Chapter 3

Autism, Synesthesia, and ADHD

CC Hart grew up in California’s Central Valley with a mother who noticed her strong body awareness as a child. Hart’s mother, a nurse, encouraged her daughter to go into physical therapy in order to use her hands, and eventually Hart became a massage therapist. A client once mentioned synesthesia to her, and a kind of relief and shock hit her all at once. She finally had a word to describe her experience of feeling what others feel, seeing colors when reading books, and more. She didn’t learn she had synesthesia until she was in her early forties.

Hart was a gifted child who began reading at age two and a half, and she had always seen letters as colors and symbols. A “mirror touch” synesthete as well, she would feel others’ pain, both physical and emotional. “I would see another child’s scrape, and I would feel a shock of electricity go up and down my body. It never occurred to me to say anything because this was just my experience of ‘normal.’ I didn’t know that other people didn’t experience that.”

Hart’s sensory sensitivities are varied, and she wonders whether she might be classified on the autism spectrum as well. She was recently diagnosed with ADHD, something she had suspected and that was suggested to her after finally finding a psychiatrist who took the necessary time to analyze and interpret the nuances of her “symptom presentation” beyond stereotypical ideas. For many people, autism, ADHD, and synesthesia occur together. She describes her world as “too much or too loud.”

Now as an adult, Hart walks into a room and is a magnet for others, with her long red hair and flowing colorful outfits. When I met her one evening and she hugged me close, I felt that same shock of electricity she describes. Her warmth is palpable. But when Hart was an infant, her mother took her to a pediatrician because she thought something was wrong when she didn’t engage with others like her sister did. These are themes that many women shared with me over the course of my writing this book—being bright, having multiple sensitivities or diagnoses, and having parents who fear that something is very wrong. For those of us like Hart, it takes time for our nervous systems to become calibrated to the “outside” world and the staccato rhythms that feel like assaults. After a series of trials and errors, figuring out what type of work matches our skills and needs or what kind of people are compatible with us, we finally come out of our shells.

Autism

A person with so-called classic autism is what many doctors and laypeople describe as “socially awkward,” “in their own world,” and lacking empathy and “normal” or “appropriate” social interaction. This pathologizing language describes a person in terms of individual norms and expectations; we don’t often stop to think about what is happening in society on a larger scale that would generate such a description or make such a person sound so “bad.” Only when we step back and examine the behaviors from a nonstigmatized perspective can we realize that people described this way aren’t bad; they are merely different when measured with an established (and some might say arbitrary) barometer. In fact, many people in the autistic community like to flip the script and point out how awful neurotypical culture and expectations are: think small talk, social niceties, herd mentality, compliance, and other unpleasant or taxing behaviors that are deemed “normal.”

While figures like the professor and author Temple Grandin have brought attention to the gifts of autism, our culture as a whole remains steeped in images and definitions that see this kind of neurological makeup as a defect. More and more we are appreciating the fact that the range of autistic experience is vast, necessitating the use of the label spectrum; and autistic advocates are now speaking out and challenging pervasive false notions.

This is most apparent on Twitter, where autistic culture thrives and autistic individuals all over the world share personal stories and insights on their own terms and in their own voices. “Nothing about us without us” is a popular slogan. Instead of being studied from the outside, autistic people are giving voice to their experiences on their own terms. Twitter is a perfect vehicle for this, where no stone is left unturned and no question is too cumbersome: Why is the rate of suicidal ideation higher among the autistic population? Why do autistic individuals prefer that the month of April be called “autism acceptance” month rather than “autism awareness” month? The idea that autistic people lack empathy, for example, is often countered on Twitter, with people sharing how in fact it’s their overabundance of empathy that causes them to shut down emotionally and retreat. There’s no lack of empathy, but too much of it. How’s that for reframing?

What I heard in researching, conducting interviews, and reporting on the autistic experience is that sensitivity features prominently in autism and is both a strength and a challenge. In the case of autistic women, many of whom have been sensitive their entire lives but not known they were on the autism spectrum, the question of utilizing and managing sensitivity is tricky because many have been told or taught that something is wrong with them. As a result, many have experienced shame, depression, and severe anxiety.

Author Samantha Craft, who is autistic and is often a go-to resource for women wondering whether they are also autistic, has compiled an unofficial list that she says is “a springboard for discussion and more awareness into the female experience of autism.” This can be helpful because the authors of the DSM are often changing its scope, and many doctors and therapists are at a loss regarding how to diagnose. Here are some abbreviated items from her list regarding autism/Asperger’s:

