“I’ve started to wonder if I’m autistic,” I told my husband. By “started to wonder,” I meant that I’d been doing extensive research for weeks. I’d taken multiple adult autism self-assessments and read first-person accounts of women diagnosed with autism later in life. I really meant that I’d already figured some things out. But as usual, I didn’t tell him about my suspicions until I’d already had the chance to process what I had learned.
“I’ve started to wonder if I’m autistic”
To tell my husband that I now believed I was autistic felt risky. Not because I risked him thinking less of me or even leaving me, but because I risked him replying, “I know.” Up to that point, all of my social experiences—including romantic relationships—had been predicated on hyper-anxious self-monitoring. Am I saying the right thing? Did I do something weird? What’s my script for this scenario? If my husband replied, “I know,” I would have to reckon with failing in my vigilant self-monitoring.
My husband, noting my anxiety, did not say, “I know.” Instead, he asked, “What makes you think that?” The floodgates opened, and the rumination, research, and existential exhaustion poured out of me. When I finished, he did tell me that it was a possibility he had been considering for years. That hurt, but at least I’d gotten to explain myself before he revealed that.
Journey to Autism
So why did I start down the autism path? I remember learning about Asperger’s Syndrome as a teenager in the late 1990s. The descriptions of Asperger’s felt familiar, but they always centered on boys and men. Further, Asperger’s was often deployed as an insult or a cause for pity. It wasn’t until twenty years later that I first noticed a peer, a middle-aged woman I knew through entrepreneurship circles, mention that she was autistic. I searched for information on autism spectrum disorder (now inclusive of Asperger’s Syndrome) for the first time as an adult. I even took a quick self-assessment.
The information I uncovered, as well as the result of the assessment, was unnerving. Yet, the possibility that I might be autistic was so identity-shaking that I couldn’t yet consider it. A couple of years later, I was listening to an interview with an author, Katherine May, whose book, Wintering, I’d just finished. During the interview, she mentioned that she was autistic and shared some of her experiences with the condition. My ears perked up like a radio tower receiving some far-off signal. “Maybe…” I wondered. The following week, I heard another interview with another author, Patricia Lockwood, mention that she was autistic. At that point, I needed to get serious.
Autism for adult women
I started searching for information about autism in adult women. I took every adult autism self-assessment. I ordered Katherine May’s memoir, at that time only published in the UK but now available in the US, The Electricity Of Every Living Thing. I devoured it—marking up the pages with orange sticky flags and furiously underlining every section that put words to things I’d felt my whole life. Reflecting on this now, just over a year later, it strikes me that I was living in an absurd kind of dualism. I both believed that everyone must be working as hard as I was to cope with the world and that I was broken and painfully different. I didn’t have words for my own pain because I’d come to believe that, surely, mine was a ubiquitous experience—not worth describing in detail.
In The Electricity of Every Living Thing, Katherine describes preparing for the same conversation I’d recently had with my husband. The response she’d prefer from her own husband is “surprised acceptance, preferably with a very short space of time between those two sentiments.” What she fears, though, is that her questioning will only be an escalation of the “exhausting, attention-guzzling instability that has come to define” her. When she eventually has the opportunity to talk with him, she finds it difficult to even bring up the topic: “What do you say, anyway? Oh, by the way, I’m autistic. It just doesn’t seem possible, after twenty years together.” She finally lets him know what she’s been thinking about, and his response is careful but unsurprised. She writes, echoing my own deep fear, “This is the worst thing of all, because he knows; he knew all along; he knew before I did.”
The Autism Journey
Recent research into the growing number of people who have received autism diagnoses later in life describes six interwoven stages of the autism journey. Three stages are personal, and three stages are clinical. The first pair of stages, Feeling Different on the personal side and Missed Opportunities on the clinical side, accurately describes this part of the journey for me and, based on her memoir, for May. As I said earlier, I have felt different—broken, awkward, unlikeable—all my life. And while not a clinician, my conversation with my husband represents just one of many missed opportunities for others to help me recognize a critical part of my experience of the world.
