Navigating life often means encountering words of wisdom—some resonate deeply, while others leave you rolling your eyes internally, thinking, “That’s utterly ridiculous.”
One piece of advice that stands out for me was from my grandmother back in third grade. I had made it to the final round of the spelling bee, and she called to give me a pep talk. “Just remember, sweetheart, spell it out like it sounds.” On the day of the competition, I faced the word “anxious.” I started strong with “a” and “n” but then hesitated, hearing Grandma’s voice in my head. I stumbled through the rest, ending with “c, h, i, o, u, s.” Reflecting now, I realize that even without that advice, I would have struggled, but her words lingered in my mind during that moment.
Fast forward three years, and I found myself grappling with the realization that my son was on the autism spectrum. That gut feeling was confirmed by a diagnosis shortly thereafter. The first week confronting this reality was the hardest period I’ve ever faced. I felt like a time bomb of grief, mourning for my son and the hurdles he would encounter.
I found myself crying at inopportune moments—the shower, the grocery store, and even when trying to explain “autism” to friends and family. I grieved not only for my son but also for the dreams I held for our family: soccer matches, birthday celebrations, and sleepovers. Those dreams felt replaced with fears about my son’s future independence. I felt woefully unprepared to be the mother he needed.
In my state of confusion, I buried myself in research, scrolling through Google for anything autism-related. I borrowed stacks of books from the library and tried to absorb as much as I could after putting my twins to bed. I felt isolated, as if I were stranded on a deserted island, surrounded by sympathy but lacking true understanding. Reflecting back, I understand now that much of that isolation was self-imposed. My husband can attest to my struggles with communication; he often wondered if I even liked him during our first few months together. I always seem to think of the perfect response long after a conversation ends. Maybe it’s a Capricorn thing, or just my thing.
Amidst my grief, I reached out to family and friends, and their unwavering support helped me find the strength to push forward. Much of what they said didn’t resonate at the time due to my clouded judgment, but certain pieces of advice have stuck with me.
You know your child better than anyone else.
A lovely couple I’ve known for nearly two decades offered to meet with my husband and me during those challenging early weeks. They had a son on the spectrum, so they understood our journey. While they shared countless insights, one phrase stuck: “If you’ve met one child with autism, you’ve met one child with autism.” This disorder doesn’t fit a one-size-fits-all mold. Each child has unique strengths and challenges, and cookie-cutter solutions won’t suffice.
This may sound cliché, but it’s become my guiding principle for all my children, regardless of their differences. As a parent, you spend the most time with your child—not the doctor who briefly examined them or the therapist insisting on a rigid regimen. While there are brilliant professionals out there, they can’t truly predict the full potential of any child.
You are your child’s strongest advocate. Don’t hesitate to make changes if a therapist isn’t connecting with your child, or if a professional’s recommendation doesn’t sit right with you. Your time and resources are valuable; fight for your child’s best interests.
A diagnosis doesn’t define their identity.
Moms often provide the most genuine advice when it’s needed most. After diving deep into Google and discovering the signs of autism, I called my mother, overwhelmed and in tears. Coincidentally, she had sensed the same issues.
In that moment of vulnerability, my mother reminded me, “This diagnosis doesn’t change who he is.” At the time, I brushed it off, focused on the looming challenges. I was overwhelmed with advocating for my son, dealing with health insurance, and strategizing interventions. Yet, autism is merely a facet of his identity. He was just 13 months old, with a personality that was a mix of sweet, stubborn, and cheerful traits—qualities that still shine brightly today.
A diagnosis may explain some behaviors, but it’s essential to remember that it doesn’t overshadow the essence of your child.
Everything will be okay.
I found this phrase frustrating when I first heard it. It felt dismissive, as if my genuine concerns were being brushed aside. It didn’t help that many people lack a deep understanding of autism, leading to well-meaning but misguided reassurances.
Looking back, I realize that those responses came from a place of care, albeit misguided. I should have been more forgiving of their intentions and grateful for their support.
Find your community.
I read about this in various parenting resources, and I made a conscious effort to connect with other parents navigating similar challenges. While formal groups were helpful, some of my most valuable connections formed naturally.
While waiting in the lobby of my son’s therapeutic program, I began chatting with other caregivers—mothers, nannies, and grandparents. We bonded over our shared experiences, discussing everything from daily struggles to triumphs. This camaraderie became invaluable, providing a space to vent and share laughs.
However, it’s crucial to be mindful of who you allow into your circle. Life’s too short for toxic relationships, even if they’re tied to shared experiences. Surround yourself with those who lift you up, not those who drain your energy.
You will experience ups and downs.
A friend connected me with a woman known for her fierce advocacy for her child on the spectrum. I reached out to learn about local resources, and during our conversation, she reminded me, “You’re not out of the woods yet.”
While the early days were particularly tough, I still find myself having emotional moments. Whether it’s sending my son off to school or dealing with his meltdowns, there are days when the weight of it all feels heavy. Yet, amidst the challenges, there are so many beautiful moments to cherish.
To any mom who recently received a diagnosis and feels overwhelmed: I see you. The dreams I once held for my family have evolved, and I can assure you that soccer games, birthday celebrations, and friendships are still possible. My son has made incredible strides, and we celebrate every victory, big or small.
You will navigate through the fog. You may encounter unhelpful advice and question why this is happening to you. Your patience will be tested, but through it all, remember that your love for your child is what truly matters. That unconditional love is their foundation, and it’s all they need right now.
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Summary
This article reflects on the journey of navigating an autism diagnosis for a child. It provides personal anecdotes and insights into the emotional struggles, the importance of advocating for your child, and the value of finding a supportive community. The author emphasizes that a diagnosis does not define a child’s identity and encourages parents to lean on their love and intuition as they navigate this path.