Seeing things at multiple levels, including her own thinking processes	Escaping in thought or action to survive overwhelming emotions and senses
Continually analyzing existence, the meaning of life, and everything	Escaping through fixations, obsessions, and overinterest in subjects; through imagination, fantasy, daydreaming, and mental processing; through the rhythm of words
Often getting lost in her own thoughts and “checking out” (blank stare)	Imitating people on television or in movies
Experiencing trouble with lying	Escaping through relationships (imagined or real)
Finding it difficult to understand some human characteristics, such as manipulation, disloyalty, vindictive behavior, and retaliation	Escaping into other rooms at parties
Experiencing feelings of confusion and being overwhelmed	Being unable to relax or rest without having many thoughts
Experiencing feelings of being misplaced and/or from another planet	Feeling extreme relief when she doesn’t have to go anywhere, talk to anyone, answer calls, or leave the house but at the same time harboring guilt for “hibernating” and not doing “what everyone else is doing”
Feeling isolated	Perceiving visitors at the home as a threat (this can even be a familiar family member); knowing logically that visitors are not a threat but still feeling anxious
Obsessing about the potentiality of a relationship with someone, particularly a love interest or new friendship	Dreading upcoming events and appointments
Being confused by the rules of accurate eye contact, tone of voice, proximity of body, body stance, and posture in conversation	Feeling anxiety knowing she has to leave the house and feeling overwhelmed and exhausted by the steps involved
Becoming exhausted by conversations	Preparing mentally for outings, excursions, meetings, and appointments, often days before a scheduled event
Continually questioning the actions and behaviors of herself and others	Continually questioning next steps and movements
Training herself in social interactions through reading and studying other people	Feeling as if she is on stage being watched and/or having a sense of always needing to act out the “right” steps
Visualizing and practicing how to act around others	Having huge compassion for suffering (sometimes for inanimate objects)
Practicing/rehearsing what to say to another person before entering a room	Being sensitive to substances (environmental toxins, foods, alcohol, medication, hormones, etc.)
Having difficulty filtering out background noise when talking to others	Questioning her purpose in life and how to be a “better” person
Having a continuous inner dialogue about what to say and how to act in social situations	Seeking to understand personal abilities, skills, and gifts
Feeling great peace of mind when she knows she can stay at home all day	Feeling trapped between wanting to be herself and wanting to fit in
Requiring a large amount of downtime or alone time	Imitating others without realizing it
Feeling guilty after spending a lot of time on a special interest	Rejecting and/or questioning social norms
Disliking being in a crowded mall, gym, or theater	Having a hard time feeling good about herself
Being sensitive to sounds, textures, temperature, and/or smells when trying to sleep	Not understanding jokes
Adjusting bedclothes, bedding, and/or environment in an attempt to find comfort	Remembering details about someone’s life or details generally
Longing to be seen, heard, and understood	Relieving anxiety by writing or being creative
Questioning whether she is “normal”	Having certain “feelings” or emotions toward words and/or numbers
At times adapting her view of life or actions on the basis of others’ opinions or words	Experiencing simple tasks as causing extreme hardship
Viewing many things as an extension of herself	Feeling emotionally challenged by new places
Disliking words and events that hurt animals and people	Feeling a sense of panic when faced with anything that requires a reasonable number of steps or amount of dexterity or know-how
Expecting that by acting a certain way certain results can be achieved, but realizing in dealing with emotions, that those results don’t always manifest	Feeling anxious at the thought of repairing, fixing, or locating something
Believing that everything has a purpose	Avoiding mundane tasks
Having a difficult time making or keeping friends	Feeling overwhelmed by something as “simple” as a trip to the grocery store
Having a tendency to overshare	Having a hard time finding certain objects in the house but clearly knowing where other objects are; feeling anxious when unable to locate something or when thinking about locating something (object permanence challenges)
Lacking impulse control when speaking (at a younger age)	Perceiving situations and conversations as black or white
Monopolizing conversations and speaking exclusively about herself	Overlooking or misunderstanding the middle spectrum of outcomes, events, and emotions (having an all-or-nothing mentality)
Having difficulty recognizing how extreme emotions (outrage, deep love) will affect her and being challenged to transfer what she has learned about emotions from one situation to the next	Overreacting: a small fight might signal the end of a relationship or collapse of the world; a small compliment might lead to a state of bliss
Always trying to communicate “correctly”	Wanting to know word origins and/or origins of historical facts, root causes, and foundations
Having trouble identifying feelings unless they are extreme	Noticing patterns frequently
More easily identifying personal feelings of anger, outrage, deep love, fear, giddiness, and anticipation than emotions of joy, satisfaction, calmness, and serenity	Remembering things visually
Seeming to others to be narcissistic and controlling

Craft also lists frequent co-occurring attributes, including obsessive compulsive disorder (OCD), sensory issues (sight, sound, texture, smells, taste—synesthesia), generalized anxiety, feelings of polar extremes (depressed/overjoyed; inconsiderate/oversensitive), and chronic fatigue and/or immune challenges. And as we have seen, an autistic person might be (mis)diagnosed as having a “mental illness.”

Autism is thus a living, breathing group of attributes that gets missed as a diagnosis because it is broad, overlaps with many other traits, and is steeped in media-driven stereotypes. Many women are thus self-diagnosed. For those who get a clinician’s affirmation, many different diagnoses may have been considered, with autism as a kind of final question on the table. Therefore, many women don’t have an exhaustive understanding of themselves until later in their lives.

