Introduction

In the early years of the 21st century, Ian Hacking wrote a series of essays on the theme of autistic subjectivity. These eclectic, occasional essays were, he later told Andrew Lakoff, a final phase of his decades-long “making up people” project. As with other phases of this research, which dated back to the 1980s, and which included works on multiple personality disorder, fugue states, dissociation, sexual orientation, and race, Hacking’s interest in autism aimed at exploring the “ways in which classifications affect people” and how, in turn, “people…affect the ways they are classified” (2007). Hacking has labeled this process the “looping effect of human kinds” an analytic which emphasizes the dynamic, circular social causality that it seeks to name.

In his autism essays, Hacking surveyed a diverse range of texts, from autistic autobiographies, to fictional narratives about autism, like the bestselling The Curious Incident of the Dog in the Night-Time (2003), to blog and chat room postings, to hyperbolic scientific journalism. Through these essays, Hacking attempted to understand autism not only (or even especially) as a clinical, or diagnostic classification, but in a “deliberately ill-informed way,” to appreciate how such texts are creating a “public understanding of autism” (2009, 1468). For Hacking, autistic autobiographies in particular constitute a new, “multimedia” genre and “are not just stories or histories, describing a given reality. They are creating the language in which to describe the experience of autism, and hence helping to forge the concepts in which to think autism” (2009, 1467).

The autistic memoir presents an exemplary space to observe how autism itself is transforming (subjectively and diagnostically) through the “looping effect” he has adumbrated throughout his oeuvre. Or, to use Hacking’s own favored terminology, autistic autobiographies allow us to track this ever more expansively spectral “moving target,” one that, as the historian of science Steven Shapin recently argued “has been stretched to the breaking point, and…now sits astride a social fault line between what’s considered normal and what’s pathological, what’s an eccentricity and what’s in need of expert therapy.” Autistic memoirs, Hacking prophetically intimated in a 2009 article, might even portend a rupture between researchers and clinicians who have sought to anchor autism as a diagnostic instrument and those who have come to live under its protean sign.

Focusing on four autistic autobiographers, Temple Grandin, Tito Mukhopadhyay, Donna Williams, and Daniel Tammet, Hacking’s essay on autistic autobiographies questions why these texts have been promoted (through introductions, blurbs, and reviews by clinicians such as Bernard Rimland and Oliver Sacks) as offering an “inside” view of autism and whether such “access” truly characterizes what the narratives themselves offer. Rather than going “inside,” Hacking suggests that these narratives are creating an evolving discursive space for the figure of the autistic subject, one that moves away from earlier clichés of insulated, self-absorbed eccentricity. Hacking mentions that while these autobiographies focus on social impairments and “eccentric” behaviors, each author also gives expression to a hypersensitive experience of the sensory world. Offhandedly, Hacking also notes an abyss between the world of autism as confidently asserted by Uta Firth and her students (including Simon Baron-Cohen, Tony Attwood, and Francesca Happé), for whom autism is a “social impairment,” or as Baron-Cohen has often suggested, via recourse to questionably mixed electronic metaphors, faulty wiring in the “empathy circuit,” and what autistic people themselves have said.

Anlor Davin’s Being Seen: A Memoir of an Autistic Mother, Immigrant, and Zen Student (2016), offers a new and marvelously rich addition to the genre of autism autobiographies. Elegantly rendered in crisp and often poetic, even lush prose, Davin’s text threatens to demolish, once and for all, the myth that the “autistic mind” is incapable of metaphor, humor, or psychological insight. Discussing sexuality, spirituality, immigration, extreme poverty, and parenthood, Davin’s text renders vivid many aspects of the experiences that have yet to be included in the growing corpus of the autistic autobiographies. Though Olga Bogdashina’s recent Autism and Spirituality: Psyche, Self and Spirit in People on the Autism Spectrum (2013) forcefully argued against the popular (and often clinical) belief that autistic people (in their putative literalness) could not have spiritual lives, Davin’s book gives a minute account of spiritual life and its relationship to autistic perception. It also emphasizes the centrality of hypersensitivity to her condition, something which recent research in neuroscience is beginning to address more systematically.

