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.
Navigating the waters of adulthood while living on the autistic spectrum. I'm university student in Western Canada, suffering through the sea of challenging social interactions undertaken by us "grown ups" on a regular basis and trying my best to adapt to change.
Sunday, 30 December 2012
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.
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