One of the greatest, most hurtful, and pervasive of all the ironies in human nature can be summed up by Gandhi:
“I like your Christ.
I do not like your Christians.
Your Christians are so unlike your Christ.”
The problem with recognizing that is how frightening it makes the world become. And, in doing so, we want to latch on to something (or someone) who can save us from that fear because the truth is too much to handle.
But, nothing or nobody is really going to come and rescue you completely from whatever demons you may face. You only have to hope someone can lend a hand occasionally, and that you can do likewise.
This is why my diagnosis says, “requires support,” and not “requires everything.” It’s analogous to require someone to open the door when your hands are full, so to speak. My wife actually gets mad because she doesn’t get that simple analogy—I’m not supposed to use analogies anymore. Is that my autism or something else?
But, what happens, when the person who can see you need the door open is not the person who is at the door? What if there are several doors that require several people. Maybe you are holding a door for someone else, or multiple doors for multiple people. They likely are as well. There is a limit to how many doors one person can open at a given time or within a certain interval.
It can be complicated, the interaction of people, loads they carry, and doors that need to be open. Furthermore, it’s a simple question of if someone—anyone -will give you the support you actually require. The main reason I decided to get a diagnosis was to show those closest to me that I needed their help, and, without it, I was going to continue to struggle. Unfortunately, I ran out of time, barley, apparently, even though I’d been trying to get diagnosed and had to wait for years. I would rather not have needed to get a diagnosis, but nothing else was working. I’d been trying for twenty years! And, I realized I had to find a way to figure out reasonable expectations for myself and others. That was the one thing I knew for sure—that I couldn’t do it without support! I can’t. That’s why I’m working one hour a week, and even that is very difficult.
There probably is a formula, at least hypothetically, that shows how autistic burnout is connected to “doors,” “loads,” and “support.”
I have never lived alone. In the right situation, I most likely could, but I’d still need a friend or two—or someone—making sure I was fine and helping out some.
This past year couple of years were exceptionally brutal, in large part because all the structure and people who normally were able to help me were not available or completely collapsed. Actually, they basically all collapsed, and, despite pushback, I think I am right to suggest the right person offering a small amount of support—even validation—would have made all the difference. Trying to fix it now, to focus on the present, is not bringing back the support I did have. So, I’m stuck hoping for one person to decide my autism diagnosis does not contradict her newly discovered “self-care” mantra cloaked in her “diagnosis” of the not-a-real-diagnosis of codependency.
As one of my kids onetime said (when he was eleven), “Mom is always there to help others, but when we need it, she is not here.” That’s not just codependency; that’s people-pleasing everyone but your family, including the three (or four) of us who are autistic. That’s not just refusing to hold a door open; that’s refusing because you’re going to go hold it open for someone else far away who doesn’t need it any more than the person right there—who happens to be your child (or partner). I guess, an eleven-year-old autistic child wanting his mother to help him (or just be with him) instead of going to help someone else’s child or whatever else someone asked her to do, is selfish on his part. She did happily discover that, with enough medication, he’d quit complaining so much. However, she has yet to figure out all he did is internalize it and continue to discuss it with me and his therapist, having given up on his mother ever understanding. And that, based on personal experience, is not good.
In some ways, I wanted my diagnosis more for my kids than for me. It’s yet to prove beneficial, but there is some progress. (Oh, as I’ve mentioned in some post, I had a friend who could have helped my wife, but my wife never took my advice to speak with her five or more years ago. It’s all a sad mess now—well, I’m rather apathetic at this point.
But, to most of the world, my wife is the embodiment of the “Christ,” always eager to please and never complaining. For some of us, she is just a “Christian,” making us feel guilty when asking for her help. However, I’ve adopted a new guilt-free strategy, now that my life has basically fallen apart, and she still doesn’t quite see her part in that. I’m simply not going to try. In fact, I can’t wait for my one-hour-a-week job to be over, since nobody there really understands me.
If people can’t or won’t help me, I’ll just do what little I can, and they will have to accept that. I’m not going to try to venture very far into the world on my own again.
“Requires support” requires the having a few people around me who Gandhi revered more than the ones he didn’t care for. But, too often, the ones he didn’t for don’t like the ones he did. It’s suspiciously like what Christ taught. But, to think that way can get you killed or wounded, and, I can tell you that I’d probably prefer to be physically dead than as emotionally hurt as I have been.
At various times, we require more or less support. And, we can only hope people around us act more like the “Christ” Gandhi revered than many of the Christians he observed. (To be fair, he was speaking of the ones he observed, and I doubt he’d have applied it to every person of any religion.)
If we don’t get it—and, for autistic people, it seems to be an inherently likely problem—it can be a disaster. For example, we can end up lying in bed all day blogging because we are too traumatized to want to be around people. All we needed, perhaps, was for someone to open the door for us. And, when they did not, OR when the load became too big to handle without even more support, we cannot stand up, and anyone who was helping us might fall down with us.
Like Gandhi, I have a real difficulty with people who revere the “Christ” but, in failing to act like him, tear down the people who do. This happens all the time, and people are miserable. But, it keeps the structure, the stability. And, that is more important than anything else for many people, as well as to society. In that regard, they possibly are correct. There is power in the status quo. That’s why most Christians don’t like their own Christ.
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