12 July 2015

Aspie life, Depression, Suicide, and me

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Title of the post grab your attention?  Good.  Take a seat for a bit while I share some things.  This post is raw, a bit unpolished, kinda long, and one of the hardest I've written yet.  I'm writing it because of things I've learned over the last couple of years, about being on the Asperger's spectrum, about depression, and about myself.  Every time I've gotten knocked down the last couple of years, I've pulled out my research skills to learn something new about being on the spectrum and I want to share some of it here.

A caveat before I begin, while I mention things that happened to me, in some cases exact words used and exact situations, I'm not pointing fingers, shaming, or attacking anyone involved in the situations.  I want to share my experiences, my life, so that it helps others.  I'll never mention anyone by name and if you recognize the situation, please understand that while I may not like what happened between us, I do not blame you for the decisions made.  I hope this post will help all of us.

Now to begin.

As of 2012 in the United States alone, adults over the age of 18, 6.9% of the population experienced or dealt with at least one major depressive episode.  Add in people under 18, and the percentage increases to well over 7%.  Information from the CDC puts that number at 1 out of 10 people that you meet every day is dealing with depression.  And those numbers are underreported, because of the stigma of being associated with it.  As the stigma slowly lessens this number grows.  An inforgraphic from healthline.com indicates that the number of diagnoses with depression grows by 20% each year.  So chances are likely that 2 or 3 out of every 10 people you meet is dealing with depression.  While suicide and depression don't have to go hand and hand together, they are often associated with each other.  Many that suffer from depression often look at suicide as an end to the hurt and pain that they can no longer bear to suffer from.  Looking at a suicide fact sheet from the CDC indicates that 3.7% of adults in the US have suicidal thoughts, 1% make plans, and .5% make attempts.

Got that number in your head?  Good.  

Because those numbers are even higher in the Asperger's community.  Depression and anxiety go hand in hand together with Asperger's, no wonder given the challenges we face in interacting with the world.  At present there is not a definitive number to point to, as research is only just now really beginning, even those the two have been correlated together for some time.  However, recent studies indicate that 30% of adults with Asperger's are diagnosed with depression and 60%+ of those under 18 are diagnosed with depression.  Some even give figures of 75% or more on the spectrum (all ages) being diagnosed with depression.  Even more troubling a recent study conducted in the UK and published in the journal Lancet Psychology on Asperger's and suicide.  The team conducted a survey among 374 adults that had been diagnosed as being on the spectrum between 2004 and 2013.  66% reported suicidal thoughts and 35% of those reported plans or attempts at suicide.  Look at that number.  66% vs. 3.7%.  

Now, I'm sure some of you going, but you're looking at the US vs. the UK, smaller sample size, only one study, blah, blah, blah.  It doesn't matter.  Why?  Because only in the last 5 years have there been real efforts to look at and help people on the spectrum and more research is needed.  Even more disturbing, look at the percentages.  66% reported suicidal thoughts.  10 TIMES MORE than the average person!  10!!  (Number quoted from the article cited above)

Why do I go through all of the trouble of talking about this?  Because this is my life.  I battle depression, anxiety, and in the last few years have struggled with thoughts of taking my own life.  And if I'm honest with myself, I've wished to have another life since I was 6 years old, because I knew I didn't fit in and I couldn't understand why.  All I could think was, if I was something or someone else, life would be better.  I'd fit in better to the world around me.  And that's a form of suicide in itself.

I've had a lot of very well meaning people try to offer advice on how to handle depression, anxiety, and my struggle to fit in.  They tell me about the challenges they've faced or things that they've read about it that helped them or others they know.  They share experiences and try to help.  But after awhile they get worn down and leave.  Either because its dragging them down, or that I'm not following their advice to a T, or they're just tired of me talking about it.  And I get it, I do.  They want to help and they think I'm not listening or trying.  Or they think I don't understand that other people don't deal with the same issues  But here's the thing...I am listening and trying and hearing.  I do understand other people deal with depression.  But think about it from my perspective for a moment.