Pioneering work by Henry and Kamila Markram, recent studies by Mayada Elsabbagh of McGill’s Psychiatry Department, as well as the recent work of MIT cognitive scientist Guoping Feng, have all questioned whether autism spectrum disorders should be considered primarily “social” disabilities in the first place. Following on the work of the Markrams, and their notion of an”intense world syndrome,” as well as Bogdashina’s seminal Sensory Perceptual Issues in Autism and Asperger’s Syndrome (2003), basic science researchers like Elsabbagh and Feng have begun to suggest that autism spectrum disorders might originate in sensory processing issues and that “social” impairments might be consequent to these issues not causal of them. Such a turn within neuroscience portends a move away from “theory of mind” (and notions like Baron-Cohen’s deeply troubling “broken empathy circuit”). And yet as Hacking suggested nearly a decade ago, autistic autobiographers have long been emphasizing the centrality of sensory perception to their “condition.” So it is hardly such neuroscientists, however novel their approaches, who can claim credit for such “discoveries.”

Davin’s beautiful new work offers a rich account of this sensitivity and its relation to her newfound identity as an autistic adulthood. The following interview explores many aspects of her book and discusses another oft-ignored aspect of autistic experience, namely economic precarity. This conversation took place near Davin’s home in Fairfax, California in April of 2016.

Interview

David: Can you tell me a little bit about the writing of this book? What was the process like for you? What originally motivated you to write this book?

Anlor: Well, I started to write the book seven years ago and when I started I was not yet formally diagnosed. I was really in bad shape to be honest. So I started by verbally, well, I mean handwriting it. Because I could not go out in public at all at the time, since I would get so overwhelmed. So the only thing I could do at the time was go far, as far as possible in the hills by myself. I went slowly and far in the hills around where I lived. So I started romantically to write some stuff up there that way.

David: And did you know you wanted to write a memoir or autobiography at that time?

Anlor: Did I know that what would come out of it would be a memoir? I did, I think. You know, I did. Yeah. I guess that was always was my intent. I mean, I did not know what shape it would take, but, yeah. Because I was always wanting to explain to people what was happening with me, but I could not explain at all, because, at that time, I was not formally diagnosed. It was like ‘this woman is a little crazy there’ but what’s going on? So I was already thinking of explaining even then, because I’m not crazy, I knew I wasn’t crazy.

David: But were you yourself already starting to identify yourself as autistic, even before the diagnosis?

Anlor: That is true, that is true because actually you are right. Because I was formally diagnosed six years ago and two years before I started to, yes, to put it together, and think in terms of autism, even before the diagnosis.

David: Can you talk a little bit about the diagnosis process? It really only comes in at the end of your book.

Anlor: Well, it’s a long story how it happened. But much further back I had this Zen practice, that I started 15 years ago and that really, really helped my mind to clarify. Slowly. With Zen, it’s like bringing things back on track, bit by bit, and at one point, that one year where I was able to work full time I had health insurance for the first time, I had some resources. And really my Zen practice, meditation, at some point made it clear to me that it was impossible that I was the only person who was uncomfortable and struggling in this way. With meditation, it became impossible to me that there was no illness with me. That it did not exist, which is what I was told every time I talked to someone before that. You know, “you’re fine” and all that stuff. So I went to see one doctor, who did not figure it out, who gave me plenty of tests and who was like totally impressed by my low blood pressure, or whatever, “really good job” and all that, he told me. So at the time too I was in San Francisco when this happened. And the noise was overwhelming, everything was overwhelming, the smells too. So I was trying, beginning to move as much as possible from the noise because of these sensory issues. I still had to earn money and I still had my son, so I could not move that far from something I could get to for work, but I went basically as far as possible, like the last stop before the bus stops in Marin. You know, the bus terminal. I moved to the country because the noise was too much…

David: We’ve talked a bit about Temple Grandin in the past. Had you read her memoir, Emergence, or others like John Elder Robison’s Look Me in the Eye?