Reaching for the Stars

“I’ve never been officially diagnosed. It’s on my list of things to do,” Sara Seager tells me. A planetary scientist and astrophysicist at the Massachusetts Institute of Technology, Seager searches for exoplanets, but has trouble with grocery shopping. “Someone wrote an article about me strongly suggesting I had Asperger’s, and then one of my mentors read it. His wife was one of the first doctors of autism, and he called me and told me his wife said that I was definitely on the autism spectrum. At first I said, ‘No, I don’t have that.’ And then I thought about it, and everything came together.

“When I was a child, other kids always thought I was odd. One of my friends who’s definitely Asperger’s never interacted with children when he was little. I wasn’t as extreme as him, but before I found out I had Asperger’s, I noticed he always made me laugh. One time we were meeting for pizza and I was five minutes late, and he’s like, ‘What’s the protocol if someone’s late?’ He honestly didn’t know, and he had to have it all written down, like how many minutes to wait before it’s rude to message them. So I watched him navigate the world, and it was really ironic that later I had it.”

Seager has received a MacArthur Fellowship, a rare and prestigious prize awarded to a select few. She has been featured in books, talks, and academic panels, and at the time of our interview, she had just signed a seven-figure book deal. She tells me that many kids had crushes on her at school. That made her feel “normal,” but other than that, looking back, she felt very different—until she arrived at MIT. Now she’s in her element and describes a sense of belonging and fitting in.

“When I look back on my whole life, things just fit together. My sister told me my life was really rigid and scheduled,” she laughs. “If the schedule deviates from anything, I get really uncomfortable and my day will almost fall apart.” She shares with me the confusion and frustration that ensue when a schedule changes, someone doesn’t stick to a plan, or other unforeseen alterations occur. I resonate with her experience as I listen.

Seager’s days are structured and busy. She’s often at work by 6:30 or 7:00 a.m. and gets a whole day’s work done on her own research in two hours. Then she spends the rest of the day teaching classes or attending meetings. When she gets home in the afternoon, she walks the dog and makes calls to the West Coast. By 5:00 p.m. she drives her kids to sports activities.

But it took her several years to streamline grocery shopping, something she tells me she thinks she finally has a handle on. She used to go to the store and ask, “Where are the apples?” Although she thought she was using her normal voice, others would think she was being rude and abrupt and yelling at them. She says that people—her “interface with the world,” as she puts it—provide the most challenge. “I have to slow down and make small talk first,” she says. One time her neighbor even took time to explain to her how people warm up, slowly get to the point, ask questions, and then gently move away. At the nearby dog park, Seager can get annoyed when a fellow dog lover takes ages to get to the point of asking for a signature on a petition. She wants interactions to be clear, direct, and efficient.

She shares the delight and curiosity that has come with figuring out things like the furnace in her house and “detecting” when it’s about to break down by “listening to the sound.” But she has a persistent sense that things have been made more complex than necessary. I have found myself wondering the same, unsure why simple daily tasks are not more clearly taught or explained.

Of her particular sensitivities, Seager says, “I don’t like being hugged or touched, even now. It feels like more of an awkwardness. I never cast it in terms of a sensitivity, but maybe it is.” When she was little, her father—who was a doctor—thought she was “mentally retarded,” in her father’s words, because she often stared off into space. “I also cried for the first two years of life,” she tells me. “I didn’t get a lot more information than that, and he’s not alive now so I can’t probe him, but he thought something was wrong with me.”

Seager says that “at MIT it seems like most people are somewhere on the spectrum. I feel at home there. And many people [at MIT] say it’s the first time they have had friends.” People are okay with her straightforward style, which makes her life easier, as it takes away the barrier of having to cushion language with small talk. She can let her guard down at MIT, and many on her team are very “Asperger’s-ey,” as she puts it. People there tolerate her communication style well, but Seager finds dealing with the outside, neurotypical world to be exhausting. It takes a huge amount of her emotional energy to think through everything before she speaks or acts. “It’s just tiring,” she says.

Seager relays to me her realizations about pacing in conversation, “shooting the breeze,” and other social formalities. Sometimes she waits patiently while others take time to understand something, but to her it feels like “watching moss grow.” She’ll often call her husband at work to see how he’s doing, and then when she feels she’s done she’ll suddenly say, “Okay bye,” and hang up. “My husband used to call me a narcissist,” she tells me, “but when this whole Asperger’s thing came about, he stopped. It helped us tremendously because I think it helps him realize that when I’m being dismissive of something, it’s not because I’m rude. It’s just how I am. And it helps me realize that he’s very sensitive and I’ve got to be aware of it. Now that it’s more of an open thing between us, it helps a great deal.”

Ultimately, Seager says, “Being on the spectrum contributed to my success.” She attributes much of that success to her not being bothered by the same superficial concerns as her peers when she was growing up. The life of her mind shielded her from the necessities of small talk and inefficient social norms that require many adolescents to sink time and energy into “fitting in.” Now as an adult she has two children who deeply understand her and a loving relationship with her husband. And she loves her work. “I always loved the stars and astronomy and thinking about what’s out there,” Seager says. “I was good at math and physics and was able to put it all together. I was lucky I was good at something I loved.”

Synesthesia

Synesthesia is a well-documented phenomenon of the brain whereby an individual’s senses get “crossed” such that hearing sounds may elicit a visual field of colors, for example. A particular strand of synesthesia is called “mirror touch synesthesia,” that is, a person can feel what another person feels by simply observing what is happening to the other person.

