Thursday, 31 January 2013

Schedules Are Important (To Me)

I wake up.  I go to class.  I eat breakfast.  I go back to class.  I treadmill.  I go swimming with my friend.  I go to the grocery store to pick up my prescriptions and also some snacks.  I come back home.  I eat lunch.  I sit alone for 5 or 6 hours.  I watch TV - probably The West Wing.  I check my internets - my email, tumblr, etc.  I go buy more food.  Maybe I text message a few people.  I eat dinner and have my meds.  I am skyped by my mother or grandmother.  I probably text message again.  I maybe do some homework.  I make a schedule for the next day.  I make some lists.  I read things that probably aren’t important but feel important at the time.  I have my soda if I haven’t had it already.  I maybe watch some more TV.  Maybe I check my email again.  Maybe I finish homework.  In preparation for bed, I clean my room - Lysol my surfaces and electronics.  I plan my schedule for the next day and pack my bag appropriately.  I brush my teeth.  I shower.  I climb in bed.  Maybe I watch a bit of relaxing TV, probably Frasier or some old Vlogbrothers videos on Youtube.  I sleep.  
I need a schedule.  I need a plan.  I get so anxious without a plan.  That’s something my friends don’t understand.  My friends don’t understand that I cannot function without a plan.  I need to know what is happening with me and with other people in order to feel comfortable and sane.  So right now I’m happy because I know what I’m doing tomorrow.  It’ll be hard tomorrow, when unexpected things change.  I hope I can get a bagel for breakfast.  If there aren’t bagels, that might be difficult.  I hope I can get soup for lunch.  If there isn’t soup, I might not handle that well.  
I’m old enough and self-aware enough that I see and understand my limitations.  I cannot spend more than a few hours of “social time” per day.  And that’s difficult.  I wish sometimes that it would be easier for me.  Or, maybe, what I wish is that people would understand what I need.

Wednesday, 30 January 2013

Brutal Honesty & Asperger's Syndrome

This is a quotation from a speaker callled Penelope Trunk.  I do not know Ms Trunk, but I really like this quotation, and after having done some research, I've learned that she is on the autism spectrum herself, with a diagnosis of Asperger's Syndrome.  Asperger's, by the way, is also my official diagnosis, though I often find myself lumped together with people all over the spectrum and I, myself, generally identify as "autistic" instead of specifying.  Regardless, this is a quotation that is so relevant for me.  This is a quotation that I wish I could show each and every person I interact with.  This is a quotation that makes me genuinely happy.
I was working on a job application today with my best friend.  I told her that the application wanted me to list some of my skills and I was having difficulty compiling a list.  She offered me "brutally honest."  At first, I didn't know what to make of this.  I asked if she was being facetious.  But no: she assured me that tend to be "brutally honest."  I guess that's true.  And honestly, I probably offend people.  I probably do, but the thing is: I don't intend to.  I didn't even notice I was "brutally honest" until it was pointed out to me, twenty years into my life.  Please enjoy this quotation from Penelope Trunk.  If you are on the ASD spectrum, perhaps you will see some of yourself in it.  And if someone you love is on the spectrum, perhaps it will help you to understand them better.

Penelope Trunk states:

Assume the person with Asperger's is not intending to offend you. Intention to offend is actually a complicated line of reasoning that someone with Asperger's doesn’t have…People with Asperger's want to be nice. It’s very important to them even though you would never guess that by their actions. So if you tell the person what you want, and give specific direction, they will always try their best to do it, because they want to be nice. That said, them trying their best might look to you like not trying at all…Just because someone with Asperger's says no right now doesn’t mean it’s no later. No is a defense mechanism for “I don’t like change.” You can try asking again a second time later.


I like that.

Tuesday, 29 January 2013

Weakness

It is terrifying to wake up to carpool to work.  It is early morning.  It is cold.  I know my schedule, I have a plan, and this gives me security as I walk to meet my colleague’s car.  
But then, there’s another friend in the car, and this friend is having an emotional crisis.  And it’s not my crisis and I don’t understand what she is feeling or how I can fix it, so I sit silently, rocking in the back seat of the car, sipping my tea and stimming.  
Suddenly, my day is unpredictable.  My day is chaotic.  Every thing I touch seems to break.  I no longer remember social rules; I regress to a younger version of myself and avoid eye-contact, deny people the opportunity to engage in conversation, and refuse to speak unless it is of something that I am interested in.  
I had an Autism Day today.  I met a trigger at 6 in the morning in a navy blue Nissan and now, 17 hours later, I find myself curled up on my desk chair, unable to think, kicking my feet uncontrollably into the bottom of the table.  My knees are bruised now.  
It is embarrassing when I encounter my own weaknesses.  I suppose that’s what I’m getting at here.

