Tuesday, 26 March 2013

Autistic and Female

Emily Willingham wrote a very interesting article about girls/women and autism a few months back in Forbes magazine.


I particularly liked this quotation: 

"The girls’ ‘protection’ might not come from protection against autism. Instead, it might come from being autistic in a different way from boys, a way that clinicians have yet to recognize, a way that leads researchers unknowingly to exclude autistic females from studies. It might not be that girls are better at “hiding” behaviors, as some suggest. Instead, their behaviors differ from those of autistic boys in ways that researchers are just beginning to understand."

The phrase "being autistic in a different way" jumps out at me.  

I was lucky.  I was diagnosed with autism at a young age.  Many Autistic girls are not as lucky as I was.  Many grow up feeling misunderstood because they have no clear understanding of what makes them unique.  I know I used to be lonely, before I understood why I was different.  I know my parents used to worry that there was something "wrong" with me.  My diagnosis changed all that.  My diagnosis was a definitive answer to the puzzle we'd been trying to solve.  

My heart goes out to all my Autistic "sisters" who are still trying to understand the beautiful mysteries that make them unique.

Monday, 25 March 2013

What Is Autism?

My best friend (who is neurotypical) asked me this question a few days ago.  She asked me: "What exactly is ASD?"
She knows I have ASD (Autism Spectrum Disorder) and she knows that makes me Autistic.  But what she did not know is how autism works or, more precisely, what makes an Autistic different from a neurotypical.
Autism is hard to explain.  I've heard advocates use the term "puzzle" to describe autism, as if it's something complex and challenging that we can't quite quite figure out but are compelled to work at, over and over again, until we can unlock its secrets.  I've heard discussion among specialists about neurotransmitters and anomalies in brain structure.  I've heard about the behavioral and sensory challenges that are often associated with Autistics.  I've heard drabble about "low-functioning" and "high-functioning" Autistics and Autistics who are referred to as "savants."  I've heard about non-verbal Autistics and verbal Autistics, Autistics who excel at math and science, and Autistics whose passion lies in language.  Autism is different in everybody.  And I am not an expert in everybody.  In fact, I am far from it.  But I'd hazard to guess that I am an expert in myself.
I ended up telling her that autism means that my brain works, on a fundamental level, a little bit different than hers.  I said that autism makes me see things differently and think about them in a different way.  I said that, even though we both live in the same environment, my "world" is just a little bit different than hers.
I don't know what it is like to be neurotypical, but I do know this; I see things just a little bit differently than neurotypicals do, and I am perfectly content with that.

Being Human

The blog has been on a bit of a hiatus recently because I've been distracted with many things and, frankly, haven't felt the inspiration to write about much of anything.  I have been going about my daily life as "normal" as I usually do. I have been enjoying social time and enjoying solitary time.  I have been watching television and reading books.  I have been doing all my housekeeping duties like eating healthy food, doing my laundry, and going to bed at a reasonable hour.  I have been existing and I have felt pleasant.
I tend to focus on my peculiarities here because they are more interesting to dissect than the things that make me "normal."  I am autistic, and inherently, autistics all tend to be a little bit "different."
But so often, I display traits just like any neurotypical.  I am hungry, for example.  I am thirsty.  I'm tired and I'm cranky because I am craving raisins but I don't have any in my fridge.  I am running out of shampoo and I'm frustrated that I'm going to have to go buy groceries soon.  I'll probably also have to buy raisins.
I could come up with something to say about every one of those things that specifically relates to my autism.  Grocery shopping is anxiety-provoking for me, for example, and that is because my Asperger's Syndrome makes me very sensitive to bright lights and bright colors and the disorder and chaos that abound in grocery stores.  And that's not even to mention all the noises - I have a very difficult time processing auditory stimuli and get overstimulated very easily - and all the people - I haveff always suffered from social anxiety and have a severe aversion to 'small talk.'
But my point here is that as I "other" myself - as much as many autistics tend to "other" ourselves - from neurotypicals, we are all, inherently, the same.
We are all human.
We all get hungry, we all get tired, we all want, and we all need.
We are human.

