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.

Comfort and Security

As Aspies we need two things. Comfort and Security.
We live in a confusing world dominated by NT’s. A world full of questions and uncertainty. We live in a mean world, we are often judged by the ignorant. It is a world that overwhelms our senses.

Because of this we need two things that we can always count on: Comfort and Security. And these only come from understanding.

With my son, his mother is his comfort and I am his security. She understands his need be comforted. She has infinite patience with him. She is forgiving of his melt downs. She is unconditional love. He can be at peace with her.

A mother holds up her child.

A mother holds up her child. (Photo credit: Wikipedia)

I am his security. With me he knows he is safe. He is safe to be himself. He is safe from harm. And he is safe from himself. Yes I am the disciplinarian. I punish bad behavior. And he is safe knowing that I do these things out of deep love for him. I never lie to him. He knows my word is something he can always trust. (note: I am not implying his mother does lie to him).
When night falls, he needs both Comfort and Security.

Now because of our two different roles, our son doesn’t respond to his mothers attempt at discipline. He just gets worse, yelling throwing things, melting down. Until I enter the room. Then the safety of structure and firmness kick in. I normally only have to say ‘stop behaving like this’ and he calms down. I explain it is OK to be upset but is not ok to be mean to people. Always a consistent message. He is safe knowing his melt down can be controlled rather than controlling.
However I am not his comfort. Let me cook his dinner and he won’t like it. Let me try to put a band-aide on his boo boo and he keeps crying until mom arrives. We each have our own roles in his world.

Once you understand these roles with an Aspie child, it becomes almost easy. (I said almost).

What about Aspie adults? If you are going to have a successful relationship with an Aspie, you have to find that balance between Comfort and Security.
The old joke that a man marrys someone like his mother comes to mind. Except and Aspie marrys someone like a mother and a father.
We need a comforter. Someone to love us without judgments. Someone to take care of us a little. Remember Aspies SHOW love more than saying I love you. So we need to SEE love.
We need security as well. I don’t mean someone to beat up bad guys. I mean someone we can trust 100%. Someone who can tell us when we mess up, but tells us with love. We need security of honestly.

As a parent or a partner, if you love an Aspie you have to offer Comfort and Security.

Breaking down a Melt Down. What do they feel like to an Aspie

How many times has my kid been called a spoiled brat when he melts down? How  many times have I been treated with contempt for my melt downs? The irony is that many of my melt downs are caused by the very people who judge me for having a Melt Down.

It is about time I try to explain what an Aspergers melt Down really is. After all what I am looking for is understanding, so maybe this will help the NT’s who want to understand.

I can’t explain a Melt Down without first explaining what causes them. There are three triggers; emotions, sensory over load and frustration.

People with Aspergers have very intense emotions. We just struggle to get those emotions out. So when we become overwhelmed with any emotion; love, hate, anger, it builds inside like a tea kettle. We try to articulate those feeling and we can’t. Then frustration builds and the steam needs to escape. Ok a tea kettle is a bad example, think pressure cooker instead.

Another trigger for a Melt Down is sensory over load. We Aspies all have one or more overly active sense. For me it is sound and vision. A lot of movement in a room makes me have dizzy spells. Driving past a line of orange barrels on the highway makes me intensely agitated. I grip the wheel, get tunnel vision, breath heavy as my heart pounds. I am also sensitive to sounds. Someone sneezes and I will launch 10 feet in the air. Multiple people talking at once makes me want to run from a room. It is so overwhelming.

Then there is frustration. Frustration from not being able to get feelings out. Frustration from being trapped in an overwhelming sensory over load. Or maybe frustration from a lack of fine motor skills. Want to see me melt down? Make me put line back on the weed eater or ask me to build a model.
Then there is the frustration over right and wrong. Aspie have a deep sense of right and wrong. When you’re doing something I perceive as wrong it drives me nuts. I get frustrated watching it. I’m at a loose for words… Frustrating.
An important note here: children do not have a developed sense of right and wrong. So to a child Aspie it may be very wrong in his eyes if you forced him to go shopping (sensory over load) and you don’t buy him a toy. Please set those expectations BEFORE you leave for the store with the child.
The frustration screams for peace. The pressure cooker needs to let off steam. It doesn’t want to explode. It would rather just escape the heat.

It is much like the reaction an NT would have running out of a burning building. Panic, fear, pain, anxiety! Now imagine trying to escape that fire and people are blocking your path. Not letting you escape. Mocking you for trying to get out!! You would go into a type of rage. Not because you hate them but because you hate not being able to escape.
These things hurt! I can’t deal with the whirl-wind! MAKE IT STOP! MELT DOWN COMING!!

The melt down itself is almost surreal. I won’t say we are out of control. There is always a line we would never cross. I would never physically hurt someone. Although in my youth I directed all that steam into hitting walls, trees, cars…We don’t even want to melt down. There is this voice screaming ‘I DON’T WANT TO DO THIS!’ You try so hard not to say something you will regret. For me it is cursing. I don’t like to sound like that, but sometimes no other words work during a melt down. For my son it is the word ‘hate’. He hates me, hates his mother etc. In truth he is a very loving child. And he always feels so terrible after a melt down For saying those things. It breaks my heart.

Then there is the aftermath. The exhaustion. The shame and guilt. The feeling of judgment. The resentment of those who caused the melt down.
And the fear. Melt downs scare us. It is that same fear of escaping that burning building.

There is a plus side to seeing a melt down. Most Aspie won’t melt down in front of people they don’t trust. So if you are with an Aspie and he gets to that point, take comfort in knowing you are in his inner circle.

Are we the spoiled brats and selfish jerks that NT’s judge us to be…? Think about that the next time you get angry at you Aspie child for embarrassing you by melting down in public. (yes I meant that to point out your selfishness).
I will however say this; melt downs can’t go unchecked in children. No one is stricter on my young Aspie about his melt downs than I am. I help him understand them and understand how to avoid them. But I do not let him accept unacceptable behaviour. He must learn that he cannot say he hates people. He cannot throw his toys. At the same time he has to learn to avoid burning buildings altogether, thus avoiding the melt downs.
There are many times I KNOW I need to walk away and breath. That takes discipline and maturity. It isn’t easy to slow down and walk out of a burning building.