Now is the time to build human ecosystems that are sustainable for neurodivergents worldwide. Countless individuals, projects, organizations, and movements are working to change the landscape of opportunity for people like us. Women and men are reinventing health care—specifically mental health care—and a range of scientists, researchers, artists, and community innovators are leading the charge. From the origins of gender bias in the evolution of psychiatry to the reframing of diagnoses in the DSM and new awakenings around sensitivity and neurodivergence among women, the tide has shifted such that women are becoming emboldened to take ownership of their minds and lead accordingly. From design and architecture to therapy and publishing, sensitive neurodivergent women are now “coming out” in scores, and we are all better off for it. The narrative is changing, and our job is to keep pushing it further—in media, boardrooms, and classrooms and in our relationships and families.
Bias and Shaping Tech
Our neurodiverse future is not limited to those whose expertise is in mental health or the study of the brain. The fields of artificial intelligence (AI), virtual reality, augmented reality, and sensory design are all ripe for neurodivergent input. Eugenia Kuyda developed Replika, an AI chatbot that responds realistically to those in need of listening, empathizing, reassurance, and connection. She developed it as a way to process her grief after her best friend was killed in a car accident. I witnessed a demo of her product and was shocked to see the depth of conversations the bot was able to engage in. This particular bot was actually programmed using the text messaging and correspondence from the friend who died, and so thousands of people were able to say good-bye and privately interact with the bot whose language mirrored that of their dead friend.
Applicable to all of us who go through periods of loneliness or isolation, I also wonder what new insights and applications may emerge if a bot were to be programmed based on the communication patterns of a sensitive neurodivergent. And what if those patterns were studied? Would we be better understood by the larger public? I know this task will be taken up somewhere in the world any day now, and you better believe I hope it’s a neurodivergent woman at the forefront.
A Forbes article written by entrepreneur Rediet Abebe details a similar concern that AI reflect racially diverse voices. “If teams that set research directions, write algorithms or deploy them are made up of individuals with similar backgrounds and experiences, then we will end up with research that is to the benefit of a similarly narrow and already privileged subset of society,” she writes. “The researcher gets to set the question, decide what datasets to use, how to conduct analyses and how to present results.”
Entrepreneur Mia Dand of Lighthouse3 uses her media platform to elevate women of color in AI ethics, and Sundance Film Institute New Frontier Lab director Kamal Sinclair is a leading force in helping ensure that technology and virtual reality steer all toward an unbiased future. Sinclair is also founder of a transmedia project called Making a New Reality. The idea moving forward is that if AI will be responsible for decision-making in medicine, hiring, and other aspects of our lives, we want the programming to be clear of bias and include all racial and ethnic groups, genders, and neurodivergents.
An article appearing in The Atlantic titled “Beyond the Five Senses” written by Matthew Hutson further expands on additional senses, what happens when they get crossed, and the implications. He writes, “The brain is surprisingly adept at taking advantage of any pertinent information it receives, and can be trained to, for instance, ‘hear’ images or ‘feel’ sound.” I want to see more sensitive neurodivergent women at the forefront of such work. When I spoke with Stanford neuroscientist David Eagleman about people trading umvelts—so that people can experience the sensory challenges of others—he asked me why I thought someone would want to do that. To which I responded that I don’t think many family members, friends, clinicians, therapists, and others would hesitate at the chance to experience and better understand what it’s like to be inside an autistic mind and body, for example. When I think of the potential of technology to help all of us better understand and empathize with the experiences of those who are different, I literally get chills.
Sensory Sensibilities
In the world of architecture, several designers and researchers have written about the application and benefits of autistic sensibilities to all of humanity. Modern architecture in particular, with its minimalist aesthetic, is thought in some cases to have sprung from particular people throughout history who may have been autistic, such as Le Corbusier. “Le Corbusier’s designs are a likely response to his atypical brain,” Ann Sussman and Katie Chen write in a controversial article. The Nebraska-based firm Forte Building Science published a report titled “Why Buildings for Autistic People Are Better for Everyone,” detailing compartmentalization, lighting, moods, comfort factors, and more. Shrub Oak International School in New York, for example, was designed and built entirely according to autistic sensibilities—from the lighting and colors to size and compartmentalization of each room, prioritizing uncluttered open space and avoiding fluorescent lighting. An Architectural Digest article about the school points out that “good autism-friendly design adheres to many of the same principles as good design in general: that design elements should have meaning, that an overly colorless and bland space is just as bad as an overstimulating one, and that it’s always helpful to consider how spaces make people feel.”
