an intense world

Have you ever read - or heard - The Princess and the Pea? It’s short fairy tale by Hans Christian Andersen that describes a prince testing a woman to see if she is a princess. He puts a pea under twenty mattresses and invites her to sleep on top. She tries to sleep on top of the mattresses but finds it absurdly uncomfortable due to the pea - so he knows she is a real princess.

I’m a real princess. Or rather, I was teased as a child for being the princess and the pea. I’ve always been easily irritated by seemingly small amounts of sensory input. I can’t sleep, for example, when I have a slight stomachache or my bed is itchy or I can hear distant conversations a few floors away. I’ve always shied away from bright lights and loud noises, and had trouble with food texture (to the point of gagging and nausea). As a child, I also suffered a series of near-constant headaches that defied explanation.

sensory sensitivity

My sensory world has always been invasive and intense. For the formative years of my life - and beyond - the narrative I accepted was that I needed to toughen up. One side was external: being told I need to eat the gross food or that bright light is better for my eyes. The other side was internal: if no one else is jumping or wincing at this loud noise, I should endure it as well, because everyone else is enduring. I think enduring was the main source of those mysterious headaches.

As I chat more and more with fellow autistic people, I’m finding that the things we have most in common accross the autism spectrum is high sensory sensitivity. Over the past month my personal work on autism has focused on exploring my too-rich sensory environment and finding coping mechanisms. I’ve stopped assuming that my reactions to light, sound, and sensation should align with everyone else’s¹, and started focusing on reducing the energy I spend enduring overstimulation.

the intense world theory

This hyper-sensitivity tha tis so central to the experience of autism may indeed be a base characteristic of autism, not a side effect. I encountered that idea first in this beautiful definition² of autism, which includes:

An autistic child’s sensory experience of the world is more intense and chaotic than that of a non-autistic child, and the ongoing task of navigating and integrating that experience thus occupies more of the autistic child’s attention and energy. This means the autistic child has less attention and energy available to focus on the subtleties of social interaction.

Or as I like to think of it, too much of my brain’s CPU was devoted to signal processesing, so there weren’t as many cycles left over for learning all the things. In my case, I think I learned a lot of the things neurotypical children did, just later. I can read social cues and facial expressions, but they don’t feel like my native language.

From a neurobiology perspective, this idea is part of the Intense World Theory, as proposed by Henry And Kamila Markram and explained in this review article^3,4. The theory is that autism is the result of hyper-functionality in some areas of the brain, more specifically:

The proposed core cognitive consequences are hyper-perception, hyper-attention, hyper-memory, functions mediated by the neocortex, and hyper-emotionality, mediated by the hyper-functionality of the limbic system. These four dimensions could potentially explain the full spectrum of symptoms in autism, depending on the severity of the microcircuit pathology in different brain regions. The degree of hyper-functionality in different brain regions could vary in each child depending on genetic personality traits, on unique epigenetic conditions, and unique sequence of postnatal experiences.

The article explains how those hyper-functional systems can, during childhood development, essentially overload the brain and make it difficult or impossible to learn things ranging from social cues to spoken language. Too much sensory input can cause also cause a withdrawal, or mean that an autistic person might only be able to focus on a very narrow section of input instead of the whole picture. Social and learning deficits are, in this paradigm, consequences of hyper-functional systems combined with environments not well-suited to autistic childhood development.

seeing myself in the neuroscience

I won’t pretend that I understood all of the paper, but I waded through enough jargon to see the neurological underpinning of a lot of ways I feel different. For example, they argue that hyper-attention is a consequence of this neurological model, but that a slight increase in focus is also accompanied by strong difficulties in switching between areas of attention. This is exactly my flow at work; I can happily stay on one task for hours, but I have to work relatively hard to switch into something new.

There’s a section on hyper-emotionality that felt so close to my experience. They argue that autistic people are not, in principle bad at reading feelings but instead propose that:

the amygdala may be overtly active in autism, and hence autistic individuals may in principle be very well able to attend to social cues, feel emotions and even empathize with others or read their minds, but they avoid doing so, because it is emotionally too overwhelming, anxiety-inducing, and stressful.

Because I do read social cues and emotions and it really can be quite overwhelming, anxiety-inducing, and stressful. And between that overwhelm - and not being quite fluent in social cues - the experience can be unsuccessful or draining or both.

And for one last example, the authors discuss enhanced memory for autistic people (it’s quite helpful, tbh) but indicate another consequence of the neurological model could be enhanced fear memory. That would mean that autistic brains have unusually strong and persistnet memories of dangerous situations, making it easier to develop anxieties and aversions. This particular symptom isn’t yet confirmed in human subjects, but in some ways it feels validating to hear “here is evidence that your brain likes to over-interpret fears.”

gifted/tired

The review article ends with specific recommendations for the optimal developmental environment for autistic children. This seems common sense to me, but apparently was (and may still be) controversial: to provide autistic children with an environment with fewer sensory extremes and additional stability and routine. This is, after all, what many autistic children actively request if they have the power to do so. But the big conclusion is that doing so could result in:

truly capable and highly gifted individuals who can integrate with their social environment successfully.

Which falls quite flat for me⁵. It sounds a bit too much like “let’s make sure autistic people can be excellent cogs in the machine” without acknowledging the rights and preferences of the wide range of autists. It is essential to facilitate as much childhood development as possible, so autistic people have better chances to develop abilities to interact with the world, but we should be doing so as a human right. The goal isn’t integration, the goal is to provide more agency to people on all parts of the autism spectrum.

After all, I’m probably capable, gifted, and socially integrated. And I’m quite glad, but I’m also very tired. I read this piece last week, which argues that chronic fatigue and burnout are so common to the autistic experience that they should be symptoms. My intense social and sensory world is exhausting, and sometimes I would retreat more if capitalism didn’t demand my labor for a living wage. But at least now I better understand that my desire to retreat ay be part of my neurological makeup.