Perceptual Worlds and Sensory Trauma

a human brain, viewed from above, has on it the green silhouettes of Earth's continents

Understanding the sensing and perceptual world of autistic people is central to understanding autism.

Considering and meeting the sensory needs of autistic people in housing | Local Government Association

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Understanding the sensing and perceptual world of autistic people is central to understanding autism.

Everyone has eight sensing systems: the first five being the familiar sight, hearing, smell, touch and taste. These five give us information about the world outside our bodies. Three internal sensing systems give us information from inside our bodies – our vestibular system (coordinating movement with balance), proprioception (awareness of position and movement of the body) and interoception (knowing our internal state including feelings, temperature, pain, hunger and thirst). Although not all the external senses are equally affected by the physical environment, we consider them all – as they collectively add to the ‘sensory load’ that many autistic people often experience. Any sensory input needs to be processed and can reduce the capacity to manage and process other things.

As many autistic people process one thing at a time, sensory stimulation can stack up. As the brain’s highways become congested, there are repercussions throughout the entire neural network. This can lead to headaches, nausea and the fight and flight response, this is what causes many meltdowns and shutdowns.

Considering and meeting the sensory needs of autistic people in housing | Local Government Association

Imagine having no choice but to zoom in on life.

Perpetual defense mode – the silent wave

One of the most important findings is that most autistic people have significant sensory differences, compared to most non-autistic people. Autistic brains take in vast amounts of information from the world, and many have considerable strengths, including the ability to detect changes that others miss, great dedication and honesty, and a deep sense of social justice. But, because so many have been placed in a world where they are overwhelmed by pattern, colour, sound, smell, texture and taste, those strengths have not had a chance to be shown. Instead, they are plunged into perpetual sensory crisis, leading to either a display of extreme behaviour – a meltdown, or to an extreme state of physical and communication withdrawal – a shutdown. If we add to this the misunderstandings from social communication with one another, it becomes easier to see how opportunities to improve autistic lives have been missed.

If we are serious about enabling thriving in autistic lives, we must be serious about the sensory needs of autistic people, in every setting. The benefits of this extend well beyond the autistic communities; what helps autistic people will often help everyone else as well.

Considering and meeting the sensory needs of autistic people in housing | Local Government Association
A person that is exploding with sparks from the inside out holds a cordless drill to their own temple, which is also producing sparks.
A person that is exploding with sparks from the inside out holds a cordless drill to their own temple, which is also producing sparks.
Sensory Overload by Alexis Quinn

“Patterns are a real problem for me. I get absorbed by them – they take all my focus and it’s really distressing. When I’m overloaded sound and visuals can become too intense. My ability to manage fluctuates depending on how overloaded I am. When I’m overloaded, I can’t manage visual clutter, things on mantelpieces and walls, open fires, pattered carpets or clocks ticking. These are all things that would seem fine on a good day but become too much.”
I have massive sensory sensitivity. Especially to light and sound. My sensitivity fluctuates depending on how overloaded I am. If I’m not overloaded, then I can tolerate a lot more.”

Supporting Autistic Flourishing at Home and Beyond – Alexis Quinn artwork – NDTi

I’m telling my story on behalf of the thousands of people with autism and / or learning disabilities who are inappropriately detained in hospitals

I don’t respond well in a hospital, so I was stimming and pacing.

Stimming feels good to me and counteracted the busy, chaotic sensory environment of the hospital.

Overloaded that day, I desperately needed my walk. The staff, as usual, were very busy. I didn’t want to disturb them, but I had to have someone let me out. There were three doors between me and the outside world.

“Unbroken: Learning to Live Beyond Diagnosis” by Alexis Quinn

The divergent ways in which we process the world around us can also leave us fatigued and sapped of energy, as autistic people have “higher perceptual capacity” than our neurotypical counterparts, meaning that we process greater volumes of information from our environment. Autistic people commonly use the concept of ‘spoon theory‘ to conceptualize this experience of having limited energy resources. Initially theorized in the context of chronic illness, spoon theory can be explained as every task and activity (enjoyable or otherwise) requiring a certain number of ‘spoons’. Most people start their day with such an abundance of spoons that they can do whatever they choose, and rarely run low. We autistic folk start with a limited number of spoons, and when those spoons run dangerously low, we need to step back, rest, engage in self-care, and wait for our spoons to replenish.

Doing More by Doing Less: Reducing Autistic Burnout | Psychology Today
Autism Life Explained: Senses (Hyper/Hyposensitivity)

Though autistic people live in the same physical world and deal with the same ‘raw material’, their perceptual world turns out to be strikingly different from that of non-autistic people.

