When Autism and Chronic Illness Collide

About the Author

Brenda Dater, MSW, MPH, is the executive director at AANE and the author of “Parenting Without Panic.” Brenda is a mom of three, and her eldest is an Autistic woman. Brenda has facilitated parent support groups for over 20 years and thoroughly enjoys creating an environment where parents can find the support, information, and the community they need.

For many Autistic people, health challenges aren’t occasional or peripheral. They are ongoing, deeply intertwined with daily life, and often invisible to others.

With her permission, I want to share part of my daughter Rachel’s story.

In the span of just one year between 2020 and 2021, at the height of COVID, Rachel was diagnosed with type 1 diabetes, celiac disease, autoimmune thyroid disease, and cancer. There was no pause between diagnoses. Each brought new specialists, treatments, medications, monitoring, and life-altering changes, all unfolding during a time of isolation, disrupted care, and enormous uncertainty.

What doesn’t show up in a medical chart is how profoundly autism shapes the experience of navigating serious illness. Autistic traits like communication differences and sensory sensitivities don’t disappear when you’re sick. And chronic conditions don’t wait for sensory overload or burnout to resolve.

Anyone managing health conditions has to deal with stress and strain of rushed appointments, the nightmare of insurance systems, and the deep anxiety of uncertain outcomes. But medical care often requires extra work for Autistic people. Appointments can be unpredictable and communication may be unclear or overwhelming. Healthcare environments can be sensory minefields. Even just interpreting body signals like pain and conveying that information to healthcare professionals can be extremely frustrating. All of this takes energy – energy that then isn’t available for school, work, relationships, or managing day-to-day responsibilities.

One moment stays with me from that first year after Rachel received her diagnoses.

Rachel went in for surgery related to her cancer and became so overwhelmed by anxiety as she was being prepped that the surgery had to be cancelled. Once everyone recovered from that experience, we were able to talk with her surgeon – not just about the procedure, but about Rachel as a whole person.

The surgeon listened. She spoke directly with Rachel and suggested simple adjustments: an anti-anxiety medication the morning of surgery and scheduling her as the first case of the day, reducing waiting and unpredictability. The next time, the surgery went forward smoothly.

Afterwards, Rachel even said, “That wasn’t so bad.”

That moment when the surgeon took the time to sit down with Rachel mattered, not because it erased fear, but because someone listened, adapted, and treated accommodations as part of good medical care, not an inconvenience.

Chronic illness doesn’t just affect the body. It affects mental health, identity, and hope. Managing multiple conditions requires constant vigilance. Rachel is constantly monitoring symptoms, food, medications, appointments, and uncertainty. For Autistic people, that ongoing demand can heighten anxiety and contribute to burnout.

When people question why someone with chronic health conditions is struggling with work or attending school, they often overlook how much energy is already consumed simply staying medically stable. The cost is real and cumulative.

Rachel’s experience is deeply personal, but it’s not rare.

Research shows that Autistic people experience higher rates of co-occurring physical health conditions and face significant barriers to healthcare, especially related to communication, sensory environments, and provider understanding. These barriers aren’t just frustrating. They’re linked to worse health outcomes and lower quality of life.

The problem isn’t autism. The problem is systems that aren’t built to support Autistic bodies and minds, especially when health becomes complex.

Rachel wants her story shared because she knows she is not alone and because no Autistic person–and actually no person of any neurology navigating chronic conditions should have to feel unseen, disbelieved, or unsupported.

That means shifting healthcare where the standard care is:

• Respecting communication differences
• Offering clear, written information
• Allowing extra time and support
• Reducing sensory stress when possible
• Honoring accommodations without question, not treating them as special favors
  

At AANE, we believe Autistic people deserve healthcare that is not only clinically competent, but deeply human. The burden of chronic illness is already heavy. The world does not need to make it heavier. Accessible, autism-informed care isn’t “special treatment.” It’s essential healthcare.