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essay

Me and my nervous system against the world

Content warning: This post contains a discussion of police brutality 

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I have recently learned that I am autistic. For me, this word – autistic – provides an explanation for a lifetime of confusion about the mismatch between my and others’ perceptions of the world. I am aware, however, that there is profound misunderstanding about autism, so I wrote this piece hoping to help others understand how I see it. 

A useful starting point is the idea of “misrecognition”. I believe this concept helps to understand one of the key frustrations in many autistic people’s lives. Philosopher José Medina explains misrecognition by exploring our collective failure to recognize Black people’s victimization at the hands of police. He cites Robert Gooding-Williams’ analysis (paywall) of the jurors in the 1992 trial of the police officers who brutally beat Rodney King, a Black man. The jurors found the officers not guilty of using excessive force against King, despite being shown video evidence of the unarmed man lying on the ground trying to protect himself from the group’s beating. This verdict was interpreted by many Black people, who had seen the widely televised footage of King being beaten, as further evidence of misrecognition and anti-Blackness: their government’s and their neighbors’ inability or refusal to recognize Black humanity. After the verdict was announced, protests and riots erupted across Los Angeles, lasting six days, until military forces intervened. The same misrecognition that made this verdict possible — a failure to accurately perceive Black people’s victimization at the hands of the police — has characterized our response to numerous incidents of police violence in the years since. Footage of police officers killing Black people have been widely circulated, and yet there are many who watch them and find no evidence of police wrong-doing, because their perception of Black people is distorted by anti-Blackness and its ideological association between Blackness and violent crime. 

Building on this, Medina rejects the idea that injustices related to misrecognition can be fixed through merely increasing the amount of representation or exposure. He writes that “When we encounter misrecognition, what is needed is not more recognition but rather a shift in the mode of recognition, a deep transformation of the recognition dynamics so that other forms of recognition can emerge”. Therefore, the struggle for justice for Black people and victims of police brutality is, to a large extent, a struggle to fundamentally shift our understanding of Black people such that, when we see a Black person being brutalized, we are prepared to recognize them as a victim.  

For my purposes here, and with inspiration from Medina, I will define “misrecognition”, as cases of flawed recognition, where a person, group, or topic is not properly understood or perceived as a result of systemic inequity. In this way, I see autistic people as struggling against a form of misrecognition. 

I believe that autistic people are widely misrecognized as socially deficient. Claims about our social deficits, in comparison to our nonautistic peers, are commonplace and often expressed as if they were non-controversial. Indeed, expert accounts of autism often state that the autistic person is impaired in their ability to interact and form relationships with others. For example, The American Psychiatric Association’s (APA) Diagnostic and Statistical Manual, Fifth Edition (DSM-5) describes autism in a way that centers alleged social deficits. According to the DSM-5, autism is characterized by alleged deficits in “social-emotional reciprocity”, “nonverbal communicative behaviors used for social interaction”, and “developing, maintaining, and understanding relationships”. Natalie Engelbrecht, an autistic psychotherapist and naturopathic doctor, rejects the naive view of the DSM-5 as an objective description, writing that “the fact that it describes autism purely in terms of deficits causes many people to misunderstand what autism is”. The misrecognition of autism as social deficit pervades even our scientific understandings of what autism supposedly is. 

To be clear, social interactions and relationships are undoubtedly challenging for me and most (if not all) autistic people. Autistic people acknowledge that we communicate differently from nonautistic others, and many of us would benefit from support related to this, such as therapists who can help us process the trauma of being unable to make ourselves understood to people around us. However, if we are to make the world a less traumatizing place for autistic people, which would be swell, then we will need “a shift” – to use Medina’s words – in how people understand the autistic experience when it is presented to them. 

Damiam Milton’s “double empathy” problem (paywall) is the kind of theoretical tool that can assist with that shift. Catherine Crompton and coauthors explain the double empathy problem in the following way: 

Empathy is defined as the ability to understand or be aware of the feelings, thoughts, and experiences of others. According to the double empathy problem, empathy is a two-way process that depends a lot on our ways of doing things and our expectations from previous social experiences, which can be very different for autistic and non-autistic people. These differences can lead to a breakdown in communication that can be distressing for both autistic and non-autistic people. It might sometimes be difficult for non-autistic parents to understand what their autistic child is feeling, or autistic people might feel frustrated when they cannot effectively communicate their thoughts and feelings to others. In this way, communication barriers between autistic and non-autistic people can make it more difficult for them to connect, share experiences, and empathize with one another.

