21 January 2016

Autism and the Media

Please be forewarned this is a ranty post.  All because I heard a radio program today. That made me want to go to the radio station and smack the crap out of the hosts. But I can't do that without getting into trouble. So...I write this post instead.

Dear media hosts, please stop talking about autism. Because you're doing way more harm to those of us on the spectrum than helping. Seriously. Unless you're talking to Dr. Temple Grandin, someone with autism, or people with ACTUAL credentials (and I mean advanced degrees that haven't been discredited) just...stop. Don't talk.

Because every time you talk about the increase in the number of people diagnosed and how something in the world changed, whether it be vaccines or food or f'ing space aliens mucking about with our DNA, you make things a thousand times worse for those trying to help people on the spectrum and 10,000 times worse for those on the spectrum. Because all of those things that you say, whether you mean it or not, make it sound like we're less of a person. That we're an accident caused by something that our parents or doctors should have controlled. And that those of us on the spectrum...we shouldn't be alive.

Maybe you don't say that last thing. Maybe you don't support it. But you keep talking to people that do. That treat those of us on the spectrum like we're some type of disease that shouldn't exist. The anti-vaccers basically say it. They would rather have dead children or children with debilitating diseases like polio, than a child on the spectrum. And I get it. They want the "normal" happy child everyone does...but "normal" is bullshit horrible term that doesn't exist.  You treat us like we're a mental illness that can be wiped out. That can be solved. But that isn't us.

Maybe some real facts will help you understand why all of this is a dangerous thing for non-experts (and even for experts) to talk about. Take a look at modern medicine in relation to "mental health" care that many people with autism fell into.

  • We didn't really understand germs and washing hands until well into the 1900's. 
  • Gave mental health patients typhoid fever in the 1920's to rid them of the illness. They won the Nobel Prize in 1927 for that theory.
  • Put people with mental health issues into diabetic comas in the 1930's
  • Didn't understand that x-rays could give radiation poisoning until the 1950's. 
  • Preformed electric shock therapy and lobotomies into the 1960's
  • Well into the 2000's many people on the spectrum were misdiagnosed as ADHD, bipolar, shy, anti-social behavior, etc.
  • and this doesn't include the numerous other theories or institutions that people were shoved into in order to "help them" disappear from "polite society." 
People on the spectrum are not a mental illness. People on the spectrum are people. We've been around since the beginning of time.The reason you see an increase in numbers? That's because people finally stopped trying to shove us out of sight or diagnosing us incorrectly because god forbid we use the label autism, and went "Oh...oh. They are real people."

It's not that we need treatment "to get better." It's that we need understanding. Why does that matter you ask? Because it changes how people treat us. Because more than anything, it changes how we treat ourselves.

I was a misdiagnosed as being ADHD in the 1980's during the boom of, if a kid is weird, different, can't pay attention, seems shy, it must be ADHD. I took medication all the way up until college when I decided to stop. That it wasn't really helping. That often times...it seemed to hurt. It killed my creativity. It stopped my imagination. 

I was told I was shy, that I'd grow out of it. That when I was turned down on dates that I was a nice guy and one day girls would magically mature and fall for the nice guy. They didn't. And I didn't stop being shy.  

Things didn't get better when I got into the "real world." Things that had been over looked when I was younger, the way I worded things, the way I would approach things, suddenly stopped being acceptable and I couldn't understand why. I still had trouble making friends. I alienated people. I put them off because I did things that weren't "normal." And I had trouble to keep going. I had trouble to understand the point of life and where I fit in. Because maybe since I wasn't "normal" I didn't fit in anywhere. And my life wasn't worth living.

It wasn't until a conversation with a friend whose daughter was on the spectrum. When she described her I kept thinking..."that's me. I do that. Maybe I'm on the spectrum." And when I was diagnosed it helped. It didn't magically change the world. But it made me know that I wasn't stupid or abnormal or whatever else popped into my head. That the things I did, the way I behaved, the who I am, was ok. That the things that I needed to change to fit into "polite society" I could at least figure out. But more than anything it helped me know that I wasn't alone. And that my life was worth living.

So please. Stop talking about Autism. Please stop spreading the lies and inaccurate facts about how "we can be cured" or that this is a disease that needs to be stopped. It isn't. We aren't. Please. Let the world know that we're real people too. And that we deserve respect and understanding. We deserve to live as ourselves.

30 December 2015

The Aspie's "I don't understand"

This is going to run of those rambling type posts, because right now...well the subject is still an open wound for me. Raw and hurting over some things from this past year.

But I have to post about it. In part, because, well not talking about it is a horrid thing, but also I want to help people stop and think for a moment about some interactions they've had. Even if it's just for a moment, to think about how it might be from the other person's perspective.

I try to talk openly about what its like for me being on the Asperger's spectrum. In part to better understand myself, but also to help others understand what it's like. A big one for me has been, that I don't always interpret/understand/read social cues or social norms well.  I'll say things that, well....other people would know or just read the situation and know not to say. Me...not so much. I had three great friends in college (Michelle, Michelle, & Vanessa) that were really good about poking me and nudging me and helping me learn the basics of relationships/close friendships...everything that I missed out on from not having a lot of people to hang out with growing up. I don't think they knew just how much they helped, but they did. They also helped a lot, by just accepting me for being me.

Since I was diagnosed as being on the spectrum, I try to tell people upfront about these issues and say "Hey, I'm probably going to say something at some point that comes off the wrong way. I really don't mean it that way, so just let me know so I can learn from it and not do it again." And the reactions have been...well mixed. Some people will say "You're putting the onus on other people! You can't do that! It's up to you to know!" To which my response is...How? I mean, there's not a manual for me to read and study called "Living with people" or a movie, or a TV show, or anything like that. And one thing I have learned is, its different for everyone. I can learn the broad guidelines, which I do know, but for individuals? Man...its rough to pick up nuances without someone saying "Hey, I know you can do that with other people, but please don't do it with me." So I do try to ask people "Hey, let me know that this is the line I can't cross with you." I can only learn from experience.

