Autism Awareness and communication. Please be truly aware…

This is Autism awareness month. And everyone is talking about Autism, but no one is trying to be AWARE of what life on the spectrum is like.

For me, it would be great if people would be aware of how difficult communication can be. I am constantly defending myself because people miss-read what I say. If that my fault? in part, yes, I try to communicate clearly. Sometimes I just can’t get the words in my head to come out right. Sometimes I use the wrong tone of voice. However, when others assume I meant something other than what I said, it is frustrating. Even worse is when I get condemned for something I didn’t say or imply. Remember, I am black and white, I don’t IMPLY anything. If you are aware that I am on the spectrum, and you are aware of how I communicate, then please be aware that I say what I mean. Nothing more. If you are aware that the words sometimes get stuck, and are hard to get out, then why to you assume that I am being rude or that I must be angry because I am not answering right way? If you are aware, then why do you get upset when I say one thing, but you chose to add words that I never said? If you are aware, then why can’t you see how frustrating it is when I can’t communicate? When you wont try to listen?Why can’t you see how much it hurts when I TRY to communicate, and you shut me down either by talking over me, not listening to what I say, or by judging me before the words are even out of my mouth?

If you are aware that I live in fear that my every word will get twisted around as soon as I speak them, why do you twist my words? If I say my feelings are hurt, why do you twist it to mean I am angry? If I say yes, why do you accuse me of saying I really meant to say no? If I say you are right, why do you call me condescending? If I say I was wrong, why do you call me a martyr?  Do NT’s REALLY communicate like this???

If you are aware of these things, then you must also be aware of how bad it hurts to be accused of not saying what I really said. Aren’t you calling me a liar every time you do that? Do you know how painful it is to tray to tell someone how you feel, or what you think, only to be told your words must mean the opposite of what you said?

What is on the other side of this coin? Please be aware that I take YOUR words at face value. I assume you say what you mean, and mean what you say (also be aware that this affects my trust in you when you don’t say what you mean). Please be aware that I do not really get subtlety. Please be aware that I don’t understand why you get mad and walk away without telling me why. Please be aware that I cannot read your mind (or your subtle clues).  All I get is you are mad or offended by what I said, or how I said it, or something. Yet you won’t even take the time to tell me exactly WHAT I did that was wrong? How I do I defend that?

Please be aware that this lack of communication is frustrating, and frustration leads to meltdowns. It is compounded when you want to get mad at me for a meltdown, when you are the one not trying to listen. When I am trying to find a way to fit in your world, but you refuse to try to see my side.

You force us to live in your world of grey subtleties, yet you refuse to live in my word of black and white. All the while you preach awareness.

Aspies are different- Thank God!

I remember as a kid the mantra was ‘be yourself, be proud of who you are. We are different’. I saw it on TV, heard it at school… It was the big thing before ‘just say no’ became the next big thing I always heard. Fast forward 30 years and we hear how we should all be the same.
Aspies are different, and sometimes being different is a good thing!
I find humor in the stereotype that people with Aspergers are different. NT’s say that like it is a bad thing.
We tend to have our ‘quirky’ hobbies and obsessions, we tend to dress differently, we tend to follow our own path. Thankfully we are not as influenced by fads and pop culture as the rest of the world- Thank God!!
Our society these days is stiflingly homogenized and boring- we all have the same looking houses and communities because they’re built by the same faux-hawked hipster on his laptop in LA who just goes “copy>paste” onto every map of every town in America. You can’t tell any suburb in the United States apart from the next, even though they are 3000 miles away. All our furniture is bought from two stores that are all chains. Our education is standardized so we all learn the same thing. The food we eat is homogenized and processed and there are really only 10 chain restaurants anyone eats at in the entire country. There’s no difference between anything anymore. We are all the same generic creature, doing generic things, saying generic things, thinking generically. We all listen to the same music. We watch the same TV shows – does anyone actually ENJOY Honey Boo Boo?!? We are basically the same global clone everywhere we go – you can get off a plane in Warsaw, Dubai, Las Vegas, or London and the only thing that is different about what you see is the language spoken by the McDonald’s worker serving your burger, engineered to taste identical no matter which McDonald’s you go to anywhere in the world. It’s a business model that is replicated by everyone, hotels, restaurants, basically everything is replicated on a global scale to be the same.
We have made the world smaller with the internet, Facebook, and Twitter- yet no one is able to have an original thought. People share the same photos, the same recipes and the same memes. It has become boring!
Globalization has made life suck.Thank God I am different!! I don’t fit in that silly box labeled ‘normal’!! I hate fast food, I listen to Jazz, I smoke a pipe, I live in the countDifferent ry- far away from ‘normal’ people, I dress the way I like, not the way some magazine tells me I should, I hate TV and I find social media lame and boring!
I’m not going to give myself a coronary caring about what people think because I don’t have the “right” phone, wear the “right” clothing, buy the “right” material goods and subscribe to the same boring, generic, lifeless, mindless sheep existence that everyone else does.
In a world that promotes sameness, it is no wonder that the number of people with Aspergers is on the rise.
I’m an Aspie and I think for myself, ironic how that makes me different…

Yes, People with Aspergers can love.

