After My Autism Diagnosis at 47, I Revisited My Life With New Eyes

This story is Part One of a three-part series about people who got diagnosed with autism late in life, a group experts have dubbed "The Lost Generation." Read Part Two here.

“Test results indicate that you meet the criteria for a diagnosis of Autism Spectrum Disorder.” 

It was a few weeks after my 47th birthday. I had been working with my therapist after persistent struggles in some of my relationships. She recommended I consider being assessed for autism. Following her recommendation, I endured months of tests, questionnaires, and interviews that led to this determination. The diagnosis shook my world. 

My initial reaction was one of relief. Suddenly, decades of struggles and awkward moments made sense. I wasn’t stupid or incapable, as I’d often told myself. I was just autistic. I felt validated and seen in a way I’d never been previously. I thought, “Now I can explain myself to others and they will understand me.” I was unprepared for the rollercoaster of emotions that would follow, including frustration with a world that doesn’t understand autism.

While reviewing my life through this new lens, I realized I had made all of my most important life decisions without knowing myself or how my brain functioned. I’d been following a script that others wrote. Decisions about my education, career, relationships, and parenting were based on what everyone else was doing. My inability to make decisions effectively meant that life often made them for me. I chose a major that wasn’t compatible with my needs. I spent 12 years in a relationship that wasn’t working. I struggled with the social aspect of raising kids; having two sons involved in sports meant anxiety-ridden fundraisers, concession booth shifts, and banquets.

I always had trouble adapting to adult life. I struggled to pay my bills on time even though I had the money. I had days when I couldn’t bring myself to go to work because I was too overwhelmed to talk to people. I was told, “You just have anxiety like most other women.” I was given prescriptions for sleep aids and anti-anxiety meds. Therapists suggested typical techniques. None of them helped, because autistic brains require different methods.

Had I known I was autistic, I would have made different choices in every area of life. It feels like the “what if”s are eating me alive.

Had I known I was autistic, I would have made different choices in every area of life. That realization was—and still is—hard to grapple with. Some days, it feels like the “what if”s are eating me alive. Yet, I have a beautiful life. I am blessed with a wonderfully supportive husband. I have three amazing kids. I have friends I adore, a family I can rely on, and a job that uses my strengths and interests. I feel immense guilt over wishing I had made different choices because if I had, I wouldn’t have this life. Harboring regret feels like I am erasing my loved ones and the many treasured experiences I’ve had.

My family and friends are accepting and supportive and the online community of autistic women has been a life raft. But for the most part, other people don’t know what autism looks like. It seems many people don’t even realize that autistic kids become autistic adults. We have devised a system of support for autistic kids and their parents, but support for autistic adults is almost non-existent. Even simple accommodation requests are often denied by employers, resulting in 85% of autistic people being unemployed. Autistic women have been missed for generations by those tasked with understanding autism—and they still are even now.

Most people see autistic adults as Dustin Hoffman’s “Rainman” or Sheldon Cooper from “The Big Bang Theory”—or else they’ll say,  “Everyone’s on the spectrum!” Please don’t say that to an autistic person; it invalidates our experience. You are only “on the spectrum” if you have autism. Autistic traits like sensory sensitivities can be experienced by non-autistic people, but it doesn’t make everyone autistic. It isn’t only what we experience, but the intensity, frequency, and severity of the impact that these traits have on our lives.

Recently, I was reminded just how detrimental that impact can be. I attended a publishing workshop where one of the speakers said that to be considered for a book proposal, you must submit a video. The point of the video is to show that you are engaging and can market yourself. This expectation is based on common social norms, but they are norms with which autistic people often struggle. 

Displaying proper expressions, understanding what the audience is thinking, making eye contact, and smiling at the right time—I struggle with all of these things. My voice is too loud and my facial expressions don’t always match my words. I can make eye contact while listening, but when speaking, I have to look away. I must consciously focus on making eye contact, but I also have to focus on speaking so that the right words come out with the right tone. I write better than I speak, so it’s ironic that to publish a book, I have to prove my worth by speaking. Effectiveness in communication shouldn’t be limited to verbal expression.

The same challenges extend to job interviews, work meetings, and presentations. In these situations, autistic people – women in particular, due to gender expectations – often “mask,” meaning that internally, we are expending tremendous energy attempting to appear normal. Masking for me entails forcing eye contact, consciously smiling at the right time, and suppressing fidgeting. I need an entire day to prepare for and recover from a 30-minute meeting, during which I'm faking who I am for the benefit of others. Masking for an extended period has a detrimental impact on my mental health. Autistic people frequently suffer from depression and anxiety, and their suicide rate is much higher than average. The world needs to learn what autistic presence looks like and to value us as we are. It is truly a matter of life and death. 

Despite these hurdles, the past year has also brought joy and a newfound sense of freedom. I can’t go back in time, but I can move forward with determination. The way I experience the world is unique and my perspective just might change yours if you can learn to see beyond my loud voice and lack of eye contact. 

This is true for the entire autistic community. If an autistic person shares themselves with you, it is a gift. Please listen. No matter how bizarre their experience might seem, they are trusting you with the most vulnerable part of themselves. Our experience has taught us that the world isn’t safe for autistic people. As a society, we can change that by listening and believing.