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The Insurance Risk Behind “Profound Autism”

Creating a separate category like “profound autism” isn’t just a label — it creates a cost tier insurers can use to deny coverage or push families onto Medicaid. And the data shows exactly why that’s dangerous.
🔹 1 in 3 autistic people rely on Medicaid for basic services.

🔹 Medicaid spending on autistic adults’ employment services has decreased even as prevalence increased.

🔹 Waitlists for Medicaid home‑ and community‑based services exceed 900,000+ people nationwide.

🔹 States still spend more on facility‑based care than community living for high‑support‑needs individuals.

So what happens if insurers can say: “This person is profound autism — too expensive. Medicaid should handle it.”
Families get pushed into a system that’s already underfunded, overloaded, and historically tied to institutional models. And when budgets tighten? Cuts hit the highest‑support‑needs group first.

A separate category doesn’t protect people. It isolates them. It creates a target for cost‑cutting. And it opens the door to institutionalization — the very thing disability advocates have fought against for decades.

We don’t need new labels. We need coverage, access, and community‑based supports for every autistic person.

Much for the incredible experience
Sunday I gave myself an early ❤️ gift of -I highly recommend checking out their schedule and attending the next one (I am definitely planning to return). If you need some a rest or some relaxation (in the autism world we sure do) this is what you need.

Sound baths offer significant benefits, including deep relaxation, reduced stress and anxiety, improved sleep, and lower blood pressure by calming the nervous system. Using instruments like gongs and singing bowls, these sessions, shift brain waves from active states to slower, meditative states, promoting mental clarity and emotional healing.

Key benefits of sound baths include:

Deep Relaxation & Stress Reduction: By encouraging the nervous system into a parasympathetic (“rest-and-digest”) state, sound baths ease tension and lower cortisol levels.

Mental Clarity & Emotional Release: Participants often experience reduced anxiety, anger, and depression, resulting in improved focus and enhanced mood.

Physical Healing & Pain Relief: The vibrations can assist in reducing body tension, easing pain, and improving blood flow.

Improved Sleep: The calming effect helps many people fall asleep faster and achieve better sleep quality.

Enhanced Meditation: The soundscape makes it easier for people to enter deep, meditative states without extensive experience

How it WorksSound baths work by bringing the brain into slower alpha, theta, or delta wave patterns (known as entrainment), moving you away from active, high-stress beta waves
(As always this is not medical advice please consult a licensed physician to see if it could benefit you)

In Part 3 of this series, I want to respond to the recent New York Times opinion piece, “Profound Autism Is Difficult Enough Without This Debunked Method.”
The article argues against allowing spelling‑based communication in New York schools — and it does so by leaning heavily on the idea that a broad label like “profound autism” can tell us what a person is capable of.

But generic labels don’t help autistic people.
They limit them.

When we use a label to predict someone’s future, we stop looking for the real reasons they struggle. We stop asking clinical questions. We stop investigating co‑occurring conditions. We stop offering access. And we start assuming incompetence.

My own son was labeled “nonverbal autism.”
He wasn’t speaking at 9.
He started speaking at 11.
And even now, his apraxia affects him in pressured situations or with people he doesn’t trust.
That’s not “profound autism.”
That’s motor planning disorder — a clinical condition that requires clinical support.What helped him wasn’t a label.
It wasn’t predictions about what he would “never” do.
It wasn’t restricting communication options.

What helped him was treating his co‑occurring conditions — the very things so many high‑support‑needs autistic people are actually struggling with:

• apraxia
• motor planning disorder
• sensory‑motor challenges
• GI issues
• anxiety
• OCD
• immune/metabolic issues

These are real, diagnosable medical and neurological needs — not “behaviors” and not evidence of low potential.

This is why I push back when articles use labels like “profound autism” to argue against communication access.
Because communication is a human right.
Because no one should be denied a method that might help them express themselves.
Because we would never deny a Deaf child access to sign language — yet autistic nonspeaking children are routinely denied access to spelling, AAC, typing, or any method that doesn’t fit a narrow definition of “acceptable.” (Continued in comments)

Part 2: So what’s the solution?
How do we get insurance and Medicaid to cover OT, PT, speech, feeding therapy, and medical care instead of funneling everything into ABA?

The answer isn’t fighting ABA study by study.
There are thousands, and the system is built to keep producing them.

The real solution is changing the framework.

Insurance pays for conditions, not labels.
Right now, autism is treated as a behavioral condition — so it gets a behavioral treatment.

But when clinicians document:

• apraxia
• motor planning disorder
• sensory‑motor integration issues
• GI disorders
• immune/metabolic issues
• anxiety
• OCD
• dyspraxia
• hypotonia

…then OT, PT, speech, feeding therapy, and medical care become medically necessary.

We also need:

• clinical subtyping (genotype, phenotype, motor differences, co‑occurring conditions)
• new medical billing codes
• cross‑disciplinary research (with information from the clinical subtyping to give us precision therapies and medicine)
• demonstration models from nonprofits
• parent training on documentation and appeals

This is how we shift the system — not with broader labels, but with precision.

This is why I built my nonprofit.
Families shouldn’t have to drain savings like I did just to get their child the therapies that actually help.

We move forward by honoring the full complexity of autistic lives — and by always presuming competence.

Walking through the woods at Bayonet Farm always settles our nervous systems. There’s something about the quiet, the trees, the light filtering through the branches — and watching Stephen behind the camera — that reminds me why I always, always presumed competence.

My son drove his own go‑kart before he could speak. He hiked trails, explored nature, and learned to frame a photograph long before the world believed he could.

I’ll never forget a family member of another child in a waiting room saying, “I can’t even believe it’s the same child. My grandson couldn’t do that and he’s ‘high‑functioning.’” And that right there is why I don’t use functioning labels.

If I had listened to those labels, Stephen would never be taking these photos. He would have been denied access — again — simply because he didn’t speak yet. And we would never do that in the Deaf community. But once the autism label is applied, logic seems to disappear. We categorize. We gatekeep. We deny access or deny supports depending on how someone presents.

Stephen’s photos are proof of what happens when we presume competence, offer opportunity, and refuse to let labels define a person’s potential.

Nature brings out the best in him — and every time I watch him work, I’m reminded that ability is not measured by speech, and potential is never determined by a label.