Collective SofteningJenara Nerenberg Seeks to Empower Neurodivergent Women

Jenara Nerenberg, author of Divergent Mind: Thriving in a World that Wasn’t Designed for You (Photo credit: Courtesy of the author)

Several years ago, Jenara Nerenberg, an accomplished journalist and young mother then in her early 30s, was determined to figure out why she was struggling so much. Previously diagnosed with anxiety, she was starting to suspect that wasn’t the whole picture. She had been coming across more and more articles about women who realized later in life that their mental-health challenges had been rooted in unrecognized attention-deficit/hyperactivity disorder (ADHD) or autism. Their experiences sounded so familiar to her that she wondered if these labels could apply to her as well.

As Nerenberg delved into the field of women’s mental and neurological health, she realized how common her story is. Since the majority of research on neurodevelopmental conditions like autism and ADHD has been focused on boys and men, women are often overlooked. Misdiagnosed as anxious, depressed, or simply “sensitive,” many women don’t learn about their neurological differences until they are adults. The result, Nerenberg suggests, is a “lost generation” of women, riddled with shame and low self-esteem, who “have no name for their life experiences and feelings.” With her new book Divergent Mind: Thriving in a World That Wasn’t Designed for You, Nerenberg hopes to empower “women who have a deep sense that they are ‘different’ from the norm but would never in a million years think they ‘have’ ADHD, Asperger’s, and some other neurodivergent trait.”

She weaves together personal stories of women with several neurodivergences—including lesser-known sensory processing differences, such as synesthesia, in which senses overlap, so someone can hear colors, feel sounds, or taste shapes. For her fellow neurodivergent women, she offers concrete tips for better ways to navigate workplaces, relationships, and home environments. Divergent Mind also shares important lessons for all of us about how we understand differences and how to better support the diversity of human minds. Bitch spoke with Nerenberg about how the internet is turning diagnosis on its head, the unique gifts of being neurodivergent, and how we would all benefit from creating a society that truly celebrates the vast range of brain makeups.

Tell us your story and what inspired you to write Divergent Mind.

I was always a very sensitive kid. That’s something that people—my family members, friends, and teachers—always told me. But with that came a very deep, probing, curious nature. I was always asking a lot of questions about human behavior and psychology and inner life from a very young age. I did very well academically—I went to the University of California, Berkeley, and to Harvard—and that kind of structure suited me really well because I was allowed to hyper-focus all the time on my so-called special interests. That was my comfort zone. My happy place is researching, learning, and diving into these rabbit holes all the time.

But as I got older and out of the structure of school and grad school, when I would have to switch from hyper-focusing on an essay to doing the dishes, laundry, or more mundane tasks that rely on more straightforward executive functioning, I really struggled. It was confusing to me, and I had a hard time reconciling this. That’s how Divergent Mind was born. I started looking into it and I very quickly started coming across these articles about women who sounded a lot like me who actually were autistic or have ADHD. But these women were getting missed because they were very bright, had done well in school, and were successful.

You make the case that this is a common story for many women with a range of neurodevelopmental differences. What are the main reasons that so many women aren’t being recognized?

We know that there’s a gender bias issue in the field of medicine. Up until the 1990s, there wasn’t a lot of pressure for women to be included in studies, so a lot of the studies we have on these conditions have been based on men and boys, which has encouraged a lot of stereotypes. The consensus in the research now is that, because women and girls are socialized from a young age to prioritize picking up on social cues, many women blend in or “mask.” They’re essentially camouflaging, but it requires a lot of emotional strain to do so. So many women might identify as introverted or very sensitive or they might experience migraines or sensory overload and just think that’s how life is.

Most therapists and physicians are not up to date, so these underlying differences [go unnoticed] for years and years. What happens for many women is that they land in a therapist’s office complaining of anxiety and depression, and that’s all that’s acknowledged. There is no probing for underlying sensory or neurological differences. So it’s usually later in a woman’s life that they will get to a point of trying to figure out what’s really going on. Many women start to ask questions as they take on more in life—for example, as they graduate from college or move in with a partner or become parents. The level of executive functioning, multitasking, having to switch gears increases, along with sensory input, like sound, noise, touch, etc.

Divergent Mind: Thriving in a World that Wasn’t Designed for You by Jenara Nerenberg (Photo credit: HarperOne)

Your work is firmly rooted in the framework of neurodiversity, which celebrates the diversity of brain makeups instead of pathologizing some as “normal” and others as “abnormal.” As you write, “We’re all different flavors of human.” But you also acknowledge that there are often benefits of getting a “correct” medical label, even if these are imperfect and ever-shifting categories. What are the pros and cons of seeking a diagnosis?

It can be really empowering to find out what’s going on. A formal diagnosis also means being able to request accommodations at work or at school. But that said, what I heard in my research and interviews is that, because so many physicians and therapists aren’t up to date on the research, many women spend years trying to get the so-called correct diagnosis. I heard that over and over, not only from other women in my shoes but also the actual experts. They would say, “Women come into our office and they’ve been told so many different things, so many different diagnoses.” I don’t think you should have to subject yourself to a process that may be traumatic to you in the end.