And again, all of this innovation points to the urgent necessity of applying neurodivergent thought to diverse fields so that our needs are better understood, accommodated, and—most important—integrated into the fabric of life such that we are not an afterthought. We cannot afford to lose any more sensitive neurodivergent individuals to the perils of shame, doubt, unemployment, low sense of self-worth, or suicide.
New innovations in building and design are popping up in a variety of venues, like the NBA’s “sensory rooms,” which include soothing colors and sounds. A 2018 article about them points out that “these elements help to create a peaceful space away from the noise of the arena. The rooms also feature tools like multisensory play therapy and technology stations. In addition to sensory rooms, the arenas will also have staff members who are trained to recognize sensory needs and provide those accommodations for kids and adults who need them.” Not only does this speak to sensitivity accommodations going mainstream, but I’m so glad they mention adults—that seems like progress.
Forward-thinking sensory designers and sensory audiologists involved with the Natural Sounds and Night Skies Division of the US National Park Service’s wilderness program in Alaska also hold the power and potential to pay attention to neurodivergent sensibilities. A team of researchers, photographers, and pilots have made their way into remote snowy peaks and wild valleys to capture the sounds of birds and rivers and wind—to simply document soundscapes that are absent of human noise. My own sensibilities make me feel immersed, at one with the pulse of the wild, and the sensations reverberate through me. I would love to see my fellow neurodivergents capturing such sounds, feelings, and experiences out in the world and helping the rest of us benefit from them.
Expanding Our Senses
By training, Lore Thaler is a psychologist at Durham University in the UK. Her background is in visual perception and how it guides movement, and during her postdoc she became interested in echolocation. This is a form of navigation now being explored by blind individuals—such as well-known figure Daniel Kish, whose YouTube videos first caught Thaler’s eye—whereby they use the “clicking” of their mouth and tongue to make their way through streets, homes, and other environments. Thaler has been researching echolocation for more than nine years and uses behavioral experiments and neuroimaging to investigate such things as how people echolocate, what acoustic cues they use, and which brain areas are involved. Researchers like her also study how the brain changes with echolocation, as a person learns the new skills—a process called neuroplasticity.
“What do we consider normal?” Thaler asks me. This is exactly why I wanted to speak with her. Although her research has nothing to do with autistic or highly sensitive women or similar traits, she is essentially researching the act of neuroqueering—the altering of human performance in the world. The blind men and women she studies are altering their performance in the world, countering dominant expectations and norms. Clicking is neuroqueering. Or maybe we should call it sensequeering. But going further than that, echolocation shows us what is possible when we alter or vary any way that we respond to sensory stimulation or lack of sensory stimulation. So for the sensitive person, what behaviors can we adopt, and likewise what are changes that the world around us can adopt? Some supermarkets have quiet hours for autistic shoppers, for example. What else is possible? What if deep pressure hugs became the norm? What if all offices had Snoezelen rooms to accommodate meltdowns and sensory overload? What if whispering became the communication style at office meetings?
“Sometimes people have very low expectations of people who are blind,” Thaler tells me, and I ask her whether she feels it’s part of her job to push back on social norms. “Absolutely,” she answers. In addition to her research, she and her colleagues conduct workshops to share their research and help other professionals to teach echolocation. “People are taking in this information, and it actually helps change things.”
I ask Thaler about other progressive sensory research and changing viewpoints around social norms. “I have colleagues who work with people who are hearing voices,” she says. “Traditionally, hearing voices was considered out of the norm, an ‘abnormality,’ and they’ve demonstrated that almost everyone at some point in their lives has this experience and that there’s a spectrum.” Many researchers at Durham University—and in the UK more broadly—seem to be taking expansive stances in their research, conclusions, and recommendations for practice. A large percentage of the research I came across while researching this book was from the UK and other European countries, such as the Netherlands and Italy. “The idea in the UK is to integrate,” Thaler says. “There used to be special schools for the blind or those with learning disabilities, and now the idea is to integrate, rather than separate. Sometimes that can go wrong, but the idea is to try to integrate.”
