I’ve been submerged in autistic culture for a little over a year now, and one of the things that seems very integral to the current autistic pride/advocacy movement is identity first language.
I have slowly stepped into the narcolepsy community, and it is a world of difference. The official abbreviation from what I can tell is PWN, short for person with narcolepsy. This is a foreign concept in a lot of ways. I would never say “I have autism,” I would say “I am autistic.” But in this community, I get the feeling to say “I am narcoleptic” would be a misstep.
So to fit into both of these circles, I would describe myself as an autistic person with narcolepsy.
I have decided to muse a bit on why I think these differences have arisen, based entirely on personal experience of both community and personal disability.
Autism is, in my mind (and the minds of most autistic people I’ve met), at the least personality trait and at the most the defining aspect of one’s personality. The vast majority of people in the autistic community view therapies and treatments to “fix” autistic traits as misguided at best and abusive at worst. It is a neurological trait, and a disabling one in many ways, but disabling because the world is not made for us, not because we are not made for the world. The general attitude around being “out” as autistic is that there should be no shame surrounding autism, and that if anything, autistic pride is a goal.
In contrast, narcolepsy seems to be very separate from who I am as a person. If anything, it makes me feel more and more distant from myself. Before I figured out I had narcolepsy, I thought I was simply losing myself more and more and that I would never find myself again. Now I am regaining myself as I struggling to cope with narcolepsy.
And that is the difference, in many ways: one copes with narcolepsy, whereas one lives with autism. Narcolepsy feels incredibly physical, the heaviness in the body, the sleep, even the hallucinations feel so physical. It’s a neurological trait but it is a bodily fight. It is disabling because narcolepsy is not made for this world.
My experience of autism has made me feel more at one with myself, whereas my experience of narcolepsy has left me fragmented, separating my mind from my body, and my mind is organized as poorly as dreams. My autistic brain can’t stand it, and the push and pull makes me feel insane.
I believe autism is an identity because autism is a form of life, making it better and worse in different ways than allistics experience it. I believe narcolepsy is a disorder, something people have, because in its raw form, it primarily makes life worse.