[NOTE : I thought long, and hard, about whether this note would ever see the light of day. If I’d even send it to my friend. But, I decided to go public with it. I’ll let it speak for itself.]
Friday morning, 30 November 2012.
I just need to write. Need to talk about this. Don’t need answers. Not sure there really are any answers.
I’ve learned a great deal in the past two years. About me. About life. About everything. I can learn things, Deb. I can. You know that. But, part of what I’ve learned is very disturbing to me. Because of the implications.
According to the statistics of life (GRASP illustrates them very well), 80% to 85% of adults diagnosed with an Autisum Spectrum Disorder are unemployed. That number greatly disturbs me. It’s way out of line with the rest of the functional adult population. You think the number of unemployed is unacceptable when it’s 8 or 9 percent. Try 80% to 85%.
I know the truth about that number, Deb. From a different perspective. Because I AM employed. Most weeks I get better than 20 hours of work. A lot of weeks, I get over 30. I worked, for 28 years, full time, for Northrop Grumman.
What makes the difference? The label. “He has an ASD”. And suddenly, no one will touch you. I mean that. No one wants to deal with a “special case”, or “exception” to the rules. No one wants someone that, by their nature, has difficulty in a social environment, given that work is, more than anything else, a social environment.
85%, Deb. 85 out of every 100 of us can’t hold a job. Is unemployed.
That’s bad enough. But, I’m now running into the inevitable. Pat’s feeling the pinch of the changes to our income. I know that. And now, she’s brought up the topic twice. The topic being me, filing for partial disability.
My psychiatrist also brought that out.
I don’t want to go that way. I don’t. I’m trying to be patient. Trying to give myself time to find my way through all this. To find my way back to “life”, if that’s what you want to call it. I have days when all I can do is sit in the house. When I can’t write. When I can’t work on the dishes, or the laundry. When I can’t do anything. I’ve always had those days. But now, I notice them.
And they bother me. They hurt. I don’t like those days.
It’s hard, Deb. I still feel it when I drive to work during rush hour, or drive home during rush hour. Or when I work on Saturday or Sunday, or a holiday. I still feel like something’s wrong. Like everyone’s doing what they’re supposed to be doing. Except me.
I’m still trying to come to terms with that. With the idea that my holding a part time job at Best Buy is OK. That I can do other things as a result. And it always comes back to the same problem.
85 out of every 100 is unemployed.
Dr. Lassiter knows the statistics. He knows I know them. He knows I’m not talking to him about the big nightmare sitting in the room when we talk. About me and work. About the 85 out of 100 of us that are out of work. About a society that very literally isolates us, and treats us like we’re defective, or broken. A society that acts to protect itself from us.
How do I talk about that? How do I deal with that? How can I say anything constructive about that?
I know. I know this is why Dr. Lassiter keeps talking to me about starting my own company. He knows I can do the work. He knows I’m employable. He knows there’s nothing “bad”, “defective”, or “broken” with me. I’m just different. I see things from a different perspective. I understand things in a different way. And as a result, I don’t always do things according to accepted social standards.
In the corporate world, that means I’m a headache. And headaches don’t get hired.
“Start your own company, Mark! There are people out there that need you! That need your skills, and abilities!”
This is my battle now, Deb. This is the “demon” I face. The nightmare I have to stare down. The fear I have to overcome.
How tough is it to be me? Or someone like me? I’m sitting here, in Dr. Dixon’s office. Pat’s at her doctor’s appointment. She said, “they want to put me on cholesterol medication, and I’m going to fight them.” So, I get to sit in the lobby. Surrounded by people I don’t know, and have never seen. I keep telling myself, “breathe, stupid. Breathe.” But, I find my hands shaking anyway. No one notices, really, ‘cause I’m typing this. So, everything looks OK to them.
It’s called, “hiding”, Deb. I do that a lot. Without the Aspire One, I’d be pacing. Or standing in a corner. Trying to blend with the wall. 8 people sitting in the chairs around me. Then another four people that work here over at the desk. I look around. I see people on the phone, reading magazines, talking to each other, sitting quietly, watching the TV. Being “normal”, Deb. Being normal.
And I’m sitting here hanging on to a fragile thread of stability, trying not to get up, walk out into the hall, and sit on the floor out there, leaning against the wall. I’m using all the things I’ve learned in the past 53 years to find a way to sit here. And wait. And not disturb the people around me.
It’s hard. Deb. You have no idea how hard this is for me to do. No idea at all.
I keep feeling like I should run. Get up, and just go. Anywhere. Anywhere but here. I don’t belong here. Like I should go, sit on the back bumper of the car in the parking garage. Where I know I’m OK.
I wish, oh, how I wish, I could find all the words to explain. So that someone other than a fellow person with an ASD would understand what it takes out of me to do something so very simple as this. So stupidly simple as sitting in a waiting room at the doctor’s office, waiting for my spouse to complete her doctor’s office visit, and come back out.
I know, I mean, I understand. This is something people do. They support each other. I’m here to be her friend. To show my support. To spend time with her. I know that. I understand that. But, she’s in an office room back behind a door somewhere. And I’m sitting here. Alone. Having to find a way to hang on, and cope with a situation I don’t understand. And environment I have never understood, and never will. Trying desperately to simulate normalcy well enough that no one thinks anything is going on.
Can you see why Pat brought up the disability claim option again? Why my psychiatrist brought it up. Why 85 out of every 100 of those of us that are diagnosed are unemployed?
Such a simple thing, Deb. Such a simple thing. And it’s so very hard to do. So very hard.
Monday. I visit my doc again. I’ll see if I can start finding a way to talk about the big nightmare sitting in the room that I’ve been avoiding talking about. I can’t promise anything. I can’t. Other than I’ll try.
I need to go take a walk in the flowers. I really do. And I can’t. I don’t get that chance until Sunday, when I have the day off of work…
Breathe, Marcus. Breathe. Just breathe, damn you. Breathe…