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Monday 29 April 2013

I Hate Summer

Having some serious social anxiety crap lately.  As per usual.
Left the apartment only once today — walked to buy a bagel and a Diet Coke.  
Going to run out of pills tomorrow if I don’t go to Superstore to get refills.  Can’t bring myself to take the bus.  Been trying to psych myself up for it for days, but I can’t.  I can’t get on the bus.  I can’t take the bus to the busy store.  I can’t go the busy store.  I can't talk to the pharmacist.  I can't wait around in the sea of busy people.  I just can't do it.
I am in love for the first time and he’s the only person I can stand to be around.  I don’t see him 5 days of the week, and I can’t bring myself to do anything during those days.  And even when I am with him, sometimes I feel like I'm not giving him my all, because after being social for hours, I sometimes need a break.
I’m becoming more and more obsessed with cleanliness, the way I was a few years ago.  I’ve showered 3 times today and I’ve been inside all day.
I can’t go on facebook anymore.  I went though a facebook-free period a few months back and I’m off facebook again.  I don’t want to have to see people, even over the mask of the internet. 
Life’s been weird.  
I wish I had schoolwork.  Or a job.  Or anything to occupy me.  Life is so much easier when there’s a regimented plan.

Sunday 28 April 2013

We Need Neurodiversity

I love this quotation from Louise over at Bloom: "Neurodiversity suggests that there are benefits to brains that think differently."
I agree.  
Louise goes on to review this article, which discusses the neurodiversity movement and how neurodiversity is an asset in the world we live in.  We've all heard that the world would be incredibly dull if we were all the same.  We all know that life is more joyful with different perspectives and different ideas.  
Here's a quotation from the article that focuses on some positive attributes that some Autistics have:
"Autistic people, for instance, have prodigious memories for facts, are often highly intelligent in ways that don’t register on verbal IQ tests, and are capable of focusing for long periods on tasks that take advantage of their natural gift for detecting flaws in visual patterns. By autistic standards, the “normal” human brain is easily distractable, is obsessively social, and suffers from a deficit of attention to detail."
Of course all these traits aren't relevant to all Autistics, but I'd say that most of us feel at least some of these qualities apply to ourselves.  Whether we are verbal or non-verbal, "high-functioning" or "low-functioning," or any of the other labels people feel the need to attach to autistic individuals, I think we all - at least in some way - mirror parts of this description.  
We all know that being autistic isn't the easiest thing in the world.  Autism makes life harder for a lot of people.  The Wired article briefly mentions some of the struggles - like chronic underemployment and in many cases unemployment - that are faced by Autistic adults.  But every once in a while, I come across amazing quotations like the ones above, quotations that make me feel proud of my neurodiversity.

Friday 26 April 2013

The Autistic Eagle Survey

Autistic Eagle has this survey this survey over on tumblr right now.  In my effort to share all things me and my amazing Autistic self here, I'm posting my responses. 

1. Are you autistic?
Yes.

2. Do you know autistic people socially?
Yes.  I knew many Autistic kids in middle school when I went to a school specifically for kids on the autism spectrum, and I have known other Autistics through various social skills groups and other activities.  I also have a few Autistic friends I've just met along the way.

3. When did you get your diagnosis?
Age 9.  Then again at age 11 by a "leading specialist" in ASD.

4. What is your genetic gender?
Female

5. What gender do you identify as?
Female

6. What sexual orientation label do you apply to yourself?
Heterosexual, at the moment, although that has evolved from asexual, which I identified as for most of my teen years.

7. Have you ever experienced depression that was not linked directly to autism?
Probably.  I've had anxiety and depression my whole life but always assumed they were related to my ASD diagnosis, although depression (particularly bi-polar / manic depression) runs in my family, so I wouldn't be quite sure whether it's totally ASD-related or whether there is a genetic component.

8. Have you ever had a meltdown in a public place that was almost entirely or entirely populated by strangers?
Yep.  Shopping malls are (still to this day) a big source of anxiety for me and definitely have triggered their fair share of meltdowns, especially in recent years.  Meltdowns in university classes aren't particularly fun, either.