This idea is enlightening for both sides, autistic and nonautistic people, but it is particularly important for nonautistic people, who are usually not accustomed to needing to empathize with autistic people’s experiences. In contrast, most autistic people’s daily experience, by necessity, involves sincere struggles to empathize with nonautistic people. For us, the stakes of this exercise can be as high as our lives themselves. For example, neurodivergent activists Finn Gardiner, Manuel Díaz, and Lydia X. Z. Brown argue that Black autistic people must contend with the misrecognition of their Blackness and their neurodivergence, a combination that puts them at even greater risk of being misrecognized in lethal ways.

Many autistic people develop extensive knowledge about nonautistic people and use it to camouflage our differences and protect ourselves from the consequences of being misrecognized. Hence, the empathy difficulties may go both ways, but the misrecognition does not. 

Medina writes that “[r]ecognitional shifts require engaging critically and deeply with experiential perspectives” as these help to provide a more complete understanding of others’ experiences. I have come to understand my own internal experience of the world better through “The Intense World Theory” an explanation of autism offered by neuroscientists Kamila and Henry Markram. The theory posits that autism is the result of a person’s nervous system developing in a rapid and specialized way in response to a trigger that occurred before birth (e.g., exposure to valproic acid in utero). Thus, in contrast to others’, the autistic person’s nervous system is characterized by “hyper-perception, hyper-attention, hyper-memory and hyper-emotionality”. The world the autistic person experiences is more “intense” than the world the nonautistic person experiences, even if they are technically the same world. This fundamental and mutually imperceptible difference in our experiences of the world is largely to blame for our difficulties empathizing with one another. 

Markram and Markram provide interpretations of many autistic behaviors that seem to resonate with my own experience in a way that social deficit theories of autism do not. Rhetoric scholar Jordynn Jack observes that other autistic writers have expressed similar sentiments about the Intense World Theory. Here’s a passage from Markram and Markram’s work, which attempts to understand how social interaction might be experienced by an autistic person:

The lack of social interaction in autism may therefore not be because of deficits in the ability to process social and emotional cues, but because a sub-set of cues are overly intense, compulsively attended to, excessively processed and remembered with frightening clarity and intensity. Typical autistic symptoms, such as averted eye gaze, social withdrawal, and lack of communication, may be explained by an initial over-awareness of sensory and social fragments of the environment, which may be so intense, that avoidance is the only refuge. This active avoidance strategy could be triggered at a very early stage in a child’s development and could progress rapidly with each experience manifesting as a regression, which is striking in some cases. With such early over-specialization, many other important elementary certain skills may never be properly developed to enable normal navigation in a socially rich world with an appropriate understanding of social cues and communication.

This passage does two things I think are important. First, it provides a clear explanation for autistic social behaviors that resonate with the way I experience the world. For example, I often find eye contact unpleasant. In stressful situations, it can feel intense, like a Vulcan mind meld. I am well aware that others expect eye contact. I am also well aware that, when I do not make eye contact with them, they often interpret this as a sign of some kind of problem with me: that I lack proper social behavior, or that I have an unpleasant personality. What they’re probably unaware of is that my avoidance of eye contact is connected to my own internal experience of sensory and emotional overwhelm. I’m well aware that I’m in a constant tug-of-war between others’ expectations that I make eye contact with them and the distress it causes me. 

Second, the passage points out how others’ misrecognition of us has cascading effects across our lives, often leading to social isolation, and a corresponding lack of experience and skill navigating the social world. To use myself as an example, I struggle immensely to set boundaries that might protect me from emotional and sensory overwhelm. In part, this stems from my experience of trying – to no avail – to explain the way I experience the world to others, or even to myself, before I had the revelation that I am autistic. For example, I seem to experience a great deal more fear and overwhelm around cars than other people. On occasion, I have experienced physical discomfort, sensory overwhelm, and extreme feelings of being unsafe when riding in cars with friends and relatives. When I have made my discomfort known, some drivers have dismissed my concerns, defending themselves and their driving. Since I lacked the tools to recognize or explain my neurological difference, I could not seem to convince others of my experience or the need to accommodate it. In these and other situations, I’ve felt like it was me and my nervous system against the world. 

I hope my newfound awareness of my autism and the misrecognition it entails might help me understand why others seem, to me, so incapable of comprehending my experience. I hope this awareness will help me socialize with others in ways that take into consideration my needs and that are respectful of my autonomy.  

To work against the misrecognition of autism as social deficit, I encourage you to read the work of autistic authors. For example, I have found a great deal to relate to in this collection of essays by others who were diagnosed with autism as adults. There’s also an active community of #ActuallyAutistic people on social media. Follow them, and learn to appreciate all autistic people for who we are.

I plan to continue to write about autism and neurodiversity, so subscribe to my blog for updates (form below). I also tweet as @linguisticpulse. 

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