What It Is Like For Me….My Autism Is Not A Tragedy Or A Curse….Ignorance Is The Tragedy

Imagine what it would be like if you were to sit down at your keyboard to type out something that is critically important that you need to say now, and some of the keys don’t work….your very job and life even depends on this…..

Imagine if you were watching a really good movie or TV show, and really getting into it, mind, heart, and soul, to where you feel like you are actually in the quaint peaceful setting in that movie, and then all of a sudden the TV picture freezes up, and you miss the whole rest of it……

Or imagine if you were relaxing, reading a good book, same peaceful, quaint setting, where you feel like you are actually hanging out with the nice family that is being portrayed in the book, and some mean person comes along and yanks it right out of your hand, and throws it away, where you can’t find that book again…..

Or imagine how it feels to get ready to go somewhere that you’ve been really wanting to go, and then the car Just. Won’t. Start.

Imagine having a daddy who yells, bellering violently at you, and spanks you for sticking your tongue out at him, after he refuses to let you show him the nice piece of art you created for him that day at school while you are all eating dinner…..and he spanks you SO hard you have large painful welts all over your buttocks and thighs…..then he throws you in your room by one of your pigtails and locks you in that room…..

Imagine having three brothers, and their families, and a sister and her family who now all shun, block, and ignore you because of your Autism, and because you are tellig a story that has to be told that they don’t want to be out there……

Imagine being in a room where all kinds of wild colors are coming at you, all kinds of lights are flashing in your face, water is being sprayed into your face, people are poking and jabbing you in the back and sides and arms and face, pushing you too, and these same people are yelling and barking at you to move faster than you can move, but you can’t because your legs won’t work, and your brain can’t move that fast, and you are actually tied up to a chair…..

Imagine you live on a street that has tormented you for the past 22 years due to the mean bullies who have hated you all this time…..and used loud car horns, loud car, pickup, SUV and motorcycle motors, and their loud banshee yells to torment you with, and call you the same ugly names you were called as a child…..

“STOP!!!!!!!!!!”

That is how it was and still is for me. Because of the lifelong fears and the deep scars.

That is how my brain has always worked and how it still works.

And my brain comes with an amplifier—–an amplifier that amplifies every single thing that comes through my eyes, ears, nose, mouth, and skin.

Every single noise, color, smell, texture, taste, voice, melody, even the air temperature.

I try to talk to get it to all slow down to the pace that i am comfortable with, but no one seems to hear me, no one seems to understand.

This is how it is for me.

My Autism is real.

It is not imagined or fabricated.

I was born this way. I know i am Autistic by the way i felt scared of most everything as a child….bright lights, certain loud noises, bright light, flickering flourescent lights, the loud motors of furnaces in walls, loud booming radios, and by people being angry at me and hating me.

My family all teased me, and taunted me mercilessly, using all of these things i feared as weapons to get me to behave and conform. They even used physical force to get me to behave and conform to their ways.

Many of these things still scare and scar me as an adult.

I am not a bad behavior walking around.

As an adult, i even still have meltdowns. Because life scares me.

I always tried to make it in life, the best way i knew how,and it didn’t happen, because it was never good enough by NT standards.

My family hated my goofy, quirky personality and tried with all their might to squelch me.

I grew up, moved out at age 27, and i continued to try.

I even had my drivers license and drove a car for awhile, for 22 years i got to drive, and i loved that, and i continued to try….i tried, i tried, i tried…i went to agency after agency after agency, to try to get help so i could make it out of my rut and have a successful adult life.

But i was told, time and time and time again:

I am too high-functioning

I have to be age 62

I have to take certain meds that i can’t take because i’m allergic to most meds.

I have to have proof on paper of my diagnosis, that it happened before the age of 18.

I lack job skills, and an employment history

I am too quirky, too goofy, have too many hangups, etc…..and on and on and on……

But today, because of a series of unfortunate things that happened between then and now, i am now a total utter mess at times, because there are now so many things that i cannot handle once again.

I have stopped driving again. I even sold my car, because i no longer feel i can handle beig behind the wheel of a motor vehicle.

I used to be able to clean my own house, take showers, do my own shopping, and even cook basic things.

But then due to things that happened in the past 22 years, i lost those skills, and then my physical health came unhinged, and now that hampers me greatly.

On top of the obsessive compulsive fears i’ve developed that keep me from cooking and cleaning house.

If i lose my words and the wrong words come out, it is not because i am trying to be mean, or bitchy, or a diva, it is because i am becoming frustrated and about to enter a state of sensory overload.

Things that cause sensory overload and meltdowns…..

Not being heard and listened to.

Beig interrupted and talked over.

Being silenced.

When change happens abruptly.

When familiar rituals and routines are interrupted and not respected.

When people are not patient with me/us.

When people misunderstand and then jump to the wrong conclusions about me/us.

This is what life is like for me, and for many of us who are Autistic. And it doesn’t have to be this way.

I’ve said it before, and i will say it again.

It is not wrong to be Autistic. Autism is a neurological disability….and even though it isn’t always readily apparent at birth, nonetheless, we are still Autistic at birth, and we are going to be Autistic our whole lives. That’s not a bad thing. But some people like Autism Speaks, like to make it into a bad thing.

All we Autistics want is to be accepted and loved as we are. We don’t want or need to be treated like we are spoiled, lazy, and selfish. Or like we are a behavior issue. We don’t need to be cured, fixed, talked down to, and punished. We want to have open doors, opportunity, and to be able to live and work in a world that is going to be Autistic-friendly. And it will be when people stop listening to organizations like Autism Speaks, and start letting us speak and be who we are.

 

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