me that when I was a child my reaction would have been, "there's no way you know how I feel" but I was wrong. Also, the world is learning. Sadly, there are bullies out there that like to target those that are different. My hope is that someday, through all this increased awareness, those who aren't bullies will band together and will protect those who are different. As I said, I always asked myself, "What is different about me?" and just thinking that thought alone can create an issue, but to add complex and perhaps awful social situations just makes things worse.

All that I do and all that I am comes from my hope that the lives of those on spectrum can be made better through understanding. I lived without understanding for a long time. While there was an obvious external struggle going on my real fears on being different were always silent. I didn't understand that being different is okay! I didn't understand that everyone is different. And most of all I thought I was the only one in the world that thought the way I did.

The silent struggle is a dark voyage. It was always difficult to see my peers socialize so freely. In my struggle I often lost myself because I would look at them and completely forget who I was. I didn't see who I was, but who I wasn't and, well, I could write on and on about this but my hopes and dreams lies within the fact that I hope we as a world can get to a point where the education about the autism spectrum is such that there is full acceptance and the best inclusion as possible. In that world people, and I mean everyone, won't see what they're not but rather each person will see who they are and I hope no one has to go through the silent struggle I did of wondering "Why am I different?"

8 comments:

  1. My boys go through this ...although not silently. It is so painful to watch. I do everything I can to help them. But I can't walk the journey for them...they go through it. Knowing that they have Aspergers -doesn't make it much easier.

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  2. I feel the same way with my son, its so painful to me seeing him suffering and battle his own deamons and i can't do anything for him, its so sad! We (me and my son) share the apin, that's all i can do for him, sharing his pain!

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  3. My son is 15 and is struggling with this as well. From preschool until about 7th grade, he really wasn't interested in having friends. Now that he is, he never knows what to say or do tyo make friends. Whren he tries, he tends to try too hard. The Asperger's diagnosis has helped us to understand a little better, but it has also made him feel more self-concious about who he is. But you are right, Aaron. We are ALL different. Not right, not wrong, just individual. Different is interesting!!

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  4. What a wonderful resource for parents and maybe even our kids. My son is 14 and struggles with AS among other things. He is such an unhappy boy and school continues to be a challenge for him causing a deep depression. This brilliant kid would rather be homeschooled than to have to face the question of "What do I say at the bus stop if I see someone I know?"

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  5. Aaron.......wow. As I read this post I began to tear up. I see this in my son as well. My son is 17 and he struggles daily with why people won't accept him for who he is. He is very accepting and out going, but because he can stumble in social situations he becomes self conscious of how others look at him. As his parents we tell him "not to let others define who he is", but it doesn't help with the loneliness. He tells me all the time he wishes he had friends and now he wishes he had a girlfriend. My heart breaks for him all the time. I think he will eventually find his way and he will be able to find himself, but the road for him will be difficult, not impossible. I have had friends throughout my life that were probably AS and I loved that they were different, as I always felt different too. I hope my son (all our children) find friends that will embrace being different, and not judge them. There are people out there, we just need to band together, like you said Aaron.

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  6. Your message and goals don't extend only to those on the Asperger's spectrum but many others who have felt similar ostracization (Spellcheck is telling me this is wrong, oh well) especially in their childhoods. I feel its very important for human beings to try to create bridges to those human beings who might feel isolated and uniquely alone. Telling an honest tale(as you have) about who we are is the best way to do it. Great post Aaron, keep up the good work! Your book opened my eyes and has helped me in my relationship with those close to me in the Asperger Spectrum.

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  7. wow...i feel for everyone that is on the spectrum..my son is going to school in less than a month because he needs early intervention ie; speech therapy, potty training, developmental issues,etc..i'm taking a parenting class to help me help him and our family..i'm learning a lot (at first i didn't want to learn, part of not-acceptance- or just plain grief or denial)..like why he "needs" to chew on things to "feel" normal,,so i have to find him safe things to chew on that he cannot ingest unless its chewy food that fills his sensory needs..before learning this i just put away everything he was chewing on, not realizing he needs to chew..likewise he needs to spin around, make noise, have a lot of physical play, etc..to feel normal..i will get the sensory chart next week which shows me sort of like maslow's theory of self-actualization how one part of the body is not "balanced" (don't think this is the right word) he will not move up to the next level of the hierarchy..i'm probably not explaining this right as I'm just learning it..it is so mind boggling for me to understand..his dad seems to cope better than me..we think he may be on the spectrum somewhere..i get panicky sometimes when i don't know what he wants, and i don't know if he is taking a tantrum or actually needs something..i'm learning pecs too..that will take a while..what i meant to say in the beginning besides all of this is..i was always the shortest person in the class called "shorty" and other nicknames..some meant it in a nice way, some didn't..i thought there's something wrong with me.I JUST WANT TO BE LIKE EVERYONE ONE ELSE..being a kid/youth/teen is hard and the desire to fit in is strong..i truely hated school except for music and drama cause i could escape and be someone else..i'm now wondering how my son will feel about school,,he will have an aide but i know sometime he will feel the scrutiny of others too..hopefully things are changing, we can only hope for our next generation..

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  8. Thank you Aaron.
    Ypu are a fantastic man letting us know about your life and the troubles you have because of Aspergers syndrom.
    My youngest son(I have 6 children)got the same diagnosis when he was 20 years old.We live in the Stockholm area in Sweden.I guess the understanding of Asperger and ADHD came rather late to Sweden.i am a teacher and a politician.So it has been possible for me to lift the ADHD issue and als Asperger in order to get more help in the schoolsituation.
    At the moment my youngest son is working as a technician(data) and I hope he will stay.
    I love your writings and the long trip you took across USA.People need to hear from the ones affected how it is to have Asperger.
    Good luck with your writing.
    Big hug

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