The NPR podcast Invisibilia documented one woman’s experience with synesthesia and described in detail how she had to keep herself isolated because of the severity of her trait. One time while in a grocery store she fell helplessly to the ground when a little boy fell nearby. Other times she becomes overwhelmed by the emotions of her children or others in close proximity, which some therapists refer to as “mirror emotion synesthesia.”

Synesthesia is the topic of many studies. A 2011 study in the Journal of Neuroscience reported that synesthetes were superior in facial expression recognition but not facial identity recognition. The researchers concluded that mirror touch synesthetes may possess enhanced emotion processing and call to attention the somatosensory system in the process of emotional empathy and perception of expression. A 2007 study in Nature Neuroscience found that participants reported a higher percentage of mirror touch errors as compared with control subjects—that is, synesthetes more often mistook perceived touch for actual touch because they feel the same to them. And a 2013 study in the journal Emotion reported that mirror touch synesthetes had a heightened and accurate recognition response to the emotion of fear, but not to those of happiness or disgust. Like Elaine Aron’s characterization of HSP as an evolutionary survival strategy, the researchers concluded that relying on somatosensory mechanisms would be evolutionarily adaptive—explaining the existence and persistence of mirror touch synesthesia in humans.

CC Hart, the synesthete we met earlier, told me that when she was a kid, she could “tell you what page a certain scene was on because all the pages had corresponding colors.” This was an experience she had known her whole life but lacked a name for. Finding out there was a name for her experience and that others in the world shared it gave her a feeling of community and connection. “So much opened up, and it was a huge sense of relief in recognizing that there were communities of people like me. The sense that others have had the same experiences helped me recalibrate what it means to be a neurodivergent individual.” She is now a board member of the International Association of Synaesthetes, Artists, and Scientists (IASAS).

Digging Deeper, Parsing Out

Many people relate to the experience of sensing others, emotions, and the environment around them—in fact many of us simply take this to be a natural part of who we are. Now studies on mirror neurons, empathy, and neurodivergence support the experience and give it a much-needed lens inside of academia. This sensitivity is also shown in animal species such as monkeys, birds, rodents, and fish; studies describe select members of a species displaying increased “responsivity,” “flexibility,” and “plasticity,” indicating an evolutionary advantage. In more recent years this field has come to be known as “sensory biology”—with dedicated researchers at Johns Hopkins, Duke, the University of California campuses, and elsewhere—and has maintained a focus on animals. But what does this all mean in human terms? That’s where mirror neurons come in.

In his book Mirroring People: The New Science of How We Connect with Others, Marco Iacoboni writes: “The human brain contains about one hundred billion neurons, each of which can make contact with thousands, even tens of thousands, of other neurons. These contacts, or synapses, are the means by which neurons communicate with one another, and their number is staggering.” Iacoboni was a student of Giacomo Rizzolatti, the Ukrainian scientist who first “discovered” mirror neurons while studying monkeys in his laboratory in Italy. Rizzolatti’s lab focused on the neocortex, specifically a region of the neocortex labeled F5 that is responsible for planning, selecting, and executing actions. The story goes that as a scientist reached for something, a burst of activity was recorded coming from an observing monkey’s brain, even though the monkey didn’t move or copy the scientist’s gesture. This happened several times. “Neither they nor any neuroscientists in the world could have imagined that motor cells could fire merely at the perception of somebody else’s actions, with no motor action involved at all,” Iacoboni writes. “Cells in the monkey brain that send signals to other cells that are anatomically connected to muscles have no business firing when the monkey is completely still, hands in lap, watching somebody else’s actions. And yet they did.”

At the time, neuroscientists believed that specific functions controlled by the brain were limited to specific “boxes.” In line with earlier mechanistic thinking that has shaped the study of the brain, such a belief makes sense. As Iacoboni explains it, neuroscientists have tended to think of perception, cognition, and action as distinct spheres. But to begin to entertain the possibility that there is crossover and more complexity is exciting. Further experiments found that close proximity also determined a mirror response and that simulations would not elicit it—the objects or people executing an action had to be real, not robots or graphics, in order to elicit a mirror response. The tactile receptive field and the visual receptive field were found to be related in the brain. A new idea was thus born within neuroscience whereby some researchers concluded that the brain was attempting to create a map that took into consideration the visual and tactile space surrounding the body and that accounted for potential actions within that space.

This discovery and the evolution of our understanding of mirror neurons is important to situating a neurodiversity framework within modern life. The research scientists in Italy were intrigued and perplexed and looked to earlier philosophical explanations of human behavior, action, empathy, and learning. Rizzolatti and his colleagues departed from much of the history of the science of the brain, venturing out and becoming known for their range of insight and inquiry. This way of thinking could prime the psychological sciences for how to think about neurodiversity, given its natural focus on variety, as opposed to a mechanistic or reductionist, disease-based model of mental differences.