Anlor: Well what happened was once I went to welfare, there was another person who did not believe me either. But when they saw me faint eventually, they, how do you say, “smelled a rat”? and decided to stay with me and look into things more deeply. And so they stayed with me, and took me to the traditional medical clinic. One time at the traditional medical clinic I saw another person, who wanted to pass me off, but my suspicion is that because my case worker was there with me, she listened to my pressured speech and my “crazy” behavior and all of that and heard me repeatedly talk about sensory problems, you see, and that, at that point really told her, maybe you should check into this autism spectrum and into Asperger’s. And that was it, my case worker left like two weeks later and I never heard from her again, I can’t even remember her name, but I started to read everything I could put my hands on. So I went to the public library in Fairfax and I found Temple Grandin, William Stillman, Liane Willey, Pretending to Be Normal, Thinking in Pictures, and Roy Grinker’s Unstrange Minds. What seems to me what happens is an autistic person is they go through finding out, like me, like others, finding out what’s going on, becoming sort of obsessed with it, then moving on to your path. My path is autism and Zen. So I’m not really ready to get away from it yet, autism that is. I want to bring my Zen practice to autism. That’s like my dream.

David: Why do you organize the book through Generalized Adaptation Syndrome (GAS)? Especially since it is a book about autism? Each section begins with a stage of GAS rather than, for instance, an element of a particular definition of autism.

Anlor: Honestly, that came at the last moment. I read about this GAS, and I thought this is totally me. So this was totally at the last part of writing the book. I happened to organize my life through the phases of a stress process. I just totally related to it. So much so that I decided I would put this in my book, to frame it.

David: How do these dueling diagnoses help make sense of your experience?

Anlor: The first part of my life was stage 1 of stress, where there is cortisol manufactured. And then the second part is the part where that stress is still there, but it is latent. Then the third part is it comes back big time to hurt. It’s like the three acts too.

David: In the early part of your book you talk a lot about the distinction between anxiety and nervousness. And you talk about this in relation to Temple Grandin, who has said that autistic people live with constant anxiety. You say that might be true to some extent, but that you think a better way of describing that experience is through the language of nervousness.

Anlor: Well, I read this book where I learned more about the nervous system, about it being a primal reptilian brain. I mean, I’m not a neuroscientist, but nervousness is a very primal, basic thing. And I feel like anxiety is this thing you either have or don’t. People say you can change anxiety, like it’s a symptom. But if you are nervous, the nervous system doesn’t really change. If that is a primal thing, your nervous system is you, and you’re nervous! That’s what I meant to say. Does that make sense?

David: Almost like nervousness is a way of being in the world, whereas anxiety, as a pathological state, is something to be treated or remedied?

Anlor: Yes, anxiety is something added, that one can…work on, maybe. Nervousness is not something that you really overcome. I mean that’s one of the first things I got when I went to Green Gulch [Zen retreat center outside SF]. The first few weeks there, when I was mediating all the time, that’s what I learned.

David: I’m really interested in this distinction, because of the way nervousness avoids the pathological connotations of anxiety.

Anlor: I mean I don’t really even know what pathology is to be honest. I mean, it’s the same word in French, pathologique. Forgive me, I don’t know what it really is. I’m sorry I don’t feel like this nervousness is something to take care of or get rid of, I don’t feel like it is an illness. It’s not anxiety.

David: We’ve talked a bit about your sensory issues and your Zen practice. Both are major themes of your book. In fact, the sensory issues are in a way much more prominent than “social” issues or difficulties, which are far more prominent in many of the autistic memoirs out there.

Anlor: My path is autism and Zen. So I’m not really ready to get away from it. I want to bring my Zen practice to autism. That’s like my dream, but that doesn’t mean I will stop being autistic through Zen at some point.

David: What would bringing your Zen practice to autism look like then?

Anlor: Once a year my partner, who is also on the spectrum, and I organize a meditation retreat, Autsit. My partner is big into computers, so everything goes on there. So we have a site called Autsit.net. It’s beautiful thing, it’s a beautiful location. It’s really special. And everyone who comes to sit is on the spectrum. But sensory stuff…

David: This is speculative on my part, but I question what a social deficit really is. It doesn’t exactly resonate with my fieldwork that autistic people are fundamentally asocial. Though the sensory stuff is pretty consistent.