9. Did you ever attend a school for children with mental conditions?
Yes.  I was in the special education stream in a "regular" elementary school from grade 3-6 and then attended a school for kids with autism spectrum disorders from grade 7-8.  I was mainstreamed in high school.

10. Do your parents/grandparents have any mental conditions?
Bi-polar disorder/manic depression and unipolar depression run in the family.  Other than that, nothing has been diagnosed.  

11. What is your favorite food? 
Probably a combination of chips and Diet Coke.  Or pizza with feta cheese.  Or a falafel sandwich.  

12. What is your favorite season?
Winter, because it's regimented.  I hate "free time."

13. What are your special interests and when did you pick them up as special interests?
Names.  I picked up a fascination with names when I was probably 2 or 3 years old and nearly 20 years later, my name obsession is something unmatched by any of my Autistic peers' interests.  (I'll post about this one day).  
Television.  I know every storyline from every episode of all the shows I enjoy.  I can tell you exactly what happened in any given episode and that episode's title.  My friends think this one's an interesting talent.
I used to have a "thing" for shapes.  I'm getting over that one though.
Multisyllabic words are no longer something I "collect," but they're definitely calming for me.  When I'm stressed out, I repeat "La Guardia" to myself and it always calms me down.  I've been doing that since I was six or seven years old.

14. Have you ever collected something?
Rocks, coins, little knick-knacks, and inspirational quotations.  Probably a lot of other things over the years, but that's all I have left.

15. What is the longest time you have ever spent on the internet, and what were you doing in that time?
Reading, probably, or watching television.  Or playing Tetris.  Or Bejeweled.  

Thursday 25 April 2013

Exclusion

I am wise.  I am smart.  I am confident.  I am capable.
I am well aware that I can also be "different."  I know it's "different" that I love to run around outside and I don't feel free unless I'm flapping my arms.  I know it's "different" that I have to force myself to make eye contact, and oftentimes I choose not to, because it's easier for me.  I know it's "different" that some textures disgust me and I have a physical aversion to yogurts and apple sauce and other "mushy" food.  I know it's "different" that, when I'm stressed, I pace and repeat words that I like the sound of.  I know it's "different" that sometimes my best friends see my Autistic behavior and feel the need to ask "Hey, have you taken your medication today?" as if they're helping me, as if it's something I could have forgotten, or as if taking my cocktail of six pills every night keeps my Asperger's toned done enough to make my company tolerable.
What I want to say to the world right now is that, despite the differences you sometimes perceive in me, I am a good friend.  You wouldn't like me if I wasn't.  You wouldn't have chosen to be my friend if I was as terrible as you sometimes seem to think I am.
Two friends are having going through difficult times right now and are not sharing with me.  I feel left out.  I am usually someone that people come to with their problems and now, I am having a very hard time feeling accepted by the people who are supposed to love me most.  I don't have a lot of friends, but that's not because I'm bad at friendship.  I am a good friend.  I like to help my friends.  I want to help my friends.
I might not be the best at helping, but I want the opportunity.  I want to try.  I want to learn how to be helpful. I want my friends to at least give me a chance.
This situation reminds me that, even the people who should be the most enlightened, sometimes still see my autism as a liability.
I hate this feeling.  I hate feeling like I'm being excluded because of my neurochemistry.

Wednesday 24 April 2013

Comforting Others

I am not a traditionally "supportive" person.
I do not enjoy highly emotional situations because I simply do not know how to react.  I feel uncomfortable.  I forget how to behave "appropriately."  I start shaking, stimming, flapping my arms, and shaking my hands.  My vocal cadence changes dramatically.  I speak in short, concise sentences with repeated, multisyllabic words.
When my friends are having difficult days, it is really hard for me to "be there" for them.  I really just don't know many ways to comfort adults, and my attempts are often clumsy, because I don't particularly want to be the person who is relied upon to comfort someone I love.
It's not that I don't love them or want them to feel better, it's just that I don't handle sad situations well.  When people are upset, I get upset.  And whenever I get uncomfortable, I find it really difficult to manage independently, let alone socially.
It's hard for me to comfort others.  I feel bad about that.  I wish I could be a "better" friend when it comes to comforting those in need.

