Respecting Autonomy: The Hidden Cost of Getting Sick While Being Autistic in 2025

08/18/2025    

By: Julie Bolduc DeFilippo, PhD, MSW, LICSW  

Dedication: For my dearest friend and her son as they endure more medical procedures:

Bravery written in whispers, strength stitched into the ordinary moments of each day. This work is for you, and for all who rise again and again, weaving light from the hardest shadows.

I wish this statement didn’t need to be made in 2025, but it does: holding down a child against their will is not care, it is harm. Whether in a classroom or a clinic, this practice must end.

The Importance of Basic Autonomy 

Respect for autonomy begins with the most fundamental human right: bodily autonomy. For children, that should mean one clear rule — never hold a child down.

And yet, across medical offices and school buildings, children are still being physically restrained in the name of compliance. What may appear to adults as a brief or “necessary” intervention often leaves a lasting imprint. These moments of force profoundly alter a child’s relationship with safety, trust, and care, resulting in disengagement from the very systems designed to support them.

Understanding Medical Trauma

Medical trauma doesn’t only occur in emergencies. It is just as likely to happen during everyday encounters when autonomy is ignored — during a shot, a blood draw, or a strep test.

Clinically, we know trauma is not defined by the event itself, but by the individual’s experience of it. Again and again, I’ve heard autistic children recount being pinned down for a vaccine or throat swab. Their words are chillingly similar to those I’ve heard from adult survivors of sexual assault: the terror of being powerless, unsafe, and unheard.

The Parallel in Schools

This problem doesn’t stop in medical settings. Families describe staff physically forcing children into school buildings when they resist. Add to that the widespread use of seclusion and restraint, and the message becomes clear: autonomy is optional when children resist systems.

What This Means: Respecting autonomy isn’t just about good practice—it’s about preventing harm. When children are forced or restrained in medical or school settings, the damage goes far beyond that moment. Many disengage from healthcare and education altogether, carrying fear and mistrust well into adulthood.

Our trusty weighted Slothie—always with my boys during the hardest appointments.

Stories That Stay with Me

This is never the fault of the parent or the child. I’ve been in that position myself — pressured by providers who insisted that a shot or test “must” happen now. Against my instincts, I agreed to help restrain my son.

The outcome? He stopped telling anyone when he didn’t feel well. The cost of that moment was not better care, but broken trust and long-term fear. Repair was possible only because I owned my mistake, told him I was wrong, and committed to never letting it happen again.

Another story stays with me from a client with medical trauma. Despite the family disclosing their child’s history in advance, hospital staff responded to dysregulation with impatience and pressure. When the parent refused to compromise their child’s psychological safety, the hospital called security — on a frightened autistic child.

2025, being autistic is still treated as a security threat.

Why Does This Happen?

Good people — doctors, nurses, teachers — end up in these situations because of systemic pressures: productivity quotas, insurance demands, and time shortages. But forcing compliance is self-defeating. Children disengage. Parents lose trust. Outcomes suffer.

What Parents & Individuals Can Do

When you walk into a doctor’s office or a school meeting, you have the right to ask:

• Has this team been trained in trauma-informed care?

• What safety protocols are in place?

• How will my child’s autonomy be respected?

And remember: you never have to consent to something that doesn’t feel safe. Saying no is your right.

Broader Cultural Shift

Autonomy and consent are not optional extras. Children must learn — and experience — that they have the right to say no, the right to set boundaries, and the right to control what happens to their body. It’s especially troubling when the very adults who should be teaching consent — doctors and teachers — are the ones violating it.

Training Providers & Educators

Trauma-informed care requires intentional training and reflection. Providers need space to debrief, repair, and normalize that it is not a professional failure to admit harm and do better next time. Every provider, school, and hospital should embed this into their culture — not treat it as optional.

Administrative & System-Level Solutions

True systemic change requires structural reform. Reducing caseloads and moving away from fee-for-service models would give providers the time to build relationships and practice trauma-informed care. And in schools, one step is non-negotiable: end seclusion and restraint. When bodily autonomy is violated in school, it mirrors medical trauma.

Integrative Therapies for Healing Medical and School Trauma

Even as we push for systemic change, children and families already carry the scars of trauma. Thankfully, integrative therapies can support recovery.

• Eye Movement Desensitization and Reprocessing (EMDR): backed by strong evidence, EMDR reduces intrusive symptoms, supports regulation, and builds resilience.

• Sound-based therapies: grounded in Polyvagal Theory, these help calm the nervous system and are especially effective for autistic individuals with sensory sensitivities

In my own work, the need has been overwhelming. Many of my clients live with trauma rooted in medical and school experiences. This has led me to pursue training in the Safe and Sound Protocol (SSP), a sound-based intervention designed to reduce autonomic stress and support regulation. I will soon be offering SSP to clients because I see, every day, how urgently needed these tools are.

Closing Reflection

Respecting autonomy isn’t an “extra.” It’s the baseline for safe, ethical, and effective care.

When we honor autonomy, children return. They trust. They heal. When we don’t, the damage can last a lifetime.

The measure of good care is not whether a child complies in the moment. It’s whether they feel safe enough to come back tomorrow.