The Synthesizing Synesthete

Harvard neurologist Joel Salinas has synesthesia and documents the overlap with other traits such as autism in his 2017 book Mirror Touch: A Memoir of Synesthesia and the Secret Life of the Brain. Salinas confirmed to me the unique interplay between genes, biology, and experience that gives rise to such overlapping sensitive traits or diagnoses. “People on the autism spectrum are much more likely to have synesthesia compared to the general population,” he says. Studies confirm this as well.

“Could you call somebody with synesthesia autistic?” he asks rhetorically as we speak. “That ends up being more a matter of semantics and technicalities, because these are all concepts. What we’re trying to describe when we talk about synesthesia is a sensory experience. So someone who has synesthesia may also fall in the definition of the autism spectrum, but someone with synesthesia may not necessarily meet the checkboxes or criteria to be defined as someone on the autism spectrum.”

I find Salinas’s technical prowess reassuring while talking to him, as his nuanced understandings and insights surpass those of most psychologists and psychiatrists. A “behavioral neurologist,” he studies the dynamic relationship between social relationships, genes, and neurological traits. “Many of the genes that have been identified to be linked to synesthesia have overlap in the genes that have been identified as strong candidates or likely involved in the autism spectrum,” he tells me. Differences in brain connectivity are found in both autistic people and synesthetes, explaining why both groups experience similar sensations. An additional finding is that the way autistic people describe their experiences of sensation and sensory differences overlaps with the descriptions of people who have synesthesia.

For instance, CC Hart says, “I wear headphones on the train, the same ones that DJs wear to block out sound. I have trouble filtering out ambient sound from the sound I might be focusing on, like the people sitting next to me. Sounds also have colors or feelings in my body, and I feel like I’m getting battered when I’m in a really sensory-rich environment.” This way of describing her sensory environment is almost identical to the way many autistic women describe their lives. “Learning about synesthesia was a gateway to recognizing the issues I’ve always had with processing sensory feedback, especially tactile and auditory,” Hart says. “I’ve got a low level of olfactory tolerance when things smell really strong. My tolerance for crowds is low, my tolerance for aromas is low, and my tolerance for sound is low and I take it in bits and pieces.”

Salinas’s perspective as a medical professional who is also a synesthete provides fascinating insight as well. I reached out to him after reading his book, and he flew to San Francisco from Boston to do an event with The Neurodiversity Project, the community forum I host for authors exploring innovative research and solutions in medicine and society. An extremely articulate and eloquent individual, he quickly earned my respect for both his warm manner and sharp scientific insight.

Growing up in Miami, with a short stint in Nicaragua, Salinas experienced sensations intensely and never had a name for the colors and empathy that filled his daily life. While in India on a medical school trip, someone mentioned synesthesia, and finally everything clicked for him. In his book he details what it’s like to perform surgery or give a hug or treat a psychiatric patient as a synesthete—suffice to say he feels everything intensely so he has had to both embrace and manage the experience. Feeling profound empathy and feeling overwhelmed are both part of the picture for him, and he has expertly learned to set appropriate boundaries for himself and others. In my opinion, part of what makes him such a popular neurologist at Harvard and Massachusetts General Hospital is that he embodies the neurodiversity framework as he relates to his fellow neurodivergent patients. He understands and embraces difference, feels no need to pathologize, and seeks to “treat” people only when they express distress and a desire for treatment.

“Is synesthesia a gift, a curse, or none of the above?” Salinas asked at a recent conference, and he tells me that the same could be asked not only of the autism spectrum, synesthesia, or other traits, but of brains in general. “Is having your brain a gift, a curse, or none of the above?” he reiterates. Context is key, he says, because in one situation, one set of traits can be highly beneficial, and in another situation, those same traits can be “crippling.”

As an example, he tells me about a woman who has obsessive compulsive disorder as defined in the DSM. She is highly obsessive and can barely function in situations where she has to make quick decisions. But she is a genius in the operating room, where she is a scrub tech—so she is the one organizing the instruments for surgeons at exactly the right time. She is very meticulous, partly because of how her brain is wired and programmed. So what would be an impediment in some situations is an advantage in the operating room. “So it really comes down to context,” he says, “which is why the DSM and those definitions need to be contextualized. The function of the DSM is to give a name when someone is not doing well, meaning they’re having trouble functioning with their occupation or socially—basically they’re in distress in one way or another. And it’s the patient relating that they are in distress, not a family member who is in distress over the other person’s behavior.”

The clinician’s responsibility is to dig down deep and determine whether the environment is the problem or whether something is happening with the brain and body. “That’s the goal of medicine—or should be,” Salinas says. “My sense is not to use the DSM as a means to label people, because that can lead to all sorts of alienation and loneliness, and that in turn can create problems; but to use the DSM as a way of helping the person in distress. Some people benefit from having a label, but not everybody does.” He tells me about one patient who had a number of cognitive symptoms of depression, and when he explained that to her, she began to cry because she was so grateful to have a name for her experience. “It’s in those situations that the DSM can be useful, but when the DSM is used to stigmatize or [its categories are] imposed upon somebody, I think that’s when it can be problematic.”

