💔 Just because I appear “high functioning” doesn’t mean I’m not severely disabled.
I want to share something deeply personal because I’m exhausted from people looking at me and assuming I’m doing better than I actually am.
I am diagnosed with Level 3 autism without intellectual disabilities, which means I have very substantial support needs. I also have an unspecified neurocognitive disorder that significantly impairs my cognitive functioning, and I’m suffering from severe catatonia.
These aren’t just diagnoses written on a piece of paper. They affect every single aspect of my life, every single day.
One of the hardest things about my disabilities is that people don’t always see how much I’m struggling. Because I can speak, communicate my thoughts, create beautiful artwork, and sometimes appear articulate and capable, people automatically assume I’m “high functioning.”
But being verbal does not mean I’m independent. Being intelligent does not mean I’m capable of functioning without extensive support. Being talented does not mean I’m not severely disabled.
What people don’t see is the constant regression. They don’t see how my cognitive abilities fluctuate, how I lose skills, how difficult everyday tasks can become, or how terrifying it is to feel myself losing abilities that I once had.
They don’t see the impact of my catatonia or how severely it affects my ability to function.
Even my speech isn’t guaranteed.
There are times when I can communicate verbally, and there are times when my speech regresses or becomes inaccessible. That’s why I carry my AAC (augmentative and alternative communication) device everywhere I go. I never know when I might lose the ability to communicate through speech, and I need another way to express myself.
Imagine never knowing when something as basic as speaking might suddenly become impossible.
I also require 24/7 care and range-of-sight supervision. I cannot safely be left to navigate life independently. I need constant support, monitoring, and assistance because of the severity and complexity of my disabilities.
And one of the most painful realities I’ve had to accept is that I will never be able to live independently.
Not because I don’t want independence. Not because I haven’t tried hard enough. Not because I’m unwilling to push myself.
But because my medical and neurological needs are simply too complex.
I wish people understood how heartbreaking it is to experience regression while everyone around you insists that you’re doing fine.
I wish people understood how isolating it feels to have significant disabilities that are constantly minimized because you don’t fit their idea of what severe autism is supposed to look like.
Level 3 autism does not automatically mean someone has an intellectual disability. It does not automatically mean someone is nonspeaking. And it certainly doesn’t mean someone cannot be creative, articulate, or intelligent.
I can be all of those things and still require very substantial support.
My ability to paint, draw, write, or express myself does not cancel out my disabilities. My artistic abilities are not proof that I can hold a traditional job, live alone, or function without continuous assistance.
Sometimes people see the finished artwork, the social media posts, or the moments when I’m communicating well. What they don’t see is everything happening behind the scenes just to get through another day.
I am not exaggerating my disabilities. I am not seeking pity. I am asking to be understood.
I’m grieving abilities I’m losing. I’m struggling with limitations that most people will never see. I’m trying to navigate a life that requires an extraordinary amount of support while constantly being told that I seem too capable to be as disabled as I am.
And that hurts more than I can explain.
Please stop measuring someone’s disability by how well they speak, how intelligent they appear, how talented they are, or how much they can accomplish on a good day.
You can be intelligent and severely disabled. You can be verbal and still need an AAC device. You can be creative and still require 24/7 care. You can look capable on the outside while struggling tremendously on the inside.
I don’t need people to tell me how high functioning I seem.
I need people to recognize how hard I’m fighting just to function.
My disabilities are real. My regression is real. My support needs are real. And I deserve to be believed, respected, and understood. ♾️💔
