If your brain lost the ability to shut out certain stimuli, you would hear every single sound clearly, sense every single smell and taste, and feel the texture of everything that your skin comes into contact with. You’d soon have the impression you were on the verge of losing your mind, overloaded by so many stimuli. This is precisely how people on the autism spectrum often feel.
It was, I think, 2005. I was in my early twenties and decided to go on a blind date. I honestly do not remember much from that meeting; I have even forgotten the face of the guy I was meeting. What I do remember vividly is the smell, the overly loud music blaring in the pub, and my discomfort when I couldn’t focus on the conversation. I also felt embarrassed that I lacked the confidence to ask whether they could turn down the radio. Back then, I would have found it difficult to admit to the man I was with that I was being overwhelmed by sensory experiences on our date.
Many years later, I came to understand my mysterious sensitivity to unpleasant smells and noise: I am an autistic person (I prefer this term to “a person with autism,” which sounds as if I could somehow be detached from the condition that has been with me throughout my entire life!). I also have ADHD (Attention Deficit Hyperactivity Disorder). I received these medical diagnoses years later, after countless crises and layers upon layers of masking—attempts to pretend that I’m cut from a more resilient cloth than I actually am. The two conditions merged together into a kind of garment that’s impossible to take off—something I can now call a “syndrome of illogical reactions.”
Safe Bonding
Autism spectrum disorder is a relatively young diagnosis in psychiatry and neurology. The first clinical descriptions were published by Soviet child psychiatrist Grunya Sukhareva in 1925; however, two men are commonly considered to be the fathers of this particular set of diagnostic traits: Hans Asperger and Leo Kanner. It is worth noting that the latter did cite Sukhareva’s work, so he must have been aware of it. An autism diagnosis can only be made based on in-depth diagnostic interviews and psychometric tests. There is no blood test, no neuroimaging method, no genetic test that can confirm or rule out autism. Diagnostic observation is usually based on three key groups of deficits: difficulties in communication, difficulties in establishing and maintaining social relationships, and repetitive patterns of behavior. It was not until 2013 that difficulties in sensory processing, such as hypersensitivity, hyposensitivity, or lack of coherence in organizing and interpreting sensory data, were included in the diagnostic criteria.
Initially, clinicians were less interested in how the autistic brain functions and more interested in how the social mismatch of autistic individuals manifests itself. All therapeutic interventions were designed to help people on the spectrum compensate for their lack of intuitive understanding of interpersonal relationships. While it was easier to convince children to cooperate with such therapy, the standard treatment for older (and larger) autistic individuals involved pharmacological suppression of their strong feelings of frustration, which stemmed from chronic trauma and the inability to communicate their needs to the outside world.
Only in recent years have researchers managed to start examining why people are born and develop on the autism spectrum. There are many indications suggesting that the key lies in an individual’s relationship to their own senses. And it seems that the autistic condition arises out of a certain sensory “incoherence”— meaning over- or under-sensitivity, a difficulty in extracting (out of the endless sea of sensations) the precise stimuli that are socially recognized as representing valuable and important information.
Imagine two children’s rooms. In each of them, there is a young mother with an eighteen-month-old child. Both mothers need a bit of a breather from playing with the toddlers, so they put them down in their cribs and give them their favorite playthings. Suddenly, the loud sound of an ambulance comes blasting through an open window. What would most parents do? They would turn their gaze towards the child, anticipating its potentially anxious reaction. No, this is not the famous maternal instinct at work—rather, it’s an adaptive skill gradually developed by caregivers that prompts them to first check the safety of the creature under their care. But what we are more concerned with here is how the children react. In one of the rooms, the child turns its eyes up from its toy and searches for the caregiver’s gaze; due to the secure bonding that has formed between them, the child’s initiative response to a sudden, potentially threatening sensory stimulus is an urge for interpersonal contact. If the mother does not immediately approach the child, it will probably cry until it is comforted in her arms. The other child, in turn, will not initially focus on looking for its mother’s gaze but will instead direct its attention toward the source of the noise—and this will happen for just a fraction of a second before it bursts into tears. Now the question arises: which child is more likely to exhibit traits (though not necessarily disorders) associated with the autism spectrum or any other neuroatypicality related to sensory processing? Probably the one that turns directly toward the stimulus.
The theory of bonding, formulated by British psychiatrist and psychoanalyst John Bowlby in the 1960s, assumes that a secure bond with a caregiver lays the groundwork for a child’s socio-emotional development. What does that mean? Being completely dependent on its parents, an infant derives pleasure from being close to them: from being fed and nourished and from physical touch, the warmth of their bodies, and the rhythm of their heartbeat. The treatment it receives from loving and attentive parents assures the child that they can be relied on. So when the infant is not certain whether a stimulus or a set of stimuli it experiences poses a threat or not, it will turn to those individuals who have never let it down.
