What is grief? To most, the definition of grief is tied to deep sorrow, often in the context of loss through death. While accurate, grief takes many forms, and its reach extends far beyond the passing of a loved one. The reality is that grief can surface in numerous ways, particularly when life doesn’t unfold the way we envisioned. For many parents, this emotional upheaval comes with the word autism.
When we hear the word "grief," our minds may wander to the five categories that professionals use to describe it: anticipatory grief, acute grief, normal grief, disenfranchised grief, and complicated grief. These labels serve their purpose, but when you’re in the throes of it, definitions are cold comfort. For me, the word autism unlocked a grief I hadn't prepared for—the kind that came with equal parts devastation and relief. It was 2008 when my then two-year-old son received his diagnosis. For months, we had undergone countless evaluations, tests, and medical visits, searching for an answer. When we finally got it, the relief of knowing what we were dealing with was immense, but the devastation quickly followed.
I grieved, not for myself, and not even for him in the traditional sense of loss, but for the way the world would now view my son. How would people treat him? Would they see his value, his beautiful soul, or simply label him as “different”? The hurdles felt endless. The moment I heard the word "autism," it felt as if the future I'd imagined for him shifted completely, and I had to come to terms with the uncertainty. In that moment, looking into his big brown eyes, I felt an overwhelming rush of emotions—fear, love, sorrow, and protectiveness all at once.
And yet, the harshest blow wasn’t even the diagnosis itself. It was the suggestion that followed from a psychologist: "Perhaps an institution is the best place for him." He was only two. How could I possibly entertain that thought? In that instant, my grief morphed into something fierce—a determination that would drive me to fight for him, even when the world around us didn’t fully understand.
Back in 2008, the prevalence of autism was 1 in 110, with boys being four times more likely to be diagnosed. Today, that number has shifted to 1 in 36. We’ve learned much more about autism since then, but one thing remains elusive: the cause. There are theories, debates, and endless studies pointing to genetic or environmental factors, but we don’t yet have definitive answers. While this scientific uncertainty leaves many of us searching, it’s not the focus of my writing. What I want to talk about is the grief parents feel upon hearing their child’s autism diagnosis and the journey we all face in finding a way forward.
Receiving that diagnosis—autism—meant I finally had a name to explain why my son wasn’t meeting milestones, why he seemed to exist in a world all his own. But it also meant I had to confront the reality that he—and we—would face challenges others couldn’t begin to understand. And not just autism, but non-verbal severe autism. Today, it’s called level 3 autism, but back then, the label didn’t matter. The reality was what weighed on me, like a fragile object constantly twisted by winds beyond my control. For a while, I felt powerless, blown in whichever direction the storm carried me.
But I wasn’t fragile. Beneath that layer of grief was strength I hadn’t yet tapped into. I come from a lineage of strong people, and my purpose was never more clear: I was here to fight for my child, to give him the best life possible. I just didn’t know how to do it yet.
The hardest part was that the so-called “experts” I was referred to had little real-world experience with autism. They were full of theories and advice, but much of it felt detached from the reality we were living. Some suggestions helped, but nothing truly clicked until I stopped listening to them and started listening to my son. He was telling me, in his own way, what he needed. It wasn’t with words, but his actions, his expressions, his reactions—they were all messages. When I tuned into him, our journey began to change.
Over time, we found our way using methods that worked for us—methods you can read about in my earlier blog post, From Silence to Speech. But through it all, the one thing I learned is that grief can only hold you down for so long. Eventually, you have to move through it, to find the path forward. Yes, the experts have valuable advice, but no one can tell you how to parent your child. Just as there’s no one right way to grieve, there’s no one right way to parent a child with autism. You’ll find your way by listening to your child and following your own instincts.
Grief is part of the process, but it’s not where the story ends. Both you and your child are here for a reason, and it’s up to you to find that purpose and move forward with it. People will judge regardless, but their judgment reveals their character, not yours. Hold your head high and keep going because you got this. LEARN MORE HERE