Tuesday 23 April 2013

People Will Appreciate You

Sometimes, being autistic is like being any "normal" person.  But sometimes, being autistic makes you stick out "like a sore thumb."  I'm one of those Autistics who can "blend" rather well for short periods of time and in a familiar environment, such that I don't really have to talk to people or do anything new or uncomfortable.  A lot of people see me as eccentric, but most people don't assume I'm Autistic just from getting to know me a little bit.
A long time ago, I embraced my autism.  I learned to appreciate myself as a strong and confident Autistic with tons to offer the world.  But still, it took a long time for me to acknowledge that other people would see my autism as an asset.  
Maybe I'm the only one who's ever thought this.  But if I'm not, I just wanted to put it out into the world for all other people to know: you will be valued by other people.  There are people who love your autism, and these people will see your autism as something that makes you more you. 
I had a good day today and it felt important to share this message.  I don't have a big social circle, but I believe that the people who surround me love me regardless of my quirks.  In fact, I think they love me because of my quirks.  And that makes me feel really good.

Thursday 18 April 2013

I Lost My Phone *Cue the Anxiety*

I am a child of the twentieth century, but I've adapted well to twenty-first century living.  In high school, I had a mobile phone for emergencies; it was pink and relatively nice looking, but I didn't even know my own phone number.  I called my mother on it occasionally.  I never sent a text message.  I never even took that phone out of my backpack.
When I moved 4000 kilometers from home, I had to buy a cell phone.  I went to the store with my mother and she handled the purchase for me.  I stood by and listened to the salesman's instructions, but I didn't really learn too much.  I have been asking my mother questions about this phone for the past two years because I know she understood a lot more about it than I did.
I am now a person who carries her phone.  I put it in my pocket whenever I go out and when I'm inside, it's usually on the nearest surface.  I probably place two or three phone calls daily and send a handful of text messages to the people I'm closest with.  I've also started using my phone to tell me the weather and also to share with me the top news stories.  I've grown rather accustomed to my phone.
I lost my phone today.
I was having an anxious day and I begged a friend to come outside for some "fresh air."  We meandered around a field and some apartment buildings, jaunting to and fro with a rather impish attitude.  I skipped down the sidewalk, I jumped on rocks, I flapped my arms carelessly in the breeze, and I climbed everything that looked climb-able. I don't have the best balance, but it was past 8 o'clock PM and relatively dark, and I wasn't embarrassed to look silly in front of only my best friend.  We took a very long walk and traversed the same terrain multiple times.  It was very fun.  Or, at least, it was fun until I realized that my mobile phone was no longer in my sweater pocket.
I suffer a lot of anxiety when things don't go my way or when plans change unexpectedly, and let me tell you, this was not the ideal day for plans to change.  I went into a full meltdown state right there on the field, prancing back and forth, hopelessly begging my phone to return to me.  I'd been so energetic before, but suddenly I just shut down.  I sat still and burrowed into myself, my thoughts running wild. I panicked.  I was sweating.  I was shaking and flapping my arms and internalizing my pain.  I was frozen with fear and anxiety.  It was terrible.
I found my phone.  I don't know what else to say, other than this: I found my phone.  It was after forty arduous minutes of searching a very dark field and only with the help of a very patient best friend who I am even more thankful for now than I was yesterday.  I found my phone.  I am still having a very hard time being calm, but for the moment, things are back as they should be, and that small fact makes me just a little bit more comfortable.