Anlor: Well that’s exactly what I was trying to tell you. But that’s what Temple Grandin also says. She has much better wording than me, but she thinks that a lot of the behaviors of autism might be the result of sensory issues and that’s how I feel. Maybe it’s not the entire story, of course…

David: But it seems like it’s a much more significant part of the story than the standard definition of autism. If you open up any kind of Introduction to Autism or Wikipedia or even the DSM, the definition of autism always begins with the so-called triad of autistic impairments, the first of which is “deficits in social functioning,” followed by communicative difficulties and perseveration. But the sensory piece is at the margins, it doesn’t fit the definition. Yet, that’s pretty much the first thing anybody on the spectrum will tell you about. And the idea that autistic people fundamentally lack empathy, well that’s just…

Anlor: Well no, not at all, that’s not right. I’m sorry to say, but do I look crazy to you? Do I look non-empathic? Or whatever the whole autistic stereotype is. But see, this is why, so many people who actually are autistic can’t imagine they are. Because of all these stereotypes. They are in the way. Can you imagine? All these stereotypes? If I am empathetic I can’t be autistic, but…

David: In popular culture and in the work of researchers like Simon Baron-Cohen or Tony Attwood, there is a very fixed picture of what autism looks like; the robotic, emotionally vacant person. There are clearly social issues with autism, but is it really possible to be missing an “empathy circuit” whatever that could possibly mean?

Anlor: I don’t understand that all either. I’m so happy that you realize that sensory issues are a lot of it. It’s a lot of the story. I mean the whole world is based on sensory stuff. And then, with autism, it’s like you don’t have proper filters. So everything comes in. It’s like one metaphor, what can we do but metaphors to try to talk about things, forgive me, but to me autism is like a door that is broken. It started in Zen practice for me, then I realized the door is broken, the hinge to the door is broken, so all the stuff, the sensory stuff comes in. So the stuff that comes in can make me pretty ill. Imagine it’s like bad weather coming in all the time?

David: So is the detail of your sensory experience, this broken door, the overall theme of your book?

Anlor: Well there’s the Zen practice, because that is really what informs a lot of my book. So, that pervades the whole book, so that is really a huge big difference between this book and some others that are out. Some people, and I got into that rut myself, the life story is about blame. Blame the other. By now, I’m like, this is the hand that was dealt to me and I have to make the best of it. That blaming business. It’s other people’s fault and it’s true that the way other people interact with you will bring you to interact the way you do, but deep down it’s us, it’s me. So the book is about sensory stuff, but it’s also about dealing with difficult stuff without making it about blame.

David: On that note, I was struck reading your book by how generous you are with your mother, how sympathetic you are to her. You give your readers enough of a sense of her, that she wasn’t necessarily the most compassionate or understanding caregiver, given your sensitivities. She didn’t have a lot of patience. You only allude to it, but you give us a sense that she was saying mean, critical, maybe even abusive things to you on a regular basis – calling you a drama queen and all that.

Anlor: I’m so happy to hear you say that, because I didn’t want it to be about blame. Especially with her, but yes, it was not the easiest relationship for either of us.

David: There are quite a few memoirs, not only autistic ones, where there is a kind of foil, whether it is society for not being able to accept autistic quirks, or however you want to phrase it, or parents who are unable to understand their children…but your book touches on that pain without recourse to…

Anlor: Well, again, that was my whole point in the book! It was a major thing for me. I did not want to blame too much?

David: So what’s the balance between expressing pain, your pain, and not blocking that, but not focusing on fault? Your book really navigates that beautifully.

Anlor: Well, now, yes. But you know, parents and autistic children. That’s a really, really tough one. And a different story.

David: Within the “autism community,” and I’m really using scare quotations here with emphasis, there has been a lot of conflict between the so-called parent “side” and “self-advocates”.

Anlor: A lot of parents of children see us adults and they don’t know how we can be autistic, they don’t think we are autistic. Listen, I’ve learned more and more, David, that I should trust people who are looking or acting somewhat autistic, trust that they are autistic, not be suspicious. It’s just like me. I do look – at times I might look more ‘put together.’ But it’s trusting that there are different ways of being ‘put together.’ I’m constantly floored by how people who look “off their rockers” are actually not crazy at all. They do things differently. They do great things differently.

David: One of the things your book discusses at length is the economic precariousness of being an autistic adult. Can you talk a little bit about this and how it comes up in Being Seen?