Being on the spectrum means that I have no idea of what is "normal" when dealing with people.  Seriously. I look at groups of people and all I can think is...how do they do that?  How do they interact together? How do they have conversations? How do they know when to stop? How do they know who their friends are? How do they know when to share and what to share? How did they decide to get together today?  How do they make plans for the next time? How long do they wait before making plans for the next time?  How do they communicate that?  How do they tell jokes? How do they know when to laugh?  And on, and on, and on.  That's what I think when it comes to interacting with people.  I have to ask myself those questions every, single time it comes to interactions with new people or a different mix of people or I have to take into account the last time I talked to one person, they seemed pissed at me, but are they really pissed at me or was it something else?  I have to build a script into my head of how I need to approach and interact with things, which is great when its one person! But you and on more and more people...and it becomes overwhelming. And recall in my last post I talked about rules I have to build in my head?  Rules of what's funny when and to whom and in what situation.  Some rules are about 40 lines of code long based upon situations, time, day, etc. And what happens when the script doesn't go the right way? Chaos. My mind swirls and tries to figure out how to recover from it.

Did that make your head hurt reading it?  That's what its like in my head every second, every minute, every hour, of every day that I have to interact with people.  That's what I deal with on a daily basis.  When you're offering me advice, well meaning as it is to say "You know everyone struggles with that, you just have to BS your way through things. It's like improv!" or "Open your window and get some light" or "Be positive! Everyone will like you more."  I have to run all of those situations through my head.  Each time.  What are the variables? What are the computations?  And after a while...I can't.  I can't make it work because it's too complicated.  Or I just know it isn't going to work, because...well I do understand my brain well enough to know I can't suddenly walk into a group and go "Hey! How are y'all? Can I sit with you? How's your day going?"  I have to build the script first. I have to run the computations.  And if the script breaks...I do.

And I know, I know some of you are thinking "Well quit being stupid! Make it simpler! You can change!"  And to that I say BULLSHIT!  Seriously, some things I can change and learn from.  But basic functions of my brain?  I'd have better luck convincing my body to grow a third eye.  Think about it this way, you wouldn't walk up to someone with PTSD or Severe Social Anxiety Disorder and say "Hey! It's all in your head get over it and yourself!  You can do anything!" would you?  (and if you answered yes, please kindly let someone smack some sense into you.)  It isn't easy.  And some thing...some things I just can't change.

With that in mind, I want to share a small primer about myself.  In the last couple of years I've had people ask me about what it means to be Asperger's and everytime I answer...it changes.  Not because the previous answer was invalid, but because I've learned more about the condition everytime something happens.  So here's a primer on me and the spectrum at the moment:

I view myself as a kind, caring, compassionate person and a good listener and a good friend.  I'll go to the ends of the known universe and beyond for probably almost anyone.  I'll stand by your side when you need me, I'll give you my trust, and I'll help as much as I can in anyway possible.  And I'll take the rear guard to watch your back and jump forward to protect your front if you need it.  In a lot of ways, I'm a like a giant 5 year old kid.  That age where we can become best friends because we watch the same cartoons, like the same flavor of lollipop, and agree that we'll fight the monsters til the end of the day.  I have a good first sense of who people are, who to trust, and who not to.  I'll be polite to you as I can be even if you fall into the category of people I don't trust.  I'll give you a chance to earn my trust and once earned, it takes a good bit to break.

But I don't like bullies.  Physical, verbal, emotional, whatever.  I'll stand up to you, I'll tell you off, and I'll fight for those that I care about.  I'll push and prod and nudge if I need to so that you can speak your side of the story, but I won't tolerate someone hurting people that I care about.  And I have a long memory.