Feeling Different and Missed Opportunities
When my husband and I had the conversation, we’d been together for over eight years. He’d suspected that I was autistic for at least six of those years. I don’t blame him for not bringing it up; I’d have reacted badly. But it was a missed opportunity, nonetheless. As a child, I was singled out for being different. I was extremely intelligent and quickly annoyed by my peers. But, having been socialized as a girl, my “acting out” didn’t appear the way one expected autism to present. Instead, my difficulties (social rather than intellectual) in school were funneled into the more socially acceptable bucket of “needs to be challenged.” I had an IEP (individualized education program) because I was “gifted” rather than possessing a developmental disorder. Later, in a last-ditch intervention, I skipped sixth grade. My teachers, mom, and the administration hoped that jumping ahead a year would be a sufficient challenge and ease my social problems. This, it turns out, is a common experience. When interventions are made, it’s often in response to a trait or situation that seems a more likely “culprit” than autism. For me, it was an intervention on behalf of my intelligence. For others, it’s an intervention for anxiety, obsessive-compulsive disorder, ADHD, or borderline personality disorder. And still others’ only intervention is more time in the library away from the constant sensory overload of their peers.
For adults just now recognizing their autism, it can be frustrating to identify those missed opportunities—it was for me. But many of us have become expert maskers and copers. We know how to pass as “normal” even when it’s emotionally and mentally exhausting. And we learn ways to cope with being in a world that demands a social approach to just about every facet of life. That is until we can’t do it anymore. Researchers in New Zealand suggest that some autistic people go unrecognized until “demands on communication, flexibility, and social interaction increase and surpass the individuals’ abilities.” That’s how it was for me. My own ambitions created a scenario in which I could no longer cope. Constant masking made me physically ill.
I continued to experience the same social challenges, despite high performance in high school, college, and my early career. It was frustrating to feel capable of accomplishing great things while lacking the social aptitude to realize them. On the precipice of achievement, I always seemed thwarted by an inability to pick up the phone, ask for a favor, or secure the right partner. In retrospect, I can trace a pattern of 5-year cycles. I’d build toward a goal or accomplishment for four years and crash and burn in the fifth year. Elementary school, high school, college, early career, and first marriage were all bookended by boundless energy and enthusiasm on one side and depression on the other.
Considering Autism and Varied Diagnostic Experiences
And it was toward the nadir of the last 5-year cycle that I entered into the autism journey’s second pair of stages: Considering Autism and Varied Diagnostic Experiences. I’ve already shared how I began to consider autism as the scaffolding I could rebuild the narrative of my life around. So I’ll now share the details of my own diagnostic experience—which I’ve received numerous requests to do over the last year.
One of the first things I learned about autism is that there is no universally accepted clinical assessment for adults. In fact, there are very few psychologists willing to do an adult autism assessment in the US. The CDC website only addresses diagnosis in adulthood with a single question in their FAQ. Clinical autism assessments are primarily conducted for young children through the observational accounts of caregivers and teachers. A clinician uses those accounts to determine whether the child meets the diagnostic criteria for autism spectrum disorder in the DSM-V. But this approach proves tricky—if not futile—for adults.
Adults who have not yet received a diagnosis have typically learned to mask (or camouflage) their autistic traits to appear “normal.” Hence, accounts from friends, coworkers, or family members aren’t likely to be helpful. Further, the lack of an accepted adult assessment tool means clinicians don’t have a straightforward way to take a first-person account. For example, a few months ago, my primary care physician wanted to screen me for bipolar depression. She pulled up a list of screening questions on her computer and ran me through them. She quickly determined that, while I might exhibit some degree of mania at times, I’m not likely bipolar. Not a thorough diagnosis (or lack thereof), of course. But helpful. She had no such tool when I sat down with her to talk about autism.
Assessment, diagnosis, and self-diagnosis
Some providers are willing to do an autism assessment for an adult—but they are few and far between. There are two clinics in the nearest big city to me, Philadelphia. One is at the University of Pennsylvania. Another is a private practice that charges $1500 out-of-pocket for the assessment. I don’t begrudge them the fee; it seems a fair price to me for the amount of time it must take them and the unique skills it requires. But the cost is objectively out of reach for a considerable portion of the population—especially autistic adults who are disproportionately more likely to be underemployed or unemployed. Neither my doctor nor my therapist had any luck finding someone to evaluate me closer to home, let alone one that would accept insurance.
