The Angst of Autism: "How Does Autism Feel In Me?"

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.  

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 are always 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 want to ever 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 that their words would eventually make their way to the front of 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 the autistic beast that 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 men 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 in me 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 neuro-developmental disorder that is often characterized by varying degrees of struggle with social interaction, verbal and non-verbal 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” symptoms  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 - it could be hyper sensitivity, it may be hypo sensitivity.  Sight, sound, smell, taste and touch (the five senses which all of the experiences of life must pass through) can be absolutely harrowing and horrifying to the person with autism. For many, 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, and 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 to overwhelming 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’s getting 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 dying 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 unbear 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 most 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. 

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 … doggone it, a dam's not even dug to help control all that’s pouring into me. Everything hits me full bore on and I’ve had to learn to sink or swim against the surging onslaught of my five senses.

Where sound is concerned, the voices and vibrations of this world are always pounding upon me. Life is LOUD!  This can make carrying on a conversation in a room full of people a true challenge – because I hear everything at equal volume. My auditory abilities are often extreme.  In that room, I hear your hair.  Yes, you read that right.  In a room full of people I literally can hear when someone’s hair moves in the wind or when they brush their fingers through it.  In that room as you and I are trying to talk, I am hearing everyone else’s conversation as clearly as our own (along with their hair!!) - and that’s a confusing thing because which words am I supposed to be interacting with as we chat?  Take that scenario and apply it to the classroom, the park, the church, or Wal-Mart.  It can be absolutely overwhelming!

As a young child I was barely able to eat in front of others (many assumed I had an eating disorder) because of the pain I felt when someone’s fork touched their teeth.  In a restaurant I was always undone because not only did I hear multiple food implements on everyone's incisors, but also all of the kitchen noise, and chewing, and swallowing, and breathing, and the transfer of change at the cash register, and the hum of the fluorescent lights, and everyone's clothes making contact with their chair (oh yes, and their hair!) ...  on and on and on it goes.  

The amount of auditory information that my brain was processing was overwhelming and it usually resulted in a panic attack – even at the age of 8.  Everything that I heard hurt – it still does. By grace, though the years I’ve been able to develop some coping skills that now allow me to survive a bit better - or sneak away when I know I can't.

My visual experience is also rather radical.  Like many on the spectrum bright light can be painful – honestly, any light can be painful and I often compensate with sunglasses. I can also get overwhelmed by the sheer amount of imagery that my mind is attempting to process at one time. I take in everything in a panoramic sense - and that sometimes makes it hard for me to focus on the central thing I'm supposed to see.  I've found that wearing a ball cap helps me filter, by force, that which is crashing in by flood - it works in the same sense that "horse blinders" do at the race track.

One of the unique and challenging aspects of ASD for me is that my neurological wiring has an odd criss-crossing of visual and tactile.  I feel what I see.  When I look at a tree I literally feel the bark. When I see a wall or a chair (or your hair) my body senses its surface. When I read a book I feel the page. The same is true when I see your face, yes, I feel your face … which is one piece of the problem that some with ASD may have with looking others in the eyes.  

Take a moment and look around.

Think about what it would be like to feel everything your eyes see.  

Welcome to my world!

My panoramic vision and the accompanying deep memory vault that is often part of autism have an interesting correlation. I view life in pictures and my brain categorizes and catalogs all that I see.  

Everything I look at goes into what I call the mental “file folders” of life.  Things are subconsciously stored in my mind, in vivid detail, and under specific headings – I’m not able to always call things up on command, but I regularly experience a meticulous mental “finger flipping” through the files of past experience when I enter a similar situation.  

For example, when I walk through the door of my house my mind flips through the pictures of every other time I’ve ever walked through the door of my house. It’s an involuntary visual occurrence that at times can be overwhelming.   When I grab a shirt out of the closet I re-live where it came from - even down to the rack at the store where I found it and what other shirts hung near it, as well as all the other times I've worn it. 

I may sit down for a haircut and in a matter of moments re-live every other hair cut I’ve ever had (in great detail … the number of combs or brushes on every counter, the pattern of the tile, the position of the pictures, the people congregating for a coiffure).  The same could be true when I go to a drive-in window, play a piece on the piano, or see you in the grocery store. Please realize this if I seem startled when I run into you somewhere - I may be re-living our entire relationship!

