The Realities and Blessings of an Autism Diagnosis

Fourteen adults sit in small grade school chairs around a rudimentary table. We are here to discuss the results of an Autism Diagnostic Observation Schedule (ADOS).

One-by-one, educational and social work experts provide commentary on, observations about, and test scores for a nine-year old boy.

The meeting lasts two hours. About half way in, the results come. The ADOS indicates the student is well above the thresholds of autism. It’s a detailed description with a clinical name: Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS). Sometimes it’s referred to as atypical autism. The discussion happens with carefully chosen words and appropriate empathy. After all, the student’s parents have seats at the table.

And we are the parents. 

For a moment I’m about to throw up. I’m a little dizzy, and can feel the sting of the words and tears in my eyes.

Wait. Why this reaction? In my heart, I knew this truth well before it was spoken. I thought I was ready for this.

I’m not ready. I’m a mess.

In retrospect, if they had told us our son was a typical second grader, I would have been furious. Clearly something was different and we needed answers.

So here we are. Hearing the news we expected. And I am panicking. I can’t breathe. I am going to cry in front of all these people. Stop it.

This is a normal reaction. I get it.

But still, all this fear and emotion feel like an odd betrayal to my child. I want to accept this as completely as I love him. He’s the same boy as yesterday. Smart, investigative, fascinated by the mechanical workings of things, good with numbers, socially awkward, obsessed with the sound of doors closing, gifted at architecture, terribly shy, amazingly caring. He is perfectly created by God.

He’s not broken. Stop saying he’s broken.

This is Day One

That night, with our three kids tucked into bed, we sit on the front porch with a couple beers and talk about the day. We are incredibly blessed. We are okay. We’re still us. And yet many things will be different.

In the week after day one, I read a lot, learning things I was clueless of a week before. Wow – 1 in 54 boys are diagnosed with an autism spectrum disorder. It’s largely genetic. And significantly misunderstood.

We learn the difference between Individual Education Plans (IEPs) and 504 Plans. We share the news with some family and friends. We secure a referral to a developmental pediatrician. We meet with a special education team. We plan for summer vacation. Life will carry on. Differently.

A week later, my body hurts and I have a perpetual headache. I haven’t slept much. I have a hundred irons in the fire. I have a full-time corporate job, own a part-time start-up company, and am part of a busy family of five.

Somehow, life’s priorities shift to make room for changes and surprises. We’re adjusting. Time will tell what lessons and blessings will come our way. We’re open to it all. One thing’s for certain, God has a plan for our family. And we trust it.

Parenting is hard. Give yourself some credit for doing it right most of the time. Then go hug your kids and kiss them goodnight. They need you.

Ready to learn more about the signs of autism spectrum disorders? Go to autismspeaks.org and read up.

What’s your family story? I’d love to hear from you.

photo credit: jisc_infonet via photopin cc

About Lori Boyce

I’m Lori Boyce. I'm a writer, problem solver, coffee drinker, grammar geek, friend. I read a lot and love words.

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