There comes a point where awareness isn’t enough. Families like mine have been “raising awareness” for decades, and yet every phone call, every meeting, every battle for services still feels like we are starting from scratch.
As many of you know, my son, Aidan has profound autism. That means he will always need someone by his side to eat, to take care of himself, to stay safe. He is nonverbal, still in diapers, and requires round-the-clock care. It’s not a phase with a magical cure waiting to be released. It’s our reality.
People often mean well when they say they “support autism.” But the truth is, awareness doesn’t build systems. It doesn’t keep quality staff in group homes. It doesn’t train caregivers, enforce laws, or make sure a young man like my son isn’t sent to school in dirty clothes. What we need now isn’t awareness. It’s accountability.
Profound Autism Is Not the Same as Autism
The term profound autism was created to help people understand the difference between those who can live independently and those who will never be able to. Around 30% of the autism population falls into this category.
Profound autism often comes with serious medical and behavioral conditions including epilepsy, anxiety, OCD, sensory disorders, and immune deficiencies that make daily life incredibly complex.
When RFK Jr. became the first national figure to address profound autism directly, I felt something I hadn’t in a long time: recognition. He said what so many families already know—that this group has been ignored in both policy and funding. We don’t need another slogan. We need a system that sees the full picture.
The Real Crisis: Care, Oversight, and Support
In New Jersey, families are drowning in paperwork while the people caring for our children are paid barely above minimum wage. The DDD sets standards for group homes, but enforcement is weak and turnover is constant. Every time a trained worker leaves, another unfamiliar face steps in and our children pay the price.
I’ve watched this happen again and again. The problem isn’t that people don’t care. It’s that the system doesn’t hold anyone accountable when care falls apart. Families shouldn’t have to file complaints, chase down administrators, or visit daily just to make sure their loved ones are safe.
Real support means fully vetting and funding staffing, conducting surprise inspections, and giving guardians access to records without miles of red tape. It means treating parents as partners, not problems.
Families Know More Than the System Thinks
When you live this life, you become an expert whether you planned to or not. You learn medical terms, behavior charts, medication dosages, and crisis protocols by necessity. Yet too often, families are dismissed in meetings by people who have never spent a single night caring for someone with profound autism.
Every policy meeting, every state decision, should include the voices of the parents and caregivers living this reality. We don’t need to be invited for a quote after the fact. We need a seat at the table before decisions are made.
Turning Awareness Into Action
Action starts with funding, transparency, and enforcement. It means checking on group homes unannounced. It means collecting real data on abuse and neglect, not just filing it away. It means investing in the workers who show up day after day to do the hardest jobs.
If you truly want to help, stop asking us to raise awareness. Start asking where the money went, who’s being held accountable, and how the most vulnerable members of our communities are really being treated.
Because awareness doesn’t keep our kids safe. Action does.