Interview by M. Kelter
Anlor Davin is the author of the upcoming memoir, Being Seen. In her book, she describes lifelong struggles with "sensory chaos" and social pragmatics, all of which culminated in an adulthood diagnosis of autism. She was raised in France, but later immigrated to the United States. We recently spoke via email about these experiences, and her thoughts on navigating life on the spectrum.
M: I hear from many adults who suspect they are autistic, but grew up before spectrum diagnoses were available. They often ask if looking into the possibility of a diagnosis is something they should do, or if it is something they should avoid, since they've "made it that far" without one. I wonder if you could address those questions. What did the diagnosis mean for you, in terms of your quality of life? Were there any downsides?
[image: portrait of a white woman with
short curly salt-and-pepper hair.]
Anlor: I have a two-part answer here:. It seems to me that whether to be diagnosed or not as an adult (or even as a young adult) has a lot to do with money -- like so many things in life.
What I mean is that once an individual has a formal autism diagnosis, it may become even more difficult to find a job. Imagine telling the person who interviews you for a job that you are autistic: Immediately the person will probably make negative and wildly incorrect assumptions about you and your possible deficiencies with respect to the job. It is true that the stigma of autism is lessening with each day, but autism is still very misunderstood and is often seen in a negative way -- even by doctors who are far too often ill-equipped [to make such judgments], though they usually feel themselves to be knowledgeable. Even if you do not reveal your autism diagnosis during an interview, employers are likely to discover the truth, as the Internet is every day getting more personal about such information.
On the other hand, having a formal diagnosis helped me start living again. After my diagnosis, I started to receive proper care, not only in the form of proper medical treatment (a true life-saver for me) but also when I started to receive financial support through Social Security Disability. I was also able to receive financial support to address the painful and physical problem caused by nerve damage. All this help came because of my diagnosis.
M: One of the recurring themes in your book is a struggle to create lasting friendships. As you describe, they generally start well, but eventually sour. I've noticed this in my own life as well. I was curious if you've been able to piece together why this happens. Sometimes, when I am meeting people, I make the mistake of trying to mask my social/sensory differences. I wonder if friends drift away because, as they get to know me over time, I'm just not the person they initially thought I was.
Anlor: Before going further into this, I want to say that presently this is no longer such a problem for me -- a fact that I completely attribute to my Zen practice: I have learned to be less abrupt, to make comments that appease the flames of fear that differences can bring up. The word “sour” is a very good word to describe the difficulty. I think that fear is at the root of this eventual “souring” of friendships, as we all have expectations about one another and when these are not met then fear unconsciously starts to sour relationships: As you say, “I am not the person they initially thought I was.”
M: You grew up in France, but moved to the states as a young adult. Do you find that being autistic makes life as an immigrant more or less difficult? I've never moved to another country, but when I travel outside of the states, I often feel more at home in places where I am not expected to know the language and customs. You've had much more intense experiences in this regard, so I was curious about your sense of this.
Anlor: There are two sides to it: on one hand, and as you say, when one comes from another country others see your differences as being the result of your foreign origin and so fear is less likely to arise ... at first. When people live with you longer, however, they start to see the differences more in-depth, and as in any relationship the relationship can sour over time.
Also, the United States is often described as a melting pot, and because of this mixing differences are often accepted as normal. People come from so many different countries and cultures here that is almost a “momentum” to accept each another in order to live together. The situation is far from perfect, but compared with the feeling of stagnation in some countries (for example, I am afraid to say, in the provincial France of my youth). In this connection I definitely can feel a difference here. On the other hand, being autistic also makes life as an immigrant more difficult, at least it did for me because it meant I was all alone with the difficulty (I came to the US alone) and I had no support from family or friends.
M: Throughout your book, you describe battles with sensory issues. Eventually, you begin to put effort into shielding your senses as needed, even though these efforts can clash the surrounding social context. For example, people can react negativity to folks who wear sunglasses inside or noise-cancelling headphones in public spaces. For people who are struggling to balance sensory pain and social stigma, what is your advice?
Anlor: Let me be honest here: due to my extreme vulnerability in the face of the aggressive verbal assaults (yes, words DO hurt!) I did not start to wear the protective gear until I was absolutely forced to ... it was a terrible fight for me. But eventually I just had no choice, it was that, or dying. The pain in my shoulder just became unbearable, and this pain was very much linked to when my senses were assaulted, which happened pretty much whenever I stepped outside my door ... and sometimes also inside my apartment.
Plus I was older, and I had already started to practice Zen, so I was able to consciously tell myself “too bad if others don’t like or understand it.” I feel bad for children with this problem: remember how when you were a teenager all you wanted was to conform? That has been shown to be a rather normal phase in the development, so of course few of us are going to want to look different. When I am given a negative and hurtful comment, I soothe myself by thinking how I am the pioneer for future generations: I hope that soon enough autistic people’s accommodations in the forms of ear, smell, and light protective gear will be perceived to be just as “normal” as a blind person’s cane.
M: For reasons I can't articulate, I've found Zen Buddhism to have a strong resonance with my sense of the world, and my confusion about social life and even basic facets of perception. I've just always felt a connection between autistic experiences and the way reality is sort of playfully disassembled in Zen thinking. I'm very much a casual reader of these things, not a student, so I may be forcing connections that don't exist. Your book includes descriptions of beginning to practice Zen: I was wondering if, for you, there has been any interplay between Buddhism and life on the spectrum.
Anlor: Talking about Zen is always tricky, as words simply can’t explain it. A common metaphor is that Zen is like a recipe that is useless and meaningless until one follows it. That said, it is true that Zen “sits well” with autism. I felt this palpably at first when little Zen groups were the only places I could go in public when sensory problems overwhelmed me. That is, the groups were for me the only somewhat-safe environments with sufficiently little noise, light, smells, and so on.
In practicing Zen the idea of non-aggressive behavior is important, and as a result people who practice it generally start to pay attention to each other more. The more they practice Zen, the less they usually are, in my words, “sensory aggressive,” and they come to hence avoid slamming doors, wearing perfume, constantly shining lights, and so on. Nowadays I feel that the “paying attention” that is at the core of Zen practice actually brings a special feeling of well-being to everyone in their own way, not just to me as an autistic person.
You can learn more about Anlor Davin and details about her memoir Being Seen, at her website.