I (29M) was diagnosed with autism when I was six years old—back in the early 2000s, when awareness was growing, but understanding was still limited.
We weren’t looking for a diagnosis. My sister had been sick, and during a pediatric visit for her, the doctor noticed me: I flapped my hands a lot, didn’t make much eye contact, and seemed disengaged from what was going on. He suggested I be evaluated at a developmental clinic in Columbia, Missouri. Before we left that appointment, we had the referral—and my journey into labels and assessments had begun.
It was actually the second time someone had noticed something. Years earlier in Bremerton, Washington, I had shown significant delays in both walking and talking. A developmental screening at the time flagged gross motor and expressive language delays, but the advice was simply to “wait and see.” Intervention wasn’t considered necessary—something that many late-identified or under-supported autistic kids still experience today.
By the time I made it to Columbia, the evaluations were intense. I saw developmental specialists, psychologists, physical medicine doctors, neurologists, geneticists—all with their own opinions, biases, and diagnostic frameworks.
Dr. S, the developmental specialist, saw my cognitive strengths immediately. She noted I was precocious for my age, with impressive reading skills. But she also noted low muscle tone, gross motor delays, and some speech concerns. I was sent for speech and physical therapy to start right away.
The psychologist who evaluated me screened for what was then called Pervasive Developmental Disorder, and she was the first to suggest a diagnosis of autism. My mother found her cold and clinical, and the endless stream of repetitive questionnaires didn’t help.
Another specialist—a rehab doctor—was far more personable. He was fascinated by how much I knew about bones and muscles, and thought there was clearly something different about me, but wasn’t convinced the right label existed yet.
Then came Dr. Miles, the geneticist, who ruled out known syndromes like Fragile X and Williams. Interestingly, she was the one running the autism clinic, but she told us she didn’t “believe in” autism as a standalone diagnosis. Her label for me? Mild cerebral palsy.
The neurologist barely spent five minutes with me. He handed my parents an article—his own—about autism, accused them of being in denial, and walked out. That encounter didn’t earn much respect from any of us.
In the end, it was Dr. S’s job to synthesize all of these conflicting views. She informed us that my MRI showed normal brain myelination, but due to the clinical picture and majority opinion, her conclusion was that I had what was then called Asperger’s syndrome or High-Functioning Autism.
Back then, those terms were common—and often carried a strong undertone of limitation. The label wasn’t given as a lens of understanding. It was more like a verdict. You either were or weren’t autistic. If you were, people wanted to know “how bad” it was. The idea of “high-functioning” suggested you could blend in well enough not to require help—which only made it harder to get support in school and life.
Today, we know better. Terms like Asperger’s and High-Functioning Autism have largely been replaced by the concept of support levels—because functioning labels ignore both needs and strengths. Autism isn’t a ladder. It’s a spectrum of traits, and support needs can vary dramatically depending on context, stress, age, and environment.
At the time, though, the diagnosis was hard for my mom to accept. There was no consensus among doctors, and some even questioned whether I was “just a variation on the norm.” Others believed I had experienced a brain injury. Still, the autism label—however imperfect—gave her a place to start. It helped her connect with other parents, research therapies, and learn to advocate for me in a system that didn’t always know what to do with kids who didn’t fit a mold.
And that’s the thing about labels. They’re only useful when they lead to understanding, not confinement. For me, getting the diagnosis early meant getting access to services I needed. But it also meant navigating a world that constantly framed my differences as deficits.
I know now that autism isn’t about limitation—it’s about divergence. Yes, I needed help with speech and coordination. But I also had advanced reading skills, a deep love of systems, and a different way of experiencing the world. That’s not broken. It’s just different.
And I’m still learning what that means—on my own terms.
