A Cliffnote Confession From My Spot on the Spectrum
As a traveling musician, I hear a lot of things from a lot of people after a concert. Often it’s about the music, the message, my story, their story… ultimately it’s about how my story connects with their own.
People have lined up to talk for hours along this latest tour, and most of the talk has been encouraging.
Many want to discuss autism, and I’m thrilled to do so – particularly if our talking will help produce understanding for those who know little, and encouragement for those who (by personal experience) know too much too well.
A while back I had a rather (shall we say) “interesting” conversation with a concert attendee. She was in line to get a CD and an autograph. I’d noticed her straining posture and intense focus as she waited her turn. She was clearly watching me – examining my every move, studying my every word, and she seemed puzzled. She seemed extremely puzzled.
When our moment to meet finally arrived she startled me with these words: “Wow! I would never know there’s something wrong with you! You just don’t look like there’s something wrong with you! I’d never have guessed there’s anything wrong with you!”
She repeated various forms, fashions, and facets of that phrase throughout our brief chat.
Honestly, I didn’t quite know what to do or say in response. I wondered if perhaps she expected me to twitch, or twinge, or spontaneously stim on the spot. (Truth be told I was stimming on the spot as my wiggling toes attempted to work their way through the floor of that foyer – a concealed coping method I developed as a child, one that helps me not outwardly flap and flail with the awkward gesticulations that can sometimes bring ridicule from the watching world).
What I finally said in response was: “Uh… thanks…um …I think.”
I then proceeded to try and enlighten her a bit about life in my autistic shoes. The conversation ended positively – though I’m pretty sure there was at least one more “Wow! Who’d’ve thought there’s anything wrong with you?” that made its way from her well-meaning mouth.
I reference that event because I am finding a trend in my own experience as well as in the experiences of others who live life on the “higher functioning” side of the autism spectrum – a trend of misunderstanding.
Dr. Mike Emlet (of CCEF), in talking with my counselor about my case wanted her to know how difficult it can be for those who live on the supposed “upper echelon” of the autism spectrum to find real understanding from our fellow man. Boy, Mike wasn’t just whistlin’ Dixie, and I have a near novelette of tales I could tell from my own experience with this difficulty.
Perhaps it’s hard for folks like me to find understanding because of broad sweeping stereotypical assumptions about how autism outwardly looks. Then, couple those broad sweeping assumptions with what I call the “mist of appearances” – the covering and camouflaging ability that often shrouds the disability for many “high functioning” folks (particularly female folks), and you have a foolproof formula for misunderstanding.
Several years ago I had a correspondence with a professional who works with children with disabilities, many who are on the spectrum. I had posed a couple of questions to her looking for some insight on a particular issue. The response I received was disheartening. Rather than answering any of my questions, I was told there is no such thing as “high-functioning” autism because “autism is not autism without real disability.” She then sent me to a website that would attempt to prove her point. (Side note: it didn’t.)
Sadly, I have run across this opinion on many occasions since and, as one who lives with this disorder every moment of every day, I am always stupefied by it.
It would seem that an assumption is made (at least in my circumstances) that because I appear pretty “normal” – because I can look you in the eye (a trained response I practiced painfully in group settings as a very young child), speak somewhat soundly, reason rather rationally, and carry on a fairly fluent conversation (things that I have worked my tail off to accomplish and things that take more exhausting effort than I can adequately explain) – I can’t have a “real” disability, most assuredly not the real disability of autism.
In spite of neurologists, general practitioners, psychologists, psychiatrists, and diagnosticians from the Autism Society all standing behind my official autistic “label” I’ve had people poo poo the whole idea of my being autistic, because I don’t look like their picture of autism. I don’t meet their mold. I don’t fit their formula. I don’t connect with their conjectured criteria.
I fear their perceived picture is false, and I write this article because I believe it may be time to clarify that image of autism – or at least attempt to funnel out some of the fog.
I write because I am encountering a growing number of people diagnosed with “higher functioning” autism who are, as Liane Willey so brilliantly coined, “pretending to be normal” and who later falter under the façade. Many of us seem to be stuck on some societally structured stage, caroling the outward chorus of coping for the crowds, only to withdraw to our private “green room” where we find ourselves singing the solo of autistic sorrow – isolated and all alone once the public curtain falls. After the “show” we are crashing behind closed doors with the dark depth of our disability – and since few see it, few believe it.
