I Always Knew I Was Different. I Was 49 Before I Learned Why

It began with a quiz. 

A friend from Chicago was visiting me in New York. While she and I were sitting on the couch watching TV, and my husband puttered around in the background, I found myself taking an online autism quiz. I got an outrageously high score, placing me well above the threshold for autism. 

So I did it again. And then again. Each time I got a similar result. I asked my friend and my husband to take it so they could serve as my personal control group. Their scores were well below the score for possible autism. 

I always knew I was different from the people and world around me. For the last 15 years, I suspected that difference had to do with my being on the spectrum.

Why didn’t I march out the door the next day and get an official assessment? Moreover, why did it take me until I was 49 to learn I was autistic? 

In the U.S., it’s incredibly difficult for an adult to get a neuropsychology evaluation. For one thing, many clinicians who can diagnose a person with autism only tend to work with children and adolescents—those evaluations are often covered or reimbursable by health insurance. Sometimes, families can find free evaluations offered through studies at universities. 

The lack of insurance coverage is a real issue because neuropsychiatrists or psychologists who take adult clients aren’t typically covered by insurance. Private testing assessments in the U.S. can cost upwards of $10,000. That price tag is a huge barrier for many who can’t foot those out-of-pocket costs.

And the neuropsych evaluation itself can feel overwhelming. The screening comprises a list of questions that collect information about the way we experience the world, like: Are you hypersensitive to certain sounds or textures? What kinds of relationships do you have? How do you read body language? Do you make eye contact?

Part two is the testing process, which is mostly multiple choice. These questions are designed to assess whether your experience is consistent with the diagnosis of autism as defined in the Diagnostic and Statistical Manual of Mental Disorders (DSM), the bible for psychiatric professionals, pharmaceutical manufacturers, legislative bodies, research scientists, and armchair diagnosticians. If the results of the tests suggest autism, part three has you meeting with your diagnostician. A good provider will ask a lot of questions based on testing outcomes and observe how you answer questions and physically exist in the world. 

The process can stretch on for several months. 

But affordability and accessibility are only one reason why I, and scores of other adult cis women, weren’t able to get a diagnosis. Late-diagnosed autistic women (by women here, I am referring to those assigned female at birth)—especially, women who are diagnosed when they are well into adulthood—are more likely to have a history of previous misdiagnosis of borderline personality disorder, anxiety, and/or depression. Being autistic doesn’t preclude a dual diagnosis—you can be neurodiverse and have an anxiety disorder, for example. But consider what it’s like to have a treatment plan predicated on an incomplete picture. It’s like taking part in a clinical trial only to discover you were given the placebo. 

So why are girls and women so often diagnosed later in life? The answer is complex, incomplete, and even infuriating. 

There are distinct biological differences between children assigned male and female at birth, but not to such a degree that physical and mental health interventions—inclusive of research to inform appropriate changes in diagnostic and treatment modalities—should be so radically different. 

According to the Centers for Disease Control (CDC) a typical 12-month-old should be able to stand while holding onto furniture, sound out the words “mama” and “dada.”(My daughter’s first word was neither, it was “dog.”) By 15 months, a baby may take a few unaided steps; by 2, they may try to use a spoon, point to something they want, say a few more words and scribble. By 4, a child has vaulted to being able to avoid danger, draw people with at least three body parts, and is able to play “pretend” and string together four or more words. There are no gendered expectations up until this point. So is this where the official guidelines in medical equity as such ends for little girls—at age 4? 

Perhaps the answer can be found in the DSM, which is used in North America, Australia, and New Zealand. (The World Health Organization ICD-11 or, International Classification of Diseases, is favored in Europe, U.K. and other nations and covers mental health as part of the scope of overall health classification.) The first DSM was published in 1952; in 1968, the second edition of the DSM included “Hysterical Neurosis.” Hysteria was essentially the medical explanation for “everything that men found mysterious or unmanageable in women,” a conclusion only supported by men’s (historic and continuing) dominance over medicine. Today the word hysteria is still used as shorthand, even a synonym in some places, for “over-emotional” or “deranged.” Hysteria wasn’t removed from the list of mental disorders until 1980.

