Until a year ago, I was like the vast majority of the people the world, in that I knew nothing about autism, other than the fact that it existed. Then I finally got my diagnosis two weeks before my 58th birthday, and my life was turned upside down. There are loved ones, both friends and family, who don’t speak to me. Others look at me as though I’ve changed, and they feel slightly uncomfortable and don’t know what to say to me.
Personally, I’ve found my diagnosis to be a huge relief. A lot of puzzle pieces in my life have finally fallen into place. Since then, I’ve had a lot of catching up to do. I’ve been reading books, participating in Facebook groups, watching YouTube videos, and just generally educating myself.
I have long wondered why I am so misunderstood by people. It’s one of the most painful aspects of my life. I’m often accused of having motivations or character traits that I don’t have at all. I struggle to be believed or trusted even though I don’t have a malicious bone in my body, and I find lying entirely too exhausting to engage in.
I’ve spent a lifetime trying to explain myself or defend myself to others, which was nearly impossible back when I didn’t know what was “wrong” with me, either. Sadly, it’s a rare individual who is willing to change their mind once they’ve decided that they’ve assessed someone’s character. Most people lack the patience to even attempt to understand me. My success rate at winning someone over once they’ve written me off is exactly zero.
Sure, I function well enough to “pass” as “normal” for a while, but most people sense early on that something is slightly “off” about me. The fact is, the more people get to know me, the more I irritate them. They think I’m rude, pushy, arrogant, distant, distracted, boring, childish, spoiled, and that I’m being dramatic to get attention.
People aren’t sure how to read my body language or my facial expressions, so they automatically assume that whatever mood I’m in, it must be negative. My neutrality is off-putting, so I must be unhappy, angry, or even hostile. I fidget, so that must mean I’m impatient or bored. I avoid eye contact, so that must mean that I don’t like you, or I’m not at all interested in what you have to say, or I can’t be bothered to pay attention. I overshare, think literally, lack subtlety, and have no filter whatsoever, so I must be arrogant, tactless, rude, or self-absorbed.
Dealing with all these misplaced perceptions means I’m starting off 30 yards deep in my own end zone. Is it any wonder I struggle to make a touchdown? Just watching how much extra effort I have to expend simply to get in the game, and how much anxiety I feel because of that, must be exhausting to the outside observer. No one likes to feel drained, even if it’s only by proxy. No one wants to feel held back or burdened or slowed down simply because I can’t keep up.
Sometimes I sit in a group, and I look around and wish I weren’t perceived as broken. I’m just in an alien environment. Is it fair, under those circumstances, to be measured by an earthling yardstick? For all you know, I’d be quite popular or formidable on my “home planet.”
Imagine finding yourself on earth, but coming from another galaxy entirely. The space suit you need to wear looks quite like a human being suit, so at first glance you appear human. There’s not enough breathable air for you to survive without making an extreme and unrelenting effort, and that exhausts you. You really want to learn from the natives, but you barely understand the language they are speaking, and you have no idea what their cultural references even refer to.
You also seem to have additional senses that they lack, so your sensory processing time is slower, but the information that you’re taking in is a lot more detailed. Since the locals can’t even conceive of these additional senses, they don’t actually see the enhanced abilities as being of any value. You know you have a lot to offer, but since those offerings don’t show up in any store that they are used to shopping in, no one wants to even stick their head in the door, let alone buy what you’re selling.
Frustrating doesn’t even begin to describe it.
I’m starting to realize that no one will ever completely “get” me. When that first dawned on me, I was really horrified. I’ve wasted so much time trying to find that place where I’d be accepted and understood, where I could finally be loved for who I am, warts and all, only to find out that that place will always be just out of my reach. Now, I’m kind of resigned to that fact. I hope someday I’ll get to a point where I no longer care about such things, but it’s hard to change the habits of a lifetime.
If you know someone who is on the spectrum, and you despair of ever being able to connect with that person, I suspect that your primary frustration is that you believe they won’t or can’t pay attention in one way or another. In fact, no two autistics occupy the same place on the spectrum, but it’s a safe bet that there’s a lot more going on, one way or another, than you may ever see.
I think I have an analogy that will bring you some level of comfort. At least I hope so. Imagine neurological function as the twenty-sided die that floats in the center of a Magic 8 Ball.
You are used to only looking at the facet of that neurological die that is facing outward. You assume that is the measure of consciousness. “It is decidedly so.”
But the fact is, there are 19 other sides to that die. So, if you look at someone and it seems as though that forward-facing facet is not functioning to its optimum level, you couldn’t be blamed for assuming that the lights are out and no one is home. But for all you know, there’s a beehive of activity going on in other parts of the die.
Your autistic loved one might have a blank stare, but at the same time they could be acutely focused on sounds that you have the luxury of tuning out. They might not have the verbal skills that you typically expect, but they still may have a great deal that they’d like to say. They might not be very organized, but that’s because they are attempting to alphabetize about 1000 more mental files than you are. The breadth of their perception may not be as wide as you might like, but it could be much, much deeper in its laser-focus. Some autistics may seem clumsy to you, but that’s because they are dancing in a different dimension.
Maybe, in your efforts to measure the worth of the neurodiverse person in front of you, you are using the wrong yardstick. They might seem to be coming up short in the neurotypical world, but in some ways, by some yardsticks, there’s a possibility that they’re 10 miles further along than you are. “Outlook good.”
A book about gratitude is a gift that keeps on giving! http://amzn.to/2mlPVh5
Leave a Reply