Between Robert F. Kennedy Jr.’s recent false claims that autism “destroys families” and the reports of a since-abandoned plan for a an autism registry tracking diagnosed individuals, getting tested for the condition may feel like an especially fraught decision right now. I absolutely understand these concerns. But forgoing an autism diagnosis poses its own risks, while also denies the person invaluable insight and support — both of which I received when I was diagnosed with autism last year.
I always felt different from my peers in ways that my ADHD and anxiety diagnoses couldn’t seem to fully explain.
Throughout my childhood and young adulthood, I always felt different from my peers in ways that my ADHD and anxiety diagnoses couldn’t seem to fully explain. Although I had a large social network, I struggled to feel at ease in my friends’ presence, craving closeness but lacking the ability to open up emotionally as easily as they did. When I did speak more freely, my words came out too loud and too fast, with a fervency that often blocked out social cues.
At both work and school, I thrived in areas I enjoyed but had immense difficulty grasping and completing tasks outside of my narrow lane of interest. As a teenager, my poor grades in math and science made me feel dumb; in adulthood, I excelled as a writer and editor but felt embarrassingly ignorant of some important life skills. And I never, ever felt at home in my own body. It was all a confusing mess; sensations like cold or hot weather wreaked havoc on my mood, bodily signals for hunger or illness (“interoception“) often went unheard, and physical actions like near-constant knuckle cracking (stimming) and T. rex arms (a self-soothing strategy during periods of sensory overload) made me feel embarrassed in public.
Not wanting to be seen as “weird,” I tried to mimic the behaviors of neurotypical people by masking. Yet while this helped me blend in with my friends and colleagues, it didn’t stop the feelings of shame and inadequacy. Why couldn’t I just be “normal”? Despite my impressive career and loving marriage, I felt certain there was something deeply wrong with who I was.
Getting diagnosed with autism, however, erased that feeling. The process started in late 2023, when my then-therapist gently suggested I get tested, explaining that several of my symptoms aligned with the condition. Although I understood her reasoning, I hesitated. No one I knew was openly autistic, and the autistic adults I’d seen in the media were typically portrayed as awkward, painfully honest loners whose lives didn’t at all look like my own. Because I’m an extrovert with a wide social network, I didn’t believe my issues were enough to warrant an actual diagnosis. Yet when a neuropsychologist and a neurologist both echoed my therapist’s recommendation, I realized stigma and misinformation had clouded my perception of what autism “looks” like. I signed up for an evaluation.
Six months and multiple intensive meetings with specialists later, I was officially diagnosed with autism at age 30. I felt tremendous relief. Finally, there was a reason for why I’d felt so different my entire life, and it wasn’t because I was less-than or not good enough. As the specialists explained, my brain just wasn’t wired the same way as those of my neurotypical peers — a simple fact of science, not a reason for shame.
Crucially, the diagnosis also allowed me to feel more comfortable asking for help.
While the revelation didn’t entirely erase my insecurities or longing for normalcy, it did significantly boost my confidence and lower my anxiety — especially when I revealed my diagnosis to my friends and loved ones, all of whom expressed both support and gratitude that my normally closed-off-self trusted them with the information. My friends gained a clearer understanding of who I am, deepening our bonds, while multiple members of my family with similar behaviors to my own started their own important processes of self-reflection. Connecting with other autistic folks (especially those who also had ADHD) both in person and online has provided new avenues for self-reflection and community, as well.
Crucially, the diagnosis also allowed me to feel more comfortable asking for help. I’m fortunate enough to not require any major accommodations or additional care, unlike many people on the spectrum, and I work from home rather than on an overstimulating office floor. Still, there are times when my brain messes with my abilities, both big and small. Cooking, for instance, has always been a challenge due to my weak senses of smell and taste, my overall disinterest in the activity and my subsequent tendency to make mistakes. Luckily, my husband is a fantastic chef, but my inability to make the occasional meal understandably caused him frustration — which in turn led to guilt and unproductive arguments. After my diagnosis, I felt better equipped to explain exactly why I struggled in the kitchen and we were able to work together on a system that made cooking easier for me and took some of the pressure off him. A year after my diagnosis, I can confidently say that testing for autism was the best thing I could’ve done for my mental and emotional well-being. And while I cannot speak for people who require more care (or who have children who require it), I do know that a diagnosis can provide access to essential, life-changing accommodations and support at school, the workplace and at home. I’m glad that the National Institutes of Health already walked back plans for an autism registry that advocates worried would lead to even more stigma and anxiety, not to mention questions about health privacy. This is not a condition — or a diagnosis — that needs to be hidden, avoided or feared.
Rachel Simon
Rachel Simon is a writer and editor based in Raleigh, North Carolina. She is the author of “Pickleball for All: Everything but the ‘Kitchen’ Sink.” Her work has been published in The New York Times, Glamour, Vulture, Teen Vogue and more. You can find her at @rsimon113. 