Sometimes people ask Thaler why she’s interested in this area of research, and she says it’s a powerful paradigm shift to learn about how perception changes. “Not many people are working in this area,” she says. And looking to the future, as more scientists, designers, and inventors cater to sensory differences, she says there is the problematic question of imposing, rather than collaborating. “Whenever you introduce assistive technology, one has to be careful that people actually want to have it. If people find it useful and they want it, I’m all for it.” She points to hearing aids as an example; many people asked for that kind of functionality rather than outsiders imposing the technology.
Regarding innovation in research—especially how animals play a role—Thaler says, “Much of the literature on echolocation comes from bats, and I use it as inspiration.” Although she doesn’t work with bats or other animals, she gets to explore what is similar between species. If bats took thousands of years to evolve their ability for echolocation, I ask her, what is the future for humans? What kind of sensory perception or communication is in our future? “I think it’s a fundamental question,” she says. “As a human you have your sensory surfaces, like skin and pressure and temperature, hearing and sight. And with a new sense, you’d still be limited, but obviously you can get different information. If you use echolocation instead of hearing, you get information that is different. So is this now a new sense?”
What I find so intriguing about Thaler’s research is her eye on the long view of humanity’s evolution. When I think about it, isn’t it possible that sensitive neurodivergent folks in another era could actually be considered advanced for being so affected by sensory stimuli? And what new ways of operating and interacting might sensitive folks come up with were they given full range to explore and use their sensibilities? Could their sensibilities create cities and towns that are inherently soothing? And would living in such ways help solve other societal ills, such as aggression, hostile communication, war, greed? Or might they come up with forms of communication that don’t rely so much on sound, just as blind people are using echolocation instead of sight to navigate space? Replacing sight with echolocation allows people to absorb similar informational input but use a different sense, and this helps them function in the world with less distress. What is the equivalent for those of us overwhelmed by noise, for example?
Bill Davies, the autistic acoustics professor from the UK we met in Chapter 5, wants to get designers, planners, architects, and engineers in a room to better understand how poor acoustics affect and marginalize people and says that increased interest in concepts like soundscape (“which proposes a more nuanced and complex understanding of human response to sound environments”) would be helpful. “The cocreated design process seen in soundscape projects, where users/residents/stakeholders are involved in the design from the earliest stages, would certainly be useful in making more accessible environments,” he says, and adds that getting the initial design right is much less expensive than trying to redo something after it’s been built.
Davies also wants to see more basic research on autistic auditory perception, especially research looking for strengths and differences, as opposed to “deficits.” And like many people, he wants to see more autistic individuals at the helm—planning the research questions, conducting the research, interviewing other autistic people. “I think we might learn a lot if researchers started simply by listening in detail to autistic people’s accounts of their everyday auditory experiences. I find that, with a bit of prompting in the right environment, most people (autistic or not) can give a rich account of their experiences with sound.” Davies is encouraged by the increase in participatory research, for example, and wants to see more of it. “This mirrors the cautious progress toward patient involvement in medical research more broadly,” he says. “There are small pockets of genuine cocreation, where established neurotypical autism researchers have entered into open research collaboration with autistic individuals. Younger autism researchers seem to be more open to this, and the growing band of autistic PhD students are producing exciting work.”
Joel Salinas, the Harvard neurologist who has synesthesia, speaks widely about embracing human difference—digging deeply into how much love we could all be sharing by acknowledging the mind-boggling scientific understandings of how different and unique each individual is. He also mentions to me what it would be like to manifest that love, understanding, and acceptance in a way that leads to concrete change in how the world operates and is structured. “What’s vital is being open to our differences, just as we are open to our similarities,” he says.