Where do I even begin on this topic?
We have all been told that people with Aspergers don’t have empathy (not true). We’ve been told people with Aspergers can’t really understand love. (not true). And yet I am writing this as I just returned from my honeymoon.

Let me start by dealing with the myths; yes, we Aspies DO feel emotion. Yes we DO have empathy. Yes we DO love.
We tend to have very strong emotions, and while we are guarded about how we put our hearts on the line, we go ‘all in’ once we do.
The issue isn’t that we are not emphatic, it is not that we don’t love. The issue is that we are very empathedic. It is that we love deeply. Overwhelmingly. And as those emotions rush around inside of us, it can be very difficult to articulate in a sentence or two how we feel. For you NT’s reading this; it is like trying to sum up the Bible in a single sentence.
We must come across as unloving because we don’t articulate those powerful emotions well. I admit, it takes a very special person to love an Aspie. It takes honesty. Lieing to an Aspie is devastating. We are very black and white. In my world love equals trust above all else.
It takes patience, we Aspies can be slow to articulate our feelings. Thus we don’t always make you feel loved with our words, but with our actions. It takes understanding and communication.
My wife is amazing. She has spent hours, days, even months trying to understand where I am coming from. And she has helped me to better understand how I need to communicate with her. After all, if I expect her to understand me, then it is reasonable that I should try to understand her. If I expect her to see the world as I do, then I should try to see the world through her eyes as well.

It took us years of building that open, honest relationship. It took me years to fully trust. It took us years to see from each others points of view. It wasn’t always easy, but nothing of value comes easy, does it? We still see things differently, see my post here about the wedding dress.

And now this amazing woman is my wife, my best friend, the person I trust without question.

Do people with Aspergers feel love? Yes, we feel a deep, loyal, consuming love. Are people with Aspergers able to show that love the way NT’s do? Maybe not. But it is not for a lack of trying.
Are there Aspies in the world who give up on love because it is difficult to share those feelings? Probably, but I hope not.

I don’t think the question is ‘do people with Aspergers feel love?’ Maybe the question should be ‘Can an NT and an Aspie make love work?’.
It isn’t easy, but it is amazing when you put forth the effort.
It took me many years to work toward this wedding day. In many ways I fought several emotional battles. But it was well worth every battle scar I earned along the way.

Gun Control, Mental Illness and Aspergers. The new Witch Hunt

I have sat back quietly watching this new gun control debate. I have listened to both sides and read every news story I can find, and I am disappointed.

Before I go much further let me make one thing very clear; I promised myself that I will not get into the control debate on any forum that focuses on Aspergers and Autism. My intention with this post is not to pick sides. Like everyone else, I have my personal views on gun control. However this is not the place for those views. This is a place to discuss the things that affect people on the spectrum. This is a place where I share my views as someone who is on the spectrum.

There is a lot of talk about ‘mentally ill‘ people in the new gun control debate. There is a fear spreading that the mentally ill are unpredictable and often dangerous. This fear is reminiscent of the days we locked away people in mental institutions. Are we regressing in that direction now in the name of gun control? More importantly, how do we define mental illness in this debate?

A bill in the Georgia Senate (SB 34)would make it illegal for mentally incompetent or addicted people to own a firearm. Think about this; addicted people, who are they targeting here? Drug dealers? No, the bill is worded in such a way that ANY addiction makes you incompetent .. if you had a DUI in high school 30 years ago- you would now labeled an addicted person, according to this bill. If the definition of an addicted person has such vague definition in this bill, who would be deemed mentally incompetent? The person who saw a marriage councilor? The rape victim who saw a therapist? The Police officer who witnessed terrible crimes and need to see a councilor? The kid diagnosed with Aspergers in school?

We are walking on dangerous ground when we use blanket terms such as ‘mentally ill‘. Not just in the gun control debate, but in any form of mature conversation. In a politically correct word where we never use the word ‘retard‘ we are quickly turning mental health into the new racism. The news media, the politicians, the NRA and the Brady campaign are all  painting mental illness with a broad brush in an effort to avoid the real issues at hand.