When it comes to relationships, I'm like a 5 year old kid.  That age where we can become best friends because we watch the same TV show and like the same flavor of lollipop.   That age where you trust easily, recognize the bullies quickly, and try to get along with everyone.  While other people grew out of it...I didn't.  When people have told me lately that I'm trying to be friends too quickly, I literally don't understand that, because it isn't how my brain works.  I trust easily and take people at their word unless they give me reason to think otherwise.  If I think we connect and I like hanging out with you, then I'll call you a friend.  If I like you, like you (like in a crush), I wear my heart on my sleeve openly and freely.  99% of the time, I know that nothing will ever happen and I don't say anything about it.  If I trust you enough, if I consider us good enough friends, then I'll openly tell you that I have/had a crush on you but I don't expect it to go anywhere.  Apparently this isn't common or normal...but it's what I am.

If you ask me my opinion, I'll give it to you.  And based upon the rules I've learned over the years, if you say "Don't you like my new boots?  They really make my legs look nice don't they?", I'm going to say "Wow, your legs really do look nice" because I figure that's what I'm supposed to do.  And I'll probably say it another couple of times because...well I think its still what i'm supposed to do.  I don't mean to make people uncomfortable, its just what I think I'm supposed to do.

I'm honest to a fault.  I'll give you my opinion with no bullshit, because its how my mind works.  It may sound like I'm being rude or negative or just trying to be mean, but honestly....those thoughts don't enter into my head 99% of the time.  I'm just telling you what I think or how I feel.

I've been told that I glare or don't look approachable or look hurt or thousands of other things when people are approaching me or giving me feedback and....honestly 95% of the time...that's not how I mean to look.  As part of being on the spectrum, I don't always display the right expression to match my emotion.  Why?  Because I don't understand a lot of facial expressions.  I've gotten better over the years, don't get me wrong, but...when it comes to displaying them myself?  Well...I never learned how.  Do you know how hard it is to teach yourself something that comes naturally to other people?  It's like trying to learn to work with your non-dominant hand and become ambidextrous.  I can do it...but it takes practice and help and...well to be honest I didn't know that's what I was doing until a couple of years ago.  Nor did I have any clue how bad it was.  

Its hard for me to talk about myself.  I mean, I know this post and others make it seem like its easy, but, everytime I set down to write I start thinking "Well...if I talk about this I may piss off this person.  Even though we aren't talking anymore I don't wanna do that.  Maybe I'll skip that. Well no...I can't.  I'll just...I'll just say at the top this isn't about any one person maybe that will work."  Seriously.  For everything I've shared I've had to stop and think.  At one point I even considered emailing one person and saying "Hey I'm writing this please dear god don't think section is about you because it isn't, its about other people."  And the other issue is as I've mentioned before...I have no concept of normal.  I mean, how do other people feel? Is it normal to feel down? I never identified with depression before because people told me "Oh everyone feels down from time to time"...it was only when I researched and told the doctor that my down times last for a week they went "Yeah...yeah that's not normal.  Let's get you some help."  

Matthew Rozsa wrote this great post about his experience on the spectrum and this paragraph really hits home for me:
If you have Asperger's, however, the nonverbal aspects of communication do not come naturally to you. Although people with Asperger's are no more likely to have linguistic or cognitive difficulties than anyone else, we do not automatically process the thousands of ways people communicate nonverbally. As a result, we have enormous difficulty functioning in social situations, from abiding by the unspoken rules of etiquette (and there are so, so many) and gauging how to avoid dominating conversations to coming across as inappropriate or rude without intending to. If life in a society is a game (and make no mistake about it, it is), having Asperger's forces you to play while learning two-thirds of the rules as you go along, even as everyone else knows them instinctively ... and assumes you do too.
I apologize too much.  Which, honestly, I didn't realize was a thing.  But this article gives a pretty good idea of what goes through my head when I make a mistake and I'm owning up to it.