Friend, if you are reading this, please know those of us who live with this neurological condition in its supposed “higher functioning” form really do face many of the same challenges as those precious souls with more “obviously seen” autism do.
Regardless of our spot on the spectrum, all people with ASD have various social struggles, communicative quandaries, internal neurological manifestations, and external neurological aggravations. At times we wrestle to relate with others, and may find it difficult to dialogue amidst the confusion of conversation. Many of us are physically undone by the onslaught of sight, sound, smell, taste, and touch as the five senses attempt to travel through the “frayed wire” of our atypical nervous system. We can be unexpectedly overwhelmed by the unplanned instant replay of multiple memories flowing out of our deeply filmographic minds. (It would seem that for some of us there is a pictorial Pandora’s box of our entire lives existing within our brains.) The struggle to properly filter the incoming chaos of the five senses while simultaneously seeking to properly funnel the internal bombardment of Pandora’s pictures can befuddle us and send us into extreme shutdown.
Believe it or not, that “obvious” disability you see in someone at the store, or at your school, or in your church is, at many moments, me (yes, Lori Sealy) behind closed doors. When I leave that concert setting, after singing my songs and sharing stories with all of those lovely listeners (the ones who can’t imagine anything is “wrong” with me) I will crash. I may go catatonic in my car. I may wilt against a wall. I may break in the bathroom. It will happen. It has happened for decades – you just didn’t know it because I was scared to talk about it and ashamed to let it show.
Those head hits you see happening in your loved one who’s been (perhaps uncompassionately) labeled with the “lower functioning” moniker? – been there (since I was a child), done that (throughout my young adulthood), still do it (even as I meander through middle age). I’ve banged my head in hopes of halting the hurt. It’s like a pressure release valve from the physiological fire storm.
The petite mal moments, seizure-like movements, repetitive rhythmic rockings, and forms of frustrating mutism you see exhibited by that precious soul who struggles so severely? – you’ll find them equally true of me when I slip out of your sight.
Those searing stimuli sensations that so many on the spectrum fight through and faint under? – I war with them too. I hear your hair move in the wind (no, really, I do!), and it crinkles and tinkles in my brain. In the core of my being I feel you chewing your food at another table at the far end of the restaurant, and it makes it hard for me to swallow. I am inundated with physical sensations from every sight I see – actually feeling each object that my eyes behold as the visual and tactile wires of my nervous system mysteriously criss cross. A simple touch, hug, or handshake can cause the marrow of my bones to burn. Every ounce of every inch of my body is continually battling this. It is undoing. It is unrelenting.
After a concert one soul said, “Wow! I would never know there’s something wrong with you.” In an email another uttered: “There’s no such thing as high-functioning autism because autism isn’t autism without real disability.”
Their words can make me wonder: Is there something “wrong” with me? Do I have a real “disability” amidst all of the “super powers” of my coping ability? Could the “high functioning” autistic banner just be a bunch of bunk?
Silly semantics and awful assumptions aside, the truth is I live with autism. Yes, they call it “high functioning” autism but they still call it autism. See it or not, there truly is a lot of real disability that dwells inside of me, and inside all those on the spectrum. Some of us just hide the disability fairly well – and perhaps part of the hiding for many of us comes because of the assuming from some of you.
Dear reader, please don’t assume that “high functioning” is synonymous with “fine functioning.” Some of us work harder than you can ever fathom to get through every minute of every moment.
Please don’t tell your “higher-functioning” friend – “Hey, at least you don’t have it so bad!” The truth is, all autism has challenges, and those well-meaning words may simply cause your friend to crawl further into his or her coping cave (a terribly lonely place). Please trust me, our challenges can be hard and horrible much of the time, and this disability is often daunting.
There is a reason those who live with autism are said to be more likely to struggle with suicide ideation than those who don’t – a struggle I’ve known all too intimately. A struggle that flows from the fact that some aspects of autism can be awful. (Please know I write this not as a plea for a pity party, I have been met with much mercy in spite of my condition, and for that I give thanks. I write it simply as a fact – a fact that needs to be known.)
My earnest prayer is that this feeble cliff-note confession of my sometimes unseen disability will be used to spark you to want to know more and understand more about this “high functioning” spot on the spectrum – as well as all spots on the spectrum. All of these spots matter. From that increased understanding may we learn to love more intentionally, live less assumptively, and labor more effectively.
May my concert conversations continue, and may your own banter begin.
Follow this journey on LoriSealy.com.
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