I hear a lot of things from a lot of people after a concert. Usually it’s about the music, the message, my story, their story... and ultimately how my story connects with their story. People have lined up to talk for hours along this little "Begone Unbelief" tour, and most of the talk has been encouraging. Many want to talk about autism and I’m thrilled to do so - if our talking will help produce understanding for those who know little, and encouragement for those who (by experience) know too much too well.
Several months ago 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 had been struck by her posture and deep intensity as she patiently 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 her moment arrived she immediately stunned me with these words:
“Wow! I would never know there was something wrong with you! You just don’t look like there’s something wrong with you! I’d never have guessed there was anything wrong with you!”
She repeated various forms and fashions and facets of that phrase throughout our brief encounter.
Honestly, I didn’t quite know what to do or say in response. I wondered if perhaps I should drool, or twitch, or start stimming on the spot. (Truth be told I was stimming on the spot as my toes were working their way through the floor of that foyer - a concealed coping method I developed as a child to keep me moored to the moment and to stop me from doing the desired gesticulations that I feared would bring certain ridicule from the watching world).
What I finally said in response was something like: “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 was anything wrong with you” that slipped out of her well meaning mouth before she exited the building!
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.
Dr. Mike Emlet,(MD and author with CCEF) in talking with my counselor about my case wanted her to know how difficult it can be for those of us who live on the "upper echelon" of the autism scale 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.
I often wonder if it’s hard to find that understanding because of generalized assumptions on how people think autism is "supposed" to outwardly look. Couple those assumptions with what I call the “mist of appearances” that sometimes shrouds the reality of disability for those of us who live on this spectrum spot and you have a foolproof formula for misunderstanding.
Not too long ago I had a brief correspondence with a professional who works with children with disabilities, many who live with autism. I had posed a couple of questions to her looking for some insight on a particular issue. The response I received was a bit disheartening.
Rather than answering my question I was informed that there is no such thing as "high-functioning" autism. She sincerely believed the term was a misnomer and went on to tell me that “autism is not autism without real disability”. She then sent me to a website that would attempt to prove her point. (Sidenote: it didn’t.)
I have run across this opinion on several more occasions since and, as one who lives with this disorder every moment of every day, I am always stupefied by this point of view.
It appears that an assumption is made (at least in my circumstances) that because I seem pretty “normal” - because I can look you in the eye (a trained response that I practiced painfully in group settings as a very young child), speak somewhat soundly, reason rather rationally, and carry on a fairly fluent conversation - I don’t have a “real” disability, most assuredly not the disability of autism.
In spite of neurologists, general practitioners, psychologists, psychiatrists, and diagnosticians from the Autism Society all firmly standing behind my official autistic “label” I’ve had people (even pastors) poo poo the whole idea of my being autistic, because I don’t look like their picture of autism. I don’t fit their mold. I don’t ascend to their assumptions.
I fear their picture is false and I write this post because I believe it may be time to clear up “their” image of autism – or at least funnel out some of the fog.
I write because I am encountering a growing number of diagnosed “higher functioning” folk (particularly females with autism – and that’s a whole separate can of worms) who are finding themselves “pretending to be normal” and later faltering in their facade. We seem to be stuck singing the outward chorus of coping for the crowds while suffering through the silent solo of sorrow all alone once the public curtain falls. 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 that those of us who do indeed live with this neurological malady in its “higher functioning” form live through the same hellishness that our “lower functioning” compatriots live with.
Regardless of our spot on the spectrum, we all (yes, me included) have serious social struggles, communication quandaries, internal neurological manifestations, and external neurological aggravations. We are often physically undone by the sensorials of sight, sound, smell, taste, and touch. We are often psychologically overwhelmed by past memories that are deeply detailed and frighteningly photographic, and by present moments that are sometimes self-doubted and called into question because of the neurological disconnect of the frayed wire by which our 5 senses travel. The struggle to properly filter and funnel the 5 senses can cause our brains to never seem to fully set foot in the here and now. The wild neurological wiring of autism has caused many of us to feel as though we've never truly lived a moment nor ever really escaped one. (That one phrase is a blog or a book all its own.)
