“What If It’s Something Else?” Thoughts on Medical Testing in Autism Care

Wondering about infections, mold, or autoimmune issues in your autistic child? Here’s how I think about labs like anti-NMDA, strep, mycotoxins, and heavy metals — and when they’re truly worth exploring.

One of the most common questions I hear from families after months (or years) of therapy, medications, IEPs, and sensory supports is:

“What if there’s something else going on?”

Not instead of autism — but in addition to it. Something medical. Something inflammatory. Something that might explain why progress has stalled, behaviors have intensified, or your child just seems off in a way no one can quite explain.

These are smart, caring families who’ve done everything “right” — and still feel like they’re missing something.

Let’s talk about that.

Why Families Ask About Medical Testing

It usually starts when a parent wonders:

• Could this be mold exposure?
  
• Is there Lyme disease, or another infection at play?
  
• Could gluten or celiac be triggering inflammation?
  
• Should we rule out heavy metal toxicity?
  
• Could it be something rare like anti-NMDA receptor encephalitis?
  
• Or is this PANDAS or PANS?
  

These questions don’t come out of nowhere. They often emerge when parents are watching symptoms escalate, regulation fall apart, or gains disappear — and wondering if something medical might be amplifying their child’s challenges.

🧪 Medical Tests That Sometimes Make Sense — and When

These are not the right tests for everyone. I don’t recommend them routinely. But they can be helpful in the right context.

Let’s walk through the ones I get asked about most often:

1. Anti-NMDA Receptor Antibodies

This test looks for autoimmune encephalitis, a rare but serious condition where the immune system attacks NMDA receptors in the brain. It can cause:

• Sudden-onset psychosis
  
• Seizures
  
• Motor abnormalities
  
• Catatonia
  
• Dramatic cognitive or behavioral regression
  

It’s rare — but real. And when symptoms appear suddenly and dramatically, this test is worth discussing.

📌 Who orders it: Neurologist, pediatric hospitalist, or immunologist.

2. Heavy Metal Toxicity (Lead, Mercury, Arsenic)

Heavy metal exposure — especially lead — can affect language, cognition, attention, and behavior. It’s more relevant in kids with pica, lead-based paint exposure, or industrial risks, but worth screening if never done.

📌 Who orders it: Pediatrician for basic screening; environmental or integrative MDs for broader testing.

⚠️ Important note: Any evaluation — and especially any treatment — for heavy metal toxicity must be done by someone who truly knows what they’re doing.

I’ve seen chelation offered casually in some spaces, even when there’s no confirmed lead poisoning — and that is not safe.

Chelation therapy in the absence of a clear toxic exposure is dangerous. It can strip essential minerals, destabilize kids, and create new medical issues without offering any benefit. This is not a harmless “detox” — it’s a medical intervention that should be approached with extreme caution and only when clinically indicated.

3. Mold and Mycotoxin Exposure

This one is complex. Mold toxicity has become a buzzword, but it’s also a valid concern in some cases — especially if there’s known exposure, chronic fatigue, or immune symptoms.

Testing is controversial and varies by provider. Some families pursue:

• Urine mycotoxin panels
• Inflammatory or immune markers
• Environmental inspections at home

Common providers include:

• Integrative medicine MDs
• Environmental medicine specialists
• Naturopathic doctors (NDs) with pediatric experience
  

📌 Who orders it: Integrative MDs, NDs, or functional medicine providers.

4. Celiac Disease & Gluten Sensitivity

Celiac disease is an autoimmune condition triggered by gluten. It can affect mood, sleep, energy, attention, and growth — not just the gut.

Even if celiac is ruled out, some families DO notice improved regulation with gluten-free diets. The science is still catching up to the lived experience — and both matter. In my clinical experience, most autistic kids do not show meaningful improvements with gluten removal. And more often, I see that restricting gluten — especially without strong clinical indicators — creates more stress, power struggles, and nutritional gaps than benefits.

📌 Who orders it: Pediatricians, GI specialists, and integrative providers.

5. Infections: PANDAS, PANS, Chronic Immune Activation

Here’s where things get especially nuanced.

In some children, infections appear to trigger:

• Sudden-onset OCD or tics
  
• Rage attacks or regression
  
• School refusal or acute anxiety
  
• Loss of skills or speech

From my own experience, strep-triggered PANDAS is the most common medical contributor I’ve seen.

But I’ve also seen plenty of children with immune-driven symptoms who don’t meet strict PANDAS criteria — yet clearly benefit from treating inflammation or infection.

These kids may not respond well to typical psychiatric meds alone. In many cases, uncovering the immune piece opens doors that behavioral therapy or meds couldn’t touch.

📌 Who orders it: Pediatricians, PANS/PANDAS specialists, rheumatologists, and integrative MDs.

🧠 My Clinical Take

Let me be really clear:

I do not recommend this kind of medical testing as blanket screening for most autistic kids.

These are not routine screening labs. They are not simple checklists or protocols. 

But — when the picture changes dramatically, or a child is suffering in a way that seems beyond their baseline neurodivergence, it’s appropriate to pause and ask:

Could something medical be adding fuel to the fire?

In those situations — when there’s regression, no response to good care, or something just doesn’t add up — a careful, individualized workup can sometimes reveal pieces we hadn’t considered.

That said, it’s important to name this too:

There is no one-size-fits-all treatment in autism medical/mental health needs. And every intervention — even the “natural” or “functional” ones — comes with side effect risks.

What helps one child might overwhelm another. At the same time, the chase for obscure answers leads families further from the grounding strategies that do help.

These tests aren’t about finding flaws or "fixing autism.” They’re about understanding the whole picture — especially when distress is clearly outpacing a child’s capacity.

What Kind of Doctor Should We See?

If you're considering this kind of workup, here’s where to start:

• Pediatrician/ PCP
• Neurologist – For seizures, regression, or autoimmune concerns
  
• Gastroenterologist – For celiac, chronic GI issues
  
• Immunologist/Rheumatologist/ Neurologist– For autoimmune panels, PANS
  
• Integrative or Functional Medicine MD – For complex immune, metabolic, or environmental evaluations
  
• Naturopathic Doctor (ND) 

No one provider does it all. But a collaborative team can help you think clearly and move forward without fear!

Final Thoughts: You’re Not Overreacting — You’re Advocating

If you’re asking these questions, you’re not being dramatic or “doing too much.” You’re doing what parents do when their child is struggling — looking deeper, asking why, and refusing to settle for incomplete answers.

This kind of medical detective work isn’t for everyone. It’s not the place to start for most. But in the right context, with the right guidance, it can bring clarity — or at the very least, peace of mind that you’ve ruled out what matters most.

There’s no single roadmap. But with a thoughtful team, a curious mindset, and a commitment to your child’s well-being, you can make informed decisions — without fear or overwhelm driving the process.

🧡 You deserve a care team that takes your questions seriously, respects neurodivergence, and collaborates instead of dismisses.

➡️ Want support as you navigate this layer of care? Join our Autism Roadmaps community for grounded guidance, lived experience, and clinical clarity — all in one place.