Friday, April 25, 2014

Interviewing Autism (A Christian Perspective) - Part 2 - Living With Autism: An Overview of Autism as It Manifests in Me

Previous Link
Part 1: Interviewing Autism - "An Introduction to My Life, Conversion, & Diagnosis"

Autism covers a wide spectrum of symptoms. Can you describe your own experience of it?  Thank you, David, for bringing up the idea of the wide spectrum. This is a crucial point to consider if our conversation here is to be truly helpful.  It is crucial because I will be speaking to you from my spot on the spectrum and not presuming to speak for all spots on the spectrum. It has been said that “if you’ve met one person who lives with autism, you’ve met one person who lives with autism!"  I take that a bit farther and say, “ if you’ve met one of us on Tuesday, just wait, Wednesday’s coming and something will probably be different with us then!”

The variables between those of us on the autism spectrum are vast and thus my story and my experience may differ greatly from another’s. (I am by no means the standard bearer.)  Along this spectrum you’ll find such “labels” as autistic disorder, rett syndrome, Asperger’s syndrome, childhood disintegrative disorder and pervasive developmental disorder not otherwise specified (PDDNOS).  You’ll find folks with autism who are non-speaking, others who are very verbal, and some who can’t talk but can type up a tantrum. There are the mathematically minded and then there are those to whom math is an utter anathema, but who can slice and dice words like a mental meat grinder.  There is a multiplicity of diversity, but there are some common denominators as well.

To some degree all of us who fall on the autism spectrum have struggles with social interaction and communication. There are behavioral characteristics, such as stimmings (i.e., repetitive body movements) and sensorial issues of sight, sound, smell, taste and touch.  Typically there are also profound and often very narrow areas of interest.
I fall into the “higher-functioning” realm of autism.  At times I think that the labels may do more damage than good because it is often assumed that the person with “high-functioning” autism doesn't have any true disabilities. That errant idea is often drawn from the fact that the “higher functioning” person on the spectrum appears more “normal” than autism is typically presumed to be.  Truth be told, in one like myself the disabilities usually just lie somewhat hidden from public view due to extreme coping and covering mechanisms that have been concocted for the sake of survival in a neuro-typical world.  Often, the one living with “high-functioning” ASD will publicly hold on at great lengths until they retreat to the privacy of their own home or car, and then all that has been stuffed and stifled in the arduous attempt to look like everyone else (to act and interact within the “film” of life) erupts with volcanic violence.

As much as I hate to admit it, I have often resorted to privately hitting my head against the bathroom wall, exhibiting facial tics and other forms of dyskinesia, rocking back and forth (which is a type of choreoathetosis), and even entering an almost petite mal like state after having endured an extended period of seeming public normalcy.  These are the very things that my more severely labeled “lower-functioning” kinsmen may do in the classroom, grocery store, or worship service – to be seen by all.  Somehow, folks like myself just cover it better – though I’m not sure that in our covering we have truly helped ourselves as much as we have simply saved ourselves some embarrassment.

In my life, autism shows itself in three primary areas (referenced earlier in the interview): external behaviors, internal manifestations, and areas of extreme giftedness.  Those are the “official” terms used for me in the clinical paperwork. I often just sum them all up under the categories of the blessings and curses of living with autism!

In the curse category, like many with ASD, I am deeply affected by sound.  As a child I suffered from paralyzing panic attacks for many years when eating in a public setting (at times even the “public” setting of simply eating at the home dinner table with only a few others).  The sound of chewing and of the silverware touching teeth or dishes was physically excruciating.   The noises of appliances in the restaurant kitchen and the cursed cacophony of the conversations of others (all of which I heard in great detail) served as severe sources of “shut-down” for me.  As a child, this “shut down” was so extreme that I was unable to even swallow my food in those maddening moments, so I just stopped eating (leading some to think I was anorexic). In high school I rarely actually ate lunch because of these things, preferring many days to sneak off and lose myself in playing the piano on the stage in our school gymnasium.

You must understand that autism is often like living life without any filters.  EVERYTHING gets through to us and thus everything can begin to clog up in us, to poison us neurologically, and to cause great pain and deep internal angst. 