Anlor: I think that probably 95% of the autistic population is broke. I mean, really broke. Maybe there are a few that make it. Would you say I made it? It looks to many people like I did, but it is not true at all. Economically, it is terrible, my situation. When you meet an autistic person, remember that their financial situation is likely to be terrible. Because this is really a big thing…you can’t do anything when you don’t have the money to do it. You can’t get proper healthcare, you can’t get proper housing, you can’t get those basic survival things, and I feel like I really have a lot to say kind of about this because when you look at my job history in my life, which I really detail at length in Being Seen, it is extremely spotty and erratic. Not that I was ever fired but I never had any job that lasted maximum more than about a year and half before problems came up.

David: Although you talk about that Jenny Craig job that…

Anlor: Oh yes. But that was not for more than a year and a half either. And it is not like I get really fired, mostly I get fed up for some reason. I think I get too much sensory overload and I have to leave. I always end up leaving. I quit like this, and I think that many autistic people quit like this, because there is too much sensory stuff and we can’t handle it. I mean we feel so bad about other things than what people know about, we feel bad probably about sensory things or we are so vulnerable we take thing so personally, that broken door that I was telling to you about, and it seems to me when I look at my job history that either they found reasons to, not fire me but get rid of me when I was a teacher, you know after a year, or it is me that left, that could not take it anymore. The way I felt too many rules, too many impositions…but anyway financially that means it is terrible. I mean a big part of it I can tell you David was that a big part of getting better was getting better financially, really huge, I should never forget to say this, this is huge, this is number one. Meaning that when I was….actually before I was even formally diagnosed, thanks to the Welfare department at Calbranch, they helped me to get SS and then getting disability. Without disability, I couldn’t live. SSI.

David: SSI, not very much money is it?

Anlor: No, it is not. Now I have both SSD and SSI, so that’s like $900 total per month. I can survive with that.

David: So how do you experience living in a place like Marin and the SF Bay where there is such wealth and where people are so glibly saying, oh, you know, the tech industry, everyone is autistic in the tech industry. Silicon Valley is the city that autism built, and all that “happy aspie” business. When people make these kind of very glib associations with that industry…

Anlor: What can you say? I listen to them with a little bit if a “yeah,” how many autistic people do you know? I mean, really. It’s not billionaires, it’s…

David: Yeah, well it seems like you and most of the autistic people I know are living in…

Anlor: Poverty. You can say it. They’re below the line.

David: You are living below the poverty line. So what about this tech and SF and autism stuff that flies around?

Anlor: I don’t think SF is especially autistic.

David: No, no, no I am not saying it is. But people make these sort of cliché comments. Do you know what I am saying?

Anlor: Of course, I see what you are saying. Especially the Silicon Valley part. I am not saying I agree with any of this. But what can you do really?

David: There is not an awareness of how much autism and poverty are intertwined. And this is another aspect of your book that is so important, you talk about the precariousness of your economic situation.

Anlor: And you know nowadays when I meet autistic adults, even if they don’t tell, they are always in a precarious economic situation, even if they don’t tell. And later I always find out that this is true, always terrible economically. Never assume that an autistic person has the money to even pay bus fare or for a cup of coffee or something like that.

David: Thanks so much for taking the time to talk about your wonderful new book.

Anlor: Hey, it’s my pleasure.

 

David Platzer is a PhD candidate in the Anthropology Department at Johns Hopkins. He is currently conducting ethnographic fieldwork on communities of autistic adults in the SF Bay area.

 

Works Cited

Barak, B., & Feng, G. (2016). Neurobiology of social behavior abnormalities in autism and Williams syndrome. Nature Neuroscience, 19(6), 647-655.

Bogdashina, O. (2003). Sensory perceptual issues in autism and Asperger Syndrome: different sensory experiences, different perceptual worlds. London: Jessica Kingsley. 

Elsabbagh, M., & Johnson, M. H. (2016). Autism and the Social Brain: The First-Year Puzzle. Biological psychiatry.

Hacking, I.(2007). Kinds of People: Moving Targets. Proceedings of the British Academy 151: 285-318

Hacking, I. (2009). Autistic autobiography. Philosophical Transactions of the Royal Society 364:1522: 1467-1473.

Markram, H. and Markram K. Interview: Henry And Kamila Markram About The Intense World Theory For Autism. Wrong Planet http://wrongplanet.net/interview-henry-and-kamila-markram-about-the-intense-world-theory-for-autism/

Shapin, S. (2016). Seeing the Spectrum. The New Yorker; http://www.newyorker.com/magazine/2016/01/25/seeing-the-spectrum