Diagnosis and Masking – Week 5 of #TakeTheMaskOff

What impact has my diagnosis had on my masking? That’s the question posed this week. For some reason my mind wanders to Robert Frost’s poem, The Road Not Taken. Most people know the poem only from inspirational and individualistic quotes about choosing the road others avoid and the difference that can make. That is not, of course, what the poem says at all. I’ll include it at the end for those who might like to read the entire thing. It has a whimsical quality and is full of twists and turns. In the present moment, our traveler is torn between two roads, equally fair, both perhaps worn the same, yet both untraveled that morning. It bounces back and forth down different avenues of observation and speculation in that indecisive moment. There’s a sense that whichever path is chosen there is certain to be at least some regret. The closing, most often quoted lines are not set in the present moment, though. The traveler recognizes that in some distant future they will look back, define the road they chose as the one less traveled, and build a story about how that choice made all the difference in their life.

Our stories are never simply recitations of fact. We are creatures who build narratives. Events in our lives have meaning to us because we imbue them with meaning. We connect them. We are not objective, outside observers. We are participants in the tales we tell. And the ways we choose to tell them shape ourselves and often those around us. The lightness of Frost’s poem carries within it our traveler’s awareness that they are in part a character in the story that will one day be told by a future and perhaps very different version of their own self. We exist in the now. We share a thread of continuity with the versions of ourselves we have been in the past and we trust that thread will be maintained by our future versions. But that future version will not be precisely us, right now in this moment, any more than we are the same as those different versions of ourselves in our past.

Moreover, our memories are not cameras. Even the experience of our senses, the data that informs what we think we know about the world around us, is heavily shaped and interpreted by our brains. The memories themselves collate and capture and often try to make sense of that information. They fill in the missing pieces. They drop things that don’t fit. They revise and reshape. Every single time we access a memory, it is read and written anew, as if it were a new memory. Frost is right. Even though in the present moment we perceive the roads as equal choices with little to distinguish them, in the future we will remember them as markedly different and imbue meaning into the choice we made.

How has my autism spectrum disorder diagnosis impacted my masking?

It has made all the difference. And none.

I can only speak as a late diagnosed autistic person who went from no awareness at all to assessment and diagnosis over a pretty short period of time in what felt like a whirlwind.

That event altered the narrative of my life by giving meaning to things I had felt were scattered and disconnected. It explained things I had never understood and which I had often tried to push to the edge of my consciousness. My diagnosis provided a framework I had lacked my entire life. It changed and is continuing to revise the story of Scott as I put the different pieces in place. It has given me access finally to perceive and hopefully work through things that are not directly related to autism. That may sound strange, but autism describes the way I experience … everything, including trauma. I have an autistic brain. That self-knowledge doesn’t just explain my autistic experience. As I work through my stories in that light, I can finally see and begin to understand all the other things as well.

For we are always creatures who tell stories, of all sorts, but most especially about ourselves. My stories have been shifting and changing. I’m aware of the process and it doesn’t bother me even though I understand it bothers many when it happens to them. I’ve been trying to piece together coherent narratives my entire life. I’ve never found them to be static or, for that matter, complete. And that means I can only write as the person I am now, remembering past events in light of the information I have in this moment, not as the person who actually experienced those events. I see my past masking so much more clearly now than I ever did when I was the person doing it in the moment.

I have little idea, really, who I am and what I want, beyond acceptance and love. I’ve striven for those two things from my earliest memories, with all my will and ability, and I’ve focused my efforts on discerning which things are acceptable to do, acceptable to want, and even acceptable to be. As I told my therapist, there are limits to acceptable deviation from cultural norms in behavior and interaction that most will accept. I’ve worked really, really hard to find a way to stay within those lines, or at least manage perceptions well enough so people mostly believe I do.

My diagnosis has given me the option to turn the accommodations I’ve long informally negotiated at work and over which I’ve incessantly worried into formal accommodations. That removes one source of stress. I’m somewhat more aware of my masking in the moment now and better manage my energy or take actions to reduce some stress. Diagnosis allows me to be more intentional in my efforts instead of flailing at everything.

I would not, however, say that I mask less in any situation or interaction. I think I’m better at some aspects of masking now and worse at others. Some things I’ve done worked better when I wasn’t really aware of them as I was doing them.

My diagnosis altered my whole world and cast all the stories of my life in a new light. That process is ongoing and touches every part of who I am. My diagnosis did not, however, change the world in which I live. It’s no more safe today to stray outside the boundaries of “normal” than it was when I was a child working diligently to fix myself. I do not feel any safer today than I did then.

I’m working on … everything. That’s really all I can say with any certainty.

The Road Not Taken

Two roads diverged in a yellow wood,
And sorry I could not travel both
And be one traveler, long I stood
And looked down one as far as I could
To where it bent in the undergrowth;

Then took the other, as just as fair,
And having perhaps the better claim,
Because it was grassy and wanted wear;
Though as for that the passing there
Had worn them really about the same,

And both that morning equally lay
In leaves no step had trodden black.
Oh, I kept the first for another day!
Yet knowing how way leads on to way,
I doubted if I should ever come back.

I shall be telling this with a sigh
Somewhere ages and ages hence:
Two roads diverged in a wood, and I—
I took the one less traveled by,
And that has made all the difference.