Tuesday, August 6, 2013

A Cliff Note Confession From the Land of "High Functioning" Autism

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.

By grace,
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


  1. Lori, this was a fantastic post! This phrase "love more intentionally, live less assumptively" - beautiful, and so very true. From the NT side of this, it's been frustrating to see the misconceptions unfold in judgemental behaviors or unkindness. Particularly when my younger kids who have 'high functioning' autism are accused of being 'lazy' or having severe 'behavior issues' when behind those eyes there is a great deal of confusion, pain, or frustration to communicate and be understood.

    I appreciate your insight and patience. Your constant heart to educate, even in the midst of your rant :-)

  2. Wow Lori...I can relate so much of this post.
    "Pretending to be normal"
    "Crashing behind closed doors"
    And these lines....

    "We are neurologically undone by the sensorials of sight, sound, smell, taste, and touch. We are psychologically overwhelmed by past memories that are deep and photographic, and by present moments that are often doubted – doubted because of the neurological disconnect that causes our brains to never fully land in the “now”.

    You know Lori, those pits we go into that seem so dark and like they will never end, I just thought everyone was like us. I didn't ever have any friends to talk to about this. Meeting other women on the spectrum has opened my eyes. I do still try to fit, try to be "normal" but I don't push myself so much these days, not now I know. I'm learning to re-treat before I shutdown. Also learning that God will get me back out when I don't recognize I'm becoming overloaded.
    Thank you so much for sharing this.
    Love and hugs. Lisa. xxx :)

  3. Hi Lori
    I sound so much like you write: sensory overload, feeling other peoples smiles, shivers and body movements as though they were my own.
    Trying to live but just not getting it.
    Wanting to run away from all social interaction to a safe place.

    Please contact me if thats convenient.

  4. No words, at least not any that fit what I want to express. This is piercing and important and my own life story. I didn't think anyone understood. Thank you.


  5. Lori,

    I just read this thanks to seeing a "like" on Facebook. My adult daughter has high functioning autism and this blog post was such an encouragement to me as a parent. She has struggled her entire life. Her ability to cope, to a degree, in public led to so much misunderstanding of how much she really struggled. She attempted suicide twice in high school and has always talked about how she feels so separated from actually being a part of this world. She's faring decently at the moment but the struggles you describe are how she lives. Thank you for drawing people's attention to this issue. Your challenge that we would love more intentionally, live less asumptively and labor more effectively is spot on. Let it be so. And, I went and listened to some of your music. It is beautiful.

  6. Lori,

    Too often, we are quick to judge as to what is ‘NORMAL’ behaviour by the standards that are set by the ‘wise’ of this FALLEN world.

    The SOLE judge of what IS normal is almighty God - and the ONLY normal man is Jesus Christ - so God has set Him to be the cornerstone of the building [the Church] - EVERYTHING being measured/judged/compared to God’s datum - Jesus Christ ALONE. One example of ’NORMAL’ that Jesus Christ has given us is “You will KNOW My disciples by the LOVE that they have, the ONE for the OTHER”.

    I have a low functioning autistic nephew [who is in his forties now] I love his soul as I love my own. By looking into his eyes when I go visit with him [albeit for brief flashes of time] I see his acknowledgment of the love I have for him - the gratitude that flashes back to me from the windows of his soul. He is, [because of his love] NORMAL - to me - I know he has terrible struggles as he tries to communicate with others only using sentences of four or five words [not to mention all of his other battles] but the bond of pure unfeigned love is PERMANENT, and ABSOLUTELY secure - by/through/because of it - we are ALL going to put OFF/AWAY from us: that which is corruptible [any day now] so let us all dwell together in unfeigned LOVE - as LIVING stones, being firmly attached to the corner stone - the ONE body - of Jesus Christ.

    LOVE is the ONE thing that will MAKE us NORMAL.

    God is LOVE, LOVE is everything, faith works through LOVE, salvation comes [was born] from LOVE - LOVE is NORMAL

    “Beloved, NOW are we the sons of God, and it doth not YET appear what we SHALL be:but we know that, when HE shall appear, we shall BE like HIM; for we shall see him as he IS. And every man that HATH this hope IN him PURIFIETH himself, even as HE is pure”.

    love, in Christ, Paul S

  7. My 24 year old daughter has high functioning autism. One of the difficult things I see her facing is the reaction of others to her. People tell her to just stop her weirdness. They don't understand that many of the weird things she's doing is because she's having a hard time processing. Honestly they don't seem to care. She has talked about how much living hurts and in a physical way, not only in an emotional way. I wish I could help her, but I really can't. I can love her though and I can try to be an advocate for her and for others like her.

    I've read through all of your articles and I can't thank you enough for being a voice for autism. People need to read this. People need to listen. My daughter needs people to hear this. As her mother I need people to hear this. She has said on so many occasions that she wishes she could end her life, but she says she knows that's wrong so she keeps going. I'm praying that she is able to keep on going and I'm praying that once I'm gone there are others who will keep walking this hard road with her.