Which might explain why boys, and in particular white boys, are four times more likely than girls to get a diagnosis in childhood. Until very recently, Black and Hispanic children were grossly overlooked for screening. The same study found that all girls, no matter their race, are still diagnosed less frequently than boys. As recently as 2010, white kids were deemed 30 percent more likely to be diagnosed with autism than Black children and 50 percent more likely than Hispanic children; 2023 studies showed incidence rising in Black and Hispanic communities in the U.S. 

“The research is clear that females can present differently from males and I break it up into three areas,” said Dr. Donna Henderson, the director of Acquired Brain Injury at Gaylord Hospital in Connecticut. Dr. Henderson specializes in autism. “One is social presentation, [females] are more likely to look like they blend in on the playground, whereas the boy is more likely to look like a loner on the playground. [Females] are more likely to have high social motivation than a similar autistic boy.”

Dr. Henderson, a clinical psychologist, performs neuropsych evaluations for individuals with cognitive, academic, social and/or emotional challenges. She explains that some clinicians still regard autism as “categorically bad, so, they’re hesitant to look for it and recognize it and diagnose it and talk about it with their clients or the parents.”  

“Part of the battle here is to help clinicians understand that overwhelmingly, especially people who are average to above average intellectual functioning, late diagnosed Autistics, it is a relief.”

I can confirm this from my own experience, as can some of my women friends who were also diagnosed as adults with autism or other neurodiverse conditions, like ADHD. They too expressed relief when they were diagnosed because it confirmed their intuition that they weren’t crazy to seek more information into why they process, function, and relate the way they do. 

My Australian friend Lani was diagnosed with ADHD when she was 39 years old. She started to crack as society shuttered under the weight of COVID—especially in the eerie early days when places like New York City, where I live, and Melbourne, where she was living, shut down overnight. Unlike me, an autistic who could live in a yurt completely alone forever, the lockdowns had a devastating impact on her. 

“I diagnosed myself via the internet at a particularly low point mid-COVID after years of being told I was anxious and needed to do more therapy and eat better, maybe iron or B12 deficiency, anxiety, insomnia—bloody hell,” she said. After getting an official diagnosis following a neuropsych evaluation, Lani felt she finally could see the world through a new set of eyes. Lani chucked all her stuff into her SUV and headed to Darwin in the Northern Territories.

“A lot of my move was informed by that diagnosis. I wanted to rebuild my life with this new knowledge,” Lani said. “It was liberating.” But the time she spent not knowing this part of herself was “lined with grief and loss” and anger over the what ifs. I experienced this as well. There are times when I become enraged, as I grieve over the time I lost to not knowing. 

Soraya Chemaly, an activist and author of  Rage Becomes Her: The Power of Women’s Anger, said that “there is the lack of attention to the girls. There’s the misdiagnosis, there’s the recategorization of her behavior as self harming or problematic.” Chemaly and I discussed the rage women feel over a lifetime of masking our “quirks,” of missed diagnoses and systemic failure, or rather, a system of care that places little value on the health and wellbeing of girls. 

“Teachers really aren’t trained in recognizing their own bias,” Chemaly explained. “It’s really stunning to me the degree to which kids go into these environments, like schools or medical offices, and the people who are there to help them are not trained in these very, absolutely elemental things.”

  

As early as 1970, Inge Broverman, an expert in psychology and research, found in a landmark study that “psychologists’ profiles of the mentally healthy person (when sex was not specified) corresponded to profiles of the healthy man. Profiles of the healthy or normal woman were different and included qualities—for example, dependency, emotionality, excitability—that were not considered signs of good mental health in general.” For over 50 years, professional brilliant women like Broverman were armed with empirical data demonstrating the differences in the way men and women, and boys and girls were researched for psychological and neuropsychological studies, screaming in the faces of her colleagues in her field—one that was disproportionately white and male. But according to a 2006 study, “Gender role stereotypes used by counselors-in-training appear not to have changed much since the early 1970s.”