Salinas thinks the DSM is a broad and primitive tool used to understand the brain and believes a much better understanding of the brain will come from focusing on the interplay between biology and the environment. “I think psychiatry is moving there,” he says, “which means it’s also moving closer toward neurology.” People are moving away from checkboxes of observations and instead focusing on patterns of physiology. For example, the brain tends to react this way or that way in such-and-such a context. Or your brain appears X or Y way, or your brain connectivity looks like A or B, or you have this collection of genes. “I think that will lead to better insights about what the underlying cause is, and the more specific you get about what the underlying cause is, then the more specific you can get about treatments for the people who are in distress.”

Since Salinas is a behavioral neurologist, one of his goals is to figure out what his clients are communicating. “We’re all living in these bodies that we’re born with, outside of our own choice, and our bodies come with all sorts of weird things, and our brain is locked in this dark tomb and there’s no way to really know what another person is experiencing.” Language is our primary communication tool, which of course has limitations. “So trying to tease apart in as granular a way as possible what someone is trying to communicate—I find that extremely helpful.”

The Third Factor: ADHD

The co-occurrence of autism and synesthesia is well documented, but the sensitivities found within autism and ADHD are even more well known. For autistics, sensory sensitivities often dictate the development of particular behaviors. Stimming refers to movements—such as flapping the hands or tapping the fingers—that help relieve anxiety that comes with overstimulation. It can also take the form of mental stimming, such as repeating numbers, words, or letters (also referred to as echolalia). When I was a child, for instance, I had a mental count of the electrical poles on my street, and every time we drove by, I had to mark in my mind the midpoint between each pole.

With ADHD the sensitivity shows up differently. High stimulation is both exciting and confusing for people with ADHD, because they can get overwhelmed and overstimulated easily without realizing they are approaching that point. Along with sensory regulation, emotional regulation becomes difficult, which accounts for some of the sensory overload, or “meltdowns,” common in ADHD, as with the autist. There is a shared experience across both neurodivergences of gradual sensory overwhelm—and then having to recover.

A 2006 report from the National Autistic Society indicates that autistics have a lower threshold for audio, visual, oral, and touch stimuli. Such “abnormalities” were found to decrease over time, except for touch sensitivity. A 2014 study in the American Journal of Psychiatry documents the emotional “dysregulation” that occurs for 30–70 percent of people with ADHD, making emotional sensitivity a higher level of concern than generally considered for this population. Sensitivity is core to both of these neurodivergences and gets masked by the use of words such as dysregulation, abnormality, and dysfunction.

ADHD is commonly thought of as something that makes little boys fidgety, distracted, and unable to stay still. Doctors and researchers often give little attention to what is happening under the surface and in the broader environment. And, of course, there is very little focus on girls and women. As in the case of autism, our outdated stereotypes are based largely on an initial excitement and eagerness in the medical community to capture and frame a so-called new set of behaviors that started surfacing. And because so many girls and women with ADHD are “smart” and have done well in school, they’ve flown under the diagnostic and research radars. Women with ADHD who have struggled for years with logistical challenges often develop a nagging sense of not being good enough, never being able to “hit the mark” at work or home, and they struggle with anxiety and depression. But many women with ADHD also use their gift for hyperfocusing to excel beyond their peers—in writing, research, art, and other areas. Remember, despite what the words “attention deficit” imply, ADHD is not a deficit of attention, but rather a challenge of regulating it at will or on demand. People with ADHD often have too much attention—just not at the “socially acceptable” times or situations found in our highly regimented and structured societies.

Sensitivity among people with ADHD is fascinating, important, and markedly different from that seen in HSP or autism. I think of sensitivity within ADHD as having two parts. First, there is a deep curiosity about and sensitivity to new information and stimuli, an experience not too different from that of a bee driven to discover all available pollen. Second, there is the sensitivity that results from being ADHD, especially if it’s been unknown, where people become sensitive to criticism and being judged. It’s hard to do well at some times and then at other times feel like a total failure—for being late, missing an appointment, missing a deadline, getting dates or times confused, or other results of having a challenged prefrontal cortex and struggling executive functioning. There is also a sensitivity to ourselves—our own emotions, regulating those emotions, and not being so hard on ourselves. It’s no surprise, then, that it is not uncommon for adults with ADHD to have meltdowns or “blowups”—like an adult tantrum. The sensory overload gets to be too much when someone is trying to hold together multiple threads of information or expectations in a neurotypical context.

I have struggled since I was a child with these meltdowns, but had no clue what they were. I would feel very sensitive to being judged or criticized and then find myself experiencing sudden bouts of anger or frustration. Much of the experience is a kind of accumulated trauma—after repeated attempts to do things the “right way” and not being able to finally “get” it, the person with ADHD eventually boils over with frustration. And other people are surprised or confused because everything that’s happening is invisible and under the surface. It’s a struggle that many people deal with for years before they discover what’s really going on.

Higher Education

“I probably lasted about three months into my postdoc before I couldn’t focus anymore and it felt like I wasn’t present throughout the week,” my friend Stephanie tells me one day about her undiagnosed ADHD. “I would go home mentally and emotionally exhausted and spent most of my days off just spaced out. Then on the weekends I would have two days to myself, but I was just exhausted and things became even more difficult. Time was flying, and I was accomplishing absolutely nothing.