It’s sort of every woman’s journey if they want to go the formal medical route, and it depends on life circumstances. If someone is happily working from home, their spouse totally gets it, they’re able to cater their daily lives to their sensory needs, then for that person, that’s enough. For other people, it’s absolutely vital that they get that label from a doctor so that they can do school or work differently. In my case, I didn’t seek formal diagnosis for all of these reasons. I’m not in school, I don’t work a full-time job, I spent years in therapy and none of it ever felt like a real fit. For me, information is healing in itself.

While you didn’t get a formal diagnosis, you did do all this research, and you write about how empowering it was to realize that there were labels that fit your own internal experience, and that other people experienced the world in a similar way. For you and many other neurodivergent women, that kind of validation seems to often come from finding each other’s stories online. How is the internet changing things?

The internet has been huge for allowing neurodivergent women to connect and empower one another. It has really changed their lives. The internet allows people who are neurodivergent to articulate in detail what their experiences are and find a welcome community and home with other people who have similar experiences. Without those online spaces, life can be more isolating if you don’t have anyone in your immediate circle who understands what you’re going through.

It’s turning our whole idea of diagnosis on its head in a way. If all of these women are finding one another, if they’re all discovering that they have a shared experience, and they’re discovering that outside of the formal medical or psychiatric diagnostic community, it calls into question what is diagnosis? Who is validating what? One thing that I’ve been thinking about regarding the future of medicine and psychiatry is taking a different approach to diagnosis—having diagnosis more powered by the people, where we first hear from people themselves about their actual experiences and start to group things together [from there]. If all these women are finding they have something in common, could they potentially come up with their own term for it? Diagnosis in the future should be more bottom-up.

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In addition to autism/Asperger’s and ADHD, you explore synesthesia, sensory processing disorder, and high sensitivity in the book. You argue that across these conditions, there’s often a common thread of heightened sensitivity. “Sensitive” is obviously a word that—along with labels like “hysterical” and “emotional”—has often been weaponized against women in particular. How do you want to reframe sensitivity?

There are women out there, as well as family members and colleagues of us neurodivergent women, who have always known or felt that they were different in some way. Usually there’s some kind of intensity of sensitivity there, of being really attuned to one’s surroundings and the people in our lives. One overarching goal of the book is to just remove any kind of pathologization that happens to women who are sensitive in any way.

Another goal was to take the subject of sensitivity more seriously from a scientific standpoint and hope that the fields of medicine, psychology, and sociology would pay more attention. Because the experience and identity of sensitivity is one that has been relegated to the so-called wellness world. We need a breakthrough in medicine and science. I want women to know there’s a scientific basis—that can be so empowering. I would also like to see a culture shift happen where we value sensitivity much more. The quality of sensitivity is incredibly important and it’s something we don’t think about enough.

In addition to sensitivity, you call for the culture to recognize the many gifts of neurodivergent people instead of just focusing on the perceived negatives. What traits have been beneficial in your own life or those of the other women you interviewed?

There are so many gifts of being neurodivergent. It’s something that neurodivergent folks themselves talk about a lot. In our dominant neurotypical culture, they’re not often picked up on or valued as much. Across the board with the neurodivergences I talk about in Divergent Mind, the ability to hyper-focus, the ability to detect nuance, a heightened attunement to moral alignment—having one’s actions reflect one’s values—are all huge gifts.

Because women and girls are socialized from a young age to prioritize picking up on social cues, many women blend in or “mask.”

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The book explores various ways that we could remake our society—from work cultures to built environments—to be more hospitable for the 20 percent of the population who is neurodivergent. It’s interesting to consider how these changes might benefit the rest of us too. Even something as simple as putting more consideration into how sound, light, color, and other sensory inputs affect us.

Yes, we would all benefit from having dimmer lighting and more sensitive color choices—to create a greater sense of calm—not just in yoga studios or museums but as our standard form of design. That’s something that other cultures do a much better job at than the United States. I spent six years as a reporter in Asia. The attunement to feelings and emotions as they relate to design and our environment and our sense of space is much stronger there, and you can feel it. The United States has a lot to learn regarding sensory design. I’m also thinking about what a lot of us are facing right now during this coronavirus pandemic crisis—this sort of forced pause—and how hard it is for people to live a quieter, more still life. But for many neurodivergent folks, it’s not too different from normal daily life, in terms of really having to protect one’s sense of quiet, spaciousness, calm, and stillness.

Our culture is so addicted to speed, noise, and aggression, and it’s something that we don’t even realize because we’re just swimming in it. There’s a level of hostility that comes from the level of speed that we expect in our society, and it’s not natural. There are certainly other ways of living. So when we put a stop to that, as we’re seeing right now, there’s a collective softening that happens. It’s something we can feel in our nervous systems.

This interview has been edited and condensed for clarity and length.

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Maya Dusenbery, a white woman with shoulder-length blond hair, wears a black shirt and smiles at the camera
by Maya Dusenbery
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Maya Dusenbery is a journalist and author of Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick. Follow her on Twitter @mayadusenbery.