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.

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.

We don’t ‘deserve’ anything

Awareness and understanding for the Autism community. We need it, we want it. The right thing to do would be to give it to us.
However just because you want something doesn’t mean you deserve it.

It makes me so upset when I hear how those of us with Autism ‘deserve’ everything from Heart Transplants to jobs and housing.
This is not true. We don’t ‘deserve’ anything.
Before you get upset and start calling me names, finish reading please…

If you are robbed you deserve compensation. If you are raped you deserve justice. If you are lied to you deserve the truth. If you work for someone you deserve to be paid.
You only ‘deserve’ something if you are a victim or if you earned it!!

How can anyone say people on the Autism spectrum are not disabled but different-able, then play the victim card?!?
That is contradictory at best, hurtful to the cause of Autism awareness at worst.

We need to change our message. We need to push for awareness without making ourselves out to be victims. Nothing is owed to us just because we work a little different than others.

When we play this victim card, we belittle ourselves. We paint ourselves as poor little victims. If we are victims then we are to be shown pity. And if we need pity then we are less than whole, less than perfect…broken in some way. Do we really need or want a pity party from the world?

Please don’t get me wrong. My son has an IEP and he gets help in the classroom. Not because he deserves it. No, because we made the school AWARE. Dose this help my son? Yes. Does he rank above other kids because he deserves this help in school? No!
What are we teaching the very world we want to make aware, once we start being the victims? Are we teaching them we can work and hold jobs? Are we teaching them we are worthy of love and respect? I don’t think so.
Would we like understanding and awareness? Yes. Is it owed to us..? Not at all.

We spend so much time and energy promoting awareness to the world about Autism.
This is one of my (many) issues with groups like Autism Speaks. They spend so much time painting Autism as a victimization rather than as uniquely different. I won’t even go into the ways they victimized the families of Autistic people. Painting such a tragic picture of those poor families having to deal with Autism. Whatever…

Maybe we need to spend a little time promoting awareness about our OWN actions and words.

The following was posted on twitter by @GiftsofAutism

View the original post here

“What if the awakening of autism required a critical mass of the world embracing us as God’s Great Gift to them? What might happen if the seal of disapproval on autism was removed? What might happen if for just one day, we could exist in an energy field devoid of negativity, hatred, and anger against the very form of our being?Better yet what might happen if we were treated with great respect and honored as future teachers in the making? What if people started to actively support this process of freedom? Not freedom from our autism, but freedom from the negative thoughts and feelings projected toward autism and those of us who wear this label? What if being a person in autism was seen as exceptional, unique, a person capable of great wisdom and healing powers?”What if??…..Imagine

What IF we saw ourselves the way we wish NT’s would see us…?
Do we want to see ourselves as victims?

We are not victims. We haven’t been wronged. And the world doesn’t owe us anything.
We owe it to ourselves to show the world that we are NOT victims.