Illustration of six hands holding up signs that say Nay!

I’ve decided to describe projects I run late on with a hearty, “Snailed it!” It’ll sweep the country. You’ll see.

Anyway, SNAILED IT!

I posted this on the Quirky Boys Facebook page last week. It’s about the pain caused when someone dismisses your experiences or feelings as invalid. It’s quite a powerful, insightful piece.

This week, I wrote a response to a comment on my last post. I want to make sure to point out that I don’t see this comment as a dismissal. When someone shares their diagnosis with you and your response is to say, “No way,” or, “I don’t see that,” or to list all the ways that person is not whatever he or she just claimed to be, that’s a dismissal. But Karen’s comment, at least to me, is not.

She’s talking about labels in general and she’s not denying my experiences. That’s an important distinction to me. She’s talking about acceptance, just in a different way than I was. But before I go on, here’s the text of her comment:

I’ve been thinking a lot recently about labels. More in terms of sexuality, since I know a teen who is trying to figure him/herself out – bi or gay? transgender or not? etc. Which doesn’t apply to you obviously, but the need to be able to label who you are does seem to. It’s a very human impulse to sort things into categories, to label and identify and classify. But I’m finding more and more, that labeling is limiting. Almost all of our abilities, desires, expressions of self exist on a continuum not in a binary. And by labeling we limit ourselves to that one spot on the continuum instead of a more fluid range. It’s comforting to be able to say “this is who I am” “this is why I am the way I am” but it’s not really that accurate. I really wish we did less labeling and more accepting. Less categorizing and allow for more diverse expression of self.

I don’t know if that is any help at all; it very well may be the opposite from helpful. Knowing your own quirks of behavior and your own needs for how you learn and function is really helpful for getting along in the world, but trying to shoehorn yourself into a label which may not fit isn’t.

From over here where I’m sitting, you are very self-aware and quite talented at expressing yourself. You’re a caring mother, you’re fun and funny. You can come sit at my lunch table any day.

Here’s my response:

It is a help. Thoughtful responses, even those I disagree with, maybe especially those, help me rethink and reframe. They help me figure out if I said what I thought I did and, if so, if that’s really what I think. They help flesh out ideas and new perspectives on things.

That said, I don’t totally disagree with you. I think some labels are limiting for some people. And no label should define who a person is. I think labels are a lot like families; stifling for some, a touchstone for others, somewhere in-between for most.

I think what you are saying to me is that autism seems to be a label I’m trying to squeeze myself into and that process is hurting and limiting me. I can see how it would look that way. But I don’t see autism as a limiting label so much as a reality check and a jumping off point. To me, it feels like freedom.

It feels like the tether that allows me to explore space without floating away.

It feels like a way of building a strong base, a solid foundation to grow on. I’ve built lots of little towers all around. The more I learn about autism, the more I see that they’re all connected. They always have been, but I didn’t see it, so now I’m trying to fill in the holes and tie the towers together so that I have a solid foundation. That way I can build higher.

It feels like solid ground beneath my feet.

Illustration of a big hand holding an eraser in the process of erasing a frightened man’s legs.

And it feels like the neuropsych is telling me to step off; that I can’t stand there. Or, more accurately given her report, that I can stand there if it makes me feel better, but that doesn’t make it my patch of dirt.

It feels like I’ve been dismissed.

Now, I’ve been dismissed before. A lot, actually: my feelings, my ideas, my right to breathe air. But never in something I felt so sure about as my autism diagnosis. There have been lots of things, mostly educational or training programs, where I thought I should have been dismissed and wasn’t. The people who were supposed to know, the experts, told me I should continue beyond the programs. I almost never did.

Instead, I chose new programs or took jobs below my educational level and supposed skill set. That’s called being under-employed and it’s a real thing in the autism community.

I think the crux of my chronic under-employment is that I am unwilling to be the expert on anything unless I’m 100% sure I understand everything about it. Science doesn’t really deal in absolutes…there’s always more to learn. You have no idea how much it broke my brain when I found out that text books were just books and what’s written in them isn’t always true or may not be the whole story.

Now I have trust issues, man.

Another factor is that higher level jobs often include answering questions posed by clients or bosses that you don’t always anticipate. At least I don’t. I’m not so good off the cuff. It takes me time to formulate a response to questions I’m not expecting. Or ones I expect, but are asked in an unfamiliar way. My pause and subsequent fumbling answer make me sound incompetent, make me feel incompetent, so my confidence plummets even further. So, I don’t take jobs that put me in that position.

Furthermore, in scientific fields there’s always a new study coming out. I’m a slow reader, but even if I could speed read, I don’t think I’d ever be satisfied that I knew enough. I can’t fake confidence. I either know something or I don’t and, if I don’t, I won’t talk about it without qualifying everything I say. Which is why I defer to experts. I believe that they know more than I do. They seem like they do, so they obviously do. Except, as it turns out, it’s like the whole textbook thing.

I don’t have a problem being wrong in general. I get really embarrassed about it, but I don’t have a problem admitting I’m wrong. Except when I am absolutely convinced that I’m right. On those few things, it drives me crazy if someone, anyone, doesn’t believe me. Because I know I’m right, I’ll think I just haven’t explained it well enough and will keep at it indefinitely, convinced that you, or whoever, will eventually see the light if I can just say it in the exact right way that you can understand. I’ve learned to stop talking, though sometimes that takes a looooooong time, but the conversation goes right on in my head. I’m still trying to convince someone I was right about something I said 30 years ago. He probably doesn’t remember he ever met me.

Which brings me back around to the neuropsychologist. She’s an expert who is dismissing my conclusion that I am autistic. A conclusion I’m sure of.

The label is not what is limiting me here; it’s my need to be validated by an expert. The people who know me best are convinced I’m autistic and ready for me to move on from beating my head against the expert wall.

It comes down to her word or mine. Am I going to take her word as law because she’s the expert or am I going to step up and take my place at the table? Can I acknowledge that the jury’s still out on what exactly constitutes autism, especially in females? If I can, then there is certainly room at that table for my voice.

I advocate fiercely for my boys. It’s time I did the same for myself.