an alphabet of autism and grace

The more fear we feel about a specific enterprise, the more certain we can be that that enterprise is important to us and to the growth of our soul."
Steven Pressfield

It has been twenty years since I first heard the word I was afraid of, the one I never wanted to hear. For just as long, I have resisted writing about it.

I haven't wanted to return here, to my shipwrecked place. It was here that certainty, strength and underlying self-reliance were broken to bits.

I'm afraid if I venture out to that sea again, I will get roughed up against the coral reef and the unknowing. If I am thrown overboard and fall into dark fathomless depths, I may rise again, but slowly or burst my lungs.

So why go back?

Someone is calling me, a voice I love. Mamas are swimming out to sea to reach their children. Daddies too, holding their beautiful children, treading water, getting worn out. I know that treading-water fatigue. And the saltwater heals.

I told someone recently what it felt like to hear the word "autism" for the first time to describe my beautifully dimpled, hurting, fading child.

A storm was brewing off the coast of my life, gathering speed and fury to hit land. The rain was already falling sideways, wind shattering glass, bending trees to the turf below and peeling rooftops above. I had seen hurricanes churning in the Gulf of Mexico. When I was a girl living in south Louisiana, we boarded up the windows, filled the bathtub with water and headed north to Grandmother and Granddaddy's.

But in this hurricane I could not board up my life and outrun the storm. It would make land first.

I sat helpless and watched the storm approaching, felt the low rumble as the mighty wind picked up, taking debris to the skies. I wouldn't see the rainbow then.

When Mike and I finally heard the word autism, it was after a long process of sadness and bewilderment, not only for us, but for our child. The way through seemed ominous and inky. I suspect it might still be.

In the beginning of his Cabbage Patch days, everything seemed fine. After two children followed by two miscarriages, Kyle had come to us in joy; waited for and wanted.

I had put down anchor in Psalm 139, or so I thought.

I had been given the rare and gritty gift of learning the hard way that God is good all of the time, not just when things work out as we had hoped and planned. Like many gifts of grit and wonder, they come to us through struggle and loss.

At his first birthday, we celebrated with a single cupcake and little pointy hat, the kind with a thin elastic band under the chin, the sort of thing that would later annoy him, but at this time did not. Soon after that day, our Cabbage Patch boy, number three in the line-up, had lost his ease-into-the-family temperament. His zenith blue eyes and twinkly smile nestled between two dimples as clear as mountain lakes began to fade.

At first, I thought Kyle might be losing his hearing. He seemed not to be listening, tuned out. But any sudden noise made him hit the deck.

After a bright day dawning in our life, heavy fog rolled in across our sea, veiling the view, thundering a storm with high winds and flashes of high-voltage lighting. Suddenly a Category 5 storm ripped through our sail, dashing our family ship against the rocks.

Instead of our happy baby, we had tears, hitting, kicking and raging tantrums where things were often broken. Mealtimes and bedtimes, once peaceful and cozy became battlegrounds.

Our pediatrician tried to ease us in gently, beginning with lots of acronyms: ADD, ADHD, PDD (Pervasive Development Disorder) and ODD (Oppositional Defiance Disorder). Mixed in was talk of mood disorders (non-specified), clinical depression and bipolar disorder. This was big people stuff, not for toddlers before their second birthday.

Our doctor was beloved and brilliant. He wasn't playing games. This is how the diagnostic process works. You begin with the least specific, broad possibilities, honing toward a piercing point, until an arrow is aimed at your heart. It took almost a full year before the word was given to us as certain.

Aspergers. Autism spectrum.

Before that, it had occurred to me that we may actually have forgotten how to parent since Sean and Kate were born. Maybe we needed stronger boundaries. Some people told us so. At varying points, Mike thought maybe he worked too much or needed to be home more. Perhaps we just needed to clear the decks and tackle this storm head on.

Or maybe I had been sleep-walking for an entire year, a real possibility. I was tired. I was certain it was just a mean case of the flu. I was shivering down to my cold and weary bones. When Kyle was just six months old, we discovered a surprise baby was on the way. Every day I woke up and shook my head, trying to rise out of sleep and disbelief.

My holy, irreverent friends (you know who you are) had long ago told me we should know how this baby thing works by now. Mike was a Urologist, for goodness sake. But family planning (and life) is both science and art with force and creativity beyond our white picket fences. There is a difference between our dreams and real life, sometimes its a chubby, dimpled, 8 pound, 14 ounce difference, other times its a pixie-doodle, 6 pound, 11 ounce difference. We think we are doing the arranging when our planning goes as we wish, and God lets us think so. We arrangers can go on like that for quite a while, blissfully, confidently. At least, I did.

About the time I met autism, but did not have a name for it yet, I also met our newborn baby girl named Ryan. I began to say, often out loud,

"I trust you, God. What in the wide world are You thinking, breaking me up like this?".

This is a refrain I would repeat many, many times, my holy, irreverent version of,

"Lord, I do have faith. Help me to have more."

Somewhere along the way, I realized that one thing autism taught me was to use the faith I have today. Use it up and ask for more.

Lather, rinse, repeat.

Empty the bottle.

It won't run dry. It just feels like it. Faith is like that coriander bread from the sky, enough for every single day and twice as much on Sunday. But you can never stockpile it. There are no pyramids when you cross that sea and walk with God into the wilderness. You have left those behind along with your relentless brick-making. That is freedom, raw fear and reliance on God.

So, I offer you this, "an alphabet of autism and grace".

Let's take it one letter at a time and see what happens.

My very un-scientific definition of autism:

Autism is a unique way of learning, seeing and experiencing the world along a colorful band of varied integration with strong strengths next to weak weaknesses, typically in the social skills.

A few strong strengths might include:

  • expertise in a subject of interest
  • intense focus
  • a photographic memory
  • prolific creativity
  • excellence in numbers, patterns or how things work
  • loyalty
  • honesty

A few weak weaknesses might include:

  • elusive eye contact
  • narrow or lacking social skills
  • missing or few communication methods
  • intense likes and dislikes
  • high levels of anxiety and fear
  • low tolerance for change or flexibility
  • challenges in sensory integration
  • lavish attention to minute details while missing the big picture
  • disengagement from the world

Keep in mind, these lists are not exhaustive or without exception. I am just a mama with a story. What makes up autism as I know it, is the unique combination of these particular strengths and weaknesses along a spectrum of abilities.

If I am honest with you, I will tell you autism is formidable, relentless, and the thing that broke me somewhere deep inside. But it is also the place where I saw the rainbow sky.

It was shining through my child.