The Erasure of Profound Autism: A Response to USA Today’s One-Sided Narrative

Enough is enough. Once again, mainstream media completely misrepresents autism. It’s becoming too common, and we need to speak up.

The USA Today article lacks balance. A small section about profound autism was only added after the National Council on Severe Autism reached out, but the overall narrative remains the same: autism is just a “neutral fact,” something that doesn’t need fixing or concern. How easy it must be to say that when you’re high-functioning, verbal, and independent. But for families like mine, autism is anything but neutral.

How easy for someone like Gross to say autism is neutral when she has the privilege of giving interviews on the topic. But what about those with severe autism, the ones who can’t speak for themselves? The ones who face life-threatening challenges every single day? The ones who will never live independently? The ones whose parents lie awake at night wondering what will happen to them when they’re gone?

The Reality of Profound Autism

My son, Charlie, is profoundly autistic. He can’t speak. He can’t be left unsupervised for even a moment because he might swallow screws or run into traffic. He will need lifelong care. He struggles with basic self-care and communication, making even the simplest aspects of daily life overwhelming.

And he’s not alone.

Many individuals with profound autism require 24/7 supervision, not just gentle support. Some are in constant distress, unable to express what’s wrong. Others engage in self-injurious behaviors, biting themselves, banging their heads against walls, because they have no other way to communicate their frustration or pain. Families are exhausted, emotionally and physically, trying to keep their children safe while navigating a world that refuses to acknowledge their struggles.

The Media’s Ongoing Erasure of Profound Autism

Yet, instead of centering these voices, the article shifts focus to self-diagnosis and TikTok trends. Instead of amplifying the parents and caregivers navigating profound autism every day, it quotes activists who insist that autism is neither good nor bad, just different. That kind of rhetoric might resonate with high-functioning autistic adults who can advocate for themselves, but it’s a slap in the face to families who live in survival mode.

If autism was indeed “just a difference,” parents wouldn’t have to fight for services. They wouldn’t have to battle insurance companies, school systems, and even their own communities to get basic support. If autism was just a neutral trait, we wouldn’t see families in crisis, struggling to find appropriate housing, therapies, and care for their severely autistic children.

A Call for Honest Conversations

We need real conversations about autism, not just the kind that make people feel good, but the kind that acknowledge the hard truths, the struggles, and the reality of profound autism. The media needs to stop erasing the most vulnerable members of the autism community. Families like mine are not looking for pity, but we are demanding recognition and support.

Because ignoring profound autism won’t make it disappear. And pretending it doesn’t exist doesn’t help those who need it the most. The hard truths, the struggles, and the reality of profound autism. Because ignoring it won’t make it disappear.