Thursday 11 April 2013

Today is a Bad Day

I will endeavor to write this gracefully, but I am feeling very little grace at the moment.
I am feeling chaos.  I am feeling like my world is spinning out of control.  I woke up later than I wanted to.  I owe a colleague five dollars but was unable to give it to her, since I woke up late.  My friend worked all day and even though she said we'd get together tonight, she's decided she'd rather be alone.  I put so much effort into an assignment and now I have to reformat it.  I have to do two loads of laundry, have dinner, and plan a social activity for tomorrow.  I have a lot of dishes to do and a shower to clean.  I also have a headache, which is rather unpleasant.
I am an intelligent person and I know that this is not enough to ruin a day.  But still, today's activities have been poorly organized and interspersed with bouts of crying.  I have sat and cried for so long today that I feel numb.  I am overwhelmed by the amount of things that thave not gone my way.  I cannot think straight.  I cannot be productive.  I am really struggling to be content at all in this day and that itself is giving me anxiety.  
I had a meltdown over nachos today.  And then another meltdown for no apparent reason.  I am bored and I am tired and I am hungry and I am grouchy.  

Tuesday 9 April 2013

My Small Effort to Spread Positive Autism Awareness

I like this quotation from an excellent article in the Pittsburgh Post-Gazette: "Let me be clear -- autism is not a disease. Autism is a congenital variation in neurological structure -- and a lot of us take pride in our difference. We have our own heroes, leaders and traditions. Those of us who struggle with spoken language often participate seamlessly in the electronic conversation within our virtual clan. The digital revolution has allowed us to find one another and build supportive social institutions of our own. A few forward-thinking academic programs study our world as an independent minority culture."
Autism is not a disease.
Autism is a congenital variation in neurological structure.  
[We] take pride in our differences.  
I think those are the three things that first jumped out at me when I read this.  
It's Autism Awareness Month, and in my own small effort to spread some positive awareness about autism, I'm posting these three facts about autism and Autistic culture and I'm also asking my close friends to share these facts -- and others too, of course -- with the neurotypical community in order to tone down the alarmism and hate those uneducated about autism have a tendency to hurl toward us.  
It might be Autism Awareness Month, but unfortunately, this month of "awareness" seems to be more directed by neurotypicals trying to "cure" Autistics than by the Autistics themselves, Autistics like me, Autistics who accept that there are some challenges that come along with autism but are proud of their neurodiversity and the special gifts autism has given them.  
I don't have a disease.  I don't need to be cured.  
I have a congenital variation in neurological structure.  It makes me unique.  I add neurodiversity to our world.  
I take pride in my differences.  I take pride in my accomplishments.  I take pride in my confidence.  I take pride in sharing my experiences.  I am a proud Autistic.

Monday 8 April 2013

Tone it Down Taupe

Over at Radical Neurodivergence Speaking, there's this great endorsement of the Tone it Down Taupe campaign and this excellent graphic (see below).

Tone it Down Taupe is a response to the Light it Up Blue campaign that spreads autism "awareness" (but this "awareness" tends to dwell on the negative things about autism and really stirs up a lot of fear in people who don't know a lot about autism).  The concept of Tone it Down Taupe is rather brilliant.  Its goal is to "tone down" the alarmism surrounding autism and encourage all people to accept autism not as something to "fix" or "cure" but rather as something positive, something that makes our world more diverse.  The message of the campaign is simple: 49 out of 50 people lack autism!  And that statistic should be equally tragic to the statistic of 1 in 50 are Autistic.  And the amount of tragedy in both of those statistics should, of course, be none at all.

Sunday 7 April 2013

Analysis of an Argument

Yesterday, I got upset with someone after he suggested that I had been angry with him.
I am in university and it's finals season.  I had to study.  And he generously offered to help me.  He was reading off review questions from my notebook and I was answering to the best of my knowledge.  I expected him to know the correct pronunciation of "Wernicke's Encephalopathy" or "hepatocellular carcinoma" or "kyphoplasty."  Of course he didn't.  Nobody who hasn't studied biology or physiology would know what these words mean or how to pronounce them correctly.  But I have a mental block when words are pronounced incorrectly.  I can't see the mispronunciation and forgive it.  Instead, I get confused and wonder what that word is - that new and strange word - the word I don't know.  I get angry with myself because I feel like I have missed out on something I should know.  And  yesterday, when I finally realized that it's something I've known about all along, just pronounced incorrectly, I instinctively stated the correct pronunciation.
He accused me of being "short" with him.  He accused me of implying that he was "stupid."  I am completely confident that I did neither of these things, and the accusation hurt me.  But what I took away from this encounter was that what he saw - and what was he said were backed up in my expression and tone of voice - was that I was upset with him.
I have very little control over my expression or tone of voice.  Or, rather, if I can control it, I do so poorly.  I have been told this.  And I believe it as well.  I may use different voices, but I rarely put any thought into the voice I use and its correlation to my intention.
My point in all this: I didn't see the situation from the other person's side, and it's taken me over 24 hours to grapple with why.  And I still don't know.  I just know it was an emotional time for both of us  and I don't believe either one of us intended to hurt the other.  Sometimes, I give off "angry vibes" that I am not controlling.  That's just how it is.  I don't mean to be mean.  I don't mean to be hurtful.  I just have a very strong connection to words and find it difficult to understand context when things are mispronounced.

