The Journey of an Autistic Advocate: From Diagnosis to Defying Expectations

The Journey of an Autistic Advocate: From Diagnosis to Defying Expectations

Mar 4, 2025

When I was diagnosed on the autism spectrum at the age of five in Brisbane, Australia, my parents were given a grim outlook. The pediatrician told them I would never get a job, never …

When I was diagnosed on the autism spectrum at the age of five in Brisbane, Australia, my parents were given a grim outlook. The pediatrician told them I would never get a job, never get married, and never move out of their home. At the time, Asperger’s syndrome — an outdated term for a form of autism — was considered rare, affecting “only 1 in 10,000 people.” My father refused to accept that label, declaring, “My son is not a freak.”

Decades later, I now understand what he meant. Autism was, and still is, a fundamental part of who I am, not a deficit that defined my future. However, growing up autistic came with challenges, especially in a world that struggled to understand neurodiversity.

The Evolution of Autism Awareness

Since my diagnosis, the global understanding of autism has drastically improved. As part of the Global Burden of Disease (GBD) 2021 Study, my colleagues and I estimated that 1 in 127 people worldwide are on the autism spectrum — a far cry from the statistics given to my parents in the 1990s. Increased awareness has led to better access to supportive services, early diagnosis, and more inclusive conversations about the diversity of autistic experiences.

Thanks to my mother’s determination, I had early interventions that helped me develop social and life skills. I attended a therapy school where I learned to navigate conversations, understand nonverbal cues, and interact with the world around me. These opportunities were critical to my development and gave me a foundation that many autistic individuals still lack due to gaps in support services.

The Hidden Burden of Autism

Despite progress, autistic people continue to face challenges beyond their neurological differences. Social stigma, exclusion, and mental health struggles are significant burdens. Autistic individuals are at a much higher risk of experiencing depression, anxiety, and, tragically, suicide. Our research found that autistic people without intellectual disabilities were more than five times as likely to die by suicide compared to the general population.

This reality highlights an urgent need for improved mental health support and a societal shift in how autistic people are perceived and treated. Autistic individuals shouldn’t have to mask their identities or struggle alone to fit into a world that wasn’t designed with them in mind.

A Future of Inclusion and Understanding

It has been 30 years since my diagnosis, and I have proven that doctor wrong. I built a career, established relationships, and created a life that fulfills me. Every autistic person’s path is different, but all deserve the right support and opportunities to thrive.

Through my work, I hope to drive change — ensuring autistic individuals are not just counted in statistics but given the resources they need to live healthy, meaningful lives. A society that embraces neurodiversity is one where autistic people can be themselves without fear of rejection, discrimination, or exclusion.

Attribution: This article is based on the personal experiences and research of Damian Santomauro, PhD, an honorary associate professor at the School of Public Health, University of Queensland, and a lead researcher on the epidemiology and burden of mental disorders at the Queensland Centre for Mental Health Research.