Who Defines the “Mildness” of Autism?

I have a confession to make: I used to say I have “mild” autism. It was never “mild” to me, though. I mean, sure, it might be “mild” and invisible to the neurotypicals, but you never know the struggle it is to come up with the right word so as not to be blasted or ostracized for being weird. You don’t know which strange sight, sound or smell will throw me off. You don’t even know how hard it can be for me to communicate for me, either. But you don’t consider me, do you? Autism is one of the few conditions defined by how the non-sufferer (for lack of a better word) experiences it.

Why is that? Why is it that autism is defined by the non-autistic? Is race defined by the privileged? Has anyone even considered that autistic people experience everything differently? That we have a viewpoint that might be valuable? Or are you too busy classifying our viewpoints as worthless simply because we don’t communicate them the way you want us to?

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On Stimming: My Stimming Story

 

My stimming story is a little different from other people’s stimming stories. My initial stim was a monotone hum. Unfortunately, that was an unacceptable one. My mother asked what it was for. I said it was to get rid of excess energy. Eventually, my mother would tell me to go run up and down the hall. (We had a long hallway in our house.) I found better ways to stim as a person throughout my life, even when I was not allowed to stim by my sisters. (I was also not allowed to enjoy my own money or mental safety.) Of course, once I got away from my sisters, I was “allowed” to stim again. Strangely enough, I did not stim too much.

There are many times and ways I stim, but one thing they have in common: they are to get rid of excess emotional energy. That means, stimming can come at any time, for any reason. It’s a comfort that many neurotypicals do not understand or apparently need, so they always want us to not do it. They don’t want any indication that we are autistic. I say, screw them.

The Extent of My Autism Accommodations: A Very Short Article.

REGULAR AID:

Disability Income: Roughly $1050 a month. That’s it. (Good thing my mother helps me with her income.)
Medicare with Extra Help: Keeps my medicine payments down to $25. (See below.)

SERVICES I MUST PAY FOR:

Medicines to keep me from dying: $25.
Psychological Therapy: $40. Per appointment. I don’t get this. If I want to eat, I must sacrifice this.

*

Basically, all I get is Basic Disability Income and Extra Help from the Medicare people. That’s it. I pay for everything else to some extent. Any other services are out of my reach financially. Therefore, any other services are useless to me. Any service is useless if you can’t get it.

When You Die

NOTE: This is in response to a recent blog post written by a parent of an autistic child. 

“What will happen to my autistic kid when I’m gone?” “What will happen to my autistic kid when I die?” Well, if you hog all the autism care and concern and leave none of it for them, they will probably die alone, possibly killing themselves.

Have I got your attention now?

An isolated, dependent, and short lifespan is the current fate of most autistic people. Do you want to stop that? Don’t hog all the care and concern. Remember, the autistic person is suffering the most. NOT YOU!!!!!

Also, I have a few questions I want to ask:

Here’s my question: Can they learn to adapt and live?

Some autistic people need round-the-clock care, but I believe many do not. You must learn where on this care spectrum this person falls, and make the proper arrangements. You might be surprised where this person falls, and where he functions highly. Also, get him some autistic friends. I don’t have any close autistic friends right now, except on Facebook, and there are times I feel all alone.

Here’s my next question: Can they be autistic around you?

There is a LOT of pressure to fit in, to be acceptable, to conform. Autistic people, because they are bullied, left out and ostracized, feel this pressure more than most people. Holly Robinson-Peete’s son once declared “I don’t want autism” to his family at one time in the course of conversation. This just broke my heart. I could not put a finger on it at the time, but I realized it meant that he feels he cannot be loved and/or accepted until he can conform to neurotypicality. I could not watch another episode of their reality show.

Another question: Is there somebody they can be autistic, and therefore themselves, around?

If not you, the autistic person NEEDS to be autistic. It’s a fact of life as of May 29, 2018. If they are not themselves around you, they need to be themselves around somebody. They need somebody they can trust. Not you, them. You might be surprised who they trust, and it may not be the people you trust. Remember: many times, they have learned to not trust themselves or their instincts. I have gone through this behavior, and have re-learned to trust my instincts in my thirties. By then, it was almost too late.

I am currently forty years old. By some estimates, the average death age of an autistic person is thirty-six. (By some, it could be as late as fifty-four.) This means I may have already outlived my lifespan by four years. Not much time on this world where we face rejection, is it? Most autistic people still may be doomed to die alone, but you can help change it. There is a group of people who can help your child, because they know what your child is going through. They are going through it themselves. These are what we call autistic adults.

Ten Things that Grind my Gears

  1. The whole treatment of Meg Griffin.
  2. Having to borrow a title from a show that treats their teen daughter like feces.
  3. The fact that I have to hide the fact that my very nice upstairs neighbor is black because some very powerful white people assume she is some kind of criminal.
  4. The fact that I am forty and only qualified to work in a fast food joint because I only have an Associate Degree.
  5. People who go swimming in pubic pools when they don’t feel well. Stay home and get well!
  6. The fact that I have to justify my autism diagnosis because I am not Sheldon Cooper, Raymond “Rain Man” Babbitt, or some other white male whose weird is life-throttling.
  7. The fact that I have yet to see an autistic girl who likes assumed girly things on T.V.
  8. That most of the autistic people in media are white, male and otherwise of a privileged class.
  9. That these stereotypes throttle non-white, non-male autistic people from being believed.
  10. That I am even having to mention these in the 21st Century.

You Don’t Know Me

So, autistic parent who thinks that just because I don’t act EXACTLY like your child, I’m not autistic enough? You don’t know me! Person who thinks I am a dismiss-worthy weirdo? You don’t know me!

You don’t know how intense, loud and colorful I experience the world. You don’t even know how your own child experiences the world. It could be more intense, or maybe it could be less intense. Or, and this is more likely, it may be a combination of both – more intense in some areas, or less intense in other areas.

 You don’t know how much I struggle to come up with the right word. You don’t know how I witness almost every conversation (or interview, in some cases) can go down in flames because I say the wrong word. You don’t know. You don’t know the nights I spent awake agonizing and finally coming up with the right words to say, long after the opportunity to say them is gone.

 You don’t know how I have no emotional memory. You don’t know the hours I spend in private because I am crying over my own pain, or the pain of someone else. You don’t know that I am currently wishing people would just evacuate the Big Island of Hawaii because it seems to be exploding to me.

 Are you psychic? Can you read my mind? Of course not. Maybe if you could, you would be more understanding and accepting of my differences.