Monday, 28 January 2013

Break-Up Ouchies

My boyfriend and I broke up a few months ago.  We’re both 20.  We’d been together about a year.  He was my first boyfriend and also my first love.  And I miss him.  I miss him in a way that is cyclical.  First I miss him a little bit.  Then I miss him a lot.  Then I hate myself for missing him.  Then he’s out of my head.  It’s weird and it’s complicated and it’s painful and it’s strange. 
I am autistic.  He is autistic.  I miss that he used to “get” me the way NTs never do.  I miss that I not only lost a boyfriend but my best friend.  I miss cuddles and kisses and holding hands.  I miss him missing me. 
I don’t make friends easily and I guess I’m afraid I’ll never meet anyone as good as him, ever again.  I guess I’m scared of all the “what ifs” in my uncertain future.   
I get so anxious when I don't know what is happening and these last weeks have been brutal on my sanity.  I am nervous about the future.  I am nervous about how so much has changed.  I am nervous because I can see my social skills regressing.  I am nervous because this is all new and scary to me.  I am nervous because I wonder whether I was ready for it in the first place, or whether I will ever be able to be productive and in a healthy relationship.  I wonder whether I will ever meet another autistic person who can care about me like he did.  
Anyone have any advice?  Particularly seeking advice from autistics (especially autistic adults) who can relate or people who are just good at feelings? 

Sunday, 20 January 2013

I Don't Like Change

I am a methodical person.  I live each and every day in the same way.  When I make deviations from my schedule, they are only after careful and precise planning.  I want to know where I will be and what I will be doing at every moment.  This is the only way I can feel secure.  And I even have a compulsion to know what other people are doing during my planned activities.  That bothers my friends, I know, but it's not something that I am capable of changing.  I've been told to and asked to, but my brain is my brain and I can't bring myself to be all right with such uncertainty.  It makes my heart rate shoot up, it makes my speech pattern change, it makes my hands shake and my arms flap and my body rock back and forth or side to side.

I get anxious when plans change.  I don't understand why plans change.  It's a strange thing, really, because I am twenty years old and intellectually I accept that there is entropy in the world and some things are bound to change, but when it happens I still revert to almost a state of shock.

I have a letter from a doctor which states that I am "resistant to change" and that is "due to diagnosis of Asperger's Syndrome."

It's hard on me though.  I have spent my whole life aware that I like to be "in the loop," but invariably one day something will change and I will find myself floundering in space and time, unprepared for an uncertain future.  I detest little changes, and larger changes frighten me to the extent that it is currently midnight and I am lying in bed, unable to sleep, because I don't know what my future will hold.  I don't know where I'll be at 1:00 PM tomorrow afternoon, and that frightens me.  I don't know where my friends will be or where my family will be.  I don't know who they will be with and what they will be doing.  I am suppressing the urge to phone right now, to ask, and to make somebody promise to be at a certain place, so there will at least be some semblance of understanding of the future.

Spontaneity terrifies me.

Monday, 14 January 2013

The Days I Hate Autism

My best friend told me today that she hates my autism because sometimes she needs to talk about her feelings and I tell her to "get over it" because what she's feeling doesn't make sense to me and I'm uncomfortable around people feeling strong emotions.  She told me I was being selfish.  
I told her I was being me.  
I am 20 years old, and this is the first time I've ever encountered anyone who openly suggested that I would be better without autism.  
I am angry.  
I am angry and I am confused and I feel betrayed.  I want to change.  And I am equally frustrated by the idea that *I* am questioning my worth as an autistic person and by the knowledge that I will be this way forever.  

