You Have It So Good

People look at my life, and the fact that I'm an autistic, and say, "You are doing so well," or "You can't possibly be autistic."

After all, I have a good job.

I drive my own car.

I can express some of my thoughts.

I do so many things other autistics can't do.

I even like myself and my autism.

But my disability can't be judged that way.

You can't look at me and say, "Oh, he does (A), (B), and (C), which most autistics don't do. Therefore he must be only mildly disabled." You can't say, "Your disability doesn't really affect you the way it affects others. You wouldn't be glad you were autistic if it caused you real problems."

Frankly, I'm sick of being judged this way. This judgment has made it hard for me to seek and receive the support I need to survive.

Yes, survive.

That statement isn't metaphorical. It is literal. It is my here-and-now.

At the end of 2004, I was literally starving to death. You see, I can't always tell I'm hungry. When I can tell that I'm hungry, I often find it impossible to produce and consume a meal. And the occasional fight with depression doesn't help any either.

I weighed, at 5'10", as an adult male, around 110 pounds

When your body has consumed nearly everything that can be consumed, and is consuming the little muscle that remains, your internal organs, and anything else it can't produces a strong ammonia-like odor. You can't get rid of the smell with bathing. I tried.

Some friends and, I believe, the help of God, caused me to see that I was dying. And I found a way to establish some routines to eat every day, since I knew my life was depending upon it. For nearly 8 months, I managed to do so too. Of course I'm having trouble again with that, and even 8 months of relatively good nutrition isn't enough to recover fully - I probably never will have the strength and endurance I used to have; I expect it to be a long time before I can walk without pain (you lose the padding on the bottom of your feet when you starve).

Why am I having trouble again after 8 months of success at eating? Simple. I don't have the capacity to do all the things that I do which cause me to appear "successful" and "mildly affected" by my autism while also doing the things I need to do to survive. I probably never will be able to do all the things I need to do to survive consistently. I need support, which I don't have and don't have the ability to get them. But no one sees this. And when they do, they don't believe it. After all, I am good at my position at work, I can drive, I like my autism, etc.

Of course eating isn't the only problem I have. I'm stuck in a house that is unhealthy and unsanitary because I lack the ability to manage that part of my life. I have no idea how I'm going to get out of this pit I've fallen into, no idea how to get the support that I need. There are less critical needs that have gone unmet for years, such as doctor visits, contacts with relatives, managing my finances properly, etc.

In addition to all of this, I lack the social support system that most people have. I have three times a week when I'm able to socialize in person with anyone but coworkers. Rarely do I socialize anytime outside of these three times - I just don't have the social network most people have. I go to church on Sundays, and can spend a few minutes talking to other people there, if I'm not too overloaded and confused by the noise and business of the surroundings. I go to a Bible study on Fridays with a group of about 10 other people, yet I'm most alone in a large group - it is nearly impossible for my mind to handle the social complexities of a large group. And, once a week, I eat a meal with some friends, which is the highlight of my week. They probably have no idea how this is one of the few things that lets me feel human during the week. The question I ask, though, having explained my social life, is this - who here is involved enough in my life to help?

Sure, I could have a nervous breakdown and get psychiatric "help". I might even luck out and get some help with my home and navigating the complexities of society necessary to survive (such as negotiating with landlords, dealing with my bank, handling bureaucratic screw-ups, etc). I probably wouldn't ever get all the support I need as even people who don't present the paradoxes that I present can't manage to convince others that eating and health may be important. But, once I broke down, lost my job, lost my ability to pay my bills, got thrown out of my house, spent a while homeless, and eventually got picked up by law enforcement for being guilty of not having a place to live, I'd probably have an easier time getting some of the support I needed - I wouldn't be as paradoxical as I am now.

But of course that help comes at a price. There would be no going back. I would lose many of the things I value. Sure, I could still be content with God's help. But why should I have to lose all these things that are good, that are valuable, simply because my abilities and inabilities don't fit the stereotypes properly?

I am scared. I am scared that the breakdown is inevitable, and getting closer every day as the demands of life pile upon me and continue to be unmet, day after day, month after month, year after year. I'm near that point now. My health is at risk, my safety at risk, my stability at risk. Yet there is no way out.

In the midst of this, I get to be told how "mild" my autism is, how I don't really have problems, how I don't understand the problems of other autistics. It's probably not too surprising that I fight depression when that happens. Being scared of what seems to be the inevitable future doesn't help, either.

So, the next time you assume someone who holds a job, drives a car, lives alone, or any other trait has "mild" disabilities, I urge you to reconsider, at least until you've actually spent enough time getting to know them before calling down judgment upon them. I know there are very few people close enough to me to be qualified to make that judgment about me.