Salinas also says that “we need to create environments that are more customizable and less likely to cause stress—environments where people have options.” For example, airports have designated smoking areas; so one might imagine that airports could also set aside places for people who are highly sensitive to environmental stimuli—“environments to find your own personal Zen,” as he puts it. There are also other considerations, such as noise-canceling headphones, visors, particular clothing, and more. Salinas reminds me of the example of left-handed scissors, which have met a wide need and don’t impose a burden on all the right-handed people in the world. Salinas is keen on collaboration and reminding ourselves that we all share this world and we can work out what everybody needs while trying to minimize the burden to others. “If we want to survive together, we have to collaborate a little bit,” he says, referring to managing differences with compassion and empathy.
Occupational therapist Teresa May-Benson—whom we met in Chapter 4—echoes what many in the field of sensitivity have known for decades but what is just on the cusp of being implemented. “We need to educate medical professionals, psychologists, the justice system, and other professionals about the importance of sensory processing and how it impacts behavior,” she says. An episode of the Netflix show Atypical called “In the Dragon’s Lair,” for example, details a scene in which the main autistic character’s sensory overload and corresponding panic look to a police officer like “disobedience.” In the show, the police officer later gets some basic introductory information about autism to prevent future misunderstandings. So much information and education is available that is not getting out to those who need it—those in power and their constituents—and so the acts of reframing such narratives and telling different stories around sensitivity and behavior are not just revolutionary, but also very practical.
It would be wise for parents, teachers, spouses, colleagues, police officers, therapists, doctors, and others to learn this information and make adjustments so that sensitive neurodivergents can thrive. It shouldn’t be about coercing or “retraining” neurodivergent folks to be different from who they are, but rather about all of us—neurodivergent and neurotypical—making room for everyone. As we know by now, the lifelong effects of masking can be dangerously draining and hazardous to emotional, physical, and spiritual health.
Spanning Continents and Diagnoses
The coming changes are not limited to the US or UK, or to one cluster of diagnoses. Mariana Garcia is a therapist in Mexico who originally wrote to me after reading a piece I produced with Elaine Aron. When I announced my first Highly Sensitive & Neurodivergent retreat, she was the first to register, and we stayed in touch and corresponded about her hopes for such work in Mexico.
“I was interested in this field when noticing two things,” Garcia says. “The number of adults who suffer from social anxiety caused by having felt maladjusted throughout their history—I realized that they shared several characteristics such as a taste for reflection and emotional intensity. I found that the neurodiversity and high sensitivity lenses both made sense with what I heard from friends, family, and patients.” Garcia also observed a disconnect in schools: “Many of these children feel overwhelmed and afraid, which becomes a vicious circle that affects their emotional, cognitive, and social development.”
Garcia plans to introduce the neurodiversity framework in Mexico, with a focus on high sensitivity, so that “instead of children growing up feeling inadequate and ashamed for not being ‘normal,’ they can know themselves and we as adults can create the necessary conditions to help them develop their potential.” She wishes society at large could be aware that there are different minds and ways to create contexts in which highly sensitive and neurodivergent individuals can “self-realize.” Ending shame and stigma is a huge focus in Garcia’s current practice. She notes that language in particular is needed in Mexico to help better reflect the internal worlds of sensitive neurodivergent people. “Deficit” is still the common viewpoint.
Like others interviewed throughout this book, Garcia sees the challenge of integrating the neurodiversity framework into the current medical system in Mexico. She says that conventional doctors and therapists should not be quick to judge neurodiversity thinking as dismissive of treatments or attempts to help; someone who is a neurodiversity advocate can also be open to benefitting from certain therapies to improve their lives.
Like many other advocates, Garcia’s focus is on integration. The idea moving forward within psychology and related fields is to continually revise and update notions of human nature and behavior and the role of societal norms. “The world will benefit significantly from talents such as empathy, emotional intensity, certitude, sensitivity, ability to detect details, depth of thought, will to embrace, and many other things that we need in a time where alienation, coldness, superficiality, and emotional hardness are predominating,” Garcia says. She, like many others, does not want her profession or those influenced by her profession to take an extreme or fanatical viewpoint. She wants to open doors and push forward a new way of thinking, while at the same time not denying the various experiences of sensitive neurodivergent people. As we’ve already seen, neurodivergent individuals can still embrace medications and therapies while also taking pride in their identity.