Sunday, 13 January 2013

Truths About Autism

I suppose it's possible that there are no universal truths, but in my 20 years of living with autism, I feel like I've picked up a thing or two about autism.  And maybe you don't agree with everything in this list.  And this list is probably not exhaustive.  But this is a list of what I think.
- Every autistic person is unique
- There is no such thing as a "high-functioning" or "low-functioning" autistic person
- Every autistic person has unique skills and abilities
- Every autistic person has difficulty with some things
- Every neurotypical person has difficulty with some things, too
- Nobody's autism is "more severe" or "more mild" than anyone else's
- All autism is equal, but all autism is different
- Autism is not a disease
- Autism doesn't need a cure
- Every autistic person has a different relationship with his or her autism
- It's all right to have a love/hate relationship with your autism
- Meltdowns are normal
- Stimming is normal
- Autism is not something to be ashamed of
- There are some things that, despite all the advocacy work, only autistic people will ever understand
- There are also things about NTs that autistics cannot understand
- Autistics are more adaptable than you think; we've been coexisting in a NT world for this long, we can keep it up forever
- Each autistic is the most knowledgeable person there is regarding his or her own autism
- It is all right to want to be "normal"
- It is also all right to want to be unique
- Some things are harder for autistics, but other things are harder for NTs as well

The Complicated Maze of Social Interaction Known as the "Party"

Sometimes, I can want and want and want and want to do something.  Yesterday, I went to a party.  It was at a bowling alley where they do a thing called "Cosmic Bowling," which involves loud music and bright colors and black lights.  Plus, as dictated by the term "party," there were many people there.  Many people.  Many people who I didn't know.  I knew I would have a difficult time with the party, but I was told about it weeks in advance and -- after my new philosophy to try to make new friends and be more social -- decided I would give it a try.
I do not like noises.  I do not mind one song playing on my iPod or one television show with regular volume and subtitles.  I do not mind the hum of someone else's conversation, so long as there isn't any other noise to obstruct the voices so that all the sounds seem to bombard my ears.
I do not mind lights, but I do not like when rooms are dark save for just a few lights, or in the case of black lights, when the lights distort the colors from the way I expect them to be.  I do not like the way the lights flicker and flash and how videos are projected on large screens above the alleys.  I do not like the abrupt jump-cuts of the videos or the angry screaming of music that accompanies them.  And of course, in neurotypical culture, as soon as the lights are dim and the music is loud, everyone starts gyrating and sing-/shouting along.
And the people.  I used to thoroughly detest any social occasion, but I'm not like that anymore.  With age and enlightenment, I have come to place extreme value on my friendships and other relationships.  But in a room filled with fifty people, I am never comfortable.  And in a room filled with forty-eight people I've never met, I'm even more uncomfortable.
I guess what I'm saying is: I enjoyed the party.  I hated the small-talk, I hated the music, and I hated the lights.  I hated the general disarray.  But in all, after nearly two full hours spent at the party, I was able to leave with my head held high, proud of myself for accomplishing something new.
A party isn't necessarily a big deal to most neurotypicals, and probably many autistics don't mind parties as well, but for me and my unique brain, parties are confusing places with many triggers.

Friday, 11 January 2013

When Autistics Communicate & Understand Language

I am verbal.  I have always been verbal.  I started speaking before I was one year old and I always enjoyed talking.  I always had a sophisticated vocabulary -- it was more pronounced when I was young because I'd use multi-syllabic words that no other preschoolers understood -- and I always liked to show it off.  However, sometimes, I did not enjoy talking.
When I am anxious or when I am having a "bad brain day," I sign (in ASL).  I understand people much better when they can sign to me as well as speak, because the two sources of information are the best way for me to process instructions.  Neurotypicals have told me it's "weird."  But a lot of my fellow autistics -- if you're out there somewhere -- maybe you know what I mean.
I cannot watch television without subtitles.  This does not mean that I turn the volume off -- no, instead I watch with the verbal dialogue supplemented by subtitles at the bottom of the screen.  I cannot understand television without subtitles.  I can hear and I can comprehend the words, but but only after hearing and seeing a show can I explain what it was about.  My brother used to hate this when I was younger and I monopolized the TV.  I'd always complain I couldn't understand the show properly when he'd switch the subtitles off.
I type incredibly quickly.  That is both a subjective argument and something I have been told many times.  I type most conversations out before I have them and I script all my phone calls.  And when I type, I organize my thoughts much better than when I try to explain things with my words.  Sometimes, when I'm having a bad day, instead of explaining it to my friends or my mother, I'll send a quick email.

