Homunculus
Spike has sensory processing disorder ("SPD"), so by definition, his ability to complete everyday tasks is frequently hamstrung by the way he manages the sensory information he receives from the world. Like others with SPD, he is overly sensitive to some stimuli, under sensitive to others, and has trouble integrating information from multiple senses at once. The jury is out on whether SPD is truly a stand-alone condition, or whether it is part of autism, ADHD and anxiety. These types of sensory difference can seem extreme and unusual. Over the years, Spike's sensory quirks have ebbed, flowed and morphed in response to unknowable forces. They were certainly there from the very beginning.
As a small baby, the shard of light on the living room wall captivated him. His gaze would slide over my face (which all the books told me he would find captivating) as he craned his neck to see the light play on the magnolia. He had trouble settling for naps, however soothing I made his environment. He would quickly become wired - torn between the physiological pull of sleep and the demanding sights and sounds of his little world. Only rapid rocking and long, looping lullabies sung until my voice cracked would eventually cut through the noise in his brain, providing a lifeline along which he could haul himself to the relief of sleep. Our quiet, orderly home, with no siblings seemed to exhaust him, and when he did finally nap, it would be for hours.
SPD has a very high comorbidity with autism. Typically, autism is diagnosed when an individual presents with the so-called "triad of impairments" in social interaction, communication and imagination, but the almost inevitable sensory differences constitute a significant part of what it means to be autistic. The "triad" should be a "quartet".
Our senses are our means to knowing the physical world, and so there can be both small and great challenges (and some benefits) associated with sensory anomalies. Undoubtedly, the sensory profiles associated with autism can render the world a noisy, itchy, smelly and confusing place. Thankfully, amongst autism-aware lay people, there is an increasing cognisance that an autistic individual may experience any given environment differently to their neurotypical peers.
Research is beginning to demonstrate that autistic brains show unusual white matter development. White matter is the brain's subway system, providing the rails on which trains of neural activity run. In broad terms, the neurotypical population can locate itself alongside Penfield's grotesque "sensory homunculus", with its giant lips and hands and popping eyes representing, by proportional means, the amount of brain space given over to different categories of sensory processing. These white matter differences mean that, from time to time, the autistic homunculus might grow elephant ears or find its tongue shrinking back into its mouth.
Spike certainly has some unusual sensitivities to sound. We never lasted at baby and toddler classes because of the mandatory and relentless clapping. It took some years to adjust to the hubbub of the classroom, and birthday parties were anathema to him. Ear defenders have been his faithful protector for many years. At ten years old, some of the sensitivity has waned, or perhaps he has developed coping mechanisms. Either way, he seldom reaches for his ear defenders, and having now almost conquered his fear of the squealroar of the hand dryer, his last, real aural threat is the fire alarm, which can still provoke an instant meltdown.
He also seems deeply affected by music. It comes as no surprise to me that research has shown that the autistic population displays greater physiological responses to preferred pieces of music than control groups. Certain pieces of music would cause Spike to sit as if in a trance, lost in the sleepy, lilting melodies of Laura Viers' "Tumble Bee", unresponsive to his name or activity around him. Conversely, despite requiring the soporific of lullabies at naptime or bedtime, if I otherwise sang in the day, he would startle and clap his hands to his ears, recoiling, as if I had thrown a grenade in his lap. This precise event prompted his first, full sentence: "No more singing, Mummy!" (it is true that I am not especially gifted in that department!).
I am interested in Spike's current relationship with music. He will sometimes latch on to a particular song and listen to it exclusively and repeatedly for some weeks, and then cast it aside, never wanting to hear it again, as if he has drained it of something, rendering it ugly to his ears. These days, he listens to music in an analytical mode, breaking down what he hears. In the car on the way to school, he will ask "What instruments am I hearing?" or comment "That's a guitar. Those are drums." His preferred music is ambient, full of looped refrains with either a driving or drowsy tempo, depending on his mood. Via his iPad, he will play "car music" for me, with certain tracks assigned for a trip to the mall, or the school run. I don't know how much this has to do with his SPD but something, I expect.
