Sunday, 30 December 2012

I Am

People-first language is a controversial topic.  And perhaps this will be an unpopular opinion, but I honestly don't know why it is such a big issue.
I am autistic.  I have autism.  I have Asperger's Syndrome.  I'm an ASD kid.  I have used all of these to describe myself.
Technically, I am a "person with autism" or "person with Asperger's Syndrome" or "person with ASD," but of course I am a person -- what else would I be?!?  I'm obviously a person!  My opinion, unpopular or not, is that neurotypical people don't (necessarily) introduce themselves as "Hi, my name is ______ and I'm a person" so why should autistic people feel the need to qualify their autism with their inherent personhood?
That's just what I feel.  Because living with autism has been a constant challenge in my life and I'm only getting to a point now where I am really able to see and understand my limitations.  But despite all the negatives that come with autism -- and yes, some days, there are a lot -- ASD is part of who I am.  ASD is not wholly who I am, but it is as much a part of me as my brown hair or my blue eyes.  I have not always felt as positively about my ASD as I do now, but at this point, I do believe it is a defining part of my character and I want to own it when I describe myself.
I am autistic.
There are other people who view person-first language differently.  I know other people who introduce themselves as being "a person with autism."  And that's fine.  That's great!  I think that we as humans are in charge of creating ourselves and coming up with comfortable labels is all a part of that process.  I choose to refer to myself as autistic, but others may not choose to refer to themselves that way.  Basically, I think advocates sometimes get so caught up in thinking their way is right that it's really difficult to see things from the other side's perspective.  I don't think we should have only people-first language but I also don't think it should be obliterated.  I think every person should refer to himself or herself as he or she wishes to be referred, and then I think it's our job to respect that choice.
It's taken me 20 years to understand person-first language and the conflicts surrounding it, but that's where I stand right now.
I am autistic.  And I will refer to you as you wish to be referred to.

Saturday, 29 December 2012

Alphabet Soup

“Alphabet soup” is delicious vegetable soup with little noodles shaped like letters from the alphabet.  I’ve always enjoyed alphabet soup because I like words and names, and the way the letters exist randomly and yet occasionally, entropy will bring them spontaneously together and create beautiful creations out of nothing.  Words and names.  I love finding them in life, and in alphabet soup.

I recently read about diagnoses as a type of alphabet soup.  Not literal alphabet soup, of course, but a figurative alphabet soup. Sometimes, the seemingly endless diagnoses common in the ASD community seem like they were scooped out of a bowl of alphabet soup.  These acronyms and initialisms can be so numerous that one’s description of oneself becomes “alphabet soup.” 

ASD (Autism Spectrum Disorder)

OCD (Obsessive Compulsive Disorder)

?SID (Sensory Integration Disorder)

?ODD (Oppositional Defiant Disorder)

I am alphabet soup.  I have always been alphabet soup.  I’m not sure how I feel about that.

I am proud of myself.  It has taken me a long time to be proud of myself and proud of my autism.  It has taken me a long time to be willing to be social at all, let alone to share my autism.  And yet, I’m not quite sure how comfortable I am, just to be known as this alphabet soup.  These letters are so much of me, I am all together more than these letters. 

Tuesday, 25 December 2012

Eccentric

I have a friend who once told me she initially didn't know I was autistic; instead, she said that she would have described me as "eccentric."  
I am eccentric.  I wear that badge as proudly as I wear the autism one (this is a figurative badge, by the way).  

Sometimes, I shake and flap my arms and hands.  Sometimes, I fidget my shoulders and my neck. Sometimes, my feet stomp uncontrollably.  I walk purposefully, oftentimes in patterns, back and forth and back and forth again.  
I bite my wrists and fingers -- more obvious in the marks on my right hand than my left -- and I bite and hit my knees.  
I don't always remember to keep my tongue in my mouth.  
I correct people's grammar, even when it's socially inappropriate -- sometimes I just don't see that it's not the time for that.  
I don't always understand what people say, and I've been told that I ask a lot of questions.  I also say "I don't understand" a lot -- that's something I've noticed about myself. I don't pretend to understand things the way I used to when I was younger; I used to get frustrated because I was so often confused, but now I just say I don't understand, that way someone will explain things to me in a manageable way.  I don't get frustrated as much anymore.  
Sometimes, I repeat words with interesting syllables and sounds.  Sometimes, I say the same word over and over because it makes me calm.  
I have a lot of anxiety regarding cleanliness and have an elaborate system of indoor- and outdoor-clothing.  
I make a lot of lists.  More lists than the average person my age.  
I struggle with anxiety.  I have a lot of anxiety.  

