Autism Spectrum Disorder - Now what?

I can still feel the knot in my stomach I felt three years ago sitting in the small therapy room at the Cleveland Clinic Lerner School for Autism, waiting for Dr. Julie to begin speaking. Riley was on the floor building a tower of blocks. Tim was beside me clutching my hand, still in his Coast Guard uniform that I jokingly refer to as his "gas station attendant" gear.

Dr. Julie sat across from us, hands overflowing with sheets of paper, and that one on the very top, her typed inventory that included our parental concerns; her evaluation of the three sets of question and response forms filled out by us and his teachers; and finally, her diagnosis after a two and a half hour session observing and interacting with Riley at play.

Dr. Julie, so sunny and sweet, a few years younger than Tim and I, had done this before. I could tell, in the way she methodically, very matter-of-factly, said the words: Autism Spectrum Disorder, PDD NOS (pervasive developmental disorder, non-specified), provisional diagnosis of Asperger's Syndrome.

"I'll leave you alone for a moment," she said, hustling out the door to gather some papers left behind in her office, likely to allow us to gather our emotions.

In hindsight, I am grateful she didn't say cancer or diabetes or any of the other countless diseases and disorders that can irrevocably alter or even take away the life Tim and I nurtured and loved. But at that moment, foresight flies when faced with a verdict that there is something irrefutably wrong with your child. He is atypical, he will face challenges.

The rest of the visit is a blur. I remember a flurry of pamphlets, book recommendations, phone number exchanges, and appointment setting a year in advance for a follow-up visit. I remember Julie's unflappable smile in spite of my tears. I can still picture Tim's crestfallen face, chin shaking as he tried to remain stoic on the way back to the van. I recall Riley's happy obliviousness to our distress as he skipped ahead in the parking lot, and for that I am grateful.

Then comes the aftermath, the phone calls to family and friends who know where you went that morning. Some will accept and nod in agreement; others will argue with the diagnosis, say you are overreacting, forgetting their lack of degree or experience to pass such judgements. I like to think it's because they can't stand to see friends in pain, so they question an outsider's diagnosis thinking it will spare suffering. Or perhaps it is unimaginable, and as parents themselves it hits a little too close to home; better to shoo away the wolf at the door rather than invite it in for coffee and doughnuts.

The best gift I received after Riley's diagnosis was flowers, chocolates, and a hug from a dear friend, who gave me permission to mourn. These were her words, "I am so very sorry," as if she understood the extent of my loss.

That's all. Five little words. Permission to mourn.

So for a few days, Tim and I hunkered down, circled the wagons, pulled inward. There is sanctuary in the family unit. Swaddling the babes you bore is a comfort, as satisfying for parents as it for children. In that cocoon, we let go of the "idea" of our child and began accepting the reality.

Then came the hard work, the search for all available therapies recommended by Dr. Julie. We discovered a free preschool program within our school district, LEAPS, an acronym for Language, Education, and Parental Support. We opted to keep him in his typical preschool environment so he would have both an opportunity to generalize what he learned at LEAPS, as well as the benefit of typical peers modeling expected behavior and communication.

We discovered the wonderful world of social stories, how to create them and use them with Riley when we needed to take him step by step through "How to Go to the Library" or a "Going to Bed Routine." We added on to our health insurance plan to help pay for a behavioral therapist to visit our home.

Two years later, Riley segued smoothly into kindergarten without the need of an IEP. Now, he is a first-grader with a love for learning and a need for routine, who finds Egypt endlessly fascinating and loves to play with Lucy the Wonderdog. In most settings you would never guess Riley's diagnosis, outside of a few quirks that aren't too bothersome to most first-graders. We continue to work with a behavioral therapist who has helped set up a home routine and a reward system that helps not only Riley, but all of us get through our day.

Surviving the first year after a diagnosis of ASD is another article, though. It has been said, "You meet one child with ASD, you meet one child with ASD." Therapies run the gamut and require more detail than I am able to provide in these pages today.

For now, if you are going through the process of having a child diagnosed with Autism Spectrum Disorder or Autism, I give you permission to mourn. There is something to mourn, don't be afraid to let it go. If you are a friend or family member who doesn't agree with the diagnosis, unless you are a board certified therapist who specializes in this field, please keep it to yourself. Most of all, please don't hesitate to reach out and express your sorrow. Empathy goes a long way.