Voices Worth Hearing: One Autistic Advocate's Sensory Journey

At SOS Wellness , neurodiversity-affirming care is not just a philosophy — it is personal. Our founder and medical director, Dr. Irfan Ahmed Dahar, MD, was inspired to build a practice rooted in compassion and inclusion in part because of his son, Sameer. Today, in honor of Autism Acceptance Month, we are honored to share Sameer’s words in his own voice.

The common thinking practice identifies nonvocal autistics as intellectually or behaviorally challenged. In each domain of life, there are barriers to meaningful expression — presumption of incompetence, closed doors from a young age. However, I talked my parents into letting me study science. In becoming educated in decision-making, I mastered advocacy and long-term planning. More and more, my functions of sensory-motor coordination, auditory processing, neural plasticity, and body regulation are improving. The biomedical algorithms are expanding my potential for personal growth.

The leverage of typing imposed the necessity of solid thinking and external expression — opportunities that arrived immediately and changed everything. Life will never be the same. I understand the burden of my disability and look to increase awareness. In the United States Autism Association, there needs to be development of curriculum regarding the nonspeaking autistic experience. We need our voices heard and our stories told. Too often, we are a silent, marginalized population.

The Sensory Journey

For all my life, I have watched in wonder as my reality of autism has unfolded before me. The particle awareness I have acquired today makes me wonder — is my open, sensory-system language a defining feature of stimulation in autism? Or does this language leverage a different way of being and thinking?

Over the years, the general thinking on this topic from experts has made me frustrated. The lack of understanding about atypical neural function in autism has undermined the potential development of autistic people. The movement discrepancies, the geophysics of discrete information processing, the sensory thresholds, and the ideological frameworks of autism have been misunderstood and taken as deficits. I want to change that. In this series, I will describe my sensory experience in scientific terms as best I can. Come join me on this sensory journey.

Energy and My Open Sensory System

In autism, we have open sensory systems — those in which geophysical stimulation generates noncommensurate responses. These responses are a consequence of altered sensory thresholds and filtration of stimuli. In scientific terms, the threshold stimulus is the weakest stimulus that could generate an action potential in a neuron. There are thresholds, or levels of stimulus intensity, that allow for detection, recognition, and tracking. In autism, discrete patterns of thresholds are manifested beyond the holistic, neurotypical observation of the environment.

Each pattern algorithm is modulated by the level of environmental noise — the energy interaction of the human being with its environment — in the form of sound, light, electromagnetic wavelengths, material or particle thermodynamics, pressure differentials, and vestibular changes with body movement and orientation. These interactions can affect our ability to detect and recognize stimuli. In autism, these interactions are either subthreshold or suprathreshold, and the creation of action potentials can occur in the absence of noticeable stimuli. Right now, scientists don’t know how or why this happens. It could be because of atypical neural circuitry, different working thresholds, altered neural memory, or neural transmission delays.

My Vision

The visual system of the human being has many great characteristics. Our eyes take in our environment, help us navigate, lead us in the discernment of objects and people, and shape our reality. Governing our perception are millions of neurons specialized to carry neural signals from our retina and feature detectors to cortex manifolds in our brain. This fractal system learns to form connections and builds a network of evolving images with associated meaning and context.

In my autism, visual data collection is of a singular nature — a minute-by-minute flux in visual stimulation with certain discrete boundaries between light and shadow. In my experience, images determine movement. However, the engines of time challenge my discernment of movement. The asynchronous transmission of impulses creates visual juxtaposition of objects in my limited sphere of central vision.

In reality, our minds interpret what our eyes take in. In human beings, our minds fill in the gaps of our vision by gluing together snapshots taken by our eyes, thereby giving us continuous, holistic vision — perceptual constancy. As we take in our environment, we move our eyes from transfixation point to transfixation point in a matter of milliseconds. These breaks, called saccades, are indiscernible for neurotypicals. However, transmission delays can cause the saccade to expand, altering the transmission of data from visual receptors and optic nerve fibers to the visual cortex and causing the processing of signals there to become haphazard.