It’s clear we need a massive infusion into all fields of sensitive neurodivergent folks, especially women, who are too often barred from success because of gender bias, mental health stigma, and stereotypes about mental differences. We also need to look more closely at the subject of sensitivity in other categories, such as what is currently called borderline personality disorder, schizophrenia, OCD, and bipolar disorder. Andrew Solomon’s 2012 book Far from the Tree: Parents, Children, and the Search for Identity, for example, illuminates how parents navigate various types of differences in their children. One day I came across a video from Yale University about Solomon and his friend Elyn Saks, both Yale alumni and both of whom had begun sharing openly about their mental health challenges—Solomon’s depression and Saks’s schizophrenia. An Oxford graduate, Saks started experiencing schizophrenic episodes in her twenties and developed a robust career around mental health law, human rights, and policy. She is also a MacArthur Fellow and started the Saks Institute for Mental Health Law, Policy, and Ethics at USC, where she is a professor.
She is now working on supportive decision-making efforts to help involve individual-appointed family members or friends to help intervene during mental health episodes and has been in discussions with Johns Hopkins University, Columbia University, and other stakeholders in the medical system. Saks wants people to be the “architects of their own lives.” She says she is pro-psychiatry and anti-force. When I talked with her, I got a vision of the future for neurodivergent women: open, accepting, present, capable, accomplished, determined, focused.
Saks tells me how hard it has been for graduate students, for example, to disclose their conditions. “In recent years, when we would first meet as a group, only one person would raise their hand [to identify herself or himself as having a mental health challenge], which is stunning. But this year, 75 percent of the group raised their hands to disclose, including a woman who had never said it out loud to anyone aside from her family.” She continues, “I want to see more research into what works, stigma, why people aren’t getting care, and ways to get people to want treatment so they don’t use force.”
Saks understands the neurodiversity framework and other movements such as “Mad Pride,” and she respects such approaches. For her personally, medication and therapy work, and she therefore supports their use for others if they choose, “but it’s an individual choice for everyone,” she says. She views her schizophrenia as a “biochemical illness that needs medication and therapy in order for me to do well.” It’s a pragmatic approach, she says, and if others can do well seeing it differently, that’s fine by her.
Saks is clearly aware of the challenges within psychiatry, and it’s refreshing to hear someone acknowledge various perspectives. She tells me, for example, that she thinks “psychiatrists are doing a great disservice when they tell us to immediately lower our expectations, because with proper resources and support, people can live up to their potential.” Plenty of people living with schizophrenia are doing well, she says, including friends and colleagues of hers who are doctors, lawyers, and academicians. Workplace acceptance has been critical for her, and USC accommodates her well. For example, since she finds teaching stressful, someone teaches her classes while she supervises students one-on-one. She says, “Work is incredibly meaningful in terms of feeling productive and valued and doing something good.”
Saks is involved in a study that is surveying clinicians, patients, family members, and friends “about a new word for schizophrenia because it’s just so misunderstood.” This points to the importance of language and reframing. How do we talk about difference in our families, schools, and workplaces and in government? Saks and I chuckle when we agree that this effort is essentially about branding.
Regarding family and friends, I ask Saks about her personal ecosystem. Who’s necessary in her immediate inner circle? I know from my own experience that a “support system” for us neurodivergents is often different from a typical support system of a casual friend here and there. “I wrote a list of people who have helped me—my psychiatrist, psychoanalyst, cardiologist, cancer doctors, lawyers, housekeeper, friends, and husband.” She tells me, “Society is getting more understanding, and there’s more openness, even in the media. People are telling more positive stories.”
Academic Research: Belly of the Sensory Beast
Change is also coming from within academia. Hailing from Kentucky, B. Blair Braden got her PhD from Arizona State University, Tempe, and now leads the Autism and Brain Aging Laboratory on campus. With a background in behavioral neuroscience, she realized the need for closer study of autistic adults because so few researchers were focusing on individuals older than eighteen, let alone women. When she and her colleagues made their initial grant application to the Department of Defense, they needed their participants to be as similar as possible and focused on men since more men are diagnosed. That didn’t satisfy her, so she got another grant from the Arizona Biomedical Research Commission to do the same study in women; however, she hasn’t gotten enough research subjects to be able to publish the results yet. “But another grant from the National Alliance for Mental Illness will allow us to continue to follow both sexes for the next four years,” she says.
