The Complex Sensory Experiences of Our Neurodivergent Family and the Interconnected Modalities of Stimminess and Sensory Hell

The interconnectedness between sensory input, emotions, energy level, ongoing task and how you manage everything you have to do alongside coping with sometimes overwhelming sensory input is an experience that many autistic people are familiar with. Understanding just how much the sensory world can impact how anxious you feel, how well you can communicate, how able to do a food shop or even just enter a space is an important piece of understanding to build up. Without this understanding, from the perspective of autistic people, many may not understand how all-consuming the sensory environment can be for some and for others it is a way of being able to interact that releases anxiety and tension. Interacting with the sensory world through sensory seeking behaviours is strongly associated with stimming (self-stimulatory behaviour that helps self-regulation) which is often a really positive (as long as no one is getting hurt) way of expression that can encompass happiness, anxiety, distress and so much more.

Source: Autistic sensory experiences, in our own words — Sarah O'Brien

Throughout the analysis, the research team recognised the interconnected nature of the themes. Additionally, the autistic adults in the feedback session emphasized the importance that the themes, representing their experiences, are interconnected. Therefore, the model is informed by the themes and provides enhanced representation of the lived experience of sensory reactivity differences for autistic adults.

Source: PsyArXiv Preprints | In our own words: The complex sensory experiences of autistic adults

Our autistic, ADHD, SPD family is quite the tapestry of sensory processing, and I’m very glad research is exploring and even centering interconnectedness.

In our own words: The complex sensory experiences of autistic adults” surveys “sensory reactivity differences, including hyperreactivity, hyporeactivity, and seeking” for 6 modalities: visual, auditory, tactile, interoceptive, gustatory, and olfactory.

  • Visual hyperreactivity
  • Auditory hyperreactivity
  • Tactile hyperreactivity
  • Interoceptive hyperreactivity
  • Gustatory hyperreactivity
  • Olfactory hyperreactivity
  • Visual hyporeactivity
  • Auditory hyporeactivity
  • Interoceptive hyporeactivity
  • Olfactory hyporeactivity
  • Visual seeking
  • Auditory seeking
  • Tactile seeking
  • Interoceptive seeking
  • Gustatory seeking
  • Olfactory seeking

I’ll go through each of these with brief anecdotes from the perspective of our family: myself, my partner, our kids, and our parents. But, before I do, let’s establish some vocabulary.

Stimmy

Autistic people love to share their stims and will call something "stimmy" if it produces a pleasant sensory experience.

Stimmy things can be:

-visual, such as glitter in water or a hypnotic animation, -textural, like a very soft item or slime, -auditory, such as a particular song or sound- including ASMR videos, or -whole-body, such as spinning or swinging.

Sensory Hell

Sensory Hell is the opposite of something being stimmy. It is utterly and totally unbearable.

Maybe you're thinking of the classic scenario of the autistic person melting down in a busy grocery store, and it's true that grocery stores are often considered tools of the devil by autistic people. But anything can be a sensory hell.

Source: 7 Cool Aspects of Autistic Culture » NeuroClastic

Now, let’s take a trip through the interconnected modalities of stimminess and sensory hell.

Visual Hyperreactivity

With regards to visual experiences, multiple-choice questions showed that 75% of the autistic adults identified as being hyperreactive to both bright and flashing lights, 30% reported being hyperreactive to patterns, and 27.5% to bright colours. Content analysis supported that the autistic adults experience hyperreactivity to bright lights, both superficial and to sunlight, as well as to flashing lights. Additionally, the autistic adults described their experiences of being hyperreactive to busy, cluttered environments.

That describes school classrooms, which are a “busy, cluttered” visual sensory hell.

Related:

Auditory hyperreactivity

For auditory experiences, multiple-choice questions showed that 87.5% of the autistic adults identified as being hyperreactive to loud noises, and 82.5% of the autistic adults identified as being hyperreactive to hearing lots of conversations. Additionally, 77.5% of the autistic adults identified as being hyperreactive to high-pitch noises, 75% to music, 70% to public transport sounds, and 26% to shopping centres. In support of this, content analysis found that many of the autistic adults reported to experience hyperreactivity to loud and unexpected sounds, such as sirens, alarms, and dogs barking. Busy and chaotic auditory environments were also reported to be difficult, especially situations with multiple conversations.

I’m very auditory hyperreactive, and I wish I had come packaged with a lifetime subscription of foam ear plugs and noise-cancelling headphones. If only I had this essential assistive tech as a kid.

hyperreactive to hearing lots of conversations

Busy and chaotic auditory environments were also reported to be difficult, especially situations with multiple conversations.

Overlapping conversations, especially, are very difficult to bear.

I like to use this scene from the Brian Wilson biopic …

Related:

Tactile hyperreactivity

In the tactile domain, multiple-choice questions showed that 75% of the autistic adults identified as being hyperreactive to clothing, 62.5% to different textures, and 47.5% tactile pressure differences. Content analysis found that many of the autistic adults reported to be hyperreactive to different fabric textures and labels in clothing and are unable to wear some clothing because of this. However, they also described their experiences of being hyperreactive to touch from other people, especially when it is light or unexpected.