The worst one for me though, is people that say "Oh sure, I love being honest! And I have no problem telling you." But when it comes time...they  don't. They think one thing isn't going to matter, so they let it go. But then a second thing comes along, and a third...and a fourth. And they still say nothing until it explodes out of them! Like a bomb falling. And it ends things. Because while things can be rebuilt after a bomb explodes...its hard. And the foundation is rocky and rough. And I get it, really I do. Its hard for people to say that to someone, because they don't wanna hurt them. But I can tell you from experience that not saying it...its so, so much harder. Because when that end comes, the bomb can be big and the shockwaves can spread.

And that's part of what happened to me this year. A bomb dropped. And it was an atomic size one. Because this person and I shared secrets with each other. They first, and then I second. I said things that I would say to a close friend, because that's what I took us as. They trusted me and I trusted them. I said things that made them uncomfortable. They said things that made me uncomfortable, but I didn't say anything because it wasn't a big deal to me because they were a friend (and still isn't a big deal.) But they didn't tell me when they were uncomfortable by things that I said. And while I could tell something was wrong, when I asked they would say no. Then the bomb dropped. And the shockwaves went far. And are still spreading as best as I can tell.

And I understand its hard. I wish we had both made different choices. I wish they could have been more honest with me before the bomb dropped and after, it might have made the shockwaves smaller. I wish I had gone with my gut and recognized signs that were there and listened to them. But I didn't.

The raw part of the wound though...that's come from after. People for spreading rumors, half truths, and outright lies. For shoving sharp objects into the gaping wounds I have, seemingly for their own enjoyment or cruelty for kicking someone when they're down. For continuing to not be honest about what they needed, wanted, or expected. Mostly though for not listening when I said "I didn't mean it" and "I don't understand."

And those are four hard words to say. I don't understand. Because I don't. I still don't. I understand parts of it, but not all of it. Not what caused the bomb, not what caused the shockwaves to be so huge, and not what caused the outright...hate that's come from it. And I didn't mean it. Whatever it was. I know a lot of people say it when they get caught doing something, but...really...I didn't. A lot of people may say these words when a relationship ends. Its part of normal life, I get it.

But for me? Being on the spectrum? Its 20 times worse. Because I don't know how to not make the same missteps next time. My brain instantly goes to wall up and close off mode. To stop making friends and to stop talking to people altogether. To not say anything. To go into deep depression of struggling just to survive and not ending my life. And that's where I've been.

I'm still here. I'm struggling everyday not to be overcome with emotions and memories. I'm struggling to keep standing. I've had friends, many of whom I only know online, that poke and prod and make sure I'm still there. That say "Hey, I'm worried about you. Please let me know you're ok." They've made having a pity party really fucking hard, because my brain goes "No one likes you" and then they show up saying "Hey, I like you." Best party crashers ever. And I'm learning just how much of myself I can keep putting out there without being destroyed by bombs. Its hard. Because my brain wants to do the all or nothing, there is no in between. But I'm trying.

But please, please, please for the love of the universe. Stop. Listen. Talk. Bombs go off everyday. Keep them small. Let the shockwaves be miniscule. Don't be a rumormonger. And be a good party crasher.

10 September 2015

Today is World Suicide Prevention Day and I'm still here

Today is world suicide prevention day.  The Bloggess writes about it far better than I ever will, but the post really resonated with me. Not only because the being a part of a group of people whose brains routinely turn against us is a comfort to keep me going and that I'm not alone, but also that I have things left to do in this world.  And one of them is part of my story.

I wrote last December how I wanted to end my own life, because of how bad things had gotten at my job....and earlier this summer I shared a comic that I was writing for an anthology where there was the possibility of me taking my own life. The first person that I showed it to asked me if I had seriously considered taking my own life, to which the response is yes.  Yes I did. Had that thought a lot of times the last few months.

These last few months have been some of the worst I've ever had.  Being in a small community of artists and creators has been great in many ways. But at the same time, extremely isolating. I've had trouble figuring out where I belong, what my steps were, and who I am. I never quite found my groove with most people.  I had made what I thought was a good friendship that would last a long time. Someone that I felt comfortable sharing things with, things I still haven't told other people.  But that friendship ended horribly through actions of both of us. I didn't handle it as well as I could have, affected by more feelings of isolation, not understanding what happened, and having left a horrid situation behind in Georgia to have this happen so soon again....

And then the summer got worse.  Rumors about me hurting my exfriend, lies and half truths running around, other rumors, being told that no one wanted me around and that people didn't feel comfortable around me, being accused of having a second twitter account to interact with people that didn't want to interact with me, and on and on.  I think some of it started for a sense of protection of the exfriend, concern for them. Which I get.  Some was because not a lot of people know me well. I don't make friends easily and I've confused people and made them uneasy because of things I've done or said, even when no harm was meant. And I get that too.

I write this post, because I need to write it.  Not to point fingers or blame, but because I've tweeted and posted about anxiety and depression, I haven't shared why really. I haven't shared what caused it, because I didn't want to act like I was pointing fingers or anything else.  This has been a horrible last few months and I'm not sure people realized that. Or maybe they did. Maybe they were trying to protect themselves. I don't know.

What I do know is things are much the same for me right now as they were a few months ago and I've realized its because I haven't talked. I haven't shared. So this is my story. I'm still here.  Battered, bruised, knife wounds dug deep, arrows in the side, and cuts that will never heal...but I'm still here. Somehow.

12 July 2015

Aspie life, Depression, Suicide, and me

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.