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Autism, Behavior, and Hidden Illness

advocacy autism parenting Jul 14, 2025

When Behavior Isn’t Behavior: My Family’s Journey with Autism and Chronic Infection

Homeschooling a nonspeaking autistic child takes patience, creativity and deep love. For my family, there was an added challenge I didn’t see coming: my son's chronic infection that for years was misdiagnosed as aggressive behavior and referred out to ABA for treatment.

Autism Oasis recently hosted a free webinar to share our story: my son's symptoms, how our PANS doctor knew within minutes that Bartonella was probably the problem, the testing process and how we're treating him.

Our Story

For years, my son’s severe autism symptoms were made harder by what we now know was chronic Bartonella infection. Doctors and therapists dismissed his symptoms as the realities of severe autism and said toughen up or send him to a group home.

But his weren’t typical severe autism challenges. They included:

  • Unexplained fevers in infancy and dangerous fever spikes as a toddler
  • Extreme irritability and out of control rage
  • Regression of basic skills like toileting
  • Confusion - he would look at me as if he didn't know me.
  • Self-injurious behaviors (SIBs), injuries to others and severe property damage.
  • Red lines on the skin that looked like stretch marks
  • Severe pain in the lower legs and feet

Eventually, professionals diagnosed him with anxiety-triggered schizophrenia and prescribed the psychiatric medication Abilify (similar to Risperdal).

However, we had earlier worked with a PANS doctor who had him tested for Bartonella, among other things. Bartonella is a bacterial infection that can cause neurological and psychiatric symptoms—it's a common PANS infection. It can make communication harder, regulation impossible, and daily life painful. While our first attempt to treat Bartonella failed we didn't give up and used the psychiatric meds to stabilize him so we could treat it. 

This isn’t about “curing autism.” My son is autistic, and we celebrate who he is. But we’re determined to reduce his pain and help him access the world.

Why We Shared This in a Webinar

We want other parents to know they’re not alone. If your child is struggling with severe or unexplained behaviors, don’t automatically accept “it’s just autism” as the only answer. There might be a medical component worth exploring. Even if it’s rare or complex, it’s worth asking questions.

We’re not doctors, and this isn’t medical advice—just the experience of one teenager with nonspeaking autism who isn't cured of anything yet, but his symptoms have reduced enough so he can go to the beach, go swimming with friends and move about freely in the world without fear.

👉 Interested? If you’d like to watch our webinar and get the same helpful resources we shared with live attendees, please share your name and email address with us and we’ll send you:

  • The full webinar replay link
  • All the downloadable materials and resources

We hope this helps you feel supported and informed on your own journey.

 

 

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