Monday, 18 March 2013

Changes Are Scary

In mid-January, I posted here about how I dislike change.  I have disliked change since I was a young child and honestly, it isn't something I see overcoming in the near future.  I spend a large proportion of my time planning my schedule - for the day, the week, the month.  This proportion of time spent is matched only by the amount of time I spend worrying about the things I cannot fit into the clean and precise crevasses in my mental calendar.  I am always afraid that plans will change.  I am terrified that, since most activities require the assistance or participation of another person (or multiple people) in some way, the plan I have so neatly worked out in my head may completely morph into something else, and this process may be completely out of my control.
I have multiple diagnoses secondary to autism, including an anxiety disorder, and in the circumstances that follow change - be it major change or minor change - autism and anxiety tend to gang up on me and produce unfavorable behaviors.
I am not proud to admit that just thinking about change makes me shake a little bit.
I am not proud to admit that, even the smallest change to a predetermined plan is enough to send me into a meltdown.
I don't like meltdowns.  I have them, but I don't like them.  Meltdowns are, for many autistics, a "normal" part of living and they're oftentimes something we cannot control.  They are awkward and embarrassing and painful and undermining, but they happen regardless of how much we sometimes wish they would go away.  Or, at least, that has been my experience.  I've tried breathing, I've tried taking breaks, I've tried modified education and special education, I've tried living with the "disability" label in my building, but nothing - so far - has kept me from melting down.  And changes are, by far, one of my biggest triggers.
Changes are scary.  Changes highlight the uncertainty of the world.  Changes remind me of the omnipresent entropy in our society.
I'm finding myself incredibly lucky, however, that I have good friends who are really considerate of my distaste of changes and who try to accommodate for me as best as possible.  I am really fortunate that, even though things still change and I still melt down, I'm less embarrassed about my peculiarities and I'm starting to really embrace the more 'negative' quirks of autism that I tend to display.
Changes are scary, but people can sometimes make them less scary.  I've been counting on that a lot recently.

Sunday, 10 March 2013

Never Tell An Autistic to Have "Quiet Hands"

Just don't do it.
It's a bad idea.
It sounds simple enough - I guess I can see where the confusion comes from - but it's really important for people to understand that when autistics flap or shake or wave their arms, they are doing so because it is a technique that allows us to better understand the world.
Stimming is difficult to describe to a neurotypical person.  Autistics of all creeds understand stimming; it's one of the things that connects us all together.  But to neurotypical culture, it is deemed "weird."  It's just not something that NTs do.  And, since autistics and NTs live together in this beautiful world, sometimes we have to make concessions for one another.
But, as a public service announcement to neurotypicals everywhere, please know: we stim because we have to.  Stimming is not a choice; in fact, stimming is a reflex for most autistics.  Stimming is not always seen as acceptable among neurotypicals, and we are aware of that.  Sometimes, we are self-conscious.  We don't like it when you judge us.  But even though we're afraid of what you'll think when you see us stimming, we cannot stop.  Stimming is just something we do.
I should clarify here that not all autistics stim, and sometimes our stims take different forms.  Some autistics have vocal stims.  Others have physical stims.  Some of us - including myself - have a combination of both.
In my case, I stim more when I am nervous or anxious.  I will repeat words - words that I like because they sound nice, not words that are relevant - and shake my hands or flap my arms.  I hate stimming in public because I'm always afraid that I will be judged.  I never used to notice and I especially never used to care, but now I am afraid and it is very difficult for me to stop stimming once I get to this heightened state of anxiety.
I've never been told to quiet my hands, but it has happened to other autistics I know, and it seems very impolite to me.  I would get more nervous if told to quiet my hands.  I would probably stim more.  And, honestly, being told to quiet my hands might even cause me to melt down.
My point here: be tolerant.
If you are neurotypical, you cannot understand the mind of an autistic, no matter how hard you try.  We are different than you.  It's OK to admit that.  But it's not OK to refuse to accept that we are also of value.  We do things differently.  And that is OK.  This world is full of all different and unique  individuals and it is important to remember that we all must coexist together.  Please be tolerant of neurodiversity.