I guess my point here is that there is a misconception in the world that autistic people either speak constantly or do not speak at all.  There's this conception that being autistic means you're one or the other - you're "low functioning" or "high functioning" (just FYI I absolutely hate those terms) - when in fact, every autistic person  is different and there is no "low-" or high-" functioning.  I've met a lot of autistic people in my life and I know that we all have different strengths and weaknesses.  For some people, communication isn't a strength.  Some people augment verbal communication with other types of communication.  Some people choose not to communicate verbally at all.
And that's OK.  There has been so much progress in the neurotypical community when it comes to understanding autistics and what makes us unique, but more work needs to be done.  Some autistics communicate like neurotypicals, some autistics communicate differently, and some autistics communicate in a way that encompasses both these choices.
And no matter how you choose to communicate -- via signing or typing or speaking or gesturing or just by behavior -- that's OK.

Monday, 7 January 2013

Autism Is NOT An Excuse

I wrote this on tumblr.  I'm new to tumblr, but so far I'm sort of enjoying it.  It's complicated, but I like it most of the time.  I'm sure I'll figure it out eventually.  Tumblr is a weird little creation but one I'm remarkably fond of, even considering the short period of time we have known each other.  Tumblr is challenging sometimes -- there are some pages with such an assortment of bright colors and moving pictures that sometimes I just can't bear to look at my screen -- but also there are pages with photographs and quotations and videos, all of my favorite things.  Regardless: here is a little piece I wrote on tumblr and entitled "Autism Is NOT An Excuse."

Dear World,
When I say I’m autistic, I’m not telling you to go easy on me.
When I say I’m autistic, it’s not an apology for the way I react in some situations.
When I say I’m autistic, it doesn’t mean I don’t have thoughts or feelings or want to make friendships.
When I say I’m autistic, it’s not an excuse for why I’m not good at some things.
When I take medication for my autism, it’s not to make me seem “normal” or act “normal” - it’s to help me cope with the stresses of a neurotypical world on my autistic brain.
I love being autistic even though sometimes I get frustrated being autistic.  And if I tell you I have autism, it’s just information.  I also have blue eyes.  But you’re not going to think my blue eyes are an excuse for being bad at making friends or for waving my arms around too much or for making funny noises.  
When I say I’m autistic, don’t use “autism” as a cover-all excuse for everything you think I cannot do or everything I do differently.
Sincerely,
Me

Useless piece of trivia: if you're a tumblr-er, my tumblr address is fearhopedietcokeandrainbows.  You can check it out if you want.  It's all right, if I do say so myself.  I'm just starting at this whole tumblr thing, so presumably I'll get better.  


Sunday, 6 January 2013

In Which I Discuss Stimming

For many autistic people, stimming is a normal part of life.  

This image is from the Autism Women's Network and I love the message here.

I stim a lot.  I shake my hands.  I repeat words I like, words that usually have no contextual relevance in the situation.  My legs shake.  I stomp my feet.  I shake my head back and forth.


I stim more when I'm stressed.  I stim more when I'm anxious.  I stim more when I'm nervous.
Recently, I've been stressed, anxious, and nervous.
So recently, I've been stimming a lot.
I always feel the need to apologize.  I stim and then later I feel self-conscious and I am afraid about what people think about me.  But stimming is nothing to apologize for.  Stimming is natural and normal and comforting and harmless and wonderful.  
Thank you to the Autism Women's Network for reminding me of that.

A List of Current Thoughts

Love.
Pain.
Brokenness.
Sadness.
Frustration.
Anger.
More pain.
A very visceral pain.
More anger.  Anger because of the pain.
And anger because of the lying.
Vulnerability.
Anxiety.
Fear, because of the unknown.
Fear, because of the feelings.
Fear, because I do not understand the feelings.
Anger, because I do not understand the feelings and I do not like the fear.

Feelings and thoughts can be difficult for any person to decode.  For me -- and also for some other people on the autism spectrum -- it is hard to understand feelings.

It has taken me months to compile this list.  This is how autism affects my own thought process.  Sometimes I struggle with autism because of my interactions with others.  But recently, my autism struggles are in my own brain and blocking my understanding on my own thoughts.

