I often think to myself, “I do this so that no other autistic child has to go through what I went through.”
As an autism researcher with a background in social psychology, I’ve developed a pretty good understanding of stigma over time. But it wasn’t any article, study, course, or the years of education that shaped my understanding of stigma – that was developed firsthand.
Ben Pfingston, MSc
I received an autism diagnosis at the age of 11 in the early 2010s when societal messaging about autism was still predominantly negative. My immediate reaction was shame. As a child, I had never heard anything good about autism, and my only perception was seeing how the other autistic children, often with co-occurring intellectual disability, were othered by peers. Fearing ostracization and having no other frame of reference for my diagnosis, I began thinking of autism as a bad thing.
I began believing that I was unworthy. I allowed my friends and peers to treat me as if I was. I adopted negative attitudes about autism as truth because I had yet to encounter alternative points of view. It all resulted in a decade-plus of low self-esteem that I’m still working on to this day.
Stigma is the reason I was drawn to psychology.
To illustrate why, I don’t have to look further than my first independent study. In undergrad, I created a psychometric assessment of personal autism acceptance and attempted to examine its relationship to mental health outcomes. The process opened me to a whole realm of research involving autistic identity and internalized stigma. I learned that a positive sense of autistic identity is important for autistic people’s mental health, self-esteem, and wellbeing. Stigma, specifically internalized stigma, does the opposite.
I had spent so long hating myself. Then, I found catharsis in my research on autistic identity.
I found a sense of power in the data, which reaffirmed the validity of all the pain and strife I had experienced for years. Even more, though, this research made me feel like something could be done about it.
At age 11 and into my teens, I didn’t have the language to understand my experiences. Academics gave me that. I learned about self-stigma – where people from marginalized groups begin to lose self-esteem or self-worth because they sense that others, or society as a whole, don’t fully accept them. It’s a painful cycle that can lead to serious consequences, like declining mental health, deeper feelings of shame, and growing social isolation. As I learned about it, I began seeing myself on the page.
With that knowledge, I came to believe I could make the world a better place for autistic people.
Although my research didn’t remain in the realm of autistic identity, I maintained that philosophy throughout my academic and professional career. I focused on theory of mind and testing the double empathy hypothesis while obtaining my master’s degree. With that research, I hoped I could influence psychologists and autistic people alike to see differences in social cognition as neutral characteristics rather than as deficits or something to place value judgments on. Since leaving graduate school, my research has focused on the more clinical side of autism, where I have worked on projects hoping to make the field of Applied Behavior Analysis more ethical and focused on the wellbeing of autistic youth.
I’m proud of the work I do, and I think it matters. However, sometimes, I can’t help but wonder where my life would have led without the influence of autism stigma. I’ve always loved animals, and I wanted to study them for a significant portion of my childhood. Would I have followed through on that and become a zoologist? I love fiction, and I’ve dreamed of becoming an author for as long as I can remember. Maybe I would have pursued that instead.
Oddly enough, my research is a consequence of stigma as much as it is in opposition to it.
I want to positively influence autistic lives in a world that doesn’t value them. I pursue science because the autism stigma affected me so profoundly that I felt a need to use research to make sense of my own world.
Sometimes, I think about that quiet 11-year-old version of me – confused, ashamed, and scared of what was to become. I wish I could go back and tell him he wasn’t broken. That autism isn’t something to fear or hide or fix. That his way of being in the world is valid, just as much as anyone else’s.
As I write this article, I realize I can’t rewrite my own beginning, but I can help write a better one for someone else.
That’s why I’m here. Not just to do the research but to ultimately be the person I needed back then. I want to help create a world where no autistic child grows up thinking they’re less worthy of love, friendship, or a future. A world where they feel seen and celebrated for who they are.
We’re not there yet, but we’re closer. And that gives me hope.
Ben Pfingston, MSc, is the senior research and data analyst at Catalight, a non-profit that provides access to innovative, individualized care services, clinical research, and advocacy so people with developmental disabilities can choose their path to care. An autistic self-advocate, he focuses on autism research, particularly in social cognition and neurodiversity-affirming practices.
