Part 2: What Helped – And What Hurt – During Our Autism Diagnosis Journey

Embracing the Unexpected: A Family’s Journey with Autism

Part 2: What Helped – And What Hurt – During Our Autism Diagnosis Journey

When you’re walking through something as emotionally charged and life-altering as your child’s autism diagnosis, support—both the kind you receive and the kind you wish you had—matters deeply. For us, the journey has been filled with moments of comfort and confusion, clarity and frustration. Here’s a little of both.

The Worst: “But He’s So Great!”
I can’t tell you how many times I heard this well-meaning phrase as I vulnerably shared my fears about Joel’s potential autism diagnosis (which was later confirmed). On one hand, I understood the intent. People were trying to cheer me up—to remind me of the joy Joel brings and to keep me from spiraling into despair.

But on the other hand, it often felt… dismissive.

I wasn’t saying, “I think Joel has autism, and therefore he’s broken or not valuable.” I was saying, “I think life is about to look very different than I expected. We have a whole new language to learn, a whole new life to adjust to—and I’m scared.”

The response, “But he’s so great!”—at best, missed the mark. At worst, it felt like an accusation, as if I was somehow seeing my son as less than because of how he experiences the world.

I truly believe what people were trying to say was: “Wow, this is hard. And also, Joel is amazing.” But they skipped the first part—the part that validates. The part that meets you in the heaviness and says, “Yes, this is hard. I’m so sorry.”

As a culture, we’re not great at grief. We’re quick to numb it, fix it, or reframe it—often with the best of intentions. But the greatest gift we can offer one another in sorrow isn’t a silver lining. It’s solidarity. It’s presence. It’s permission to say, “This is hard,” before moving to the “But all is not lost” perspective.

Two things can be true at the same time: “This is sad and overwhelming.” And also: “Joel is incredible.” We can hold both.

The Best: “If He Has to Have Autism, I’m Glad He Has You”
In one of my lowest moments, while pouring out my fears and tears about Joel’s future, my brother gently said something that completely reframed my grief:

“Ellen, I know this is so hard. But I just keep thinking about how lucky Joel is. If he has to have autism, I’m so glad you and Paul are his parents. I can’t think of anyone better to walk through this with him. That kid will be so loved and cared for.”

That was the first time my heart caught a glimpse of a shift—from “Why us?” to “What an honor.” His words didn’t erase my grief, but they gave me clarity. They helped me lift my head long enough to see the sacredness of the role we were being invited into.

The Worst: Judgment
I’m still sensitive to how others respond to Joel—especially when they don’t know he’s autistic. He’s loud. He jumps and sings in libraries. He sprints through the church aisles during worship. He is unabashedly joyful and entirely unfiltered.

Once people know he’s autistic, their posture softens—grace, understanding, love. But before they know? I get the exasperated glances. The raised eyebrows. The sighs. The silent assessments of my parenting. The assumption that I lack discipline or control.

And here’s the tension: I don’t want to have to introduce my son as autistic to every stranger in order for him to be treated with kindness. I don’t want to feel like I have to shout over his meltdown, “He has autism!” just to spare us both the judgment. But sometimes, I do. Because otherwise, we get the stares. And it’s not just hard for me—it’s unbearable to watch him be misunderstood.

I’ve even joked that he should wear a T-shirt that says, “I’m autistic. My brain is different. Thanks for holding your judgment.” But I shouldn’t have to arm my child with signage just to receive compassion. And yet… sometimes, that’s what it takes.

The Best: Love Like a Tidal Wave
Grief is strange. Sometimes it clears the room—people don’t know what to say, so they stay silent. But other times, it draws in the most beautiful kind of love. The kind that doesn’t try to say the perfect thing—just something honest and heartfelt.

That’s the kind of support we’ve received. And we are so grateful.

Both sets of our parents live nearby and have been an anchor for us. My mother-in-law, a veteran special education teacher, has been a fountain of wisdom. She and my father-in-law, who raised a child with ADHD (my husband) long before it was widely understood, have been a guiding light.

Our church family has shown us incredible grace. They embrace Joel completely—even joyfully enduring his loud sprints during Sunday service. That kind of love—the kind that welcomes him just as he is—has meant the world to us.

And then there’s the autism community. We’re still new here, but already we’ve felt its warmth. Friends with autistic children reached out right away: “Whenever you’re ready to talk, I’m here.” There’s an unspoken understanding—no pressure, no timeline. Just presence.

Even in our grief, we’ve felt wrapped in love. And we don’t take that for granted.

To the Ones Supporting Families Like Ours
If you know someone navigating a diagnosis like this, don’t worry about saying the “perfect” thing. Just be with them. Let your words match their moment. You don’t have to fix it, lighten it, or reframe it. You just have to see it—and see them.

You can say, “I’m so sorry. I know this is heavy.”
You can also say, “Your child is amazing.”

And sometimes, the greatest support is just showing up—and staying.