Finally got some hope for the DSM VI…You know those moments when you’re listening to something and suddenly you sit up like wait… excuse me?
That was me today.
Because The Daily featured Dr. Cathy Lord, who basically said the autism spectrum is now too broad, and kids like Charlie are getting erased.
This isn’t a random TikTok self-advocate.
This isn’t someone who stumbled into the autism conversation by accident.
This is one of the architects of the spectrum as we know it today. The DSM 5.And even she’s saying:
We need to rethink it. FINALLY!
Let’s rethink the autism spectrum
Listening to Cathy Lord openly acknowledge that the spectrum has stretched too far…
It felt huge.
For years, myself and other autism advocates have been advocating for the spectrum to be split.
Because let’s be real:
When the word “autism” covers everyone from
- non-speaking children who need 24/7 support
to - fully independent adults writing essays about masking…
…it becomes almost impossible to talk about needs, safety, services, or reality without someone saying, “Not all autistic people…”
Yes. Exactly.
Not all autistic people.
That’s the point.
And kids like Charlie?
Children and adults with profound autism?
They’re the ones who get pushed to the edges of the conversation until they practically disappear.
The DSM needs to be updated
The problem isn’t autistic people.
The problem isn’t families.
The problem isn’t the diversity of experiences.
The problem is that the DSM v is too blurry.
All the old subtypes were merged into one giant, stretched-out spectrum, and now the differences inside it are so enormous they barely fit under the same word anymore.
And when that happens?
Children with profound autism get overshadowed.
Their needs get minimized.
Their struggles get flattened into talking points.
Their caregivers get told their reality isn’t valid because “that’s not autism.”Except… it is.
It’s just a very, very different kind. That’s why I want to see profound autism as its own in the DSM VI
Hearing Cathy Lord Say It Out Loud Gives me Hope for the DSM VI
I don’t think people realize how big this is.
When someone inside the system, someone who shaped the DSM criteria, someone who helped merge the old categories, stands on a national platform and says that we may have gone too far and we need more nuance. That’s not small.
It’s a wake-up call.
And honestly?
It gave me something I haven’t felt in a while:
Hope.
Profound Autism Needs Recognition in the DSM
Families like mine have been pushing for years to make sure the world understands that profound autism exists
Charlie isn’t “bad at masking.”
He is profoundly autistic, and his needs are profoundly different. No pun intended.
We don’t need to pretend everyone’s experience is the same.
We need a system that recognizes the full range, clearly, honestly, and without shame.
So… DSM VI? Maybe There’s Hope.
If Cathy Lord is openly saying the spectrum needs rethinking…
If experts are finally acknowledging how wide the gap has become…
If profound autism is starting to get named instead of avoided…
Then maybe — maybe — the DSM-VI will bring back the nuance we lost.
Fingers crossed.
Because families like mine can’t keep trying to fit into a definition that was never built for us.
2 Comments
J
2025-12-01 at 11:29 AMAs someone diagnosed with level 1 “autism” I actually fully agree. It actually does more harm than good to lump everyone together into one diagnosis. It leads to fully capable children with above-average intelligence to be mistakenly placed in classrooms with kids who can’t speak and are grade levels behind. It makes those kids resent their severely autistic classmates because to everyone else they’re no different from them.
In school, I had to resort to acting out and purposely getting in trouble in order to be taken seriously among my teachers so I could be placed in regular classes where I belonged. A boy in my class who was in the same boat as me coped by bullying the more severely autistic kids in hopes that the teachers would kick him out of special ed. Without even fully realizing it, I started to follow his example until I just got fed up and started skipping school to smoke at the park.
The DSM desperately needs to split the two sides of the autism spectrum because if they don’t, more and more kids are going to end up in these situations, and it won’t be good for the level ones or the profoundly autistic students. Everyone suffers in this current system.
Andrea
2025-12-10 at 9:08 AMEileen in January 2025 a test was launched called the gut health test based on modern research. Eileen there is overwhelming research that almost all autism is caused by a GI tract that has deficient bacterial diversity that causes opportunistic infections of E Coli, C Diff, or both, and Candidia. I write OVER and OVER and OVER because I believe Charle has either para cresol or indoxyl sulfate in his body. He probably also has a secondary infection if Candidia that made him so disturbed last year. Please order the Analutos test Eileen. If Charlie has ANY of these bacterial/fungal waste toxins in his body you can FIX it through diet, antifungals, and yes a Fecal Microbiome Transplant. It’s not a cure but you could give your son PEACE in his own body.