02/10/2025
I know not everyone will agree with me, and that’s fine but I’m going to say it anyway. I believe profound autism should be recognized as a separate diagnosis.
Here’s why. Right now, the autism spectrum is stretched so wide it’s meaningless. The same label covers:
• Someone who is non-speaking, intellectually disabled, requires 24/7 care, and will never live independently.
• And someone else who is articulate, has a career, drives, and posts essays about autism online.
Both are “autistic.” But the realities are worlds apart.
I see this every day as a mom. Programs and events that are considered “inclusive” often work just fine for my son Jude. He can join in swim lessons. He can participate in sensory-friendly hours. He can manage school in the right environment. That’s inclusion, for him.
But for Charlie? It’s a completely different story. Swim lessons? Impossible he could drown in seconds without one-on-one support. Sensory-friendly hours? Still too overwhelming. School “inclusion”? He needs constant supervision and can’t sit in a classroom which is why he’s in a school for children with SEVERE disabilities. The things advertised as inclusive aren’t inclusive enough for kids like Charlie.
And that’s the problem. When we lump everyone under the same autism label, the public thinks “inclusive” covers everyone. But it doesn’t. The kids who need the most, the ones with profound autism, end up excluded from the very spaces that claim to be for them.
This is why I believe profound autism should be its own diagnosis. Not to create division, but to create clarity. To make sure policies, funding, and programs actually reflect the people with the highest support needs, not just those who can speak for themselves like me.
I hear all the time that separating out profound autism is “ableist” or “divisive.” No. What’s actually harmful is pretending Charlie’s reality is the same as Jude’s, or the same as someone who can write 2,000 words on why functioning labels are offensive.
Autism is not a monolith. Words matter. Labels matter. They determine who gets services, who gets research dollars, and who gets forgotten. And right now, the one-size-fits-all label is leaving behind families like mine.
So yes, I believe profound autism deserves its own recognition. Not to erase anyone else’s story but to make sure kids like Charlie aren’t erased either.
