Sunday, August 19, 2012

Hitting, humming and twisting, oh my

Something different has been going on with me in the past month.  I think my stress reactions are changing, or something is at least, because I've begun doing things I've never done before.  Namely, I've started hitting and tapping myself and things around me more often, as well as humming a single note and twisting my body.  I'm not sure this is a positive development, but it's very curious.

At times, it seems like a new stim.  I tap my head over and over again when I'm stressed or overwhelmed by the environment.  Just this past week, I was sitting in my doctor's office and the combination of the air conditioner, people talking and doors opening became too much for me.  I wound up sitting with my head down, tapping the sides of it over and over to block everything out.

Other times, it's more troubling, like when I was at a music festival.  Sitting there, I wound up constantly shaking my hands, tapping them together, hitting the ground or my head or my shoulders and twisting my torso around.  I don't understand why I'm doing this, if it's an AS thing or something else.  I feel better when I do it, there's no compulsion or obsessive need to, but at the same time I don't want to do it.  I know I look crazy and I hate looking weird in public.

Sometimes it's calming, while sometimes it's not.  It's alien and unwanted.  I have to move, have to shake my hands and tense my muscles, have to hum a single pitch to myself or hit my shoulder with my hand over and over.  I feel like I'm not in control of my body when that happens.  My tics - the twitching and grimacing ones I usually have - aren't great, but I'm at peace with them.  These are a new senation.

Anyone else suddenly develop something like this?  Should I be worried about it, or just let it go and hope it goes away?

Monday, August 13, 2012

The best explanation of autsim ever

I've been searching for a way to easily explain my AS to people for a long time, and have come up with very little.  I have a habit of over complicating and getting lost in the details of what I'm trying to say because I know so much about this topic.  Where it'll start off fine, I end up getting into comorbidities and exacting details of everything and wind up confusing my listeners.

That's why I'm so grateful that MOM-NOS wrote a series of posts about how she explained her son's autism to his classmates.  They're from 2010, but I can't see them going out of date any time soon.  Her analogy about having a hair dryer brain in a toaster world is spot-on what it's like to have autism and how I view the world.  If anyone has a question for me about why I do certain things, I'll be directing them here.

MOM-NOS: A hair dryer kid in a toaster brained world

Tuesday, August 7, 2012

Why I'm a person with autism, not an autistic person

Tonight, as I was browsing through my tweets as I often do, I ran across an interesting post from Zoe at Illusion of Competence.  In her post, she explained why she uses the term autistic person to refer to herself rather than saying that she is a person with autism, and likened the latter phrase to implying that a person could simply lose their autism much like someone could lose their suitcase.

For me, using person-first language and saying that I am a person with autism is a way of presenting myself to the outside world.  For me, I'm saying to people "Hi, I'm a human being just like you, and I happen to have a neurological difference".  To me, that's positive.  To put my autism out first is to say "Hi, I'm different than you and you're welcome to treat me that way".  For me, it's not about separating myself from autism so that I might lose it but presenting my humanity first to foster acceptance.

Fact is, people are cruel, and many neurotypicals are cruel to those who are different than them.  By presenting my autism first, it would be not allowing them the chance to get to know me before judging me.

Most people who are LGBT don't walk up to a crowd and say "Hi, I'm a gay person".  While being gay is an integral part of their identity, it doesn't define who they are, and it's not the first thing they put out there in the world.  They know that there are people who will hate them simply based on that fact if its' put straight out there in front, but that a lot more people will be accepting and loving toward them if they simply let the world get to know them as a whole person, sexual identity and all.

Autism is a major part of who I am.  It's involved in how I think, how I interact with people, how I react to the world around me.  I would never want to lose my autism, and I don't believe that it's even possible to do so.  However, I want people to get to know the whole me, with my autism and everything else involved, and I find that people are much more accepting of my differences when they're simply introduced to me as "Annika", not as "Autistic Annika".

My use of person-first language is aimed at fostering acceptance of Aspies and Autsies among neurotypicals, rather than making myself stand apart from everyone else.  I want to be included in the world and be a part of it rather than making myself into an "other", someone who can't be involved.

I'm not going to tell anyone else to use a particular type of language - even I slip up and refer to myself as an autistic person on occasion, but I'd really like to know how you feel.  Are you an autistic person or a person with autism?  Why?

Wednesday, July 25, 2012

The days I wish to be normal

Some days - no, make that most days - I have a really hard time getting out and socializing.  I'm aware that interacting with people and having friends are what I'm supposed to do as a female young adult.  Even as a geek girl, I'm supposed to have a small group of friends I go out with regularly and invite over and talk to, people I can make plans with and actually follow through on them.  The summer is supposed to be a time of getting out, doing things and hanging out with friends.