Many of the places that you think nothing of entering take much mental prep for me and for those like me. For example, I have had to train myself to function in grocery stores and large retail chains like Super Wal-Mart because of the overwhelming roar of the freezers and refrigeration devices. Even the buzzing of the fluorescent lights can be crippling and the sounds at the register…well, there are not adequate words for those blasted “beeps!”

There have been many times when I’ve had to just bolt from my buggy (half-way through a shopping trip), exit the building, and find my way to my car in order to wait and “reset” because I realized I was about to crumple in the confusing chaos of that place.  (That “reset” usually doesn’t include returning to the store on that particular trip because at that point I am physically too far gone to be able to. It simply means finding a way safely home until my body is able to properly process the sensory issues of that overwhelming environment. Then I go back to get my groceries.)

These are such brief and absolutely inadequate examples, but perhaps they may explain to the reader why children with autism sometimes appear to be throwing a temper tantrum in the local supermarket or big box hardware store – in reality they are in internal turmoil and torment and are trying to find a way of escape from the neurological nightmare.  Please be patient with us, we really are in pain.

Physical touch can also be a harrowing experience as it seems, at times, to set off an electrical burning in the marrow of the bones and throughout the central nervous system. I’m not much of a “hugger” - though if I know that a hug is coming I am able to prepare and pull it off with some success and sometimes even with some pleasure. The brushing of hair, shaking of hands, a pat on the back, or an affectionate scratching of the skin often hurts in a fiery fashion.  Night time can be a trying time due to the tactile issues with sheets, the weight of the covers (which can be positive or negative), the wrinkle of pajamas, even a grain of sand somewhere on the bed. (By the way, I'm pretty sure that "Princess and the Pea" chick HAD to be on the spectrum!!)  In all of these moments I often wish that I could turn my insides outside and rid myself of every nerve ending!

Clothing choices can be a deep source of physical pain. For me, the weight and binding nature of layered clothing can be raw and torturous. Certain materials are menacing and there are days where I may have to peel and unpeel the clothes I’m attempting to wear numerous times before finding the fit that I can endure. (Phillip has found me staring hopelessly at my closet numerous times, because I know that whatever I put on that day is going to hurt.)

The place where this reality of torturous touch saddens me the most is in the area of marital intimacy – an area my dear husband and I must continually labor to communicate about and work through.  I am thankful for a patient man, who loves me dearly and is willing to work through and talk through these things that we might both grow better instead of bitter along the (at times) painful path that has been carved out for us. Please realize that many marriages where autism exists deal with these things.  The divorce rates are often astronomical in these situations.  Phillip and I are well aware of how kind Christ has been to us in our marriage and that kindness is not taken for granted.

These various forms of physical struggles with touch are important things to realize about your friends and family who battle autism. If they shudder, squirm, or even scream at your physical contact with them, please don't take it personally.  It is a physiological aspect of our malady. 

I’ve already alluded to those moments of head hitting, rocking and other repetitive behaviors that at times come out.  Interestingly, one of the ways that I’ve been able to cover my own physical gesticulations is by means of transference – i.e. forcing the desire to “flail” or “flap” from an obvious body part to a more easily hidden one. 

If you watch me closely in a crowd you’ll discover that I push everything to my toes.  As my body desires to twitch and glitch, as my neck wants to shake and tremor, I have been able to teach myself to transfer those physical reactions from noticeable parts of my body down to my toes. pushing those 10 little digits to the floor with almost super-human strength.  That transferring action provides me with a well-hidden release for stimuli induced stress and serves as a calming agent in a chaotic climate.

In certain extended social settings, where my need to use this coping method has been severe, I’ve actually left an event with my toes hyper-extended from this practice.  Yes, it's a bit unpleasant, but doing so got me through the situation and in my human hubris I suppose I’d rather have ten tense toes than to have foolishly flailed in your face!  (Funny side note: in the early days of the counseling which uncovered my autism, my counselor actually asked me if I biked or ran.  She was very puzzled to learn that I didn’t work out at all after she had been struck by my over-developed calf muscles.  Later, as this technique of transference was discussed, she realized that I do indeed work out – all day long with my own version of calf strengthening toe calisthenics!)