I know I am different.  I am sometimes painfully aware of my uniqueness.  I never used to see that I was any different than any of the other kids at school; I spent elementary school ignoring the other kids, blissfully ignorant and blessedly isolated.  I spent middle school in a small classroom where all the students -- many of whom had special educational needs -- worked independently.  It wasn't until high school that I was forced, by proximity, to pay attention to my peers.  I could tell I was different -- of course I could -- but I couldn't change myself, no matter how hard I wanted to.  

I have reached a point where I don't want to change anymore.  I have tried social skills classes and I have tried cognitive behavior therapy, but it's clear that my brain chemistry has dictated that I be the person I am now, the person I have always been.  
I am eccentric.  I am autistic.  Perhaps there's a fine line between the two.  Perhaps they are unique facets of my self.  
Either way, I am glad I am me.  

Saturday, 22 December 2012

A Plain and Simple Musing

And so it begins.
Blogging.
I am sensitive to words and I've always had a distaste for the word "blog" -- it sounds so vague and unsophisticated -- but here it is, now a part of my vernacular.
I am blogging.  I am a blogger.  These words, they do not seem like words.  
I like words.  One thing about people with Asperger's Syndrome - people like me - is that, sometimes, we have a special talent, a particular interest, or a superpower.  I've met kids who know trains, who know cars, who know maps.  As for me: my superpower is names.  
I have diverse interests - much more diverse now than when I was younger - but I have always had a passion for names.  
I have always been fascinated by the names we, as humans, give our children.  I am fascinated by the names themselves.  I am fascinated by the origins of the names.  I am fascinated by the patterns in the names themselves and the trends that dictate which names will be popular and which will not.  I am fascinated by the utilitarian purpose of our names.  
As I grew up, I broadened my interest to encompass all words.  I am fascinated by language as a whole, and how language can be simultaneously regimented and free.  I am fascinated by the rules that language has, and I am fascinated as to how these rules evolved.  I am fascinated by the beginnings of words, the way they have evolved from languages of the past, and how the words that make up our current English language contain bits and pieces of genetic material from all sorts of prior speech.  
Perhaps it is because I have Asperger's Syndrome, and perhaps it is just because I am me, but as a child - and even to this day - there are some words that I passionately detest.  Words like "goal," and the over-used phrase "work out," and the ill-defined "hike," and the word "quote" when used incorrectly as a verb.  There are many more, I'm sure - words that make me either shudder or cry or have some other visceral reaction.  
My point, that perhaps is discernible from the above biographical rant, is that I like words but I love names.  
I never liked the word "blog."  But I'm trying.  

I Have Asperger's Syndrome

I am not an expert in Asperger's Syndrome, but I am an expert in me.  Or, at the very least, I believe I'm the most qualified in the world to, potentially one day, be an expert in me.

When I was 9 years old, I was diagnosed with Asperger's Syndrome, a form of autism now classified under the umbrella term ASD (Autism Spectrum Disorder).  When I was 11, that diagnosis was confirmed by a leading autism specialist.

ASD exists in 1 in 88 children and is more common in boys than in girls, according to the Centers for Disease Control and Prevention.  So as a female with ASD, I suppose I'm, well, rather unique.  But here's the thing I have discovered: studies and statistics (that I've read, at least) tend to focus on the children with ASD, but rarely make reference to the adults those kids grow up to be.  

I am one of those adults.  I struggled through school, where I excelled academically but was challenged by socializing.  Now, I am in my second year of university.  I live on campus, as I have for the past two years, in a residence building filled with other students. I have two best friends with whom I am, for the first time, comfortable enough to share my whole self, and a plethora of other acquaintances from class.  I clean my own space, keep up with schoolwork, and get good grades in all my classes.  

So why blog?  Well, I'm not quite sure what this project will entail yet, but I know that it's something I've been thinking about for a long time.  I sort out my thoughts much better when I write them (or type them) than when I speak verbally, and I have been considering starting a blog for a few years.  Now, it finally seems like the right time.  Now, I am an adult with Asperger's Syndrome, and while my experience is hardly one-of-a-kind, part of me wants to believe that it is, at least a little bit, unique.  I struggle with many things, and this blog will be an exploration of those things.  This blog will be a celebration of the small victories - like holding eye-contact for a conversation, or sitting through a movie with my peers, or working on a group project, or sitting on a floor - that are activities I would have been wholly uncomfortable with (by which I mean that I would absolutely shut down at the thought) but activities I now manage on a regular basis.  

There are a handful of things I am uncomfortable with, but there is a longer list of things that I am excellent at.  This is an adventure in which I will discuss those things.