When "Autism" Becomes the Lazy Answer to Everything
How Medical Bias Hurts Autistic & Medically Complex Kids
I didn’t notice it right away.
In the beginning, I was just a mom trying to untangle symptoms that didn’t make sense together — the pain, the breathlessness, the staring spells, the GI issues, the headaches, the “I don’t feel right” moments my son couldn’t yet explain.
And like every parent of a medically complex or neurodivergent child, I learned to watch closely.
To observe patterns.
To trust my gut.
But everything shifted the moment certain words landed in his chart.
Not in him — in them.
Suddenly every concern I raised got absorbed into one easy, lazy explanation:
“Autism.”
“Sensory.”
“Behavior.”
“Developmental.”
It didn’t seem to matter what the actual symptom was.
If the chart labeled him as autistic — or medically complex — clinicians took the shortcut.
The diagnosis wasn’t the problem.
The bias was.
I want to be very clear:
✨ I’m neurodivergent-affirming
✨ I’m raising a neurodivergent child
✨ I believe autistic kids communicate brilliantly — often in ways clinicians simply aren’t trained to understand
Autism is not a flaw.
Medical bias is.
What I began to see was this:
Once the system thinks it “knows” your child, it stops investigating.
That’s how we ended up in a cycle where:
Constipation? Autism.
Reflux? Autism.
Breathlessness? Autism.
Headaches? Autism.
Pain — real pain — the kind that steals childhood?
Autism.
And when symptoms didn’t fit the autism box, they got tossed into the “complex kid” box instead — a second shortcut.
Take the diagnosis away and what do you have?
A kid in chronic pain who deserved real care.
A Neurologist’s Comment I’ll Never Forget
After one particularly exhausting appointment trail, a neurologist looked at our referral notes and said:
“Oh… you went to a Chiari care hospital.
Of course they said it was Chiari.”
The hospital was Cornell. Not some back alley clinic.
I remember thinking:
Do any of you even want to figure this out?
Because it wasn’t that clinicians disagreed on the diagnosis —
it’s that they weren’t truly looking.
The Medical Maze Autistic & Medically Complex Kids Get Pulled Into
Here’s the pattern I see again and again — and I know so many of you do too:
- Symptoms get mislabeled as behaviors.
- Behaviors get mislabeled as choices.
- Sensory overwhelm gets mislabeled as “difficult.”
- Communication differences get mislabeled as “noncompliance.”
- Real pain gets mislabeled as “part of their condition.”
The common thread?
Clinicians aren’t trained to interpret autistic presentation or medically complex presentation — so they assume instead of assess.
Autism didn’t hide his symptoms.
EDS/POTS/MCAS didn’t hide his symptoms.
His sensory needs didn’t hide his symptoms.
Medical bias hid his symptoms.
The Moment Everything Snapped Into Focus
Every caregiver has a moment where you realize the system will not save your child.
You either speak up loudly,
or you accept quiet dismissal disguised as expertise.
For me, that moment came after yet another appointment where a specialist brushed off breathlessness, back spasms, staring spells — without a single physical exam.
And I thought:
If I don’t push back, nobody will.
Not because he’s autistic.
Not because he’s complex.
But because the people in power didn’t want to see past their assumptions.
What I Want Every Caregiver to Know
You are allowed to say:
- “That symptom needs a real medical explanation.”
- “Autism doesn’t cause oxygen drops.”
- “Sensory needs don’t cause GI bleeding.”
- “Developmental delays don’t cause chronic back pain.”
- “This has nothing to do with behavior. Please look again.”
- “Being medically complex doesn’t make pain ‘expected.’”
- “A diagnosis should guide care — not replace it.”
You’re not being “too much.”
You’re not being dramatic.
You’re not misunderstanding your own child.
You’re noticing what the system is trained to miss.
A Diagnosis Should Open Doors — Not Close Them
Labels are meant to help clinicians understand your child’s needs and communication style.
Instead, too often, they’re used as shortcuts:
- to skip tests
- to skip imaging
- to skip referrals
- to skip listening
- to skip thinking
But autistic kids deserve full medical evaluations.
Medically complex kids deserve full medical evaluations.
Not the half-version.
Not the “it’s probably behavioral” version.
Not the “this is part of autism” version.
The real version.
The human version.
The one every child deserves.
If This Story Hits Home… You’re Not Alone
Maybe your child has been dismissed too.
Maybe your concerns were brushed off.
Maybe you’ve been told:
“It’s just sensory.”
“They’re being dramatic.”
“That’s part of autism.”
“Complex kids are like this.”
Maybe you’ve been made to feel like the problem.
You’re not.
And you’re not imagining it.
This is a systemic issue — one that hurts autistic kids, disabled kids, medically complex kids, and neurodivergent families everywhere.
That’s why I created K&K Studios.
That’s why I built the Medically Complex Kiddo Planner.
That’s why I design every advocacy tool the way I do:
Not to decorate your binder — but to defend your child.
Because when the system stops listening, documentation becomes armor.
Your voice becomes data.
Your presence becomes the variable that changes everything.
Keep pushing.
Keep speaking.
Keep trusting what YOU see.
Your child feels every ounce of your advocacy — even when the room doesn’t.
If this hit you today, you can join me in the trenches — my weekly letter is where I share the moments between the moments.