Even when we are adults, this conditioning still works: we stop being afraid when we are hugged by someone close, and our frustration subsides as we consume a nutritious meal (a connection also evidenced by the special word hangry, a combination of angry and hungry). While listening to the rhythm of pieces of music that are associated with heartbeats, we can find a space in which to process loss and grief.
The example of the children reacting to the siren is by no means a criterion for early autism diagnosis, but it does illustrate something that may prove crucial in later stages of development. I would also like to stress: the idea that people on the autism spectrum do not need or cannot build secure bonds is completely wrong. This is something we all need, regardless of our neurotypicality.
Why I Rock Back and Forth
In the case of autistic individuals, the “software” that prompts children to seek bonding, acceptance, and a sense of security operates in a slightly more complex way. Their nervous system cannot process and interpret the deluge of incoming sensory data quickly enough or generate an appropriate response. And yet their survival may depend on this! All the stereotypical “autistic” behaviors, such as rocking, hand-flapping, repeating sequences of sounds, are forms of self-stimulation. They are survival strategies in a world that seems hell-bent on overwhelming us with an excess of stimuli.
Perhaps the most challenging thing for an autistic person to interpret is another human being. The inputs coming from another person include not only their smell, tone of voice, and the distance at which they choose to stand from us, but also the emotions they express, the code of behavior that is characteristic for their social group, their clothing or the status we attribute to them in our own hierarchy of importance. Have you ever thought about how difficult it is to make sense of all this? Functioning as a dynamic system in time and space with numerous changing variables, a person is ultimately something highly unpredictable. Even if we know someone well and are able to “map out” their behavioral algorithms, we may still be surprised to see how quickly these algorithms can shift. People on the spectrum find a sense of security in experiencing repetitive, predictable phenomena over which they have control: the same food, clothing, people, and movies. I remember that as a child, it was easier for me to learn to read and count than to assimilate social rules while playing freely with my peers.
Up until a certain age, the brain reproduces nerve cells at an astronomical rate, especially between the ages of 18 and 36 months old. At that point, we cease to be sweet little babies wholly dependent on our parents, and we transform instead into Exploration and Destruction Machines; we begin to flex our own autonomy, our ability to make decisions, and the boundaries in our relationships with both our animate and inanimate surroundings. However, to advance to higher levels of cognitive organization (such as abstract thinking, planning, and anticipating the consequences of actions), we need not only a rapid increase in the numbers of our neural connections but also a way to organize this surplus. That’s why the next step in the development of the nervous system is a phenomenon known as “synaptic pruning.” In short, it involves the elimination of infrequently used connections between neurons, which in turn, allows for more efficient communication along the more useful neural networks.
Research on this phenomenon confirms that in autistic brains, synaptic connections organize themselves differently and experience less pruning. The excessive number of connections and neural hyperactivity may manifest themselves not only as savant syndrome (as in the film Rain Man, whose main character could spout out the results of complex equations in mere seconds), but primarily as a certain disproportion in the energy supply vs. the demand needed to drive such an extravagant powerhouse. This, in turn, affects the autistic brain’s ability to understand that Most Difficult of All Systems: another human being.
The latest edition of the DSM—the system of classifying psychiatric disorders published by the American Psychiatric Association—treats autism as a spectrum. People on this spectrum range from those with the lowest needs for support in daily functioning to those requiring constant help. I, for instance, am a person with the lowest need for support (the first level): I work for a living and I even support a family. However, this does not mean that I do not need help at all. Those with the highest need (the third level) often struggle with a combined intellectual disability, needing someone to be with them and provide aid twenty-four hours a day.
When individuals on the third level of the autism spectrum (I deliberately do not use terms like “low-functioning” or “with profound autism”) reach adulthood and outgrow the special education system, they generally fall into the “black hole” of disability. Often, they are unable to communicate verbally and have experienced various traumas due to ineffective “therapeutic” interventions or attempts to suppress behaviors that are troublesome for the environment. They are reluctantly accepted by day-support facilities because their condition is particularly demanding. One never knows what might frighten an autistic person, overstimulate them, or trigger a strong need for self-stimulation that will distract or frighten others. Often, caring for adults on the “third level” proves to be an exceedingly overwhelming task (not only for families and relatives but also for the entire support system), and as a result, many of them simply end up in a social care home or psychiatric hospital. Not because people with this set of disabilities are dangerous and must be isolated, but mainly because their sensory apparatus, which makes them feel everything everywhere at once, prevents them from being able to communicate with others and with the world.