Such internal dysregulation has consequences in autism: light hypersensitivity, tunnel vision, atmospheric disturbance or haze, depth perception alteration, images out of temporal order, flashbacks or false visual memories, and visuomotor challenges like being unable to handwrite legibly, difficulty in object manipulation, and challenges with independent navigation.

A Walk in the Park

How I navigate my world is different from neurotypicals. Bordering my neighborhood is a local park complex. There is a particular route that first takes me from my house through the local neighborhood, across a busy street, and into the gated park.

As I immediately leave my front door, I make my way using my direct perception to my target starting point — the sidewalk. I can see the area which is parallel to the road. The sidewalk is an affordance, as it offers me a stable walking surface. As I walk along, I try to ground my senses so I can walk — by focusing on the introduction of my mind to the air, the sounds of birds, and the heat of sunlight. The light affordance helps me to see; the air affordance helps me to breathe. My upright posture affords me the ability to have locomotion and scan my visual horizon. I follow the sidewalk to the busy street, which I cross with the help of my aide. The timing and depth perception of oncoming cars is challenging for me. I cannot do this alone. But I can target a destination by following decision landmarks like the large tree by the street. These landmarks are my lighthouses in a sensory sea. I know the number of steps. I know the feel of the route I must take.

The American psychologist Gibson saw sensation and perception as direct, needing no complex processing. He came up with the concept of optic flow to help explain the visual stimulus caused by movement of an organism through its environment. Optic flow allows affordances — possibilities for action — to manifest in the environment. In optic flow, there is a focus of expansion, with a gradient of flow. Neurotypicals can see the passage of space and time as objects move past and away from central vision, speeding up as they get closer. It’s hard for me to judge the passage of space and time.

In my experience, complex visual stimuli come to me at different rates. I use my peripheral vision and take visual snapshots, putting them together like a jigsaw puzzle in my mind. As I don’t continually attend to my visual field, I don’t have a consistent optic flow. I compensate by relying on motor memory and becoming hypercognizant of patterns in order to navigate my surroundings. Consequently, I rely on changes in my visual snapshots to gauge where I am in spacetime.

When I am walking, I look down at the sidewalk and quantify the number of steps I am taking. I take brief glances of my visual field from time to time. I use decision landmarks and tactile cues to navigate. I use a visual direction strategy with minimal visual cues and keep my body directed toward a target — similar to how a blind person may walk.

In learning about optic flow, I realize that I am structuring my visual perspective differently from what Gibson described. As I primarily use object recognition and take in the entire scene as a snapshot to construct my reality and determine my movements, I may be using a more mediated approach. I do not use reflexes as much, or the direct perception approach. I am also not efficiently analyzing cars or pedestrians moving quickly in my visual field. Having a flood of imagery being attended to gives me the feeling of overstimulation. The degree of overstimulation is what delineates my level of function and my ability to navigate my world with my entire reasoning.

With each step, I look at my internal energy well — as my limit or boundary of any action — and begin to create ways to filter my visual channels so I can manifest my affordances and conserve my energy potential. I sometimes flap my hands in front of my eyes and look away. I realize my behaviors to filter may seem fanatical and absurd to outsiders, but the function of these behaviors is to filter and regulate the senses. No behavioral practice in any other culture is questioned. However, nonspeaking autistics are questioned for looking after their own body governance.

Intellectually challenged is what we are called. But nothing could be further from the truth. We are keen observers, beautiful souls entwined in nature, and brave warriors of reality. We strive forward through the maze of our senses and reach our destination.

Sameer Dahar is a nonspeaking autistic self-advocate, a member of the United States Autism Association, and the inspiration behind much of what SOS Wellness stands for. Learn more about his work at autismastronaut.com .

SOS Wellness is proud to provide neurodiversity-affirming behavioral health services across Ohio. To learn more about our approach to care, contact us today .