A Complicated Conversation About Neurodiversity

Yesterday Corinne Duyvis (author of OTHERBOUND) tweeted about an interview with the author of a book featuring an autistic protagonist. Corinne had a powerful and clearly painful reaction to the following statement (among others):

“High-functioning autistics and Aspergers also interest me, because they challenge our definitions of what constitutes a human being…”

It seems pretty clear why Corinne responded to that quote with such force. The idea that people with autism spectrum disorder don’t automatically qualify as human beings is repellent. I read Corinne’s tweets, which expressed her usual depth of emotional self-knowledge and intellectual clarity, and saw that she was having a contentious exchange with someone I don’t know. Her combatant was responding to Corinne’s tweets with statements like “this is how it works,” “you can’t expect people to be telepathic,” and “…their interpretation of (blogs, memoirs, and non-book writings) aren’t always going to go the way you want.” She was responding to Corinne in very contradictory fashion, and I decided to engage with her as well.

We had a fairly animated exchange, which I tried to engage in as I usually do – try to acknowledge what the other person is saying, keep focus on the topic at hand, and make pointed, direct comments about the actual verbiage being used. And partway through the conversation this person revealed that she has Asperger’s syndrome. It wasn’t a complete surprise – she’d hinted at it earlier in the exchange – but it nevertheless caused me to abruptly skid to a halt and entertain a flurry of questions. How does this change the conversation? Does it change my understanding of her comments? Should I just stop talking altogether? Does this automatically mean her comments have more validity than mine? What’s the right thing to do here??

(A note: I’m going to stop using the term “Asperger’s” and rely solely on “autism spectrum disorder” from here on, only because its elimination from the DSM-V has informed so many of the in-person conversations I’ve been having about it.)

I’ve been involved with We Need Diverse Books since its inception, and during the organization’s incredibly eventful first year I’ve spent a lot of time thinking about how to engage in the complex discussions about diversity, and my slowly-evolving philosophy was and remains built on the idea that imperfection is no more avoidable in the arena of diversity than it is in life as a whole, and that mistakes, which will inevitably be made, are avenues to engage in dialogue, practice accountability, and provoke change. So I chose to continue debating the interview in question, despite the fact that doing so with a person who has autism spectrum disorder felt like a potentially huge mistake.

We exchanged more remarks, and I experienced a familiar kind of exasperation: I felt that my debate partner was being evasive with her comments, leaving herself room to question my thoughts without articulating her own in a committed way. She was saying things about her experience as a person with autism spectrum disorder that I hadn’t directly discussed with anyone before, including what seemed like genuinely vulnerable statements about her struggle to understand perceptions of her, both her own and those of others – it seemed like a clear learning opportunity for me. At the same time, I grew increasingly convinced that she was presenting difficult, painful experiences of her own as reasons to invalidate the difficult, painful experience Corinne was communicating about, and I said so. In the process of saying so I gave her my interpretation of her comments and asked her to clarify them.

At that point my debate partner grew agitated and angry. She accused me of putting words in her mouth; she became very, very sarcastic; and she told me I should go ahead and make something up to explain her statements, since I was doing so already. I confess that I didn’t find it terribly enjoyable, and it was perplexing that the openness of interpretation she defended in dehumanizing statements about autistic people was not applied to my statements, but I also found myself wondering if she was right. Was I actually doing those things?

I partly continued this really quite uncomfortable debate because she talked about not knowing if and when outside perceptions that contradicted her self-perception might be true. That really struck a chord with me, and when she started leveling these accusations at me, I went to that place with no effort at all. Is she right? Am I exercising a kind of unearned privilege that I’m not even aware of? Am I SILENCING her?

I felt and still feel pretty sure that I wasn’t. I’ve reached a point where I think I’m able to engage in debate in a relatively nuanced and balanced way, and I think she was resorting to tactics aimed at ending the conversation on terms defined by her, at the expense of actual dialogue. But what if I was wrong? What if I was shirking some kind of responsibility that I didn’t even know existed? I certainly wouldn’t be the first person to do that, and it occurred to me that ending the conversation on that note would not result in any more insight or understanding on my part.

So, I told myself that I had a choice. I could provide a rebuttal to her aggression, protect myself, and hear no more from her, or I could take a step back, silently deflect her aggression within the space of my own mind, and ask to hear more, despite my conviction that she was mischaracterizing my statements.

I chose the latter. I asked her if she’d read the review Corinne was referencing, and if so, what her reaction to it was. She was unconvinced of my sincerity, so I promised not to respond to any further explanations she might give, other than to say “thank you for sharing your thoughts” (which I did say). I wasn’t terribly optimistic that answers with more clarity were forthcoming, and when my debate partner did respond, she didn’t provide direct answers to my questions. She did respond, however, with two tweets, and the first one did indeed refer to the interview in a way that communicated new information to me.

She said “I know that as an Aspie I have in the past given people a reason to wonder about my humanity.”

I can’t lie, I’d been feeling very irritated by this person, but this statement struck another, entirely different chord in me. Not “In the past people have wondered about my humanity,” or “I have in the past been told there are reasons to wonder about my humanity.” No, she unambiguously took full responsibility for the perceptions of others. “I have in the past given people a reason to wonder about my humanity.” This woman actually believes there’s legitimate reason to question the humanity of people with autism spectrum disorder, and the moment when I realized that was what she’d said was a moment of ineffable sadness.

The degree of fully internalized self-loathing in her statement is shattering, and I felt more compassion for her than I expected. What had this person experienced that would provoke her to hold such a self-hating, self-diminishing belief? The obvious answer is that she lives in a society which communicates that message to her on an endless, unavoidable loop. She’s wrong, of course – the presence of autism spectrum disorder simply is not a reason to question anyone’s humanity. Not only is her lack of complete belief in her own humanity wrong, I also think it’s more than a little dangerous, because I have no doubt that such a belief, publicly stated, could serve as an arrow in the quiver of disability rights opponents out in the world.

Her belief that it sometimes might be valid to question the humanity of people on the spectrum isn’t one that I can ever stand behind, in any way. Nevertheless, I felt compassion, and also a kind of understanding. I’ve never been screened for or diagnosed with autism spectrum disorder, but self-loathing rooted in issues of self-perception is not unfamiliar to me. I’ve written at some length about my struggles with racial and ethnic identity, and I know what it’s like to question my own value as a person.

I’m thoroughly unschooled in the politics of neurodiversity. I’m trying to find my footing in that realm, partly because I strongly suspect that I’m neurodivergent myself, but I’ve never engaged in this kind of public discourse before. I don’t know how wrong or right any of what I said to this person might have been, and I don’t know what factors I could or should have taken into account. I know that my debate partner was having a strongly negative reaction to my words, but I don’t know who else might have had strong reactions, negative or positive, and what the emotional and intellectual underpinnings of those reactions might have been.

I didn’t lend a huge amount of credence to my debate partner’s accusations that I was simply fabricating opinions on her behalf, but another philosophical touchstone that I’ve been holding on to is the idea that we all need to take accusations of bias, privilege, and silencing behavior with as much seriousness as possible. I tried to do that; it was hard, and I don’t know if I succeeded. I don’t know what kinds of bias and privilege I brought to the table in this situation; I suspect there was more than one. I couldn’t help wondering if anything I said was at the expense of somebody with a stake in the overall dialogue. I want to continue talking, though. I want to keep learning. There is so, so much to learn.


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