Making Invisible Needs Visible: Advocating for an Autistic Child

As I sat at lunch with a friend, we found ourselves talking about the highs and lows of motherhood - a typical topic of conversation in this stage of life. As we moved through stories about each of my boys, Dawson became the next focus of our conversation.

She looked at me sincerely and asked, “What’s the hardest part of advocating for him?”

It was a question that made me pause. Advocating, much like parenting, comes with its own highs and lows. But the hardest part? That was something I hadn’t quite put into words before.

And then it hit me. It’s the invisibility of his needs.

Since his identification, I can’t count the number of times I’ve heard, “But he doesn’t look autistic.” As if autism has a specific physical appearance - it doesn’t. And yet, that misconception doesn’t lessen the needs he has, the tools he requires to be successful, or the extra support it takes to help him navigate a world that doesn’t always align with how he experiences it.

Just because others don’t see it doesn’t mean it isn’t there.

And that’s where the challenge lies - advocating for needs that can be perceived as unnecessary simply because they aren’t visible. Our eyes can deceive us into believing something isn’t real.

Even when he was younger, shortly after his diagnosis, I often found myself explaining that his behavior was rooted in autism - not because he was a “bad” child. Some people listened. Others dismissed it as an excuse.

But it was never an excuse. It was always an explanation.

As he has grown - developing, maturing, and learning strategies to navigate the world - I’ve noticed something else: he is often given less grace. Because he is capable. Because he adapts. Because he masks. Because he self-regulates.

But his needs haven’t disappeared. They’ve evolved.

What once looked like a sensory chewy hanging around his neck now looks like a small 3D-printed dragon tucked into his pocket. The need for sensory regulation is still there - the general public just can’t see it.

What once looked like outward frustration - shouting, aggression, behaviors rooted in a lack of regulation tools - has now turned inward. Now it looks like self-shame and isolation. But the need for emotional regulation is still there - the general public just can’t see it.

What once looked like parallel play - playing alongside others without true interaction - has now grown into integrated play. He joins in, engages, and wants to connect. But that connection can sometimes include missed social cues or unintentionally crossing boundaries, as he continues learning how to understand others’ perspectives. His need for social guidance and coaching still exists - the general public just can’t see it.

What once looked like a visual schedule guiding the predictability of his day may not be as outwardly present, but his need for structure still exists. He still relies on visual supports to complete tasks, understand routines, and build independence. His need for executive functioning support is still there - the general public just can’t see it.

And that’s what makes advocacy so hard.

It’s explaining why he needs accommodations, time, grace, and tools—when those needs aren’t obvious. It’s helping others understand why those supports are essential, even when he appears to be doing just fine. Even when he has learned to succeed in spite of the challenges he faces.

Because this was never about giving him an easy way out - it’s about giving him a fair way forward.

As I sat there at lunch, I felt the weight of the expectations placed on Dawson every day - expectations we want him to meet, but only when he’s given the tools, resources, and support he needs to truly be successful.

I will continue to advocate for him.

I will continue to make the invisible visible.

Because he deserves to have what he needs to succeed.