Source: Autistic Odes to Noise-cancelling Headphones – Ryan Boren

Whole swaths of my body are off limits to intimate partners because I can’t handle light touch.

My kids, when younger and before adolescent shame, shed their clothes instinctively and habitually once safely at home to get all that all texture off their skin.

Showering is sensory hell. I hate it, especially the transitions. Feeling grimy is also sensory hell. The conundrum.

Related:

Interoceptive hyperreactivity

In regard to interoception, multiple-choice questions showed that 55% and 42.5% of the autistic adults identified as being hyperreactive to hot and cold temperatures respectively. 47% of the autistic adults identified as being hyperreactive to changes in weather and 35% to physical pain. Content analysis revealed that many of the autistic adults’ experience being hyperreactive to temperature extremes and find they can struggle when they feel too hot or too cold.

“Heat can be utterly unbearable, especially because it interferes with some of my other sensory preferences such as pressure seeking. Even in ordinary warm summer days around 20C, my functioning is impaired, and I feel discomfort. During a true ‘heatwave’ I can be essentially in a permanent state of shutdown. This sensitivity extends to hot water, as I have an immediate recoil tendency upon entering water even approaching scalding hot.” SE046

My oldest and I have a narrow temperature operating range. “Essentially in a permanent state of shutdown” is our response to heat.

Gustatory hyperreactivity

The multiple-choice responses found that 65% of the autistic adults identified as being hyperreactive to food textures, 37.5% to spicy food, and 32.5% to food temperatures. Content analysis found that many of the autistic adults reported a range of individualistic food aversions due to being hyperreactive to certain food tastes and textures, which can lead to dietary restrictions in some instances.

“I am very particular about tastes. I only like quite bland foods and can’t stand any kind of spice. I will find a food unbearably spicy that others say has no spice to it at all. I used to find fizzy drinks too intense when I was younger.” SE011

My oldest and my mother are hyperreactive to food tastes and textures and keep a bland, limited diet as a result. My youngest and I are foodies who seek variety and spice.

We all like our samefoods, though.

The term "samefood" refers to the autistic tendency to eat the same food very frequently or even exclusively for days, weeks, even months at a time.

Samefood can be used as a noun or a verb. For example:

"Sour cream and onion chips are my samefood right now."

or

"I don't usually samefood much, but this past week I can't stop eating spicy ramen."

A samefood often needs to be prepared in a very specific way, eaten in a ritualistic manner, or may only be a specific brand.

Anything outside of these criteria is Not Right and does not satisfy the samefood need.

It is considered upsetting and tragic when someone else in the household eats your samefood without consulting you, or if you ask someone to buy you a particular brand and they bring home a different one instead.

Autistic folk will commiserate with each other over tragedies like this because to us they ARE tragedies and neurotypical people just don't understand.

Source: 7 Cool Aspects of Autistic Culture » NeuroClastic

Olfactory hyperreactivity

As for olfactory experiences, multiple-choice questions showed that 65% of the autistic adults identified that they are hyperreactive to strong scents, including 60% to the scent of perfume and 45% to the scent of pollution. Content analysis showed that many of the autistic adults are hyperreactive to what they referred to as ‘strong scents’, such as perfume or food smells which they would find unbearable and could result in them feel nauseated.

My oldest is both olfactory hyperreactive and olfactory seeking, experiencing the world through habitual, curious sniffing that most of us never do, but often overwhelmed by strong scents, perfume and pollution among them.

Visual hyporeactivity

some of the autistic adults reported they were hyporeactive to visual search or environmental changes, such as having difficulty findings an item they’re looking for and being slow to notice changes or danger in their environment.

“There are numerous occasions where I was looking for an item which was in plain sight however I it took a long time to find it.” SE003

I can certainly relate to late. I’ve wonder if my hyperactivity, in general, is due to a lifetime of trying to filter a sensory flood. Some things get shut out entirely.

Auditory hyporeactivity

content analysis revealed that many of the autistic adults described experiences of auditory hyporeactivity; primarily in instances when they are hyper-focussed or concentrating on a task.

“Some sounds make me sleepy and if I'm sleepy or focused I just won't hear things. Like I was reading one time and didn't hear the fire alarm.” SE039

When I’m hyperfocused in a monotropic attention tunnel, I can be pretty insensate to my surroundings. Kids in middle school would take my bag and all my books from me while I was lost in thought or a book in the lunchroom. Lunchrooms are sensory hell, and I retreated into my head to cope, leaving me vulnerable.

Interoceptive hyporeactivity

Olfactory hyporeactivity

Visual seeking

Auditory seeking

Tactile seeking

Interoceptive seeking

Gustatory seeking

Olfactory seeking