The past few days, I’ve been rereading Rudy Simone’s collection of interviews with autistic women, Aspergirls. I remember reading Simone’s book for the first time and taking copious notes; these women whose stories were contained in these pages sounded like me. I didn’t feel so alien, and as I continued to immerse myself in its narrative, I felt known.
In returning to Aspergirls, I noticed something else: These women were working through the shame of being themselves in a world ill-equipped for people like them. To recognize one is autistic in one’s 20s (or later) is a jarring experience, but it can also be incredibly comforting: I’m not wrong; I’m different and that’s okay. But it’s difficult to shake the internalized sense of wrong that comes with struggling to fit into an allistic world.
Let’s talk more about shame, she said. This seems to be an ongoing narrative I’ve been working through. If I can see shame at its sources I can begin to dispel it. But shame is tricky; sometimes I’m ashamed of the shame I experience about my own limitations: the missing social cues, getting lost in a task sequence, and trouble following verbal directions. These are everyday reminders that the autistic experience can be exhausting, even with all of the workarounds I’ve developed. Then I feel othered and odd all over again.
The alien nature of Autistic experience is a commonly used metaphor in our community. I recently checked out A Field Guide to Earthlings, a help guide designed to explain allistic (non-autistic) social behavior to autistic people. One of the early forums for autistics was Wrong Planet, yet another reference to that alien feeling — the not belonging here.
I remember writing a notecard for myself: “You are here in this place; you fit; you belong.” For me, the experience of feeling alien was accompanied by a sense of shame: “I don’t know how to fit; maybe I am alone in this.” Shame breeds isolation, especially when it’s accompanied by a sense of generalized anxiety. These lingering fears — of being yourself, of being visibly Autistic and perhaps being othered in the process — can make you hide. You script and avoid talking about yourself because that’s too awkward. You fear being misunderstood because it’s a familiar narrative (and it hurts).
I am an Autistic woman with an undergrad degree in psychology, working toward her PhD in a special education related field. I recognized these traits in myself about two years ago, which means I’ve managed these programs of study using a large number of workarounds — the rituals and routines that help me remain a (mostly) functional adult. I feel like a magician sometimes, with these slights of hand designed to make me appear typical or at least the more socially acceptable quirky.
This process is exhausting, even though I’ve given up on the idea of passing (unless the situation leaves me with no other option). I want to be visibly Autistic when I can: to stim in public, monologue without fear of boring my conversational partner — to be myself. But even as I practice being proud, part me is still terrified. Of what you might ask? That my self-made organizational supports will fall apart and so will I.
And this is the point where my therapist would ask, what would happen if you did? I’d attempt to develop yet another contingency plan; well I suppose I could… And that would be… I’d imagine the okay that would follow. We would talk about how well I was coping. This is fine, but I’m still tired of needing elaborate diagrams to complete final essays in a timely manner — tired of completely forgetting why I walked into a room.
To know how much work it takes to live a functional adult life with my Autistic brain — a neurotype that struggles to fit itself into an allistic world — is tiring. And in this exhaustion, I feel wrong, even though I’ve struggled to thrive among all of these things. Part of me wonders if I just worked harder I could be better. That’s the internalized ableism talking.
Yes, you have executive dysfunction and social disability, but just stop being that way, it says. Stop shaming yourself. Why do you do that anyway?
These are the self-critical parts of myself with whom I dialogue. But I can’t quell the shame on my own because internalized ableism doesn’t begin with me. It is reinforced by faulty expectations and misunderstandings of what it is to have a disability. I’m learning to ask for help as I question this narrative — of what it is to be functional, independent, or even an adult. I’m changing these mile markers.
I have a whiteboard with multicolored notes reminding me of activities of daily living, appointments, and upcoming coursework. There’s a column for the support people in my life, who encourage me to manage the anxiety and socialize even when it’s intimidating (to be around people, when I’d rather hermit). I have a desk at work I cover with sticky notes. I’ve learned to write all auditory directions down, so I can remember them. Part of me is ashamed of these actions because they remind me of my struggles, but they help me anyway.
The Autistic Internet reminds me that I’m not alone in these fears of being myself or the frustrations of still needing workarounds to get through the day. With each Twitter post or blog entry I read, I’m reminded that I’m creating my own kind of normal — a relatively predictable, fulfilling existence — and reminding myself that will be enough.