Asperger’s Syndrome: In Search of a Better Truth

The moment that I first slipped into the menacing murky fog that was to become my new world was when I placed the doctor’s large manila folder on the passenger’s seat. Like an ominous urn it was close enough for me to hear the words echoing from inside but far enough away that it couldn’t touch me. Autism… Autistic Spectrum Disorder… Autism…

The folder seemed to be the only clear image I had. It was startling. Did it contain hope or fear? Did it hold answers for my son or did it hold more questions?

My once clear world was now completely surrounded by shadows of doubt. Even my son, peacefully sleeping in his car seat, had become entwined in a world that now resembled a kaleidoscope.

Pressing on I drove straight to my favorite health food store, Vitamin Cottage. I had been purchasing the products to make his wheat, dairy, corn, oat and egg-free diet there for over a year. The knowledgeable staff was always helpful. Surly someone there would have an organic and healthy idea about where to start.

With tears streaming down my face I came to the realization that I honestly had no idea what I would find. I only knew that there had to be a better truth than the one the doctor presented to us. It was like she had just given my darling son the equivalent of a life sentence… and he wasn’t even four years old yet!

In the parking lot I watched my son sleep for over an hour. I leaned back and let my mind drift back over the past few years. I wondered: WHAT is missing? WHY is it gone? HOW and WHEN did it happen?

More questions appeared as my nightmare began. In my mind’s eye I saw what appeared to be a dim glimmering light on the horizon. I focused on it. For some intrinsic reason I didn’t question the fact that I was deeply attracted to it. I raced towards it as if my life depended on it.

When I finally neared this beautiful illumination, close enough that I could actually feel the warmth, I outstretched my hand in eager anticipation of beholding what I now believed to be “The Truth.”

Suddenly the light flickered and dimmed. Then it faded from my view.

Was this a premonition to prepare me for the next faze of my journey or did it only symbolize and recap the races I’d been running – that never seemed to end – for the past two years? The memories of my consuming races in search of answers were now becoming twisted and distorted.

Several hours before, on my way to the hospital, my fears had been temporarily replaced with unrestrained hope. Even though I was convinced that this visit would provide concrete answers and a clear focus I still felt as if I was venturing out, yet again, into uncharted waters.

My son had accepted his lot in life and participated in the, now familiar, testing arena of the day.

Many hours later I felt as if I was reeling from my minds inability to distinguish fact from reality.

A common dictionary definition of truth is: “agreement with fact or reality.”

The doctor’s findings were based on facts that I understood – and accepted. The recommendations (based on the very same facts), represented realities that I could not understand – or accept.

I glanced at the folder. I touched my son’s cheek. It seemed that everything step I had taken so far had actually put me father behind. I had to accept that it was time to start over, again.

There was no other choice. He is my son. I decided to search until I found a better truth – even if it meant that I would be “out there” somewhere. On July 22, 2004 my new, real journey officially began with a new-found determination.

It wasn’t as if I set out to prove the doctor wrong, exactly. My focus wasn’t that clear. My unclear and unwritten goal back then was simply to “fix” my son. I never dreamed or accepted that it couldn’t be done.

With each effort we have learned more about living healthy, healing and acceptance. With each discovery we have come closer to understanding a better truth. I keep a diary, of sorts, mostly a vast array of everything we’ve done on my computer. Occasionally I read over our early days and I still cry-tears of sadness for where we were and tears of joy for how far we’ve come.

It was never even a consideration to write-or share- this journey. My plans were to put this experience and the memories, like it never happened, on a dusty shelf, as soon as he was “healed.”

However, it seemed that the more we did and the more we learned the more that needed to be done and the less I really knew. I became obsessed with going deeper until, time after time, it seemed that there was nowhere else to go.

There were times when I wondered if I was doing the right thing and even more times when I wanted to turn the clock back to the time when I was still pregnant. A time when I should have taken more time to study all of the steps it would take to protect my child from the unknown.

Feeling regret and remorse only made me feel awful and didn’t help to solve anything. Changing my focus from pity to purpose gave me a greater sense of focus. I vowed to learn as much as I could in order to provide better choices for my son. Step-by-step, the choices began to change the course of our life.

Many times while searching I was shocked and outraged at my findings. I did not like many of the answers I found but I firmly believe that dealing with the known is always preferred to struggling with the unknown.

In January, 2007 I was at a writer’s meeting where I shared a brief testimony about my “project” and my “inspiration.”

My project? My second book for children titled Fire and Ice. It was written to teach my son what to do in the event of a fire. I knew that a small penguin could reach and teach him in ways that I couldn’t. I wanted this book to become a handbook for children.

My inspiration? My son, who happens to have a form of autism known as Asperger’s Syndrome, learns differently. This book was written to “reach” him differently, I explained. I didn’t elaborate much more because I really didn’t think anyone in this group knew much or cared much about Asperger’s Syndrome. I assumed that this group of writers would want to know more about my children’s book. I couldn’t have been more wrong.

Throughout the day every single person there approached me with questions and comments about my son and about Asperger’s Syndrome. At the end of the day a group of us were talking and one tearful mother gave me the quote that appears on the front cover of the book that was “born” that day.

In Search of a Better Truth, Understanding and Overcoming Asperger’s Syndrome is the title I gave to “our” book. I accepted that parents, grandparents, care givers and educators need a hand book to understand and accept a child with Asperger’s Syndrome as much or more than a child with Asperger’s Syndrome needs a handbook to learn.

This book details our journey – recognizing and understanding the characteristics; experimenting with nutrition and creating a behavior modification diet; therapies we tried; what worked and what didn’t… and SO much more. It began as an outline of only 30 pages. It’s now over 100 pages and still growing. I hope to have it completed by August 2007.

Sometimes the reason for our journey becomes clear in ways and places where we might least expect it to. I can honestly say that I often questioned God about His decision to give me a child with Asperger’s Syndrome. I was afraid of doing everything wrong and not being able to do enough for him.

“I’m not qualified,” I said one day to God. I was angry and resentful because He had entrusted me with a job that I couldn’t do.

“Neither was Moses,” He said.

There have been very few times in my life when I was completely speechless. That was one of those times…

There are still times when I feel overwhelmed and afraid. Most of the time, however, the answers have come. Seek and ye shall find.