Penelope Trunk summarizes it well:
You know when you’re on the highway and everybody moves along like a ballet – merging, exiting, changing lanes. There’s moving over for a truck. There’s moving away if you’re blocking someone who wants to go faster than you. There are all kinds of unwritten rules we adhere to in order to not run each other over. 
The Asperger car is the one on cruise control at exactly the speed limit. Technically, that’s what everyone is supposed to do, but there are a million scenarios where if you refuse to slow down or speed up, you actually make everyone else’s life hell. 
But there’s no way to tell that annoying car, “Hey, you’re breaking the law,” (because they’re not) and you can’t tell them, “Hey, you’re being inconsiderate,” (because they’ll say, “Well, that merging car could have slowed down until I got by.”) You can’t tell that car, “Hey, there are some unwritten rules you’re not paying attention to.” (They’ll say like what? And then they will argue. 
So there’s no way to tell the annoying car they’re annoying because they actually don’t understand the concept of annoying. They only understand the concept of right and wrong. People with Asperger’s have an intense need to do the right thing the right way. But often they fail to see what that is: Am I doing the speed limit? I’m right.
Some other things are mentioned in these posts.  Broad, generic, or specific to one person...sure.  But they apply to me as well.  This one really hits how I talk and speak.

So...this is me in a nutshell.  So what do I hope happens from this post?  Maybe some conversation.  Maybe people that I've hurt in the last couple of years will better understand where I'm coming from.  Maybe people in the future will better understand me.  Do I expect this to be the magical solution to fix relationships I've lost?  No.  But it at least lets me put things out there as a start.

NOTE:  I've used my best research skills to pull together the information in this post from reliable and up to date sources, but I am not a doctor and did not take part in any of these studies.

07 July 2015

Something about me

I'm not sharing any pictures with this post, because none would seem right.  Instead I want you to read something, about someone else, but how their story relates to me.  And then...go from there.

This morning I was catching up on my RSS feeds and was reading a post on Mashable, when I saw a picture on the side of the page about a teen on the Asperger's spectrum and a recent encounter he had with some bullies.  Being on the spectrum myself, I had to read it.  And I followed the link to his Mom's facebook page, and what she shared there.  Please stop for a moment and go and read it...I'll wait.

Not read it yet?  Seriously go back and read it now.

Smart kid no?  But I have a lot of thoughts swirling in my head about what the kid is going through, but I wanted to share this to point out a couple of things that I experience...still.  On a daily basis. With adults. With teens. With people in between.  While I've not had the physical bullying (at least not in a very long time), but what's said about him, being "weird", rude, uninterested, detached, etc...those are all things I've had said about me.  The experience of trying to understand rules and then not understanding how to break them or when its ok to break them or that everyone seems to have different variations of what they consider the "right" rule...that's what I go through on a daily basis.

Do you know how hard that is?  To just make it through normal life is bad enough sometimes, but to have to add in the fact that you don't understand social interactions when everyone else seems to get it, sucks. A lot.  And I know, I know some of you are sitting there saying "Oh we all experience that from time to time."  No...no you don't.  You don't have the anxiety of watching people to figure out what they do, what they say, how you're supposed to approach that person that you're interested in, how you're supposed to talk to someone that you want to be friends with, how to just ask someone how to hang out with you over the weekend, how to hold down a job, how to talk to a boss, and thousands upon thousands of other things on a daily basis.

The only way I know I survive is by building rules into my head.  If x + y then do z. And it gets more complicated as I get older and find that people do things differently based upon where they grew up, how they were raised, who they were raised by, what year they were born, what their life experiences are, and so on.  And there's no manual to read!  And if you don't instinctively understand it, then a lot of the time its "Fuck you! You're weird leave me alone!"  Or "Fuck you! You seem like a nice guy, but you aren't. You're mean!"

That's what life is like for me.  Every. Single. Waking. Day. I have to learn rules and then have to keep up with how they change for each individual person or each group or anything else.  And its hard.  It increases my depression and anxiety.  It makes it hard to function on a daily basis.  And people...god people don't make it easier.  Some are just bullies to begin with.  Others think they understand, but they get frustrated after a while of not acting exactly like them or in the way they think I should.  And no...not everyone is like that.  But a lot.