How can we do better unless we know better? Or rather, how do we force people to know better? Lord knows we’ve made little progress.

Consider the second category: the restricted and repetitive behaviors regarded as typical of autists. According to Dr. Henderson, research indicates “these are less obvious in girls than in boys.” 

Picture a playground. A little boy stands and flaps his hands or rocks back and forth. A little girl walks along the border of the playground. Which child’s repetitive behavior presents as being symptomatic of autism?

According to Dr. Henderson, both of them. A little boy tend to have behaviors and interests that neurotypical people experience as being atypical. Their interests may center around data. Girls, on the other hand, are more likely to have intense, “typical” interests in “things that don’t make people think about autism,” says Dr. Henderson, like a particular type of animal, or an aspect of pop culture. A girl may read her favorite book repeatedly, as many as 20 or 30 times (in my case, it was Judy Blume’s Are You There God? It’s Me, Margaret). The key is the hyperfocus—and the uniformity, familiarity, comfort, and engagement that flow from it—that we bring to those interests. 

The third category, which is crucial, regards the age at which autistic traits present in girls in contrast to boys. Dr. Henderson says she typically sees girls—especially those with average to above average cognitive intellectual functioning—presenting neurodivergent attributes around 10 or 11 years old. “Right around fifth grade,” she says. “They sort of managed to do okay through [elementary school] socially, emotionally, academically, behaviorally.”

Think about the ways some girls start to come undone right around middle school. We tend to hold it together long enough in a world that wasn’t designed for us. By the time we hit tweendom, some of us can’t manage it any more. As Dr. Henderson told me, that’s when “it hits the fan.” Girls might develop disordered eating, or experience anxiety and/or depression, sometimes even self-harm. Each of these behaviors may offer clues to neurodiversity, though  in young girls, they are often written off as manifestations of puberty and in particular, PMS—the modern-day wandering womb. 

As I reflect on my adolescence, I realize I started to feel like I was losing my grounding in the world around 13, maybe as early as 12. That feeling was cemented when I had my first taste of vodka at age 14. I grew up in a small town, and I was a bored girl crawling out of my skin—alcohol provided a comfort. It’s a familiar story. But what is less familiar is that drinking offered a tangible rationalization for my weird thoughts and takes on life. The comments I’d make while out in a crowd weren’t stupid; I just sounded like a drunk kid. 

So I was “misdiagnosed” as an alcoholic. By “misdiagnosed,” I mean the alcoholism was masking my neurodivergence.  This became especially clear to me when, at 16, I was arrested for driving drunk (there was no accident, so thankfully no one was injured but, I carried deep shame over the incident for a long time), and I was put into a locked rehab facility for minors struggling with substance abuse. The rehab facility was like a prison designed to humiliate us and force us to share our darkest secrets with complete strangers, and worse, with our families. We were quizzed relentlessly about our sexuality (e.g., Did you ever have sex with a girl?). Every “bad” thing was written off as alcoholism. The more I protested and suggested to the counselors that I didn’t understand what they were asking or why, the more I was “in denial.” 

Sometimes I let myself imagine the what ifs: What if those counselors were screening kids for mental health disorders or neurodiversity? Would things have been different? Is there any way to know?

In 2019 the National Autistic Society (U.K.) published a small sample study of women diagnosed as autistic over the age of 40.  Four overall themes emerged from the subject interviews: Autism was a hidden condition (pretending to be normal and fitting in; mental health and mislabeling); the process of acceptance (initial reactions and search for understanding; re-living life through a new lens), the impact of others post-diagnosis (initial reactions; stereotyped assumptions), and a new identity on the autism spectrum (negotiating relationships, connections and community; changing well-being and views of the self; the meaning of diagnosis).