Friday, 8 March 2013

Autism (Sometimes) Makes Me Frustrated

I have had a diagnosis of autism for over 11 years.  I have been autistic my whole life though.  I have only known autism.  I do not know what it is like to be neurotypical.  In the same way, neurotypicals do not know what it is like to be autistic.  I just want to emphasize that.  Because when I have depressing days when I loathe myself and my unique neurochemistry, my feelings always seem to stem not from my own perceptions, but instead they always relate to the neurotypical people around me and their misimagining of me.
I love myself.  I am amazing.  But sometimes, my autism frustrates me.  Today, I got frustrated because of my autism.  Today, I had a bad brain day.
I got frustrated when I didn't understand a (poorly worded) question in class this morning and asked the professor to clarify.
I got frustrated when I got so fixated with that one mistake that I couldn't focus on learning.
I got frustrated with myself for being fixated so easily.
I got frustrated with myself for stimming in class - for shaking my hands, flapping my arms, and shaking my feet.
I got frustrated when others started to stare at me.  I felt embarrassed.  And that made me upset.
I got frustrated when I started to cry in the middle of the classroom.
I got frustrated with myself for being embarrassed of who I am.  That really shocks me.  I hate having negative feelings about autism.
All in all, I had a miserable morning.  I felt angry for being angry.
I got frustrated later when I got in a heated argument with someone I care very much about.
I got frustrated because I couldn't understand him.
I got frustrated because he couldn't understand me.
I got frustrated because I thought he should try harder to sympathize with me and explain his point-of-view more clearly.
I got frustrated when I started to cry.  That embarrassed me, too.
I got frustrated when he told me that I wasn't "trying" to understand him.  I felt really upset when he told me that I was just being "stubborn" and "pretending to be dumb."
I got frustrated when he compared me to his best friend (who is also autistic) and told me that his friend understands him and, since he and I are both autistic, I should understand him as well.
I got frustrated when he said I was not a "logical" person.  I got frustrated because I believe - in fact, I know - that I am a logical person.
I got frustrated when he asked if I'd ever "get over" being autistic, because he just wanted to have a "normal" conversation with me.  I'm actually still frustrated over that one.  Angry, even.
My point here is that it's OK to be frustrated.  It is good to acknowledge those feelings.  I often struggle to recognize what I am feeling, but now that I'm getting better at it, I find it really therapeutic to acknowledge whenever I feel something negative.  But, I think, at the end of the day, it's really important to remember that, no matter how frustrating it can be to be "different," I am autistic and I know my autism and, more importantly, I try to be proud of it and own my autism.  Now that the meltdown has subsided, I wouldn't want to change who I am.
I just need to find a support system that also wouldn't change me.

Thursday, 7 March 2013

Sarcasm

I don't get sarcasm.
Or, rather, while I understand the theory behind sarcasm and vaguely comprehend its utilitarian purpose, I often do not recognize sarcasm when I encounter it.
Since "not responding appropriately to sarcasm" is one of those classically, stereotypical signs of Asperger's Syndrome and other Autism Spectrum Disorders, I just want to pause here to remind us all that not all autistics have trouble with sarcasm.  But some of us do.  And I'm one of them.
Basically, I think I discovered why I don't get sarcasm.  In a discussion this evening, I got upset with somebody for using sarcasm and subsequently confusing me.  I, somewhat flustered because I didn't understand what was going on, shouted at this person and nearly started crying.  I was simply befuddled by his words.
When he asked why it was that I disliked sarcasm so much, I explained this to him: sarcasm confuses me, and I don't like being confused.  What I said was something I say often: "I mean what I say and I say what I mean.  And I expect other people to do the same thing."
What I was trying to explain is that I believe in language, and I just intuitively trust that words that others use will be true and will accord to their accepted definition.  I just assume that the words that other people use mean what they should mean.
I think that's why I don't get sarcasm.  Because sarcasm requires usage of words in order to convey a different, often opposite, meaning.  And that's confusing.