And I know some people are thinking, "why didn't you ever tell me it was like this?  Why didn't you share? I would have tried to help!"  And the answer is...for a long time, I thought this was normal. And then when I found out it wasn't?  How do I put it into words of what I go through everyday?  And sometimes...sometimes when I did share it and put it into words, people got scared and ran away.  What do I do with that?  Do I risk losing what I have, because of the possibility that everyone will react that way? How do I know?

And that's why.

I don't write this for sympathy or to badger people into changing, but instead for understanding.  Understand that we're all different.  Maybe the guy next to you really is an asshole.  Or maybe he acts that way because he's on the spectrum and been hurt so many times he gave up on trying.

And one last note.  Remember just because you don't physically hurt someone, doesn't mean that you aren't a bully anymore.  Words can hurt just as much, if not more.


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29 June 2015

Normal isn't real

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Lately I've been thinking a lot.  About who I am, what I am, what is real, what isn't real, dreams, reality, dinosaurs, etc. etc..and I keep coming back to a few things.

1)  That we live in a very weird and disturbing world where we try to tell people that they aren't people, because they don't conform to our idea of "normal" or reality.  Apparently being different means that you aren't really human, you're something else, like an otter.  I pick otters, because at least otters are cute and playful.

2)  That we have trouble accepting what someone is trying to change and grow, even though it doesn't match our version of "normal" or how we do things.  This is something that I experience a lot being on the Asperger's spectrum.  For example, how I take criticism.  I honestly thought I took it well, because I want to learn and improve from it.  I found out recently from several people I trust and that care about me, that nope...I'm kinda of a defensive asshole about it.  It isn't how I mean to appear and I've gotta figure out how to work around that, but I'm willing to change.  Some people though...just don't understand that.  They think I'm just an uncaring asshole, even though I'm trying to learn.  And part of the problem is that no one has ever told me this before.  Or not in a way that stuck with me.  I mean, I don't know about y'all but I can't change what I don't know.  And if you tell me "Well you know some people have trouble accepting criticism" I'm going to go "Yep, they sure do" and not realize that you're talking about me, because...well I'm oblivious unless you sit down and go "OK Andy, this is hard to say and hard to hear, but when someone is giving your critical feedback you're reacting this way."  And I can say "Wow...well that's not what I meant to have happen.  What I'm trying to do is ask questions and figure out what the heck is going on and how I can improve.  I'm not trying to be an asshole."  And we can come to some type of shared reality and go forward.

3)  That as a collective humanity tends to have their heads stuck in hole in the ground, insisting that they're getting enough sunlight coming in through the gaps in the ground and that if we try to take them out of it, that there's just way too much sun, and screw seeing colors and shit we've never seen, we like our hole and we'll stay in it!

Lastly though I'm realizing that...normal isn't real.  I wrote a post a while back about normal being bullshit, but I've realized normal isn't real either.  It doesn't exist at all.  It's this ideal that some people have about wanting us to be stuck in a group together so that we can determine how other people should behave or should act or should think and so on.  And while it sounds great in theory...it isn't.  Because we as a culture take it to the extreme.  We look at the most popular or biggest group and say "OK those people are normal that's how we should all act.  They get 8 hours of sleep, work 40+ hours a week, have 2.5 kids, a dog, a house, a white picket fence, eat meat & drink and read about business and the news" and so on and so forth.  And while it's great they don't do things that are decidedly wrong...how is that something to strive for?  How is that something that we should all do?

And we extend it to behaviors as well.  "Its not normal to ask so many questions!"  "Its not normal to act like an asshole while accepting criticism!"  "Its not normal to not know what type of face that your making!" and on and on and on.  There are other ones that I've gotten, but I'm not at a point where I can write them out yet.  Or feel comfortable writing them out yet.  But, I've been told enough times in the last few years that I'm not normal, that I hate the word.  Some people were trying to help, some were trying to bullies, some were somewhere in between...either way.  Normal is a horrid word.

