Am I autistic?
I don't feel it. I know, own and am glad I am neurodiverse. And I know there are a lot of features of my neurodiversity and how I manage it (or don't) that overlap with autism.
But autistic?
I did the two questionnaires in the self-referral paper then scored them, so I know I score as autistic in terms of those diagnostic tools. But does that make me autistic?
Other people have dropped hints, from the psychiatrist friend who, when I showed her a brain scan and said they'd commented on the size of my amygdala casually mentioned that this was common in autism, to the autistic researchers who just smiled knowingly when I said I wasn't autistic.
Autism would provide a more than adequate alternative narrative to the one I currently use to explain some of my childhood and adult experiences.
But there are other labels that I feel are more accurate.
So why use 'autistic' as a shorthand if I didn't own it? Simple. It's better understood, less feared and more likely to result in the accommodations I need than any of the other other labels that I might feel are more accurate.
Here's what happened that made me worry: I used the label at the Apple Genius bar as a short-hand for what I needed, because my peculiarities mean that treating me as if autistic in that situation would mean I was able to function without meltdown. And I felt fairly secure in assuming that anyone working in the Apple Genius bar would have a fair understanding of how to switch the interaction to an 'Aspie-friendly' one. I was right. If anything, I think my geek was relieved to be able to interact in his own culture rather than work to interact in his learned, neurotypical, cultural style.
But it felt like cultural appropriation. If I do not consider myself autistic, what I had just done was to adopt aspects of the culture because it suited my purposes, because I felt like it, and without consideration for those who do own the label or who are assigned it by others. And that is at the heart of cultural appropriation.
Of course, this presupposes that Autistic is a culture, like Deaf is a culture. And to me the d/Deaf debate works just as well for a/Autistic. If you aren't familiar with the debate, 'little d' is a hearing impairment, 'D' is a culture with its own language. For me, neurodiversity speaks of cultural difference, not impairment of the mind/brain.
Cultures are funny things. Culturally I fit with the neurodiverse autistic sub-culture in a way that I don't fit with any of the mainstream sub-cultures. I can relax and be understood better. I discovered that the first time I encountered the neurodiversity stream at a disability conference. So in what sense am I appropriating someone else's culture?
- Because cultures and sub-cultures have names. And although culturally I may feel at home in one place, does that entitle me to use the name of that culture when I do not own that as my identity? As a White woman, I might feel more culturally at home in a Black culture - but that does not make me Black. Similarly, feeling culturally at home in an Autistic culture does not make me Autistic.
- Because, philosophically, what is a culture but a decision to draw the line in one place rather than another to create groupings and categories of people? Unless or until I own the label 'autistic' I belong within the grouping of 'neurodiverse' (which, irritatingly for me, is not in common use as a cultural grouping) and I do not belong in the grouping of 'autistic'. Therefore I have no right to claim the accommodations that come with 'being autistic'. That does begin a whole separate argument about whether autistic is a sub-set of neurodiverse, or whether the two are more of a Venn diagram of overlapping categories, but I'm not going there with this blog post!
I faced an academic situation where, as I have no label, we couldn't be adults and accommodate each other appropriately. Cue trip to the university mental health advisor for a personal learning support plan and the tentative suggestion that in the future an official label of some sort might be a useful short-hand that would get me the understanding I need from others. Of the labels I might be able to acquire, 'a/Autistic' would be my preferred label. This time I got as far as filling out self-assessment paperwork for an Integrated Autism Service. The questionnaires didn't make me question who I am; I already know I have sufficient features overlapping with autism that ticking the boxes honestly would yield a 'yep, she's autistic' score. Answering the discursive questions was a different matter. I answered them honestly, and in the answering of them I realised how much more adequately the autistic narrative made sense of my life than the narrative and labels I have been using.
Have you seen any of the episodes of Doctor Who that involve a Time Lord hidden so deep under cover that they have hidden themself from themself? And then there is that painful and empowering point of becoming self-aware. Perhaps that is me. Or perhaps it is not.
Until I have resolved to my own satisfaction whether I belong or am appropriating the cultural label, I will continue using my compromise when explaining myself when I need to: "I might as well be Autistic".
