Autism Mom Support Hub

In the months leading up to the diagnosis, I had already felt a creeping sense of worry and confusion — moments of self-doubt, questions I didn’t know how to answer, and fears I wasn’t ready to name. But it wasn’t until the official diagnosis was given that the full weight of it started to settle in.

I remember the months leading up to his birth like many first-time moms do — planning and imagining every detail of the life I thought we would have. I researched everything: what my birth plan was going to be, what should go in my hospital bag, what to eat and what to avoid during pregnancy, how to capture those first perfect photos, and all the little “do this or don’t do that” advice from books, blogs, and friends. I was preparing for everything I could anticipate — except nothing could prepare me for the reality of life afterwards, when things might not go exactly as planned. 

The idea that my child might one day be diagnosed with autism, that he might navigate the world differently than I imagined, never crossed my mind. And yet, once that reality landed, I realized that all those carefully laid expectations about birth and babyhood were just the beginning — the true learning, and the grief I didn’t know I was carrying, came later, as we faced the unexpected journey together.

It was a friend of mine, a fellow mental health therapist, who first put language to what I was feeling. I shared my feelings and the diagnosis with her, bracing myself for judgment or maybe advice, and instead she said something that stopped me in my tracks: “You’re grieving.” 

Grieving? Me? Who died? I didn’t understand. But she went on to explain that what I was experiencing was a very real, very complex grief: the loss of the child I thought my son would be, the future I had imagined for him, the expectations I had silently carried since the day I first held him in my arms. As a mental health therapist, I know grief. But this time, I was too busy trying to be strong, trying to process the world of therapy appointments, evaluations, and early interventions that I couldn’t see it for myself. (This is why I believe in community so much…. but more of that at a later time).

In that moment, everything shifted. I realized that the sadness, the frustration, the sense of loss that had been simmering beneath the surface for months wasn’t just worry or stress — it was grief. And acknowledging it allowed me to start giving myself permission to feel, to process, and eventually, to start the journey of acceptance.

Even with the diagnosis in hand, the reality didn’t hit all at once. In the weeks and months that followed, I found myself constantly learning, constantly noticing patterns, and, yes, constantly comparing. Not to be competitive, but to try to understand what was “typical” and what wasn’t — a trap I think so many of us fall into. It was in these moments that the grief deepened, because it wasn’t just about language delays or behaviors; it was about realizing that my son’s path was going to be different than what I had imagined. And that difference, while meaningful and beautiful, required letting go of expectations.

I had to navigate my own internal comparisons — to other children, to other families, to what I thought my son’s life “should” look like. These moments, though challenging, forced me to confront my own expectations and, ultimately, my own capacity for compassion. I learned that while therapy techniques and interventions are important, so is the emotional work of being present, flexible, and patient — not just with him, but with myself as a mother learning alongside him.

Grief, I came to realize, isn’t something you can schedule or predict. It doesn’t have a timeline, and it doesn’t end the moment a diagnosis is given. It ebbs and flows, appearing quietly in moments of reflection or loudly in moments of overwhelm. What helped me most was having someone who could name it, who could hold space for it without judgment, and who reminded me that this grief was not a sign of failure — it was a testament to the depth of love I have for my child.

For other moms reading this, especially those who are just beginning their journey, I want to say this: it’s okay to grieve. It’s okay to feel lost, overwhelmed, and unsure. It’s okay if the diagnosis doesn’t feel like clarity at first — because clarity is a process, and so is understanding your child and yourself in a new way. The grief is part of that process, and it doesn’t diminish your love, your strength, or your capacity to be the mother your child needs.

My child is not the child I imagined — he is even more extraordinary in ways I couldn’t have predicted. And as I continue to learn, grow, and navigate this path, I am discovering that the most important part of the journey is meeting him where he is, celebrating the small wins, embracing the imperfections, and finding compassion for both him and myself along the way.