Differences in perception lead to a different perceptual world that is inevitably interpreted differently. We have to be aware of these differences and help autistic individuals cope with painful sensitivities and develop their strengths (‘perceptual superabilities’) that are often unnoticed or ignored by non-autistic people.

The inability to filter foreground and background information can account for both strengths and weaknesses of autistic perception. On the one hand, autistic individuals seem to perceive more accurate information and a larger amount of it. On the other hand, this amount of unselected information cannot be processed simultaneously, and may lead to information overload. As Donna Williams describes it, autistic people seem to have no ‘sieves’ in their brains to select the information that is worth being attended to. This results in a paradoxical phenomenon: sensory information is received in infinite detail and holistically at the same time. This can be described as ‘gestalt perception’, that is, perception of the whole scene as a single entity with all the details perceived (not processed!) simultaneously. They may be aware of the information others miss, but the processing of ‘holistic situations’ can be overwhelming.

Sensory Perceptual Issues in Autism and Asperger Syndrome: Different Sensory Experiences – Different Perceptual Worlds

Thus, all features of autism (social interaction impairments, language and communication problems, cognitive functioning, repetitive behaviours, etc.) can be seen as rooted in sensory overload experienced by autistic individuals. Autistic individuals perceive, feel and remember too much. Faced with a bombarding, confusing, baffling and often painful environment, autistic infants withdraw into their own world by shutting down their sensory systems.

Sensory Perceptual Issues in Autism and Asperger Syndrome: Different Sensory Experiences – Different Perceptual Worlds

Sensory Trauma is the name Autism Wellbeing has given to a phenomenon that autistic people have long been describing in our words and actions. The events we experience as physically or emotionally harmful or life threatening may not necessarily be the extreme events typically associated with trauma. Sensory Trauma may arise from everyday activities such as taking a shower or going shopping. It can occur frequently and lead to us spending our lives in a state of hypervigilance. We respond to sensory information in a way that is totally proportionate to our genuine, lived experience. However, our responses may be mislabelled or misunderstood.

The impact of Sensory Trauma is significant. Infants may miss out on regulating, growth-promoting parental input. Toxic stress may modify areas of the brain involved in learning and memory and increase our vulnerability to a range of physical and mental health experiences with poorer outcomes.

How sensory trauma affects how we grow develop and learn

The long-term effects of misunderstanding or mislabeling sensory trauma can be catastrophic.

How sensory trauma affects how we grow develop and learn

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.

Autistic sensory experiences, in our own words — Sarah O’Brien

In considering autistic sensory experience, we are thinking about autistic lives, the day to day experience of living as an autistic person. Given its implication in the ordinary acts of everyday life, it is difficult to avoid the conclusion that, for many autistic people, sensory trauma has been there all along, hiding in plain sight.

Sensory Trauma: Autism, Sensory Difference and the Daily Experience of Fear

Fear is the main emotion in autism…

Thinking the Way Animals Do

My earliest, most powerful memories are sensory. Of things feeling chaotic. Of being terrified of loud noises. Of being terrified of a lot of foods. Of not being listened to in those experiences and then being deemed to be problematic for fighting for my right not to be traumatised. These are my earliest memories. Feelings of social difference didn’t arise until later. It is hard to learn functional social skills when you are having to fight all the time to be heard. Ditto, it is hard to learn empathy when you are not seeing it. And I feel that, in being labelled as having this triad of deficits, I am in a sense being re-traumatised in still not having my understanding of the world recognised.

What I understand autism to be – Spectrumy

 I have written elsewhere about what I refer to as ‘the golden equation’ – which is:
Autism + environment = outcome.

Avoiding Anxiety in Autistic Children by Luke Beardon

The Accommodations for Natural Human Variation Should Be Mutual

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Real inclusive organizing should at a minimum include: Incorporating disability into your values or action statements; having disabled people on the organizing committee or board; making accessibility a priority from day one; and listening to feedback from disabled people.

Education Access

We have turned classrooms into hell for neurodivergence. Students with conflicting sensory needs and accommodations are squished together with no access to cave, campfire, or watering hole zones. This sensory environment feeds the overwhelm -> meltdown -> burnout cycle. Feedback loops cascade.

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They don’t take disability studies classes.

They don’t socialize with us.

They don’t listen to us.

Wanted: hospitals and doctors’ offices that…

They don’t socialize with us.

They don’t listen to us.

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Interaction Access

Interaction badges are useful tools. Their red, yellow, green communication indicators map to our cave, campfire, and watering hole moods. The cave, campfire, watering hole and red, yellow, green reductions are a useful starting place when designing for neurological pluralism.

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Written communication is the great social equalizer.” It allows us to participate and be a part of things bigger than ourselves.

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