That “more severely disabled” one whom you see in the store, or at your school, or in your church is, at moments, “me” (yes, "high functioning" Lori) behind closed doors.
When I leave that concert setting, after having publicly played and privately engaged all those lovely listeners in conversation (the ones who can’t believe that anything is wrong with me) I will crash.
I may go catatonic in my car.
I may wilt against my wall.
I may break in my 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.
Somehow, I've learned to read myself and can generally discern when I need to exit a public setting and escape to a private one in order to avoid being caught in the embarrassment of my autistic nightmare. That has been my life since age 8. My extreme ("savant" labeled) coping mechanisms have carried me a long way, but they only go so far. My coping comes at a cost - a hidden cost, but still a high cost.
Those head hits you see in your “low functioning” loved one with autism? ... been there (since I was a child), done that (throughout my young adulthood), still do it (even as I meander through middle age) when the neurological nightmare goes napalm. It’s like a pressure release valve from the physiological autistic angst.
The petite mal moments, rhythmic rockings, and faint forms of menacing mutism you see exhibited by that soul who struggles with more obvious forms of autism? ... you’d 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!). In the center of my being I feel you chewing your food at another table in the restaurant. I am struck by every scene of every sight in damningly detailed ways - physically feeling every object that my eyes behold as the sensory wires of my nervous system criss cross in almost maddening morphings, and as my autistic memory stashes that newly "filmed" frame in the files of my brain bank. I feel your handshake and hug from the inside out (as if my skin was removed), and the marrow of my bones burns from the firestorm of the five senses. Every ounce of every inch of my body is continually battling this behemoth.
It is undoing.
It is unrelenting.
It is autism.
How thankful I am for the grace that has kept me thus far... and for the grace that promises to lead me home!
So, one soul said: “Wow! I would never know there’s something wrong with you.”
Another uttered: “There’s no such thing as high-functioning autism because autism isn’t autism without real disability.”
Their words make me wonder, is there something “wrong” with me?
Do I have a real “disability” amidst all of my crazy coping ability?
Is the "high functioning" banner just a bunch of bunk?
Silly semantics and awful assumptions aside, the truth is I live with autism. Yes, some label 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 those who live with my malady – in whatever form it falls. 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.
Beloved, please don’t assume that “high functioning” is synonymous with ”fine functioning.”
We 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!” Truth is, all autism is bad and those well-meaning words may simply cause your friend to crawl further into his or her coping cave (an often lonely place).
Please trust me, autism – however the autistic malady manifests - is hard and hellish much of the time and its disability (even in its oft hidden “higher-functioning” forms) is daunting.
There is a reason that those who live with autism are said to be 28xs more likely to commit suicide than those who don't** (a struggle I've known all too intimately and far too often). Let me simply say that it ain’t because autism is a pleasant walk in a placid park! It’s because autism – all autism - is awful. (Please know that I write that not as a plea for a pity party. My God has been kind to carry me through this storm, and I am so grateful for His grace. His mercies to me are new every morning and His faithfulness is great in every moment. I write it simply as a fact – a fact that needs to be known: autism is awful!)
If you made it this far may I say thanks for reading my rant. :) My prayer is that my cliff-note confession of my own disabilities will be used to spark you to want to know more, and understand more about my spot on the autism spectrum (as well as all spots on the spectrum). From that understanding may we learn to love more intentionally, live less assumptively, and labor more effectively among those in our midst who face the affects of autism.
May my concert conversations continue and may your own banter begin.
permission to share is freely granted
You may also enjoy Interviewing Autism
**stats from a March 2013 study done at Penn State University. You can read more on the struggles of suicide and ASD at the links below. (Please know that I am not endorsing all of the statements and opinions in these articles, but believe this is an important issue for consideration. I equally believe that Jesus Christ - His promises, precepts, and propitiation - holds the greatest cure for this part of the autistic curse. He truly has in my own.):
Suicidal Thought Alarmingly Common in People With Autism
New Research on Autism and Suicide
The Growing Concern of Suicide and High Functioning Autism
Autistic Children 28xs More Likely to Be Suicidal
Clinical Features of Suicide Attempts in Adults with ASD
Adults With ASD at Greater Risk of Suicidal Thoughts