Autism Spectrum Disorder: An Unexpected Journey

You know that feeling you get when there is something going on with your child, but you can’t quite articulate what it is? For me, “that feeling” has been a complex web of ever-evolving emotion: worry, fear, frustration, insecurity, confusion, jealousy, anger, grief, relief, gratitude … and even joy.

Photo credit: Erin Dunaway Photography
Photo credit: Erin Dunaway Photography

The worry begins

When our son was about fourteen months old, the little voice inside my head started whispering worry into my ear. Despite responding to his name, consistent eye contact, and a warm smile, something felt off. He was a happy baby, easily entertained, and rarely fussy. So what if he was a bit behind in gross motor development? Because he was born with bilateral clubfeet, my husband and I justified his late crawling and cruising.

Able to somewhat rationalize our fears, I didn’t push back when our son (barely) passed a few of his developmental screenings. I mean, I was a new mom, prone to anxiety, so maybe these hoof beats weren’t the zebras I imagined them to be–maybe they were just horses. “Every baby is different,” after all.

When worry became reality

Well, by the time our son was almost three, the subtle “red flags” became more pronounced and that little voice began to shout. He fixated on one book — I think we’ve been through three copies of Chicka Chicka Boom Boom. He started reciting large chunks of dialogue from his favorite movie. He began repeating “stock” phrases and had trouble using pronouns correctly. He never got into things and needed help figuring out even the most intuitive of toys. Sliding glass doors became a crippling obsession and changes in routine quickly descended into full-on meltdowns. Hearing my girlfriends’ stories of curious baby-proofing ninjas, balance bike success, and sassy one-liners, I would smile and nod, but as soon as I left their company, I’d call my husband in tears.

In October 2017, one month before our son’s third birthday, his Kid’s Day Out teacher raised some concerns. She validated our worry as though she heard that little voice herself, which was all we needed to fly into action. My husband somehow got our son in for his three-year well-check that same afternoon, where our pediatrician saw his emerging delays and recommended further diagnostic screening with a developmental pediatrician. I called our Parents As Teachers educator to see what else we should do. She said to schedule a screening with the public school district’s early childhood department. Note: My husband and I are both high school teachers, but neither of us knew that public school districts serve children as young as three when special needs present themselves. Makes me wonder who else doesn’t know…

Early intervention & diagnosis

Our local public school district screened our son just after his November birthday, and at the end of February 2018, he received an Individualized Education Program (IEP) based on about six weeks of in-classroom evaluation. This may sound strange, but my husband and I were relieved, even happy for him to qualify for services, because his IEP opened the door to invaluable support and resources. The plan his teacher and service providers put in place gave us the peace of mind we’d been seeking. That morning, our tears were ones of gratitude and joy.

Also in February, we finally heard back from one of the area hospitals we’d contacted in October, and our son received a diagnosis of autism spectrum disorder (ASD) on March 21st after just a two-hour screening and some lengthy questionnaires. I will never forget that day. I imagined the appointment much differently. Compassionate patience with enough time to digest some difficult news. Unfortunately, the reality fell far short: in and out of the office in under 30 minutes including wait time. Even though my husband and I expected a diagnosis of ASD, hearing it spoken by a doctor knocked the wind out of us. And hearing it in terms that made little sense, as we were handed a stack of resources without much guidance, left us feeling lost and woefully inadequate.

We met that inadequacy with a call to the hospital’s patient advocacy line. We know the advocate really heard us because the psychologist we’d seen that morning called within the hour to offer us a second appointment at our convenience to go over everything in more detail. While we left that 6o-minute discussion just as overwhelmed, we had a better understanding of where our son fit on the autism spectrum and how to describe his needs as we contacted facilities on that massive list of resources. Although the timeline and experience with the hospital was frustrating, a medical diagnosis was crucial because of our health insurance. I am no insurance expert, but I do know that a medical diagnosis is helpful (perhaps even necessary) when fighting for coverage of therapy outside of the school day.

Diagnosis in hand, we requested a follow-up IEP meeting at our son’s school to amend the official document. Everyone in the meeting agreed that having an accurate document with his medical diagnosis was extremely important.

Finding the support he needed

The early intervention our son receives from our public school district has changed all of our lives. However, in order for him to thrive outside of the classroom, we knew he needed more support. Believe it or not, the first place I turned was social media. I posted in a local moms group — making sure to indicate we’d not yet made the diagnosis “Facebook official.” Those who commented offered encouragement, suggestions, and support, which helped us find our way to resources best-suited for our child. From the post, we met a wonderful music therapist who still works with our family, and we found a private facility our son loves for his additional physical, occupational, and speech therapies. When we were ready, I put a simple message on my personal page about the unexpected road ahead. The love people gave our son and our family via comments, messages, texts, and phone calls provided us much comfort during an extremely stressful time.

Knowledge is power

While our precious boy is unique, his journey is not. According to the Centers for Disease Control, as of April 2018, 1 in 59 children is diagnosed with autism spectrum disorder. The little voice inside our head isn’t always right … but sometimes it is. For children under the age of three, contact Infant Toddler Services in Kansas or First Steps in Missouri for screening; for those over three, contact the local public school district. Although schools can craft and implement a plan as well as provide helpful resources, be sure to seek out a developmental pediatrician or other licensed clinician who will evaluate for specific conditions and delays.

Whether addressing your concern rules out or leads to diagnosis, knowing is far better than wondering. And, while early intervention is ideal, it is never too late to seek answers and ask for help.

Feature image credit: Erin Dunaway Photography

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Claire made her way to Kansas City after graduating from the University of Nebraska-Lincoln where she met her husband Scott (a KC native and Mizzou grad). Both are high school educators; she teaches English while he often schools her in history. They live in Olathe with their two small children -- Evan 5 & Abbie 3. Claire regularly spends time advocating for early childhood education/intervention and is always looking for ways to become more civically engaged. She loves cheering on the Huskers and the Royals, date nights, reading five books at once, writing, contemplating the deeper issues of Daniel Tiger's Neighborhood, and listening to her kids giggle together. Catch some of those giggles on Instagram @clairebear_kc.

6 COMMENTS

  1. Claire,
    Your journey is not alone, and now others will not walk this path alone either. You are a gift to your son just as he is a gift to you.

    I look forward the seeing how you will change his world.

    Thank you for sharing,
    Sheila

  2. Great article! Thanks for sharing the beginning of the journey with your son. Can’t wait to follow up in 10 years! I know he will be awesome and that he will achieve great things!

  3. Just came over to read this after you talked about it on Instagram stories. Thank you so much for sharing! Your son is SO cute!!

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