We could discuss areas of visual stimuli which absolutely parallel in sight that which I’ve already described in sound. For now, I'll leave it at simply referencing that there is a parallel between the two and reminding you that many whom you'll encounter who live with autism are pained by light and even by certain colors.  Please be sensitive to them when they are struggling with the sensory issues of sight.

I, personally, also regularly have sensations of an imploding brain, and the very common experience of electric anxiety (a fiery physical phenomenon that plagues so many on the spectrum when they arrive at the point of neurological overload). Let's just say that both can be far less than lovely! 

As is common in autism, I am a visual thinker, thinking in pictures – though I often see things in typed text just as much as in photographic form.  (Part of that stems from the fact that I am a lingual autistic.  One for whom words rather than numbers are the norm.) As a visual thinker, my memory can be very deep – frighteningly deep at times. Deep to the point that I may sit down to get a haircut and find my mind pulling up the pictures from every other haircut I’ve ever had in every place that I’ve ever had them - remembering the details of the position of combs, number and location of brushes on the counter, arrangement of the shampoo in the display case, specific wall decorations, flooring patterns, etc.   In those moments of deep memory, 40 years’ worth of haircuts will happen in but the blink of an eye, like a fast frantic flipping through the pages in a mental file folder of photographs.

Many who know me best also see that autism is the engine that drives several of the areas of my life that they deem as "gifted".  I suppose, at least in my story, that these are the blessings which are manifested in this malady. 

I was considered the prodigious little pianist as a child - a thing that often made me rather nervous and uncomfortable because the attention it drew was something I didn’t know what to do with. (Simultaneously there was something mysteriously marvelous about it as well). In music I learned to emote and to escape and that gift became a life saver to me time and time again. 

As a songwriter I have often frustrated my fellow musicians because my pattern is to decide to write a song and then sit down and do it in 30 minutes or less.  I have a visual songwriting formula that I just “do”, sort of like baking a cake on the keyboard or guitar! That visual "formula" always allowed me to simply see what needed to be done to write a new tune and thus enabled me to put out a large number of fresh songs in an incredibly short amount of time. 

One of the things that tipped off my counselor that something atypical might be occurring was the volume of typed material I was sending to her in an obviously less than normal time frame.  Once there was a 1500 word dissertation on the relation of faith to reason (logically outlined, with references to Old and New Testament passages, and with examples from philosophical and church history) all written and returned within 15 minutes of having received the initial email question from her.

To me, all those things have simply seemed a part of life and not anything extraordinary, but others tell me that is not so and they now chalk it up to the so called blessings of this autism that God has granted.



  1. A friend sent me to your blog. I am so glad she did. I have an autistic child and he has a really hard time with God. He doesn't like to pray because it doesn't feel right to him and being in church is just a disaster each week, though we try. THank you for telling your story. Im looking forward to reading all of this and hope a lot of other people will to.

    1. Hi Tara,

      I'm thankful you found the blog as well. I do pray something here will be of benefit to you.

      We have the exact same struggles with our 11 year old autistic son. Prayer is an interesting struggle for a variety of reasons to many on the spectrum (myself included). Please let me know if I can encourage or assist in any way. Part 4 may at least begin to give you a few practical suggestions, and in the final installment there will be some "helps" offered as resources for families to look into.

      Thanks for commenting!

      By grace,

  2. I don't even have adequate words. Well, not other than "thank you!"

  3. I have a 19-year-old son with Asperger's Syndrome. Just lately he has started to question his faith, expressing many doubts that have never occurred to me before (even though I have questioned and doubted over the years) and asked questions that I don't have very good answers for. In one way it helps to know that this is a particular struggle connected with autism - although I am not sure how to help him deal with it.

    1. Hi Susan,

      Thank you so much for writing. It truly is a common plight. I hope that part 4 might at least begin to give you a few thoughts on helping. I would be more than happy to correspond some as well in order to understand your particular situation better and prayerfully offer some insights.

      Regardless, as of this morning, I have begun to pray for you and for your son.

      By grace alone,

  4. So very insightful. thank you Lori.