Braden had been recruiting women ages forty to sixty-five for a year when she and I spoke. Across both sexes, the vast majority of her participants were not diagnosed until adulthood. “There’s such a large difference between the sexes in terms of diagnosis rates,” she says. For most participants, autism did not even get added to the DSM until after they had been born and often after they were already out of elementary school.
Braden points out the challenge that masking plays from a research perspective. Let’s say a woman goes to a therapist or researcher and answers questions the way she’s used to doing at work or at a coffee shop—using all the neurotypical nuances, cues, behaviors, gestures, and other ways of interacting that she has learned to use. An observer will find it difficult to recognize that the woman is neurodivergent. This is especially an issue for women who don’t even know they are masking or who have been doing it for so long that they think it’s normal to feel exhausted and anxious after most interactions and conversations. “There’s finally some more research coming out about how women are better at camouflaging, so our tests may not even be sensitive enough for girls or women,” Braden says, meaning that standard diagnostic criteria don’t take into account masking, so women slip under the radar. “We’re still grappling with human cognition and traits. The way things are laid out in the DSM right now may not be the most accurate.”
The goal of Braden’s research is to identify challenges for autistic individuals as they age and what can help them in that aging process. She and her colleagues are now developing interventions to address anxiety, depression, and executive functioning abilities. For the future, she wants her research to inform what the standard of care should be. “We’re particularly concerned about so-called high-functioning adults who may have achieved a certain level of independence, who can work and support themselves, living independently—but if they are affected by aging a little early, then those changes are where we want to come in and consider what we can provide to help keep this person independent.”
As we’ve seen, much more work is being done in Europe, but even there, little work is focusing on women. Reconsidering diagnostic tools is a priority for the international autism research community, says Braden, especially since boys and men are diagnosed far more often. There’s a sense that girls and women are getting missed, so changes in testing are needed.
“I think we give a lot of leeway to kids—that it’s okay for kids to be different,” Braden says. “But once you’re an adult, it’s not okay. I’m really passionate about advocating that it’s okay for people to be different, and it should be celebrated.” In her research, she says, “We realized how much peace it brought these adults to finally find out they’re autistic. Acceptance is a huge piece.”
In sum, Braden says, “Doing this research has totally changed my life. Working with adults on the spectrum has given me such an appreciation for how different we all are. There’s really nothing right or wrong about people; we’re all just people doing our best. I have become an infinitely more accepting person by getting to know people who are very different from me.”
My Parting Thoughts
While I was conducting interviews for this book, many people asked along the way about why we need to categorize or diagnose at all if there are so many similarities among synesthesia, autism, HSP, SPD, and ADHD. As we know by now, categorization and diagnosis are largely functions of the DSM, insurance companies, and doctors and therapists needing to use such labels to find support, treatment, or therapy for individuals. It’s possible that one day all of them will be in the DSM, or it’s equally possible that one day none of them will be in the DSM. And as Joel Salinas reminds me—even for something like synesthesia, outside of research centers—what are available for the public, at best, are self-reporting questionnaires. On the other hand we’ve seen how for some people, getting the “correct” diagnosis and confirmation from a doctor felt important and affirmative. Perhaps it depends on your work and how close to the material you are and what you think is necessary and how you approach experts and “expertise.” Indeed, I’ve heard other stories of women trying to get diagnosed but finding physicians to be clueless, misinformed, and not up to date on the latest studies such that the “expert” in the room is the patient herself.
After all, what does it even mean to ask these questions or to wonder whether you “have” ADHD or you “have” autism? What labels and diagnoses mean today is different from what they will mean five years from now, which will be different twenty years from now—because they are not static; rather, they are floating concepts created by humans that morph and change over time. So who gets to decide? Many people, especially women, are done living according to the categories defined by others. But other people find those categories to be necessary for them to access life-saving treatments, support, and accommodations. How do we straddle such a wide array of needs that fall under one name, label, or categorization?