Thursday 4 April 2013

On Sheldon Cooper & Autism Spectrum Disorders

Since 2007, the internet has been abuzz about whether Sheldon Cooper - the popular main character of CBS' hit sitcom The Big Bang Theory is Autistic.  The show has never addressed this, leaving it, for the most part, up to the discretion of viewers to determine whether Sheldon is or is not Autistic.  Frankly, this is something I've never really been concerned about.  A lot of people originally noted Sheldon's Autistic qualities and decided he must have a diagnosis of some Autism Spectrum Disorder.  But what happened, over the years, is that the regular viewer just fell in love with Sheldon as Sheldon - as an eccentric rather than an Autistic - and the issue just sort of slid off the proverbial table.  Every once in a while, Sheldon's Autistic tendencies jump out from the screen.  And we notice.  We laugh and smile and enjoy Sheldon for who he is, Autistic or not.
And frankly, I think that's great.  I think it's OK that the show has chosen not to give Sheldon an official diagnosis and instead focus on his abilities.  Of course I know that Autistics are not defined solely by a diagnosis, but at the same time, I find it difficult to believe that the show would be as successful or as funny if Sheldon's behavior was suddenly explained by a medical diagnosis.  Unfortunately, our society is still in a place where it would dwell too much on the ASD itself and I'm afraid the show would lose its light-hearted humor.  
In many ways, I do see Sheldon as an Autistic stereotype, and honestly, I'm torn about how I feel about that.  I do not like stereotypes and I know all Autistics are different, but Sheldon Cooper is one of my favorite television characters because I really can relate to him.  Even though I like to think of everybody as unique snowflakes, it is true that our neurochemistry defines a lot about us, including some traits that are more prevalent in the Autistic community.  And I have many stereotypically Autistic qualities.
All in all, my current opinion on this - and this opinion has changed a lot since 2007 and may continue to change with more time - is that the show is not about Sheldon alone but rather about a group of friends with different abilities who all love each other in spite of perceived flaws.  And that's about the best thing I could hope for for anybody, especially someone on the autism spectrum.
I am so glad that I, like Sheldon, have loving friends who accept me regardless of my neurochemistry and who are willing to help me navigate the challenging world we live in.
And while many people are out there, searching the world for an official diagnosis of ASD for my beloved Sheldon, I'm satisfied just knowing that Sheldon is treated well, even though he's a little bit different than society's depiction of "normal." 

Wednesday 3 April 2013

Routines Are Important

Routines are important for a lot of people with autism.
Routines are very important to me.
Changes frighten me.  Plans are my only salvation.  And when plans change, I get very frustrated.
Last night, I had a meltdown because I hadn't had a shower.  It was a long, active, and social day in which I participated in multiple sports activities, played outside, played with children, and also played a borrowed game with friends.  Why was I stressed?  I was stressed because I felt unclean - covered in "germs" - and had felt the compulsive need to shower since after the first activity of the day.  Hours later, I was frustrated and grumpy and upset.  Things were not going my way.  I wanted my shower.  My brain was not having a good day and it was aggravated by a challenging social situation in which I found myself playing board games with two people I did not know well.  I was feeling anxious because I wanted to shower.  And I was feeling anxious because of the social get-together.  All the anxiety and discomfort eventually led to me melting down.
Sometimes, I can't control my routine.  When that happens, it's really difficult for me to manage.  I'm writing this now so I can "own" it.  I'm writing this because I do not like meltdowns, but they happen. I'm writing this because I think it's important that neurotypical people understand that Autistic people sometimes have meltdowns, and it's no fun for anybody.  We aren't trying to hurt you.  We aren't trying to confuse you.
I hate it when people I like complain about my brain.  I hate it when people are able to respect me so often but still struggle to accept my meltdowns.
And for me, routines are important.

