Autism Awareness Month

By age 2, my son had vanished. There was no siren, fire bell, or whistle to warn us of the impending disappearance perpetrated by the thief in the night called autism. Our once outgoing, social, happy baby was taken - piece by piece. His eye contact went first, his obsession with round objects controlled his mind, and finally, he stopped calling me mom. An eerie emptiness filled his eyes; tantrums dominated his behavior.

Grief drowned logic. Denial hid fear. Anger propelled me into action.

In an intense evaluation, the pediatric psychiatrist shouted my son's name. Nothing. He never looked up. The doctor slammed his fist on the table where my son sat. I jumped. Still nothing. Not even a flinch. The doctor frantically scrawled notes on his yellow pad looking up briefly to tell us, "Your son has pervasive developmental disorder - not otherwise specified."

The room fell quiet. Then the curtain came down. His fate - sealed.

My inherent need to find my son dictated a quest to fight the invisible nothingness that took him from us. The one that had no rules, no boundaries. I ravenously researched any treatment that might help him. Soon I became fluent in the language of autism - behavior therapy, biomedical treatment, poop consistencies. Any inhibitions seemed to fade as I began the climb - alongside many other autism parents - one of the highest mountains in the world. The only thing we carried on the trek: hope.

Charting our course, we immediately implemented an early intense behavior therapy program, ABA (Applied Behavior Analysis), followed by biomedical treatments that included nutritional supplementation, an organic diet free of gluten and casein (wheat & dairy), chelation therapy (removal of heavy metals), and RDI (Relationship Development Intervention).

Many days were black, finances were low, therapy programs not mastered. Hope dangled in front of me, but was out of reach. Then I would catch glimpses of the light flickering in his eyes. It was enough to scrape together whatever means possible to carry on for just one more day. I found courage in watching other autism moms persevere and strength when I saw their successes.

When we danced, I often caught fleeting peeks of the son I used to know. He wouldn't look at me until we started to spin, our right hands clasped together. We spun and spun until his eyes eventually locked onto mine. He broke into a smile, and I took a picture in my mind to save forever. Then, not being able to withstand the drunk-like dizziness, we fell onto the sofa and watched the room whirl all around.

As weeks grew into months and behavioral and biomedical treatments continued, I noticed the flicker in his eyes burned a little longer. One word turned into three, then four words or more. Smiles became more frequent. The day I told him he was my star and he replied, "you're my triangle," I laughed. He laughed. And it was then I knew we had joined worlds.

The day a neuropsychologist, after three exhaustive hours of testing, told me "he no longer meets the criteria for an autism diagnosis, and I've never been able to say those words to anyone - not in my entire career," I felt a joy I had never known.

It was official. My son had recovered from autism.

As I watched him walk into his classroom on the first day of kindergarten, his backpack bouncing behind him, I marveled at the miracle, the gift, and vowed to pay it forward.

In February, we walked hand in hand up the hundreds of steps to the Utah State Capitol building where we testified to the Senate Health and Human Services Committee in support of Senate Bill 43, "Clay's Law," named after my son, that would require private insurance companies to pay for medically necessary treatment for autism. It passed the committee, then the senate, but failed in the house. I sat in silence after hearing the discouraging news. Clay leaned over and whispered in my ear, "it's ok mom, because we'll never give up."

We will keep fighting - statewide and federally. There are too many futures at stake.

My son escaped the unrelenting grip of autism. Today, he is a typical 8-year old boy who loves playing basketball with his friends at recess. He recently took third place in a boys state gymnastics meet, and he's an avid fan of the Diary of a Wimpy Kid book series. I don't worry about his future. But I do worry about the future of our country if we do not help those affected by autism.

I'll never leave the club in which I was once initiated. We climb together with our hope clutched tightly, our eyes fixed on the peaks ahead.

Leeann Whiffen is the author of A Child's Journey Out of Autism. Visit her Web site at leeannwhiffen.com.