Saturday, 5 January 2013

Say What You Mean & Mean What You Say

This is just a rant, inspired by some social situations I'm experiencing and I am struggling to understand.  Being on the autism spectrum makes it difficult for me to decode social interactions.  I'm not saying this is true for all autistic people -- I know a handful of very social autistics -- but for me, it is difficult to make and maintain friendships and often those difficulties stem from challenges relating to communication.
Oftentimes, I can see that there is a deficiency in my knowledge or my understanding, but it takes me a while to find out why.  So, upon reflecting, I think it all has to do with my own philosophy of "say what you mean and mean what you say."  Specifically, because not all people say what they mean and mean what they say.  So, voila, my thoughts:

I don't like liars.
I don't understand lying.
I don't know why people would say something that they don't mean.  The whole purpose of language is to convey meaning and truth, so why would anybody distort that?  Stating untrue things literally defeats the purpose of language.  Lying is not communication because it does not convey information clearly.
I have told many a "white lie" in my time.  But when I say something, I mean it.  When I say what I want, I do, indeed, want that.  When I say what I need, I do, indeed, need that.  I try my best to communicate clearly.  And I hope that others will communicate clearly with me.
It is frustrating when people lie to me.  It is frustrating when people say things that they know to be untrue.  It is frustrating when people say things, then I behave in a way congruent with what they have said, but I later find out that they actually would want something else.
I don't like it when people leave me "out of the loop."
I don't like it when I am the last one to know things.
I don't like secrets.  I don't understand why we need them.

Understanding Emotions and Estrogen Soup

Emotions are difficult for some people on the autism spectrum.
Not necessarily, of course, but for many people with ASD -- me included -- it is difficult to deal with emotions.
This is not because we do not have emotions.  No, I have yet to meet an autistic person without emotions.  Rather, this is because sometimes, people on the autism spectrum struggle to express their emotions or even quantify their emotions healthily.
It took me a long time to be able to define my emotions.  I do not remember a time when I did not feel, but I  can think of a thousand instances when I struggled to describe my feelings.
Today, I am feeling a new meal of feelings that I call "estrogen soup."
Today, I feel frustrated.  I feel anxious.  I feel nervous.  I feel vulnerable.
Today, I feel lost.  I feel confused.  I feel angry.  I feel vindictive.
Today, I am unsure about whether these are the feelings I am genuinely feeling, but when I consider these definitions, I think that I'm at least partway there.  It took me a long time to realize that the best way to solve my problems is to identify my problems, and I'm just starting to see that the best way to avoid meltdowns and to manage one's own feelings is to first identify and accept the emotion and then tackle it.  You wouldn't try to build a rocket ship without extensive knowledge of the physics and mechanics involved and the knowledge that what you are building is, specifically, a rocket ship.  So how can you process "sadness" until you have identified the "sad"?
Today, I am floating in a puddle of estrogen soup.  I am managing my emotions, but just barely.  I have identified some of them but I still have itchy, anxious feelings crawling at my back and shoulders, tempting me with their newness.
Today, like so many other days, my emotion "frustration" is derived from my frustration with myself for being unable to identify my complex needs.
I am not happy today, I know this.
Hopefully, tomorrow will be a happier day.

What You See Is What You Get

I am talking about the common expressive phrase "what you see is what you get," which has a meaning similar to "say what you mean and mean what you say."
I say what I mean and I mean what I say.
Some people call it "brutal honesty."  Some people just call it "honesty."  Sometimes, it can be considered "rude," although I rarely can delineate these times from the rest.
I have been known to tell people that I do not like them.  I have been known to take thoughts that should remain "internal" and vocalize them externally.  I don't do this to frustrate or to anger; I do this because this is how I understand the world.
Language is used for communication and I have great respect for language, thus great respect for communication.  So the idea of communicating in an unclear way is completely foreign to me.  I am twenty years old and I simply do not understand the reason some people feel the need to lie or to mold their truths in a new way.
Recently, I realized that not all people communicate the way I do.  I do not mean that not all people communicate verbally -- of course I know this, I know many non-verbal people -- but rather that not all verbal people use language solely to tell truths.  A woman in class complains about another student's obnoxious personality, but as soon as the student in question arrives, the woman is as kind to her as she would be to a sibling or a best friend.  Why?  Has her plane of existence shifted and she is now in a dimension where she enjoys the company of this person?
For a lot of people, this is easy to understand.  I explained my situation to my mother who told me that this is just how some people are.  But for me, this is a complicated concept to fully comprehend.
Is this the fault of autism?
I don't know.
I just know it confuses me.