I was finally evaluated and diagnosed in 2019. I read all my results closely. This part jumped out at me:

“Persistent deficits in social communication and social interaction across multiple contexts, as manifested currently or by history. Symptoms must be present in the early developmental period (but may not become fully manifest until social demands exceed limited capacities, or may be masked by learned strategies in later life).”

 

The parenthetical is critical. Dr. Henderson told me that when our limited capacity as autistic little girls is exceeded by society’s expectations of us, “You look back and find that there were challenges going on, but not big enough that people were thinking about autism.” 

I was struck by this part; I’m a writer, so communication is my job. Now things were starting to make sense. I thought about the way I’d unintentionally botched a couple editorial relationships over the past decade. One exasperated editor actually called me out for continually asking clarifying questions—and found working with me exhausting. 

The editor was right. But I only know that in retrospect. Word order, and especially syntax, is critical to my comprehension. The placement of a word, a way a question is framed, can trip me up. After I spend time reading, rereading and deconstructing, I have to clarify—what did you mean when you wrote xyz? Only now can I appreciate the editor’s frustration with me. 

These experiences were humiliating, and cumulative to the point where they eventually began to wear me down. Autistic overload, shutdowns and meltdowns from processing are real experiences. Emotional stressors, and external and environmental forces align to overwhelm me, like a noise at a certain pitch outside my window, or the work it takes to repeatedly review an email or direction. Acts of daily living hit autists differently. There are times I am so overwhelmed by exhaustion that I’m unable to speak. 

So you get a sense of what I mean, here’s an example from elementary school. When I was in first grade, my friend Stacy and I planned a gymnastics routine, on both the high and the low beams, for the school talent show. We selected music and practiced in the lunchroom. We carefully choreographed our routine so that at the midpoint of the song, we would change positions where I would move to the high beam, and Stacy to the low beam.

But then came the day of the talent show. The cue came for us to change beams. I kept looking at Stacy for some sort of prompt but none came. Weren’t we supposed to switch? Was I supposed to do something? I was terrified, convinced I was doing something wrong. I started to sweat. Then the music ended and our performance was over. I was very confused. After all, we had practiced and practiced. We had a routine. We agreed on when to switch and how to do so.

As I reflect on that time,  I realize I never knew what was going on, or how people do things. My friend Stacy was my guide to living in the ordinary world. It came naturally to me to watch others and model myself after their behavior. Normal people seem to intuitively know how to live; autistic people like me live your lives uncomfortably, retro-fit them to ours against our will to keep up appearances. 

I’ve read other autistics referring to this as feeling like an alien. But to me it’s like watching a movie where I have a leading role but I never know my call time, my next scene or line. 

If I am wearing my contact lenses, my myopathy goes undetected. I have multiple sclerosis, but since I do not use mobility aids like a wheelchair, you won’t notice the lesions on my brain and spinal cord. I disclosed my diagnosis here and there, held it like a bit of a treasure for a time as I reconsidered my life through brand-new eyes. 

Not everyone took the news well. My family received the news with a resounding: Yep, that checks out. A couple of old high-school friends didn’t think I was like that or they never thought of me that way. Another friend of over 20 years stunned me by rejecting the diagnosis outright, suggesting that I was making excuses and being lazy—that this was my alcoholic thinking. Time’s smoothed some of the curves off that painful conversation and we’ve settled into a new normal. Being diagnosed with autism was like having a sugar cube placed on the tip of my tongue, melting sweetly into a glucose kick. I was empowered to drop the notion there is only one path to the waterfall. 

Which is part of the reason I am open about my diagnosis—there is no one way to look autistic. There is no one way to be autistic. And, the sooner more people understand that, the better, because stereotyping autistics is as harmful as stereotyping gender expectations. 

I am lucky to have received a diagnosis. What about all the adult women misdiagnosed? What about the little girls overlooked? We lose out on the chance at services that can help bend the supposedly normal way of doing things to fit our needs. Just imagine how much pain and suffering could be avoided if we could kill off the gender bias.