My Answer to the Question ‘What Does Autism Feel Like?’

What does autism feel like in me? Well, autism often feels awful.

In my experience with autism, everything flows through with equal force. Life is like a continual sensory storm. A raging flash flood of sensorial data is always pulsing through the marrow of my bones. It’s a never-ending, devastating deluge of chaotic kinesthesia. There’s no sensory spillway; a dam’s not even dug to help control all that’s pouring into me. Everything hits me full on, and I’ve had to learn to sink or swim against the surging onslaught of my five senses.

 

Editor’s note: Lori Sealy and her family live in Sylva, NC. Her husband Phillip is planting Redeemer Presbyterian Church (PCA) there.

One of the questions I’m most often asked by parents of people living with autism (and one of the questions I’m honestly most afraid to answer) is “What does autism feel like?”

My fear comes from two places.

Lori.

The first is that I never want anyone to take my personal experience of living life on the spectrum as being the universal experience of living life on the spectrum. My story is just that — my story, and while there can always be common denominators in the autistic experience, there is also much diversity. That’s why they call it a spectrum.

Dr. Stephen Shore once said, “If you’ve met one person with autism, you’ve met one person with autism.”

The specific ways that autism feels and manifests in me may be very different from the specific ways in which it feels and manifests in someone else. So, I’m sometimes afraid to say how it feels because I don’t ever want to be set up as the “autistic standard.”

The second source of my fear is that there have been some folks who’ve just not been very nice when they’ve learned what life’s actually like for me. I’ve been called “crazy” and “cuckoo” and “a couple of fries short of a Happy Meal.” I’ve been labeled a lunatic and laughed at by those who really should know better. I’ve had people talk terribly about me behind my back — not knowing their words would eventually make their way to my face… and more painfully, to the center of my heart.

Their cruelty has made me cautious, and there have been times when I’ve considered catapulting myself away from this public perch as an autism spokesperson.

Every time I prepare to turn tail and run, I inevitably receive an email from a mom who’s hurting and confused and trying desperately to find one tiny hook to hang her hope on as she battles what is tormenting her child. She asks me to help her understand even an ounce of what her little one might be feeling, and I realize that I can’t allow mean comments or the face of my own fear to silence this story.

So, today I go to that place where I’ve often feared to publicly tread.

What does autism feel like in me? Well, autism often feels awful.

Before I give you some specific examples from my own existence, let me make sure that you understand what autism spectrum disorder (ASD) actually is.

Autism is a neurodevelopmental disorder that is often characterized by varying degrees of struggle with social interaction, verbal and nonverbal communication, sensory processing, and restricted or repetitive behaviors. I’m going to break some of that down for you — at least as some of these things manifest in me — but I want you to recognize that all of the “psychological” manifestations that you see in a person with ASD actually flow out of the underlying neurological system of ASD.

The behavioral chicken hatches out of the physiological egg.

That’s important to understand, because when people with autism seem to be “behaving badly,” it’s often because we’re hurting badly.

The Frayed Wire

I often explain the neurological framework of autism (the framework from which autistic behavior flows) by likening the physiological pathways of the autistic body to that of a frayed stereo speaker wire.

Everyone with autism has some form of sensory struggle. Sight, sound, smell, taste and touch (the five senses that all of the experiences of life must pass through) can be absolutely harrowing and horrifying to a person with autism. Everything that enters the ASD body is often accompanied by some semblance of pain or at least by some extremely uncomfortable sensation. Here’s where the analogy of the frayed wire may help you understand autism a bit better.

When you go to your stereo and turn on the tunes and all is working well with the speaker wire, then the sound is sweet, crisp and clear. You hear what the artist and producer intended for you to hear — and it’s a good and pleasant thing.

However, if your speaker wire has a short in it, if it’s frazzled by a fray, then things might not go so well, and a clear connection could be lost.

There are moments when that frayed wire may be in the perfectly placed position to still allow really solid sound to pass through. In that moment, the music is coming through loud and clear and you get to enjoy the groove.

But then something shifts — even just a little, and suddenly that worn wire produces static (and maybe even sparks). The music’s still there, but with it is another competing noise — a sharp and crepitating noise — a noise that’s taken something pleasant and made it painful.

All of a sudden something shifts again, and everything has gone from simple static tooverwhelming and excruciating white noise. In the chaotic cacophony you find yourself reaching for the volume control in order to mute the mess because it hurts.

Then things shift once more and the frayed wire is now in a position where nothing’sgetting through. The connection has been lost and all is silent. The stereo itself is still making a melody, but that melody is trapped inside the machine and unknown to anyone on the outside.

Welcome to autism!

Our neurological wiring — the “speaker cable” through which the five senses travel within us — is “frayed.”

At one point we’re positioned so that the things of life are coming through clearly and we may almost seem OK and maybe even “normal” — our melody might momentarily sound marvelous.

Then the wire wiggles and begins to produce some static — and we become confused and stressed because we’re trying to hear the “tune” of our surroundings over and against the torture of the snap, crackle and pop of the crimped cord.

Suddenly the wire is all static and we’re utterly undone — because the racket is just too much to bear and we’re suffering from the neurological distress.

And then there are those times when the connection gets completely cut and we find ourselves disconnected from the music and meaning of life. The tune is still in our head — we just can’t get it out for you to hear.

The “frayed wire” that is autism is not a pretty place and is often a painful place.

I’d encourage you to remember this analogy when you see a person with autism struggling with a shutdown, or a meltdown, or an absolute disconnect to his or her environment. The neurological wire’s not working well. We’re not “insane” — we’re in pain!  Please have some mercy in the midst of our malady, and show a little compassion to us (and to those with us) as we seek to navigate the nightmare.

My Own Experience With Autistic Angst

The personal pieces of how autism’s “frayed wire” fleshes out in my daily existence, well, those are varied and would take a lot of time to walk you completely through — but I’ll give you a glimpse and will trust that you’ll love me and not laugh at me as I un-bear my burden.

My hope is that this will help you understand a bit more about life with autism, and that as your understanding increases so will your heart for those who are hurting — no matter how they hurt.

Where the sensory is concerned, much of my life has been lived without filters attached.  For many people, the brain naturally sifts and separates visual, auditory, olfactory and tactile information. Your brain is able to decipher and discern what’s important to focus on and set aside that which is less relevant at the moment.

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