It’s a confusing, necessary question, and for me the answer—in addition to acceptance—has been to affirm the similarities we all share as sensitive neurodivergent women. Through those similarities, our community—our tribe—is that much bigger. I know allies who are nonspeaking or wheelchair-bound or heavily medicated or in and out of treatment homes. I can stand next to them, march with them, hope that the privilege in my life can be used to support them—and in the same breath I can affirm that we both dislike bright lights and loud sudden noises and that migraines suck.
Once I embraced my own labels, categories, and identifications—I mean truly embraced them and got my family, friends, and colleagues on board—I almost didn’t need them anymore. Once I learned about them, I adjusted, we all adjusted, and now I have a thriving life, meltdowns and all.
The picture that begins to emerge is that humans come in so many different flavors that the categories we’ve defined potentially fall away. This is not denying the importance and utility of such categories, but it questions their primacy, their fixed qualities, and the ways in which we employ them in intimate conversations and wider cultural contexts. It’s important that we see differences, that we don’t deny them; but let it stop there and respond to everyone with kindness and help—pure, unadulterated kindness and help that are not premised on whether someone is “high functioning” or “low functioning.” We know enough about masking and camouflaging to not ignore the reality that someone with a job, salary, and family may be steps away from suicide, just as clearly as we know that someone who does not speak may need assistance at school to communicate. Underneath, we are all more similar than we realize, but we don’t talk about it, so no one knows it.
What ultimately worked for my own growth, acceptance, and healing is fourfold: (1) finding the right career; (2) coming to understand my needs; (3) communicating those needs and having them respected by friends, family, and colleagues; and (4) learning more about my body. I started noticing near the end of the research for this book that I experience the same calm, serene feeling reading new reports and studies about how the brain and body work as I do when I read Sufi poetry or the great philosophers, artists, and intellectuals of our time. Both fill me with a reassuring and settled feeling as I take in the contours of our human design and experience.
The evening when I found the article detailing “interoception-focused therapy,” the name immediately resonated with me. When I saw that the research was being piloted by a female neuroscientist who was trying to understand and decrease anxiety among autistic study participants, I knew I needed to pay attention. She had found a buried paragraph in a report indicating that autistic people had a difficult time detecting their own heartbeats and that may contribute to their anxiety. What she read also indicated that autistic people had more visceral responses to other people in pain than a control group, indicating heightened empathy. Reading just these few sentences about Sarah Garfinkel’s research journey and the clues she was noticing made me feel drawn to her because I knew she was onto something.
The next morning, I did jumping jacks—and was able to feel and count my heartbeats without holding a finger to my pulse. What followed were vivid images about the insides of my body—my cells, organs, muscles, brain stem. I had been craving a more precise and refined mental map of my physical insides. I felt that same deep feeling of being seen. Being recognized. And this is what Garfinkel’s research was indicating was necessary to help reduce autistic anxiety as well.
So get to know your body. Search online for documentaries about how the body works. The information may ground you and help you feel like you haven’t felt before. Or read more about and try some of the other approaches discussed in this book—occupational therapy, Integrated Listening Systems, Snoezelen design. We’re not taught to be attuned to our sensory selves.
Another central healing balm for me has been my work. For a long time I felt cooped up in my brain with ideas and thoughts and sensitive reflections that didn’t have an outlet. Shame started to dominate, especially as I tried to find work that met my inner world. Once I was able to take a stand and share what my inner world was really like, then I felt I could finally exist and place my feet on the ground of the outer world. My brain “turned on” again, and my old knack for mental mapping of people and their interests, stories, and internal lives came back online and I could really get to work. The Neurodiversity Project was born, linking together these interests, speakers, ideas, deeper conversations, and real-world effects with systemic change inside of people and the institutions and organizations where they work, including hospitals, universities, schools, media and tech companies, and therapists’ offices.
