Learning to Live: A Journey of Self-Discovery and Autism

Six years ago, my husband, Sam, asked my father if he could marry me. They sat in my dad’s Volvo in my parents’ driveway in San Antonio, Texas. It was raining. With Sam, my father would offer wisdom that was far more demonstrative and thoughtful than any insights he had ever shared with me. And even as I understood that transitive properties were at work and that my father loved Sam for loving me, I felt there was a closeness between them that I would never know.

The Diagnosis

On May 24, 2023, at age 43, I was diagnosed with autism spectrum disorder. I sought assessment on the heels of an exasperated parting shot from Sam as he left the apartment mid-fight. Before he turned away, he said to me in a half-joke, “Jesus, I swear you’re autistic or have a personality disorder,” then shut the door.

I didn’t feel peevish triumph at how obviously mean he was being, which was very unlike me. What I remember most is the sinking sensation that accompanies unwelcome recognition. So in the weeks after the fight, I took to TikTok. Then Reddit. I binged on whatever the algorithm increasingly understood would privilege a confirmation bias to keep me engaged: autism memes (“POV: You’re Autistic and You’re Multitasking …” Or “Autism in Adult Women May Look Like …”).

Within the month, I’d made an appointment at the Sachs Center, a “full-service boutique psychotherapy practice.” I had found it deep within the bowels of Autism Reddit and was duly unsure of its reputation, but after 40-plus years, I was impatient. Ready to throw money at the problem. I elected to be tested for both ASD and ADHD despite having already been diagnosed with ADHD three years earlier by my psychiatrist (who, for the record, helped eliminate Sam’s other accusation of my having a personality disorder).

Assessment was $695 for one and $795 for both, and I never could resist a bundle. The ASD evaluation, conducted over Zoom, consisted of four psychometric tests — questionnaires that screened for both autistic traits and the propensity to hide them. That was followed by a 75-minute interview, a sprawling conversation covering everything from my childhood to my lifelong fixation on snacks. The whole thing took less than three hours. Later that day, a form letter arrived. A PDF. Made out to someone named Amanda.

I felt bamboozled. And wholly deserving. This is what you get when you buy shit off the internet, I thought. But the psychologist swiftly corrected the typo and assured me that I’d scored well within the range of a person with ASD across all the tests. My assessment placed me as ASD level one, or requiring the least amount of support, according to the DSM-5. (This is the designation that many but not all of those formerly diagnosed with Asperger’s now fall under.) I’d always been highly sensitive to certain sounds, lighting, smells, and textures, and it was concluded in my interview that these sensory issues were attributable to ASD as well.

The Challenges of Identity

I told Sam, but in the following weeks, I debated whether to tell anyone else. I’d long suspected something was “off,” but now that I had the paperwork to prove it, I didn’t think anyone would believe me. It would be hard to reconcile the optics of my life with Dustin Hoffman in Rain Man, Extraordinary Attorney Woo, prospective couples in Love on the Spectrum, nonverbal children, or most of the movie characters played by the marvelous Barry Keoghan. I didn’t have severe intellectual disabilities or a photographic memory. Never mind making eye contact, I’d had a previous career that entailed interviewing celebrities on-camera, sometimes for live events. I didn’t know how I would defend myself in cross-examination if anyone pointed to the jobs I’ve had: a culture correspondent for TV and magazines, then a New York Times best-selling author, a career that required extensive touring and public speaking.

And even if I was officially autistic, was I autistic enough for it to matter? And what did that mean? I’d grappled with impostor syndrome at various points in my life, and the nightmare scenario I kept returning to was that I might tell a colleague or acquaintance that I was autistic only to have them reveal that they had a severely autistic child. I found this prospect mortifying beyond redemption. I was convinced they would rightfully feel that my comparative claim to autism was so marginal as to be deceptive. Did I just, in some grotesque display of privilege, pay hundreds of dollars for a doctor’s note that would excuse me from the social mores by which humans in a functioning society were expected to abide? I refused to be an apex asshole of weaponized therapyspeak, a Coastal Elite victim of the self-care-industrial complex. And yet … And yet.

The Realities of Autism

Perhaps you’ve sensed autism Zeitgeisting, the way pants are getting bigger or how raw milk appears to be a thing. As of 2020, according to the CDC, one out of 36 8-year-old children has autism — a significant jump from one in 44 in 2018.

The obvious question is whether there are more people with ASD or if we’re counting differently. Honestly, clinicians don’t know, but it’s clear that better detection is a factor. It used to be that children were diagnosed when they were around 8 years old; now, a child can be reliably diagnosed at 2 or 3. Traditionally, autism was also the domain of white kids, specifically boys, who were thought to be more visibly disruptive and easier to diagnose. But the CDC’s recent count indicates a rise in Black, Hispanic, and Asian or Pacific Islander children with ASD too.

Because autism has historically been categorized as a developmental disorder, with research and awareness focused on children, there isn’t much data around autistic adults. In 2017, the CDC published a study citing nearly 5.4 million adults in the U.S. with ASD, but this number is an estimate. The lack of data and the dearth of experienced clinicians, as well as protracted lead times for insurance approvals for those unable to pay out of pocket, may explain why self-diagnosis seems to be exploding online. In a 2023 study, researchers at Drexel University reported that on TikTok, “videos associated with the ‘