11/15/2025
Why Profound Autism Needs Its Own Diagnosis, From a Mom Living It Every Day
There’s something I need to say, and I know many parents in our world will understand it before they even finish this sentence:
Profound autism is not the same experience as what most people picture when they hear “autism.”
Most people imagine:
• a quirky kid
• a little social awkwardness
• a brilliant mind
• maybe some sensory challenges
That’s autism for some families and those stories deserve to be told.
That is not our story.
It is not my son’s story.
It is not the story of the children and adults who live with profound autism every single day.
This is why we need a separate diagnosis not to divide the community, but to finally tell the truth about the level of care our kids require.
In our world, autism is not invisible. It is all-consuming.
My son lives with:
• very limited communication
• severe sensory overload
• dangerous dysregulation episodes
• self-injury
• sleep that comes in scattered pieces
• rituals that hold his world together
• a need for 24/7 supervision just to stay safe
I love him more than my own breath, but his disability is profound, complex, and often painful for his body, his brain, and his spirit.
The systems around us have no idea what to do with a child like him, because he is buried under the same ASD label as kids who may go to college, live independently, and advocate for themselves.
That wide of a spectrum isn’t just confusing, ITS DANGEROUS
Profound autism comes with challenges most people never see.
People don’t see the nights where he screams in fear and I hold him until the storm passes.
They don’t see the self-injury, the head-banging, the biting, the bruises.
They don’t see the sensory world that crushes him:
the buzzing lights, the echoes, the touch that feels like fire.
They don’t see the medical stack…the seizures, the GI pain, the sleep disorder, the constant guessing game between behavior and medical distress.
They don’t see the toll on the whole family, the worry that keeps you up at 3AM, the quiet sobbing in the shower because you can’t fall apart anywhere else.
They definitely don’t see the fear every parent of a profoundly autistic child carries:
“Who will love him, protect him, and keep him safe when I’m gone?”
We need a separate diagnosis because our children need a separate level of care.
The world cannot support what it refuses to acknowledge!!!
When all autism is treated as “the same,” kids like my son:
• get denied services
• get placed in inappropriate programs
• get misunderstood in crisis
• get restrained by people who aren’t trained
• get written off as “behavioral”
• get lost in a system built for someone else entirely
A separate diagnosis would finally say:
These children and adults exist.
Their needs are real.
Their challenges are medical, not moral.
Their supports must be lifelong.
Their families cannot do this alone.
This is not divisive,it’s protective.
We’re not trying to separate ourselves from anyone.
But the truth is:
PROfOUND AUTISM requires different services, different funding, different training, different housing, and different crisis care than mild autism.
Both ends of the spectrum deserve a voice.
Both deserve support.
Both deserve understanding.
But they are not the same.
By pretending they are,is hurting the children with the highest needs.
If the world wants to help our kids, it first has to see them clearly.
My son is the love of my life.
He shines in ways the world doesn’t always understand.
He is joyful, magical, curious, sacred, and pure.
he also lives with a disability so profound that it shapes every moment of every day, for him, and for everyone who loves him.
This is why I speak.
Why I fight.
Why I advocate.
Why Bobby’s World exists.
Not to divide,but to protect.
To educate.
To push for the care our kids desperately need.
To build a future where they are safe, supported, and understood.
To remind the world that profound autism is real, and it deserves to be named.
💙
Jillian Eisloeffel
Bobby’s World
