Navigating Healthcare as an Autistic Adult

As a health equity diversity and inclusion consultant, I've dedicated my life to improving healthcare and wellness for everyone. As an autistic individual with a connective tissue disorder and mobility issues who is also a nurse, I've navigated the healthcare system from both sides of the stethoscope. My identities as a female, Black, queer, and ethnically Jewish nurse have shaped my experiences and fueled my passion for intersectionality in healthcare.

The Power of Disclosure: A Turning Point

For years, I struggled to communicate the significance of my autism diagnosis to new healthcare providers. I was open about my experiences, yet something was missing. It took a friend's simple question to spark a revelation. That question - "How could sharing your autism diagnosis enhance your care?"

Initially, I had no clear answer. I just knew it should make a difference. Since then I’ve had a few insights.

What I Want Providers to Understand

patient sitting in a hospital gown

When I disclose my autism, I'm hoping for several things:

1. Recognition that I'm in a highly stressful situation, which may affect my responses

2. Understanding that I'm masking my true feelings during our encounter

3. Awareness that I may need additional time to process information

4. Accurate interpretation of my facial expressions and eye contact - they often don’t match my words particularly when I’m stressed

   
   

However, I realized I had fallen into the trap of the false consensus effect. I mistakenly assumed all healthcare providers had the same level of knowledge about autism as I did.

That they knew what I meant.

A Breakthrough Encounter

Fast forward to today. During my recent urgent care visit, I was prepared to articulate my needs more clearly. I provided context to my autism diagnosis, explaining:

• How stress impacts me

• That this particular visit was challenging due to my pain

• My facial expressions might not accurately reflect my pain level

• My tone and cadence could be misinterpreted as performative

The provider I encountered was exceptional. He listened attentively, asked insightful questions, and I felt empowered to share my experiences. As a result, I left with medication to help me return to work and a sense of relief, knowing my chest x-ray results were good and my hardware and lungs appeared healthy.

The Path Forward: Cultural Humility Over Competence

This experience reinforced my belief in the importance of cultural humility over cultural competence in healthcare. While competence implies an endpoint, humility acknowledges that learning is ongoing. It's about being open, asking questions, and truly listening to patients' experiences.

Join the Conversation

Diversity, Equity and Inclusion in healthcare is about saving lives and improving quality of life for all. When healthcare providers understand and respect diverse experiences, they're better equipped to provide accurate diagnoses, effective treatments, and compassionate care. For instance, recognizing how autism might affect a patient's pain expression can lead to more appropriate pain management. Understanding cultural nuances can improve medication adherence and lifestyle recommendations.

Moreover, Diversity, Equity and Inclusion initiatives help address systemic inequities that have long plagued our healthcare system. From racial disparities in maternal mortality rates to the underdiagnosis of autism in girls and women of color, these issues stem from a lack of diversity in medical research, education, and practice.

By embracing Diversity, Equity and Inclusion, we're not just checking a box – we're transforming healthcare into a more just, effective, and humane system. It's about creating an environment where every patient feels seen, heard, and valued, regardless of their background or identity. This approach not only improves individual health outcomes but also strengthens community health and trust in medical institutions.

As we face global health challenges, from pandemics to chronic diseases, the importance of Diversity, Equity and Inclusion in healthcare becomes even more apparent. Diverse teams bring varied perspectives, leading to more innovative solutions and comprehensive care strategies.

I invite you to join me in advocating for robust Diversity, Equity and Inclusion initiatives in healthcare. Whether you're a healthcare provider, a patient, or simply someone who cares about equitable health outcomes, your voice matters in this crucial conversation. Together, we can build a healthcare system that truly serves everyone – because health equity is not just a goal, it's a fundamental human right.