“In grad school there was structure and variation in the tasks—and it wasn’t so much sitting at one table working on one computer doing the same thing over and over. I was dreading the end of school for that reason.” Stephanie was anxious about her lack of self-direction and was so hyperfocused on her education that she never stopped to think of alternative directions for her life after graduation. “Why am I always so unproductive?” she asked her therapist one day. “Why am I always spacing out?” Her therapist suggested that perhaps she had ADHD, and she thought, “No way.”

Stephanie was my classmate in graduate school at the Harvard School of Public Health before either of us learned about our neurological traits. We always got along well. She grew up in Oakland, California, the first daughter of Vietnamese refugees. She was an anxious child, always observing and noticing details that her peers and family members missed. She also came out as lesbian and generally describes herself as the black sheep of the family. What I notice while talking to her is the way she describes her feelings of sensory overwhelm. She had done well in school, and was now teaching at USC, but something wasn’t right. It seemed like what the modern work structures and styles were requiring of her were not working for her body and mind.

Stephanie identifies as having ADHD and describes several sensory processing differences that dominate her daily life. “Jarring noise I find very upsetting,” she tells me. “I go on information overload faster than sensory overload, which is why shopping malls are incredibly difficult for me.” She finds choosing outfits exhausting, as well as shopping at grocery stores. “The shiny lights and the boxes and prices—I’ll forget that I have a list and just go look at stuff and absorb information, like the patterns and colors and the way they’re arranged. It’s not upsetting—when I’m bombarded with sensory information, it’s pleasurable and I enjoy it, but when I have to actually process all of it, I feel exhausted.”

Stephanie also tells me she feels like she “dissociates” when she’s alone in a room, as she’ll forget about tasks that need to get done in the real world. “Living alone is difficult because I’ll wake up in the morning and there’s no human presence reminding me that the things in my head are not actually happening and I need to be here in this present physical world doing things. There are days when it will take me hours to get up and brush my teeth. I’ll just be sitting in bed doing the laundry and running errands in my head, but not actually doing them.”

Stephanie holds degrees from USC, Harvard, and Johns Hopkins. She is highly accomplished and driven, not someone who “failed to launch.” And what she describes as withdrawing is actually her sensitivity taking over—an experience often reported by women with ADHD. Many women I interviewed with ADHD feel incredibly fragile and “overly sensitive” to the highly regimented structures of their lives and report a sense of shame at not being able to comply with expectations. They can do quantum physics, write PhD dissertations, or travel the world as stand-up comedians, but when it comes to what is expected as “the basic duties” of being a “functional adult,” they are left feeling deeply incapable.

Maria Yagoda was a student at Yale when she was diagnosed with ADHD. A talented writer and journalist, she later “came out” about her diagnosis and became a champion for other women with ADHD. “I will definitely get sucked into something and have to devote all my time and energy into that,” she told me in an interview once. She also describes sensations of sensory burnout, anxiety, and sometimes overall depression. She can handle multiple and rapidly changing deadlines, but keeping track of her keys and wallet day in and day out is much harder. “Sometimes on days that are the craziest—different news stories breaking, too many meetings, family drama—I’m able to focus more intensely than I could on a normal day. I feel like I kick into this special productivity gear.”

Wake-Up Call

A contributing factor to all of this dissonance is that girls and women are neglected to a degree in the scientific research on ADHD and other neurodivergences such that teachers, doctors, and others are not able to accurately recognize these behaviors or thought patterns as relevant to ADHD or Asperger’s. Since the majority of what we know about such neurodivergences is based on research on males, it’s likely that thousands of girls and women are walking around unnecessarily miserable because of lack of awareness and misdiagnosis.

At the same time, if such neurodivergence is simply part of the human experience, as the neurodiversity framework would tell us, what do we do with all these labels? We need to recognize them as useful starting places to help people articulate and sort out and define experiences; but stereotypes get in the way and are far from representing reality, especially for women, and they describe only a fraction of the neurodivergent population.

With new research and anecdotal evidence comes the recognition that divergent neurologies are very much alive in girls and women and that such individuals are essentially hiding in plain sight. For example, a young girl or woman with ADHD is much more likely to have the inattentive type of ADHD and be prone to daydreaming, but also hyperfocusing—that is, have the ability to zero in very intently on one thing at a time, to the point of mastery. With her ability to focus on her books, assignments, and tests, she will often excel in school, so parents, teachers, or doctors would never consider ADHD. But once that young woman enters college or comes up against a significant transition in her life whereby routine structures are taken away—and she needs to depend on her executive functioning to navigate the logistical details of daily life that she never had to think about before—her experience changes dramatically.

Likewise with Asperger’s and the autism spectrum: research and numerous interviews show that because of the way girls and women are socialized, they often mirror and mimic the behaviors of other females around them and learn how to “be” and interact with others. Internally, however, they put an extraordinary amount of energy into how to act—what to say, when to say what, how to move their bodies in a particular social situation. At some point in their lives, often when adult responsibilities become too much, the amount of energy required to continue pretending, or “passing,” simply becomes too much. Depression, burnout, fatigue, and anxiety frequently surface. Women are often unaware that such pretending and mimicking are even happening. But as they need more mental energy in more and more areas of life, they begin to notice that it’s harder and harder to keep up in former social situations or relationships. It becomes clear that there has been a long-standing disconnect between their actual inclinations and the ways in which they have acted out of social obligation.