Wednesday, 6 March 2013

Stereotypes are Unhelpful

When I was writing for Autistic Flash Blogs and the positive autism movement, I kept twitching at the phrase "autistic people are..."  It was almost like a miniature trigger for me.  I just couldn't get over how uncomfortable I was with that string of words.
And then I discovered that my discomfort was stemming from the implied stereotype.
I hate stereotypes.  I hate stereotypes about all people because, frankly, they confuse me.  They contain no useful information.  Basically, I wonder if the people who invented stereotypes just did it in order to mess with us.  Because seriously: I don't get the point.
I am autistic and I know a lot of autistics, and I'll admit that when we get together, it's obvious that we're more like one another than our neurotypical peers.  But not all autistics are the same.  I really want to stress that point.  We are all unique.  All people - autistic or neurotypical - are unique.
So the thing that irks me about the phrase "autistic people are..." is that it automatically assumes that all autistic people are the same.  Not all autistic people are the same.
So if I'm going to finish that sentence in a way that is fully accurate, I'd say that: autistic people are UNIQUE. 
Also, stereotypes are unhelpful.

Tuesday, 5 March 2013

Autistic People Are...

As part of the Autistic Flash Blogs project - I am trying to highlight the fact that, even though the internet seems to abound with negativity about autistics, actual autistics are a far cry from what Google Autofill's pessimistic mind seems to suggest.

So, without further ado:

Autistic people are unique: We come in all different shapes and sizes but we're all connected through the mysteries of autism.  We are a community but we are individuals first and foremost.  We deserve respect just like any other person.

Autistic people are smart: Booksmarts may be a stereotype, but regardless of how we do in school or how we are perceived by the world, all autistics have their strengths and talents.  We are each brilliant in our own ways.

Autistic people should be able to express their autism: Everyone's autism "shows" in a different way - some of us flap, some of us hum, some of us count, some of us rock, some of us shake, etc. - but we all deserve the right to show our autism to the world without shame or discouragement and without being set aside as an outcast.

Autistic people should be able to communicate about autism: Sometimes, people forget that the real experts on autism are autistics.  Every autistic has value to our community and every autistic should be able to embrace and love their autism.  Every autistic should be allowed to teach others about autism.

Autistic people should exist: Simple, obviously, but some people might need a reminder that autistics aren't a burden on society.  In fact, autistics are a great addition to our world!  Autistics bring new thoughts and new ideas to share with the world.  There are many well-known autistics who affect us positively every day, and many more ordinary autistics who bring joy and wonder to those around us.  We all participate.  We all are loved.  We all are needed.  We are not a bad thing.

Autistic people do exist: Also simple, but every once in a while, I hear something ableist that makes me want to shout that autistic people are around and we hear and feel and understand what is being said about us, and sometimes it makes us angry and upset.  Autistics are here - whether you know us personally or not - and we don't like being disrespected.  Nobody likes being disrespected.

Autistic people are human: "People" and "human" are synonymous, so that's sort of redundant, but it felt important to add.  Because, even though some of us have differently wired brains, we're all made of chromosomes at the end of the day, and is the thing that connects us all.

Monday, 4 March 2013

If Your Friend Is Autistic

I wish I had more friends.  But I also don’t want them.
I wish I went out more.  But I also don’t want to.
Social anxiety gets me every time I try to be an extrovert.
Autism keeps me from succeeding in relationships.  
Some days, I feel sad and alone.  

Someone once came up with the misconception that autistics don't enjoy socializing or that people with Asperger's Syndrome are all eccentric savants who sit around alone all day, trying to solve the mysteries of the universe.  

I'm not one of those people.  I mean, sometimes, I am one of those people.  A lot of time.  And unmedicated, I am very antisocial.  

But I am also a social creature, especially when I take my medication properly.  

I don't enjoy large groups, but I do love having friends.  I don't always want to be with people, but sometimes I crave interaction.  I don't always need to talk or text and sometimes my phone drives me crazy, but other times it feels good to feel wanted.  
I have social anxiety, like a lot of autistic people.  But I am still a social person.  I still have a strong desire to have friends and be in relationships.  I still have a strong desire to be needed by others.  I think that's a human quality.  I don't think it has to be with being autistic or being neurotypical; I think humans are social creatures and we all - deep down somewhere - crave friendship and interaction.  

