If you’ve never lived it, you probably have a picture in your head of what autism looks like. Perhaps a child who struggles to make friends, or someone who needs a little extra support, but ultimately grows up to live independently. That’s not my world. For families like mine, caring for someone with profound autism is a completely different life, and it comes with costs most people don’t see.
It’s Never Just Autism
Profound autism isn’t just “a little harder.” It’s a lifetime of hands-on care. We’re talking about adults who can’t speak, who wear diapers, who can’t make themselves a sandwich or take a shower without help. And then layer on seizures, OCD, bipolar disorder, and severe anxiety. Some, my son Aidan included, have rare conditions you’ve probably never heard of, like DiGeorge syndrome.
This isn’t a phase. It doesn’t “get better.” When the school bus stops coming at 21, everything falls on the family—or the state, if you’re lucky enough to get a residential placement. But even then, the fight isn’t over.
Let’s Talk About Money
New Jersey is one of the most expensive states to live in, and caring for someone with profound autism here? It’s brutal. State programs help, sure, but they don’t cover everything. Families pay out of pocket for clothes, sensory items, and personal care products. Communication devices get lost or broken, and guess who replaces them? Not the group home.
The Weight You Can’t Measure
Here’s what many people don’t talk about: the emotional cost. The constant fear every time your phone buzzes. The guilt when you can’t be everywhere at once. The exhaustion of checking on your child because you don’t trust the system to keep them safe.
A lot of parents quit their jobs because somebody has to handle the endless forms, meetings, and potential emergencies. So not only do you spend more, you most likely earn less. That math doesn’t add up, but this is reality for thousands of families throughout New Jersey.
What Has to Change
Awareness is nice. Blue puzzle pieces, hashtags—great. But families like mine need more than slogans. We need funding for real care, staff who are trained and paid well, and laws that let us install cameras in group homes so our kids are protected.
The truth? The cost of profound autism isn’t just dollars. It’s sleepless nights, burnout, and the fear of what happens when we’re gone. Policymakers need to stop talking and start fixing. Because parents and caregivers can’t do this alone, not forever.