Stimulated
If a person (autistic or not) experiences disturbances in terms of receiving and processing sensory stimuli, the “upper floors” of their brain functioning can suffer, i.e. their emotional realm, as well as their high-level cognitive processing—associating facts, drawing conclusions, retaining memory, having analytical abilities, or planning multi-stage tasks. Conversely, disturbances on the higher levels can affect the receptors. For example, people in depressive states may sometimes experience taste and smell disorders similar to those we have become accustomed to during the COVID-19 pandemic. Depression can also cause disturbances in the senses of interoception and proprioception, which inform us about the body’s orientation in space and the state of our internal organs. Hence the suggestive, literary descriptions of depression one can sometimes encounter, such as having “a wet blanket wrapped around your head” or a “body made of lead.” Those who suffer from anxiety or people with PTSD more often experience rapid stimulation of the sympathetic nervous system. Hypersensitivity is a symptom in which the body enters a multi-organ emergency-response mode. Some systems and organs accelerate (e.g. the cardiovascular system), while others slow down (e.g. the digestive system); in the sensory realm we are focused on detecting potential threats, which then leads us to select a strategy: fight, flight, or freeze.
Individuals with ADHD also experience sensory incoherence—a neurodevelopmental disorder that is believed to be caused by disturbances in dopamine metabolism. Dopamine (paired with norepinephrine) fuels the reward system, facilitates learning processes, and supports areas of the brain responsible for what is known as executive function: focusing attention, making plans, maintaining orientation in time and space. Because they “burn” dopamine faster, individuals with ADHD will feel an almost physiological need for sensory stimuli that will stimulate its production. This can include a desire for movement or for other multi-sensory, intense sensations. However, such individuals themselves nevertheless report that they experience just as many moments of under-sensitivity as over-sensitivity; that—like overstimulated people with autism—they also go through states of feeling overwhelmed, chronic tension, depression, and burnout.
I Feel More
The issue of a person’s inherent susceptibility to sensory stimulation almost always comes up when we talk about mental and physical health, and general individual well-being. In 1996, the American psychologist Elaine Aron published the book The Highly Sensitive Person: How to Thrive When the World Overwhelms You, in which she set forth the theory that there is a spectrum of processing sensitivity. The set of symptoms she identified relates to susceptibility to sensory stimuli (especially to light, sound, and smell), as well as generally understood sensitivity to the environment, nature, the city, and other people. Aron hypothesizes that there are individuals whose excessive receptivity makes them not only more prone to dysregulation, but also more inclined to empathy and more perceptive of beauty or a sense of truth and justice. Does not sound very good, does it? But according to Aron, there is a sizable group of people (15 to 20 percent of the population) who are exceptionally endowed in sensory terms, but at the same time also—one might put it—“morally distinguished.”
This concept is quite controversial today and is criticized by psychological circles. Especially since Aron formulated it on the basis of her own observations of the behavior and reactions of . . . her autistic nephew. Nevertheless, for many people, this theory has played a key role in shaping their identity. Let’s face it: in today’s times of rampant neoliberalism, sensory sensitivity is not a trait that constitutes a measurable, quantifiable value. It is most often an obstacle and a social impediment, and there is also a belief that it does not promote productivity or a positive approach to life. It is often even confused with hypersensitivity, especially with regards to self-criticism. In this sense, Aron may indeed be right. Higher-than-average sensory sensitivity, when properly managed with psychotherapy, can constitute something valuable, a weapon against the ruthless capitalist world.
It’s hard for me to imagine a situation that would make the world more friendly in sensory terms, that would get it to slow down, hush up, stop being so overwhelming. My impression is that the very opposite is happening. It is up to people with higher sensitivity levels, including myself, to find ad hoc remedies that prevent stimuli from over-depleting our fragile resources: wearing earplugs, living the countryside, visiting supermarkets at quiet hours, taking psychiatric medications, avoiding crowded places and loud music, and above all—devoting time to psychoeducation, psychotherapy and the arduous, never-ending process of getting to know ourselves.
I find especially tempting the proposals of the eighteenth-century German physician Melchior Adam Weikard, who was the first in medical history to describe the symptoms of the inattentive subtype of ADHD. The doctor recommended placing “skittish scatterbrains” in dark and quiet rooms, treating them with massages, baths, gymnastics, and horse riding. I’ll be first in line for a prescription.
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