It just felt like something I should share.  Because I hate stereotypes about autistic people.  And if your friend has autism, you shouldn't ignore them.  Ever.  Because autistic people (I'm generalizing here - sorry - but it applies for me) might not always be the best at telling you how much we appreciate your friendship, but we do.

Sunday, 3 March 2013

Spread the Word to End The Word

"It deeply saddens me when I hear anyone use a derogatory label for another human being."
   - TJ McCue

I'm sure you've heard this story.  Mr. McCue is a journalist with Forbes who covered John Franklin Stephens' open letter to Ann Coulter regarding her inappropriate and downright disrespectful usage of the R word last October.  

If you haven't heard the story, it's a great one about self-advocacy and it really makes me look up to Mr. Stephens, who is such a champion for not only himself and his own rights but also the rights of so many other people.  I'm really inspired by him.  His full letter can be read here: http://specialolympicsblog.wordpress.com/2012/10/23/an-open-letter-to-ann-coulter/

What inspired this post was a debate I had recently with someone regarding the R word.  It's sometimes difficult for me to convey my thoughts exactly, even though I usually have strong opinions.  I just don't always have the linguistic precision to explain myself.  My stance was that the R word is hurtful and should never be used, ever, with no exceptions.  The other person argued that it is merely a word and we have attached connotation to it ourselves.  He said that he wasn't offended by it, so there was no reason he shouldn't use it.  That upset me greatly, but I wasn't able to tell him why.  
Honestly, I'm still not sure how to phrase this.  I just know that, in my opinion, the R word is disrespectful and should have no place in conversation.  
I am autistic.  Sometimes -- in fact, more often than not -- I struggle to understand the people around me and where they are coming from in terms of their own thoughts and opinions.  I like to learn as much as I can about things before I take a stance on issues.  I might not be the most empathetic person nor am I the world's greatest expert in understanding others, but I do know that it is not all right to hurt people.  I mean, seriously: that's not a difficult concept! 
I'm honestly surprised more people aren't upset when this word is used so callously.  Even if it doesn't hurt you, I can guarantee it hurts someone, and making excuses for your language is only taking steps back from the real issue.  
It is hard enough to get respect in this world, and with words like that flying around, it's even more difficult.  
I'm disappointed that this word exists.  I only imagine it's caused much more harm than good.  

Friday, 1 March 2013

"Gut Feelings"

I have a friend who can quite accurately understand every scenario she finds herself in.  It's an admirable skill.  It's a skill I sometimes wish I had.
She calls it a "gut feeling," which is an absurd term but refers to a really interesting phenomenon that is actually quite a bit more common than I once believed.  When my friend undergoes something significant, she can instantly distinguish whether her situation is good or bad.  She can come up with a response to it right away.  She just feels what is going on.  She doesn't need to ask any questions or rely on the help or explanations of others; she just knows.  She says it's her "gut feeling."
I don't have gut feelings.  When I'm confused, I let the world know.  I let the world take my problems and I ask for understanding.  It took me a long time to accept that, in social situations particularly, I often find myself utterly clueless.  It took me years after that realization to decide that it was all right to ask for help.
Sometimes, it seems as if I am at the mercy of other peoples' opinions.  I know all "gut feelings" aren't accurate, which is frightening, because sometimes I rely on my friend and her "gut feelings" to help guide me to make decisions.  Sometimes, I think one thing but will completely abandon my understanding when told to by someone I trust.
I don't know why I do it.  I don't know if it's an autistic thing or just a human thing.
Maybe I just don't have strong convictions.  Maybe I just don't know exactly what I want or what is good for me.
Sometimes, I can be so certain of something and then I hear it someone's opposing opinion, and suddenly my opinion changes to mirror theirs.
I'm having a lot of uncertainty recently.  I'm experiencing a lot of anxiety.
Maybe I need someone to stand up for me.  Maybe I need someone who's on my side.
I just wish there was a way to know for certain what is right.
Sometimes, situations are too complicated for my autistic brain.