It’s hard to make your needs known—especially when you may not yet understand the full spectrum of those needs. It’s challenging work that must be tackled with incremental steps. If you aren’t yet accustomed to asking a friend or partner to pause a conversation because the content is overwhelming you, or explaining to family members why you can’t go grocery shopping at certain hours of the day, start with what feels most doable to you. Perhaps your friend already has some idea of your sensitivities, so she may not be surprised at the request to change up the conversation. Perhaps your partner sees that your grocery shopping is more effective when you go in the morning rather than at night. And don’t worry if anger comes up when first articulating, voicing, and setting boundaries around such needs. You are flexing a new muscle that takes time to strengthen, and the people in your immediate circles can shoulder their own feelings in order to support you with love during a time of growth.
By the end of my research for this book, I felt so seen. And relieved. Being able to learn, digest, process, and ultimately implement and integrate so much information has been a healing process for me. Perhaps the most important thing I learned from researching and writing this book is the value of acceptance. With acceptance comes accommodation, understanding, and a sense of spaciousness from others and society at large that allows neurodivergent individuals to develop and grow in their own way and ultimately identify how to plug their strengths in to neurotypical settings that once felt uncomfortable. Acceptance is at the core of what then enables people who feel marginalized to take risks, expand their sense of belonging, apply themselves in work and relationships, and thrive.
The Path Forward
The way we do medicine and the way we talk about sensitivity and difference as a society need to be reframed. Medical schools, police associations, writers of the DSM, professors and scientific researchers, schools and parents, human resources departments, innovation offices housed within companies—all of them need to be included in a larger conversation. This is not about autism or ADHD or women or men—this is about the fundamental way in which we view, handle, and talk about difference and how we empower or disempower people. There are now hospitals in Canada, for example, that refer patients to art museums as “treatment” for depression and anxiety; there are virtual reality programs that help others experience the sensory world of an autistic child; there are therapists acting as first responders for the homeless rather than the usual police squad.
Within research and the medical system, there are a host of women speaking out and writing on gender bias and how to do medicine better—such as we’ve seen with Maya Dusenbery’s book Doing Harm and Angela Saini’s Inferior. Emergency medicine doctor Shannon McNamara writes and speaks about the intersection of gender bias, queerness, and emotional labor for the media platform FemInEm. Dr. Rana Awdish speaks out on the forgotten importance of emotional connection and resonance in her 2017 medical memoir In Shock: My Journey from Death to Recovery and the Redemptive Power of Hope. Lissa Rankin, whom we met in Chapter 2, continues to write and speak widely on building a medical system that prevents burnout and honors science, ancient wisdom, and areas of practice that science and medicine should be looking at but haven’t yet devoted the time and money to. And the psychiatrist Alexandra Sacks is reframing and depathologizing the conversation about and experience of new motherhood and the emotional roller coaster that ensues. We need more conversations on all of the above.
The field of medicine needs an overhaul. With the number of people experiencing loneliness on the rise, more people become ill and turn to doctors, who are thus put in the position of needing to figure out people’s social lives. But doctors are getting burned out and also need support and others to turn to. And the cycle goes on. Without people being able to open up, share, and connect with others about their internal lives, nothing will change. People fear being exposed, thinking to themselves, “I don’t want people to know my challenging parts,” so they hide and stay separate and isolated. And the isolation turns into physical and psychological symptoms.
It’s not enough to say we need more connection or to point out that loneliness is a problem. We need to know how to connect, which means learning how to have better conversations with others and reveal ourselves to others more fully. Sharing our struggles, especially our mental health ones, is a direct path to connection. Not everyone will know how to respond or what to say, but by opening your door, you help open theirs. It can take time, but soon everyone in your circles of family, friends, and colleagues will feel a little more at ease being themselves. The amount of stress decreases, and we are healthier—and more connected—as a result.
There is so much work to do moving forward. Through this book you’ve been given a glimpse into what some remarkable women and men are doing in their unique niches of work. At their core is an unapologetic commitment to authenticity and “unmasking”; it takes bravery and determination to weather the storms that can ensue. But after the transition, you get to lead your own life. I know from personal experience that so many people wish for this, but they feel trapped and don’t know how to make it happen, or they don’t have the language to imagine a better way. I hope this book has given you that language. It’s time to “come out,” and as you do, what once felt like a hidden alternate sensory enclave blooms to become an enveloping universe that feels like home, that you’ve longed for, and that you embrace with awe.