Isabel was drawn to The Neurodiversity Project gatherings and told me that she was popular and at the top of her class until she went to college, and everything changed. A gifted child, she grew up in an open-minded family of artists and outside-the-box thinkers and never felt different or disabled. But in college she found herself overwhelmed with the fast pace and competitive nature of her peers and ultimately moved back home to finish college elsewhere.

Fast-forward to when she later married and had children and found she could barely function. She became sick and overwhelmed. Then, her son was diagnosed with Asperger’s and ADHD, and she finally recognized her own neurodivergences. Masking had taken a huge toll on her emotional and physical life, but once the mask came off, her well-being improved dramatically.

“I think if I had read more about Asperger’s up front, I would have been more accepting about the whole thing. It really does fit us to a T,” Isabel tells me, referring to herself and her son. “One of the things that stumped me was that I’m not a computer nerd or a techie person or into coding or any of the stereotypical stuff that you hear about.” Like many other women in her shoes, Isabel found solace in online communities—where neurodivergent women take to Twitter and blogs to share openly about their experiences. Indeed, such sharing has been a (literal) lifesaver for many. “Talking about this with other women and having that camaraderie has been really healing and invigorating, and I now regularly feel joy and awe. I have a sense of pride and honor.”

Isabel has found a calling in creating art that reflects her reality. “It finally became clear to me that I was going to do art and that I was going to use that art to be a bridge between neurotypicals and neurodivergents. I think our natural role as those in the minority, at the fringe, is to be the mirror to society. We’re big thinkers and creators, and we serve through our innovations and works of aesthetic beauty. That’s what I feel my work is really about—maintaining that bridge and that sense of openness and understanding, which helps foster well-being.” Isabel now holds art discussions in her home, loves photography, and is able to tend to her neurodivergent family’s needs.

Denise is a medical student who studied English literature at Columbia University; she considers herself HSP, was diagnosed autistic in her late twenties, and her mother and sister are both ADHD. “My whole family is sensitive—in different ways,” Denise tells me. “My sensitivity wasn’t noticed because we all were [sensitive] in different ways. If I had been a boy, I definitely would have been diagnosed as something, probably Asperger’s.” Denise says she was a “toe-walker” as a little girl and was often in her own world, constantly reading and climbing trees. She says that in middle school her main friend banned her from taking books to school, which helped her to be more social. “I knew that I thought differently from other people. I’ve always spent a lot of time thinking about how other people think.” Denise also found herself over the years in very long-term relationships, which she describes as similar to having a “seeing-eye human.” Having a companion who wishes to go out into the world more often than she does encourages Denise to interact and socialize. “But if I do too much in a day, like go to a party, the next day the only thing I can do is sleep until that veil goes away.”

The “veil” is how Denise names what protected her throughout childhood and early adulthood. Like Stephanie, Denise describes an experience of dissociation that dominated much of her early life, until one day it began to dissipate. “I started feeling more clear about things at one point after college. I was standing on a corner in Louisville, Kentucky, one day, and the fog lifted. ‘This must be what other people feel on a regular basis,’ I thought to myself. I realized that I’d lived partially dissociated for twenty-five years and then slowly started to come back into my body.” Now Denise feels more empowered with choice about her sensitivities. On a practical level, as a medical student, she has had to ask for accommodations at school because she cannot spend hours on end in large lecture halls—something that wasn’t an issue during her undergraduate years because the classes were much smaller.

Denise also hasn’t suffered from some of the more debilitating aspects of going “undiagnosed”—she never had a crisis of depression or identity. Rather, she says, “My crisis point was the physical symptoms of joint pain, migraines, and brain fog. My ability to process was just done. There was a lot of confusion.” The combination of new research about neurodivergent women, finding a like-minded community, and being in a mental health training program has helped Denise feel more clear in general. “I’ve spent the past two years in counseling—not because I’m depressed or anxious—but to understand things, to have choice,” she says. “I think being an HSP is another way to look at the world. I was so relieved to finally have words for this and to know that this is a shared experience.”

Denise has many gifts. Obviously “book smart,” she has also homed in on how her unique internal wiring makes her an exceptional listener and health-care provider. “I experience somatic empathy a lot,” she says. But she still struggles to explain to other people some of her experiences, given that scientific research is just beginning to take women like her into consideration. What are we to do when our very real experiences in the world—especially as women—have no corresponding representation in the scientific, medical, health, and neuroscience research? With brain scans of HSPs, the rise of research on mirror neurons, and prominent individuals like Sara Seager and Joel Salinas stepping forward—and, most important, with the long-awaited incorporation of female interest, inquiry, and representation in scientific research—we are at a point now where our collective experiences are bulldozing through a patriarchal, neurotypical agenda. Smart, talented, capable people are “coming out” and radically revising narratives about divergent identity.