One tough aspect of that deep “file folder” memory, as it’s coupled with the disconnect of autism’s frayed neurological wire, is that sometimes it can be hard to moor myself to the current moment. There are times when I have to fight my autistic physiology in order to determine which picture I'm seeing is the current picture. Which image is the here and now? Is this scene of life “live or is it Memorex?” 

In light of this reality, I sometimes feel like I’ve never fully lived a moment of my life (the frayed wire) nor ever truly escaped one (the visual file folders).  And that can be really hard at times. 

Where touch is concerned, I often physically feel things from the inside out.  When you touch my flesh the first sensation that I have is from the center of my bones – and it can be rather fiery - anything from a dull burn to extreme electrocution. That feeling then flows backwards to my skin, at which point it’s usually not quite as painful.  

Often when someone shakes my hand, or pats me on the back, or kisses me on the cheek I will feel that sensation for at least an hour before it fully dissipates.  

Clothing can hurt to wear.  

Sheets can hurt to cover up with.  

The most intimate forms of affection can be a great affliction.  

There are times when the internal terrorism of the tactile makes me want to rip my bones from my body – which is one of the reasons you’ll often find those of us with autism engaging in some form of stimming (rocking, flapping, finger flicking) – it’s our attempt to counter all that is caustic.  (More on stimming soon.)

Because I speak and sing for a living,  people are often shocked to learn that I struggle with issues of communication – verbal and non-verbal.  

My verbal abilities have been honed through years and years of hard work (my mom used to drill me on the practice of public speaking over summer break). In spite of the success in overcoming my struggles, throughout my life there have been many seasons of selective mutism.  Honestly, in certain settings there are still those moments of selective mutism, because I know the “wire” isn't working well and that my attempts to talk aren't going to end well. So, I simply don't talk. To me, silence has always been a virtue of self-survival.

When I do talk I constantly coach myself in order to make my mind and my mouth correctly connect.  Speaking is not an unconscious or habituated thing for me (really nothing is a habituated thing for me because I think through every action in great detail). 

My talking to you is an exercise in extreme self-control and a labor in almost Nietzschean "will-to-power",  which can be exhausting -  and which is one of the reasons that I can only endure so much conversation before I have to bail. (Sometimes I realize I can come across as a little bit rude – it’s because I’m worn slap out from words.That's no excuse for sinful behavior, but perhaps it will help you understand my struggle with that behavior.) 

Because my mouth and my brain don’t always work well together,  I have found it much easier to allow my thoughts to fly from my fingers than to leap from my lips.  That part of my “wire” isn’t nearly as frayed, and is definitely my preferred form of communication.

Where the non-verbals are concerned there are so many stories.

As a young child I spent hours in front of the mirror teaching myself how to really smile.  Even now, there’s a “director’s voice” in my head where I walk myself through which learned facial expression is the appropriate one for the moment. My vault of “file folders” is part of what now helps me read other’s expressions accurately – I automatically pull up other encounters with laughter, and sadness, and seriousness and then apply that “photograph” to the current event.  (Are you beginning to get a glimpse at how exhausting autism can be? I don't even smile at you without work.)

I also trained myself to look people in the eyes at a young age.  From my earliest days I can remember my neck shaking and my head drifting down when someone’s eyes would “touch” my own  (an eye “touch” is what it felt like, and it was incredibly uncomfortable - it was moist and squishy and made my skin crawl).  

As an elementary age child, I forced myself to sit in class and stare the teacher down from a distance.  When my neck would begin to shake and when my eyes started to drift I would push all of the pressure of my neck muscles down through my body and into my toes – establishing a form of muscular “toe transference” that I still use to this day as a primary form of autistic coping.

I could talk to you about so many other things … strong seizure like moments where my brain seems to shake in a violent fashion or petite mal periods that steal away sections of my day.  I could discuss why at times I hit my head (and that conversation is coming), why running is almost impossible for me, how monocular vision may possibly be playing a role in my inability to determine depth, and how hard I’ve had to work to learn to develop empathy for others – because emotional understanding, for me, has been an autistic anathema that only the mercies of Christ have helped me overcome.

What does autism feel like? 

In me, it feels like all of this and more. 

What words will ever adequately explain? 

I know them not. 

What I do know is that through every autistic “danger, toil, and snare” through which I’ve already come, “'tis grace has brought me safe thus far, and grace will lead me home.”  

In that grace – in the God of that grace – I find a sufficient salve for all of my autistic suffering. And as I've given the smallest glimpse into my own version of autistic angst I truly pray that you have increased in even the smallest sense of autistic sympathy!

Much love,
Lori