05/07/2026
There’s been a lot of talk lately about the next edition of the DSM potentially adding “profound autism” as a more specific diagnosis.
I’m totally in favor of it.
Actually, I think we even need more specific wording across the spectrum, not less. I’d even support bringing back something similar to Asperger’s for people like me and Jude, while keeping “autism” for those who need moderate support, and using “profound autism” for people like Charlie.
Not because anyone is “more autistic” or “less autistic.”
Because our needs are not the same.
Right now, autism is so broad that the same word can describe a fully verbal adult with a job, a driver’s license, and an Instagram account… and my son, who is non-speaking, intellectually disabled, has no safety awareness, and will need 24/7 care for the rest of his life.
Those are not the same support needs.
And when we refuse to name that clearly, people like Charlie disappear.
A lot of places call themselves “inclusive,” but what they really mean is inclusive for autistic people who can follow directions, wait their turn, communicate discomfort, stay with the group, and participate with minimal support.
Charlie was kicked out of “inclusive” swimming lessons.
Not because he isn’t autistic enough.
Because his autism was too much for their version of inclusion.
That’s why language matters.
Specific words help families explain reality.
Specific words help clinicians document needs.
Specific words help schools, insurance companies, programs, and policymakers understand that autism support cannot be one-size-fits-all.
And specific words help make sure the people with the highest needs are not erased by the most palatable version of autism.
Profound autism deserves to be named.
Not to divide the community.
But so everyone gets what they need/deserve.