My fear in all of this rhetoric is that to many people will get labeled as dangerous mental nut cases. As if my little Aspie doesn’t have to worry about being bullied at school already. There are news stories of children being suspended from school for everything from Hello Kitty bubble guns Link to story here,  to an L shaped piece of paper that looked like it may have been gun shaped- Link to story here. Add the news media trying so hard to paint the latest mass murderer as having Aspergers. (to many conflicting stories on this one). What happens when a little Aspie plays Cops and Robbers and points his finger at another child? Will we be outraged when he is arrested, or will we be satisfied that another crazy person is off the streets?

My fear is how quickly we all want to find a bad guy in this gun control argument. I am worried about the modern-day witch hunt I see happening in America.

Where do we draw the line when we start going after the mentally ill?

1212mentalhealth-RW

1212mentalhealth-RW (Photo credit: Robbie Wroblewski)

Do we just go after those crazy people who live on the streets? Surely they are all crazy just like Jim Carrey.
Do we go after people who are bipolar? Sorry Vincent van Gogh but you have to go!
Do we target the Drunks? Yeah we should have locked up Ernest Hemingway!
Maybe we just target those nerdy kids who like to play with computers in their parents garage. Yeah, that’s it! We should have locked away Steve Jobs back in the day.
What’s that? oh of course we should really target those people who suffer from depression, you know people like Abraham Lincoln.
Oh wait, if you watch the news, it is those creepy people with Aspergers. You know the people like Dan Aykroyd, and Albert Einstein!

Seriously….

The truth is simple; there are bad people in the world. Bad people do bad things. Sometimes they do horrible things that the rest of us cannot understand.

Vilifying the mentally ill in such a broad term makes about as much sense as slavery and saying women can’t vote.
Saying that people with Aspergers are mentally ill is just as ignorant as saying all Hispanics are gang members.

The irony here is that The clinical diagnosis for Aspergers syndrome will be removed in the next edition of the American Psychiatric Association psychiatrists’ diagnostic guide. Will that be enough? Will they change their mind about this now?

I have Aspergers  I process things a little differently than most people. I sometimes feel awkward in social situations. I am not ill. I am not crazy. I am not broken. I am just as unique as you are.

Sometimes being different is a GOOD thing.

The stumbling blocks of Communication

Communication is often difficult for Aspies.

Finding the right words-
Trying to articulate the exact feelings into words can be a difficult transaction. Often times trying to sort out the exact word from all the words and emotions can feel like trying to shove the ocean through a funnel.
Benign meaningless conversation is easy. But catch us off guard, hit us with a question out of the blue when we are lost in thought and it can create panic.
My mind races for the correct words to say sometimes. And if it requires an emotional reply, my logical brain jams everything together. The result can be that I get tongue tied. That is embarrassing at it makes communication even more difficult.

wordsEasier to text-
For me, texting is easier because there is no pressure to quickly reply. How many times have I paused to consider my verbal reply, only to have that pause interpreted as anger or condemnation??
When I text I am allowed those few second to gather my words. I am allowed to proof read my replies. Ahh… Big sigh of relief.

Sensory issues make the phone a nightmare-
I’m overloaded already and the phone rings (making me jump) now someone on the other end is talking in my ear. It is loud! I have to hold the phone next to my face. Sensory overload. I hate the phone. I really hate it when I am overwhelmed!
As a side note, I notice my little Aspie hates the phone also. In person he will talk your ear off. On the phone you might get ‘hi, bye’. How many family member get their feelings hurt when little Aspie won’t talk on the phone…?

Getting out the big feelings is hard-
I had to tell my non Aspie child that a family member passed away. I dreaded that conversation all day. What do I say? How do I act? Damn then she started crying, now what do I say? I know that nothing I say will ease the pain. Stay calm I tell myself. Just give her one of my awkward hugs… I want to crawl under a rock!! I can’t fix this! Panic! What do I say?!?
As a result I come across as not caring, cold, non emotional.

For you non Aspies out there, please don’t think we are incapable of emotion. We feel intense emotion! So intense that the words can become so difficult that it is easier to clam up. Every time I hear ‘just use your words’ I want to scream back ‘JUST READ MY MIND’ I am sure that would be easier.

I’m back!!

I want to apologize for not responding to a few people over the past few months.
I became very overwhelmed with social media and I forced myself to step away. I became very critical of my self; every typo I found, every negative reply…
I started second guessing my posts and wondering if what I had to say was important.
I have missed being here and posting. (I missed twitter and Facebook as well).
So I am back. And I have several posts in my mind begging to be put to words here and elsewhere. I look forward to returning.
More to follow soon, I promise.