We are a wide and diverse group of people, with a variety of ideas and talents and concepts, why should anyone have to fall into "normal"?  Why can't we accept people for how they are and encourage them to leave "normal" behind?  And to explore the limits they can reach?  I know this encourages good and bad, but...we soar to far greater heights when we tell people to reach for the stars than to be "normal."  How far can you reach?

10 June 2015

Thinking Type Things

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Let me start this post off with a bit of a caveat.  This is going to be a post that makes people uncomfortable.  If you want to turn away now, that's ok.  If you want to stay, that's ok too.  And for some they'll likely be wondering if the things I'm writing are directed at them.  And the answer is yes.  And no.  Its not written with anyone specific in mind, but with everyone I've ever encountered in my life.  If you read something and think I'm making comments about you, pointing fingers at you, or whatever, please don't take it personally.  I'm not.  I'm just trying to get thoughts out of my head to help people better understand me.
 
I've had a lot of things on my mind lately.  Good things. Bad things. In between things. Things that make me cringe in horror.  Things that make we want to go screaming into the night never to return.

And that last is where I am at the moment.  I've spent the last few months working my way back from one of the worst bouts of depression I've had in a long, long time.  It was bad enough that I was planning out what would happen after I died.  Not when or how, but that I knew I was ready to end it all and I was figuring out how to take care of the things that needed to be taken care of.  I wasn't just on the edge of the cliff, I was hanging on by two fingers and actively letting myself slip off.  I'm not sure I've ever been there before.  Lots of things led to it, but I was there.

These days I'm working myself slowly back.  Right now most days I just want to run into the woods and not return.  Be the crazy dude that lives in some cave and jabbers at the squirrels and birds in my own language.  And some days I just can't deal. I have to remind myself that there are some people that would track me down in the afterlife, kick my ass, and tell me to come hang out with them for a bit and get me to feeling a bit better.  Zombie life or not.

So I'm a couple feet back from the cliff now. And trying to figure out the next move.  And so I've been thinking a lot.  Who I am.  Who I want to be.  How I communicate.  Who I want to communicate with.  All of it.  Everything.  And it's led me to a few things I want to share about me.

I've talked before about discovering what life is like on the Asperger's Spectrum before and everything that comes from it.  And its a lot to handle.  I mean seriously.  Not just for me, but for people that I interact with online, in person, in passing...wherever.  Its been enlightening and frightening to discover the things that I do that aren't part of the "social norm."  Most of the time its scary as hell, because things I've done all of my life, I had no idea they weren't part of "normal" behaviors.  My brain just never caught onto it.  And I want to change you know?  I don't want to do things or say things that make other people uncomfortable.  And I'm making changes slowly.  Seriously, I'm trying to change what I can.  But its hard you know?

People don't like confrontation and they don't want to be hurtful....so they don't tell me things.  They let things build up to the boiling point and walk away.  Its happened so often I feel like I need to wear a flack jacket all the time to protect myself.  But...I hurt because I don't want that to happen.  I don't like hurting people.  I don't like losing friendships or acquaintances or whatever the heck we are.

But its more than that.  I'm not aware of how I'm coming across when I'm reacting to things.  Am I showing distress?  Am I glaring? Am I acting like I don't care?  I mean seriously what am I doing???  I don't know what it looks like when I'm getting feedback...because that's another aspect of being on the spectrum.  I often think I'm project calm or neutral and its apparently not those things, but I don't know what it is!

And then there's this post.  This is all stuff that I want all of you to know.  Seriously.  I'm not trying to be socially unacceptable or cruel or whatever else it is.  I'm just trying to fit in and I don't know how. Trying to do the things I've seen other people do, trying to do what I think is right, but sometimes it comes off wrong. Or out of place. But I am trying, as best as I can.

So I'm trying.  Trying to learn. Trying to move on. Trying to understand.  Trying to be understood.