Humans don't experience all the sensory information that we are exposed to. Thank goodness, or we'd all be on our back, paralysed by the assault of it all. Our brains learn to filter and prioritise, so that we can function. A common analogy applied to one aspect of SPD is that sometimes, this filter acts more like a funnel, resulting in hypersensitivity to sensory stimuli. However, hyposensitivity is also a feature of SPD. There is no fixed pattern of sensitivity: every person is different, and their sensitivity may also vary from day to day according to health, stress and other factors. This inconsistency can confuse the onlooker, but sights, sounds, taste, smells and tactile sensations are not absolutes. They are perceptual processes and subject to variation both between and within individuals and over time.
This failure to filter irrelevant stimuli became most apparent to me when watching children's television with Spike. He was still at the single word phase, his speech encumbered by a preponderance of /d/ sounds and misplaced consonants. While watching, he would call out colours, "Des!", "Deen!" [red, green]. This puzzled me for many months, as the colours rarely seemed to relate to what I was seeing on screen. And then, in a lightbulb moment, I got it. He was telling me the colour of the background. I was so focussed on the action and the characters, that I failed to spot that he was identifying the changing colours of the scene backdrop.
There are obvious consequences to not being able to discard or relegate these extraneous sensory inputs, particularly in relation to the ability to focus and attend. I have long since thought that Spike's brain must be a busy place. A Waterloo station on a Friday afternoon. A double-page "Where's Wally?" spread. Exhausting. I see him seeking out certain forms of distraction which cut through the noise. Like trains, for example. The visual consistency of train stations and the rhythmic judder of the carriages passing over the gaps in the track seem to anchor his brain. Before trains, he sought out the "G-major" sub-genre of YouTube Poops (or "YTPs"). For the technological fogies among you, these are the YouTube version of a music remix. In "G-major" videos, the audio of a video clip is tweaked so that it sounds distorted and sinister, usually accompanied by a colour-inverted or tinted video. They are the video embodiment of a hallucinogenic migraine on fast-forward, frequently full of micro-cuts, alarming volume changes, stuttering and loops. They are assertive and jarring, but a small dose seemed to regulate Spike, bulldozing through loudly, ruminative thoughts and switching off the hose-in-the-face of sensory stimuli.
At the dining table, the packaging and labels of condiments, carefully designed to shout at the consumer from a busy supermarket shelf, also clamour for Spike's attention, so that he can't relax unless we remove them. He eschews snacks that come in packets, or food shaped like objects or adorned with faces, because he can't discard or relegate the look of the thing and by eating it, he is breaking up the visual effect. Likewise, his intense dislike of butterflies and moths has much to do with their erratic flight. His brain interprets the jerky swoops and tumbles of a fragile Cabbage White as an attack by a giant, prehistoric behemoth (pun intended). His visual sense is turned up to 11.
This ability to filter sensory input allows us to hold the world at arm's length. It gives us personal space. When that mechanism is awry, an individual may not know where they end and the rest of the world begins. Increasingly, there is research looking into whether perceptual differences may actually be at the root of some instances of autism, and it doesn't seem a great leap to consider that some children turn inwards and do not demonstrate social awareness because they are so sensitive. Studies of sensory integration therapy (therapy involving engagement in multi-sensorial activities) have shown, not only improvements in perceptual difficulties, but also in social skills, so perhaps the hypothesis will bear out.
Despite the daily challenges with haircuts, teeth-brushing and clothing preferences, the sensory differences are not all bad. It is difficult to disentangle Spike's autism and his sensory processing quirks, but I suspect the unusual arrangement of his cerebral superhighway, has also given him an eidetic memory, a quirky and individual creative sense, and a skill for drawing and mimicry.
Being somewhat hard of hearing, but also sensitive to noise (I’m a walking oxymoron) I have some level of understanding and lots of empathy for this particular facet of Spike’s autistic experience. Still, I do wonder, from time to time, what it would be like to walk in Spike’s shoes. The answer is probably hot and irritating which explains why he struggles to keep them on!
Want to read more? I hate butterflies!