My summer has mostly been spent alone or at work.  When I go out, it's usually with my cousin, who is the one female my age who I'm close to, or with my mom.  As much as I don't want to feel like this is bad, I feel pathetic.  This isn't what people tell me I should be doing.  If I were like most girls my age, I would be out doing things.  I would be able to go to the beach on a trip without having an anxiety attack or needing to schedule everything to the minute, or drive to an unfamiliar area and visit something new without being terrified or risking having a breakdown in public, or having someone stare at me because I'm flapping and bouncing all over the place.  I would be able to go on the camping trip I've been wanting to do all summer because I would have friends to go with me

When other people get involved, there are more variables, which means more change and more stress.  What if one person can't come and I was depending on them for something?  What if the driver decides to stop somewhere off the plan?  What if I get lost, or the place is closed, or I lose something important?  And then, the big one - what if I get overwhelmed and have a breakdown which leaves me nonverbal and unresponsive?  All these stresses pile up and make me not even want to go anywhere.  I want to stick with what is routine, predictable... safe.  What I know.  While logically I know that anything can be dealt with, I fear these variables.  They make it hard for me to get out.

When I think about how little I've interacted with people this summer, how few places I've gone, it hurts.  These are the days when autism isn't rainbows and sunshine and happy advocacy.  These are the days I want to be neurotypical, the days I wish to be normal.

Sunday, July 1, 2012

How I learned to beat my anxiety disorder

I have anxiety.  Officially, I have Anxiety Disorder Not Otherwise Specified.  Much like PDD-NOS, it's an incredibly vague form of a disorder where the symptoms are all there but don't present the way they might in a more specific version of it.

For years I was on a medication for it to help calm me down and let me function relatively normally without being paralyzed by anxiety attacks, a very low-dose anti-psychotic.  It worked well, but every time my doctor took me off of it, I'd spiral into constant paranoia, lose some of my functioning ability and have panic attacks.  On it, I had very few side effects and it allowed me to shake off the anxiety fairly easily, so keeping me on it was a no brainer - it helped far, far more than it could possibly hurt.

In April, after being on it for years, something changed.

Friday, June 22, 2012

We are all valid

All of our experiences with autism are valid.  It doesn't matter if you're a person who has autism, a parent of a child with it, an Aspie or a teacher.  Each experience you have is real and important, and it makes an impact on you.

The problem is that we have is a tendency to invalidate or question of the experiences of others.  We say that because the other person hasn't been through a certain thing or done something, their experiences with autism mean less.  Sometimes it's a parent saying to an Aspie something like "Well, you don't have real autism like my child so what you say doesn't matter".  Other times, it's a person with autism saying, "You don't know what it's like to have autism, so how can you know anything about it?"  I'm guilty of doing this.  It becomes a holier-than-thou battle which no one ever wins.

We can't agree - and probably won't ever agree- on the most basic concepts of autism.  What causes it, why, if it should be cured, how to deal with it, all of those things.  Because we can't agree, we find every little thing to fight over and often end up telling others that for various reasons their view of what autism is like is wrong, that they don't know what autism is really like.

I'm going to be trying to give up my judgmental attitude toward others.  I'd love for you to join me.  We might not agree on a lot, but we all have experience with autism in some way.  It's a part of all of us, and that unites us even in our great divides.

Monday, June 18, 2012

Happy Autistic Pride Day!

June 18th is Autistic Pride Day, a day every year when people on the Autistic spectrum are encouraged to be proud of who they are.  I think this should be something we talk about every day - everyone should be proud of who they are, particularly those in the autistic community.  We receive so much negative feedback from the world around us, saying that we're sick and need to be cured, that we're stupid or twisted - a day of pride is important.

For me, today is a day of advocacy.  It's a day to stand up and correct the negative, harmful assumptions about autistic people, to say "Yes, I'm autistic and I'm a person with the same rights and responsibilities as everyone else".  I have not worn traditional symbols like puzzle pieces or blue because those have been ursurped by cure organizations as symbols for their movements.  Instead, I drew an eternity symbol on my hand, the sign of Aspies For Freedom.

If you wore blue today, please reconsider your clothing choice next year.  The wear blue movement was started by Autism Speaks, an organization with a horrible reputation in the autistic community.  Lighting things up blue and wearing blue is intended to advocate for research to "cure" autism.   A cure isn't something which the great majority of aspies and autistics want, and the idea of it is offensive to most of us.

Today, like every day, I am confident in my abilities and proud of who I am.  I know that each and every day I learn more, I become more resilient and gain confidence in myself.  Autism isn't who I am, but it's a part of me, and it's a part I accept and embrace wholeheartedly, from the wonderful aspects to the painful moments.