For this reason, self-diagnosis is widely accepted both by the autism community and professionals, including healthcare providers and researchers. That’s the route I decided to take. Because I’m self-employed, I don’t need to justify accommodations for work. And both my primary care physician and therapist were happy to accept the rundown of my experience versus the diagnostic criteria. The University of Washington Autism Center offers a guide to determining whether or not pursuing a formal autism evaluation is right for you, plus a listing of excellent resources for learning more. To reach my own self-diagnosis, I followed what’s become a pretty standard journey for many middle-aged autistic women and non-binary people.
Before I lay out that journey, it’s important to note that “diagnosis” is holdover language from defining autism pathologically. The autistic community today broadly recognizes autism not as a disorder but as a trait. (As more people push back against pathologizing autism, researchers are starting to refer to it as autism spectrum condition (ASC) rather than ASD.) I can be no more diagnosed as autistic than I can be diagnosed as 5’5″ or brown-haired. This stance builds on the social model of disability, which positions disability as a function of social construction or the built environment rather than impairment or a medical problem to be fixed. Some autistic people are intellectually impaired, and many have medical conditions that are present alongside autism (including anxiety disorders and depression). But treating autism as a disorder rather than a neurological variant in communication, processing, and socializing only adds to the stigma that autistic people face.
As I started to consider autism to explain my experiences, my first active step was research. I researched autism spectrum disorder as it is currently understood in general and specifically among women with no intellectual impairment. Then, I took each available autism self-assessment online, including the Autism Spectrum Quotient and the Autism Spectrum Screening Questionnaire.
I also picked up the book I Think I Might Be Autistic by Cynthia Kim. I have to hand it to Cynthia for the direct and search engine-friendly title! Like Katherine and me, Cynthia came to her autism revelation in mid-life. And also like Katherine and me, Cynthia started to consider autism after hearing a story on the radio. She then took a quiz and received scores that put her into the “likely autistic” category. Here’s how she described the experience:
“I sat there at my desk for long minutes. Could it be possible that I’ve been autistic all my life and not known it? That was a stunning realization—one that would require me to reframe everything I thought I knew about myself and everything I’d assumed I knew about autism.”
Questioning assumptions and reframing my world
I’ll come back to questioning assumptions and reframing everything in just a bit. But Cynthia’s acknowledgment that considering autism can be startling is critical. I had to slowly come to terms with the fact that I’d spent 38 years assuming others were processing the outside world in largely the same way when they absolutely were not. Cynthia advises taking as much time as needed at this stage—I certainly needed to. I’d go through waves of thinking that autism explained everything and waves of feeling that I was making stuff up or being a hypochondriac.
Once I’d processed the idea of being autistic on my own, I was finally able to present the idea to my husband. He, as I mentioned, wasn’t really surprised. I asked him to take the online autism assessments with me. I wanted to know for sure that, as Cynthia put it, not “everyone who took the test got a score that said they were likely autistic.” So he completed each test with me—one set of scores for him and then one set where he gave me input on my own scores. In essence, I had him double-check my work. Our results were wildly different. My social, extroverted, in-touch-with-his-feelings husband was definitely not autistic. On the other hand, my scores went up when I factored in his observations and input. I’d been too conservative the first few times around.
Doctors and therapists
That was the cue for me to get my doctor involved. She was already closely monitoring me for a recurrence of depression, so presenting the idea of autism felt reasonably accessible. Still, I was a ball of nerves. I wrote down all of the signs and symptoms of autism that I experience—along with some other notes I wanted to share with her. Luckily, I could type most of it into the in-app appointment scheduler. So I knew she had the information on whether I could reproduce it in speech or not (selective mutism is associated with autism). During the appointment, I pulled out my phone and opened my note. I told her what was going on, the research I’d done, and recited my catalog of signs and symptoms.
I adore my doctor—and I trusted her to tell me if the whole thing seemed overblown. But that’s not what she said. She acknowledged that few resources exist for autistic adults without intellectual impairment and that few clinicians know anything about diagnosing adults. She also told me that a friend’s husband had just received a diagnosis. And she was aware of the growing number of adults identifying as autistic. From that day on, we’ve addressed my mental illness symptoms through the lens of autism.