Tuesday 2 April 2013

All About Me

Here, I like to write about being Autistic.  I sometimes find that in the rest of my life, I often find myself trying to "hide" my autism, but here, and elsewhere on the internet, in the warm embrace of the Autistic community, I feel comfortable to share the unique tidbits of my Autistic life that are particularly relevant to other Autistics.
But today, I thought it would be interesting to mention some unique things about me that have nothing to do with my autism.  Today, I'm going to share some facts about myself that relate only to me being human.
I love animals.  It started out as a love of cats - I even wanted to be a cat when I was younger - but has evolved to a love of all animals.
I love creative writing.  I have always wanted to be a published novelist or author of short stories.  I used to write a lot but that trend has slowed in recent years.  I still love writing though.  Hopefully I'll get back in to it soon.
I have wanted to be a mother since I was three years old.  My first career goal was to be a stay-at-home mom.
I really dislike reality television.  It's difficult for me to articulate why, exactly, but I think it has something to do with the fact that I have a deep love for scripted television, for beloved characters, and for the creativity of their writers.
I have always loved country music and musicals.  It's a strange combination, but those are the two categories of songs on my iPod.
In my fridge right now, I have two boxes of carrots, a loaf of bread, some garlic butter, a can of Diet Coke, a container of chocolate-chip muffins, and a tetra-pack of soy milk.
My walls are dressed with photographs of me with my friends, print-outs of my favorite song lyrics, small pencil drawings I designed last year, a series of cards I received for my last birthday, along with a handful of interesting-looking paper souvenirs 
I bought 60 packages of hot chocolate 2 years ago that I'm just now getting around to drinking because I've been very lazy about cleaning my kettle and/or never seem to be in the mood for hot chocolate.
I prefer Celcius to Farenheit.
I never enjoyed functions but I loved calculus.
The first movie I fell head-over-heels in love with was Practical Magic.  That movie made me want to be Sandra Bullock.
Ms Congeniality was pretty funny too.
But for the most part, I prefer watching television.  I don't usually have the attention span to watch TV for more than 40 minutes at a time.
I've been to a playground twice in the past three days.

Monday 1 April 2013

Educating People About Autism

I find it hateful when people state untrue facts about autism.
I find it hateful when people spew fallacies about the etiology of autism.
I find it hateful when people talk about "curing" autism.
I find it hateful when people say disrespectful things about Autistics.
Sometimes, it feels like there are two camps of people: those who think autism is a terrible thing and those who appreciate it as an amazing gift.  The first category of people, people who tend to act hatefully towards Autistics like myself, are oftentimes the people who spread false statements and create fear in the hearts and minds of people who don't know anything about autism.
Language around autism is such a convoluted mine-field and not something I feel comfortable discussing.  The dialogue among Autistics and allies and families and professionals is one thing.  When those ignorant to autism join the conversation, things become even more complicated.
What I do know is that these conversations are important.  We need to talk about autism.  And we need to invite all people to the conversation.  Everyone's beliefs and opinions will be different, but that is all right.  We need to share our knowledge.  Autistics need to speak.  Friends and families of Autistics need to speak.  The professionals who work with Autistics need to speak.  Everyone needs to be involved in the discussion.
It is really important that autism stop being the proverbial "elephant in the room" and become something we are comfortable talking about.  Because nothing is going to change unless we step up and share our expertise.  People will state untrue facts, people will spew fallacies, people will talk about "cures," and people will be disrespectful.  People will do all these things because they don't know any better.  It is our responsibility to impart our wisdom to these people so that there is less hate directed toward our community.