Updated: Dec. 8, 2020
Originally Published: April 5, 2019
As a mother to a child on the autism spectrum, I’ve learned that this journey is anything but straightforward. My son was diagnosed with autism at the tender age of two, a moment that, while significant, didn’t catch me off guard. The signs had been there for a while—there was no shock or denial, just a gradual acceptance of our new reality.
In retrospect, those early indicators were subtle but present. As an infant, my son rarely made eye contact; instead, he’d gaze at the ceiling fan or the artwork on the wall behind me during our cuddles. Initially, it didn’t raise alarms in my mind, but by the time he hit six months, we faced a significant hurdle: his aversion to food.
Feeding him became a daily battle. We tried every trick in the book, from colorful plates to dancing around the kitchen. We even explored the idea of allowing him to eat freely, but the concept of force-feeding was out of the question. The few times he would eat something without a meltdown felt like miraculous victories, but the overall experience was filled with stress, worry, and a sense of failure. I found myself questioning if this was how parenting was supposed to be.
Eventually, I reached a turning point. I accepted that I couldn’t control every aspect of our feeding struggles. This shift in mindset allowed me to breathe a little easier, as I let go of the rigid expectations I had set for myself and my son. By the time his first birthday rolled around, the ASQ questionnaire was revealing more “no” answers than I was comfortable with. That day, our pediatrician mentioned “possible autism,” and though I shed tears, it also marked the beginning of a new chapter for us.
We initiated early intervention, which included monthly visits from a speech therapist and an occupational therapist. Finding private therapy options was a challenge—most were booked solid for ages. Eventually, we trekked an hour north for appointments until we could find something closer to home. Just after my son turned two, we received the official diagnosis. At last, I had answers, a direction, and a growing list of resources to help him thrive. I embraced this journey, determined to learn everything I could about autism spectrum disorder (ASD).
I sought out community support and joined several autism mom groups online, hoping to connect with others who understood our struggles. However, these groups often felt more like battlegrounds than safe havens. While I found some valuable insights, the negativity was overwhelming, so I chose to step back. Yet, I emerged from those experiences knowing I wasn’t alone.
As time passed, social situations became increasingly challenging. I often found myself explaining to well-meaning strangers that my son wasn’t ignoring them—he simply processed the world differently. The pressure to maintain a cheerful demeanor while navigating these interactions was exhausting, but I was grateful for those who listened and tried to understand.
One thing became clear: many people hold misconceptions about autism, mistakenly believing one encounter with an autistic child provides them with a comprehensive understanding of the spectrum. This couldn’t be further from the truth. Autism is far too complex to be summed up in a few sentences. It must be experienced, lived, and understood on a deeper level.
At first glance, my son appears like any other toddler—smiling, affectionate, and full of joy. He has an infectious laugh and a fascination with all things that move. However, there are unique quirks that make him who he is. He loves spinning things, whether it be pinwheels or ceiling fans, and he communicates primarily through one word, “bye,” albeit in a strong southern accent. Despite his challenges with sleep, he wakes up every day with a smile.
Then comes the more challenging side of our journey: his complicated relationship with food. Our pantry is overflowing with sippy cups, but only one is tolerable to him. His diet mostly consists of cheese puffs and yogurt melts, supplemented by toddler formula. The texture of most foods is simply too much for him to handle. After nearly two years of occupational therapy focused on feeding issues, we’ve made progress—he’s touching more foods—but the road is slow and fraught with frustration.
The questions surrounding my son’s future loom large. Will he ever enjoy a meal? What if he doesn’t? The uncertainty is daunting, but I hold onto hope and strive for patience. My mission is to help him grow in any way I can, navigating each challenge as it arises.
Living with autism impacts every facet of our lives. While my story may seem mild compared to others, I empathize with mothers who are overwhelmed and in tears, facing their own battles. Many of us are stuck fighting for the services our children desperately need, whether those services are accessible or affordable. Some face denial from partners about the necessity of intervention, but thankfully, my husband has been incredibly supportive.
As we juggle work commitments with therapy sessions, it often feels like walking a tightrope. We find ourselves advocating for our children in school settings, wrestling with doctors about tests and treatments. The struggle can feel endless, but we never lose our determination. Our children are our hearts, our light, and we are committed to making that light shine.
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Summary:
Navigating the autism spectrum as a parent can be a tumultuous journey filled with challenges and triumphs. From the initial signs of development to the process of diagnosis and intervention, each step shapes the family’s experience. While food aversions and social situations can be daunting, the hope and love for their child remain paramount. Understanding autism’s complexities is crucial for fostering a supportive community, and the journey is one of resilience and unwavering dedication.
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