From there, I sought out a therapist. I’d never done therapy before. Talking about myself, my relationships, and my emotions seemed like a nightmare—not a solution to my problems. But equipped with the language of autism, I felt I could find someone who respected the toll that therapy would take on me—even if it was helping at the same time. The therapist I found helped me walk through several situations that I’d always struggled with: lack of friends, small capacity for social interaction, challenges as a manager, overstimulation, etc. And she gave me quite a gift as we unpacked them. She told me that these experiences weren’t “normal” but that they were okay.
Living as Autistic and Absent Supports
I think I’d been waiting my whole life for someone to tell me that. “No, your experience isn’t normal. And yes, it’s okay.” If I didn’t long for friends, it was okay that I didn’t have them. If I didn’t wish for a greater capacity for socializing, it was okay if I didn’t socialize much. Of course, this didn’t alleviate all of my anxiety around these issues. But it did help me start to rethink my expectations and goals and offer myself some much-needed gentleness. From there, my autism journey entered its final and ongoing two stages: Living as Autistic and Absent Supports.
Sociologist Catherine Tan described processing an autism diagnosis as an opportunity for “biographical illumination.” Unlike other diagnoses that might disrupt one’s expectation of the future or concept of self, an autism diagnosis can enrich a person’s personal history, future, and concept of self. A lifetime of challenges or unusual experiences is suddenly seen in a new light. My new understanding—”No, that’s not normal and, yes, it’s okay”—was precisely that kind of illumination. I was no longer a problem to be fixed, no longer a broken woman, wife, mother, and writer. I wasn’t normal, and that’s okay.
In fact, the paper Tan wrote in which she coined the term biographical illumination is titled in part: “I’m a normal autistic person, not an abnormal neurotypical.” In her analysis of her research, she writes:
“[Autism diagnosis] provided participants an explanation for their atypicality, and concurrently, offered a framework with which to reinterpret and develop their self-concept. Behaviors and challenges of past and present were attributed new meaning and appreciation through the lens of ASD. Accordingly, the moral implications of these behaviors and challenges were re-evaluated.”
Those academic, formal sentences are a balm for my soul. Being autistic isn’t easy in the world we live in. Still, neither is lacking a way to describe the fundamentally different way I experience the world. Autism has given me a better grasp of my identity in its many forms. As both the New Zealand researchers and Tan note in their work, an autism diagnosis also ushered me into the community of autistic people. You can find us on Twitter or Instagram using the #actuallyautistic tag. Countless TikTokers are sharing their experiences, often in hilarious ways. There are online communities, advocacy organizations, and podcasts. There are tons of autistic people doing incredible work to redefine how the world thinks about autism.
Of course, what the world thinks about autism is one of the biggest challenges we face. And that’s why the third pair of stages includes the less-than-happy theme of “absent supports.” By and large, the outside world still views autism as a learning impairment that affects children. Disclosing your identity as an autistic person can lead to comments like, “You don’t look autistic,” or “But you’re high-functioning autistic, right?” Autism is bad, these comments imply: and you’re not bad, so you can’t be that autistic. Friends and family can be dismissive even as they try to be supportive. Clinicians can do the same. Sharing your diagnosis at work might lead to a better work environment. Still, it could just as easily lead to unconscious bias against you.
Compass and Sextant
So while an autism diagnosis can be a liberating, identity-affirming, biographically-illuminating experience, it’s also a minefield for which there is no map. The thing is, I’ve spent my whole life in the minefield. It’s still dangerous—but it’s nothing new. And now, while I might not have a map, I know what to look for to avoid danger most of the time.
Today, my work is better suited to my needs. I have better language to use with friends and family when I don’t have the capacity for socializing. And my relationship with my husband has gotten stronger, too. But I want to be careful to end this without succumbing to some perverse narrative about overcoming my diagnosis. Things have changed. I know myself better now—and that means that I am more likely to honor my natural limitations, alter my goals, and accept my differences. The result might not be a neurotypical picture of success, but I don’t need to achieve that to be satisfied.
Tara McMullin is a writer, podcaster, and producer who explores how to navigate the 21st-century economy with our humanity intact. Her first book, What Works: A Comprehensive Framework To Change The Way We Approach Goal-Setting, will be released in the Fall of 2022. Find out more at https://explorewhatworks.com/.