What is it like to look at the world, knowing one is isolated by disability, wondering how it would feel to have a job, a girlfriend, or a family? What is it like to be less disabled, to have "attained" those things, only to lose them, and be crushed by depression and despair? Is one role better than the other?
Some of my recent stories have touched upon the question of autism, disability, and the relative impairment or position of people at different points on the spectrum.
When reading the comments to my earlier posts I get the feeling that certain people with greater autistic impairment than me feel that their "less impaired" brethren - me included - somehow have an easier life. I don't agree with that. Life is hard no matter where you fit on the curve.
Several commenter's compared levels of disability in the world of friendships. One person said, "I have never even had a girlfriend," and the tone of his remark was such that I was made to think, Imagine how much that hurts. Well, as it happens, I know how that hurts because I've been there.
I didn't say anything at the time but I thought about his words and my own life. The memory of my time at Amherst Junior High is still as clear as yesterday in my mind.
I remember exactly how it felt to look at couples holding hands in the hallways, while wishing I had a girlfriend. I'd see them walking past, smiling and talking, and I'd feel so terribly alone. I'd look down at my own empty hands and ask, what's wrong with me? The pain of those memories is still sharp, thirty-some years later.
It was a big step up from the loneliness of grade school, which until then was the worst pain I'd known. At age six, being called a retard had hurt a lot. But at age thirteen, being totally ignored by couples and by girls in particular hurt even more.
It's hard to be alone when you're surrounded by couples. My solution was to retreat into books, machinery, and places where couples did not intrude. There were no couples in the electronics lab, or the auto shop. Most of the places I hung out, there were not even any people at all.
That was my method of coping for many years. I did not know how to begin a romantic relationship, so I hid. When I did pop into view, I gave my autistic mannerisms free reign to drive away any potential suitors. It worked. Romance did not have much place in my high school experience, with the exception of Cheryl, who led me on just to toy with me. That experience also remains with me today.
That's the place some people on the spectrum remain at as adults, compounded by years of experience of the same romantic failure. Some distract themselves by immersion in other interests, while others dwell on why something never worked out.
I remember that place well, because it was my own life until age eighteen or so.
Then I fell in love, for the first of several times. When it was good, I was so happy. Proud, too, to have such a pretty, vivacious girl be interested in me! Words cannot express how good it felt to leave my lonely and solitary existence behind. Unfortunately, it didn't always last.
"I just can't do this anymore. I can't keep seeing you." Her words came out of the blue to shatter my world. I knew there were issues, to be sure, but like all Aspergians I am very tied to routine. I'm very slow to change, sometimes seeming to discuss things endlessly before making a change. So her sudden decision to dump me came as a total shock. One day I was happy and dreaming of a future. The next day, it all lay shattered in the dust. The pain was far, far worse than anything I'd ever known. I read those trite words, better to have loved and lost, than to have never loved at all, and I wondered what planet that writer lived on.
When I learned about Asperger's one of the things that struck me false was the talk about empathy and emotion, and how people like me supposedly lack those feelings. Anyone who could see into my mind in that moment of darkness and torment could not fail to realize how totally wrong those statements were.
Yet I didn't show it. I was dying inside, but to the rest of the world, I was the same person as always. Inside, my heart was pounding and my mind was racing in ever tightening circles on a descent into darkness. But I gave no sign of the torment within. Can't you talk about it, people would ask me today? I don't quite know how to answer. Even now, in middle age, the sting of childhood rejection still lingers. I could go through that experience now, at 51, and I might well react just the same as I did at 21.
As I get older I seem more polished and sociable, but given enough stress, the old autistic behaviors rise to the fore. People say I have a childlike innocence, which is nice at times. But at other times, I can revert to a wounded and hurt little boy, and that's not good at all. I close down and suffer in silence.
There is little to help that kind of pain. Today, life experience tells me that things will usually get better. But does that message always get through?
When I read about how lucky I am to have met a girlfriend, found a wife, had a kid . . . I realize those things came at a price. They weren't free. It's true that the greatest joys I have felt have been with the people closest to me, but at the same time they have caused me the sharpest and deepest pain I have ever known.
So what would I say to those who feel their disability has prevented them from experiencing such things? There's no free lunch. In the end, we all want what we don't have. But does getting it make us happier? There's no evidence that it does.
We all tend to look up the ladder of achievement and dismiss the worries of the guy a few rungs above us. We think, "he's got so much more than me, he must be on easy street," when in fact he feels pain and worry just as we do, maybe even more so. You might ask why I'd say "more" . . .
I'll offer one stark piece of evidence. There is virtually no incidence of suicide among developmentally delayed (I'll use the emerginent PC term) people. If you have an IQ of 70, you may do many things, but deliberately kill yourself is not one of them. At the other end of the spectrum, history is filled with examples of geniuses and gifted, highly creative people who took their own lives in moments of despair.
It's said that one in thirty medical doctors dies by their own hand. Yet no one says anything. Can you imagine the uproar if one in thirty autistic people in a group home killed themselves?
Greater functionality may bring bigger "ups." But it also brings bigger downs. There is always a price, and sometimes it can be very high.
Depression and pain affect people at all levels of society, with and without disability. The idea that some people with autism are less disabled and therefore suffer less is simply wrong. We all suffer to the same extent that we experience joy. Some of us may feel those things in more muted ways, but even if we do, it's our life and it's all we know.
My pain is my pain, just as yours belongs to you. The fact that you think mine "should be less" because I am higher functioning does not make it any less real to me. However "easy" something may look to me, I now know that it may be a huge big deal to you. I hope to get the same consideration from you, because there is no way to guess when your "easy" may be my "insurmountable." And when we ridicule each other, it leads to a place no one wants to go. . .
It's one more reason that we should show tolerance and compassion.