Essay

If you are a woman with the organizational struggles of ADHD, you may relate to the shame that women in our culture feel when they are unable to conform to the gender expectations you have internalized and idealized. In our new book, A Radical Guide for Women with ADHD, my co-author—Michelle Frank, Psy.D.—and I created the term “Brain Shame,” to describe the way women with brain-based differences feel when compared to the idealization of neurotypicality. Just as women feel deep wounds when they feel they don’t live up to the standard of culturally approved bodies, so, too, do women with ADHD feel hurt when they can’t conform to expectations about how to be “good enough” in other ways that highlight their brain-based challenges.

In my thirty years of counseling women with these challenges, I have focused on this pattern and have consistently found—just as with body shame—women with organizational, memory, and attention difficulties idealize other women’s ability to multitask, organize, activate, and filter out distractions. Instead of fantasizing about fitting into a size three, these women dream about fitting into a different, deeply internalized gender expectation by which they measure and define their self- worth.

These women yearn to live clutter-free, rid of the omnipresent piles surrounding and haunting them. These chronically disorganized women yearn for the day when they can calmly respond to an unexpected person at their door or an innocent request from a friend for an unscheduled ride in their car without the panic that their disarray will be revealed.

All the mundane tasks of daily living—shopping, cooking, dressing, laundry, remembering bedtime and morning routines—elude them, just as it does with ADHD men.  But women tend to grow increasingly insistent on delaying their pursuit of meaningful work, nourishing relationships, or creative passions until they achieve organizational perfection, their brain function’s size three.

One client summed it up perfectly when she implored, “Please help me get over this case of terminal uniqueness!”

I have never had a woman with these challenges come to an initial consultation seeking self-acceptance or a meaningful life. Instead, their desire is simple. In the same way that a woman who has body shame is convinced that her life won’t begin until she achieves her idealized body image, a woman with organizational and attention difficulties is often intent on being “fixed” so that she can achieve organizational nirvana. Her firmly held belief is that self-worth depends on this. Acceptance is a word that is anathema to her. If anything it signifies even more failure. She doubles down on her planners and tips, tools, and strategies; she hides away and digs more deeply into her piles, but often ends up burying her authentic self under them.

Women with ADHD are often not identified early on in life because girls do not typically have the hyperactivity associated with boys who are diagnosed. In fact, they are often people-pleasers who internalize their struggles instead of acting out. Because they have often grown up without an explanation for their challenges, their sense of self often becomes “tangled up” with their brain-based challenges, leading to their conclusion that their difficulties must be reflective of a deep character flaw. In our book, Dr. Frank and I describe the process we call ‘untangling,” through which we are able to help women escape this insidious web of hiding and shame. 

These neurodiverse women, just like those with body shame—or a member of any minority group, really—often internalize culturally transmitted gold standards of what is “good” and then toxically compare themselves to these false goals and illusory images.

Below are helpful steps you can take to take to address your brain shame and begin to take back ownership of your life: 

Become aware of how frequently you compare yourself to women who are organized and notice the cultural messages you constantly absorb from the media and from those around you. Listen through the lens of a minority and observe how neurodiverse women are talked about in a devalued way. Tune into your self-talk at these times and notice how this perpetuates your shame and redoubles your attempts to hide.  

Begin to look around for new role models of women. These don’t have to be women you know; they may be well-known, or in literature or movies. For example, I saw a documentary on the life of Supreme Court Justice Ruth Bader Ginsberg where I discovered her family wouldn’t let her near the kitchen because she was so clueless in this role. Obviously, her lack of ability didn’t define her! Contemplate what would have happened if she had made herself wait until she was better at cooking before she let herself go to law school or become a judge. 

Learn to talk to yourself in “whole person” language. For example, instead of solely focusing on your challenges, you might enlarge your view to be able to say for example, “I have problems with organization and I am smart and funny and warm and artistic.”   

Take the smallest tolerable step out of your comfort zone toward a new experience of success that reflects this view of yourself as a whole person. Take one step toward something you have always loved to do or wanted to try, even though you aren’t organized. Take a yoga class, take a walk, read a book, begin to write the first page of your novel, call a friend, volunteer for a meaningful cause. Choose something that reflects who you are beyond your piles and clutter. Positive psychology tells us to build what’s strong, not just try to eliminate and focus all our efforts on what’s wrong. 

Begin the practice of tolerating your disorganization, walking alongside your challenges instead of fearing them or letting them engulf you. Find a professional to support you, someone who is centered on you as a whole person and not only focused on your outward symptoms as a measure of your success. Just as with body shame, you wouldn’t want help from someone who was only interested in how much weight you lost that week, but instead focused on the quality of your health and life.  

Yes, brain shame is a lot like body shame. 

Let go of your rigid diets of organizational systems and instead practice accepting your unique brain, getting support for your challenges, and focusing on your enduring core qualities so that you can move toward a compelling new vision for your life.

And above all remember, as Dr. Frank and I like to say, “Only dogs and furniture need fixing!”

I am fortunate to interpret the world beyond the mundane. This good fortune is a result of being neurologically different. What some people—most people, it seems—learn automatically or intuitively, I had to consciously learn with active guidance from specific tutors and mentors. One specific mentor, a man I consider to be a true global citizen, showed me a picture of the Dalai Lama on the first day we met. 

“Do you know who this is?” he asked.

“Yes,” I replied, and rattled off a slew of facts and historical markers in the life of the Dalai Lama. My mentor was impressed, but at that time I did not interpret his nonverbal communication accordingly. In fact, practically none of his nonverbal cues registered in my mind. 

“What is he doing?” 

“Smiling,” I replied. 

“What does that mean?” 

After several moments of puzzlement, I said, “I have no idea,” and I meant it.

It wasn’t that I’d been pondering the existential nature of what it means to smile, or that I contemplated a series of circumstances that most likely led to make the Dalai Lama smile.

I did not understand what a smile meant. My neurologically different mind did not readily understand the four basic emotional states—mad, sad, bad and glad. It may be obvious that I consequently did not pick up on nonverbal subtlety or nuance. Since nonverbal communication makes up about 98% of all communication at any given moment, I was missing most of the underlying and implicit language that others seemingly know and take for granted. I was a literal thinker and my understanding of the world was black-and-white. My tone, cadence, and other speech patterns were akin to a stereotypical computer voice from Star Trek. Not only was I monotone, but I was also matter-of-fact.

I did not know that I was different for the first 18 years of my life. Up to that point, my scholastic and social experiences were often tarnished with more failures than successes, especially throughout elementary school and junior high. My family and I rejected my diagnosis of being on the high-functioning end of the autism spectrum for various reasons, mostly related to the fear of social stigma. At first, we treated the diagnosis as if it were a terminal illness; we were sorely misinformed.I learned that, although it was good to possess traits that distinguished myself from others, and although it was fine for other people to have disabilities, it was not okay for me to be different or disabled. I felt ultimately doomed. The fear of social stigma reinforced the belief that death was preferable to life with a disability.

As it turned out, that diagnosis was both a blessing and a curse. Although we—my family and I—now had a name and explanation for my strengths and weaknesses (and consequently, a level of meaning tied to life experiences), the diagnosis itself was a formal marker that I was different, and not in a good way.

Our attitudes changed when we learned about Landmark College in Putney, VT, the premier college for students with dyslexia and other learning challenges. Landmark gave me my life back by reframing my understanding of myself, not as a person fated to walk this Earth with a metaphoric scarlet letter on my forehead, but as an intelligent and creative person whose strengths can accommodate the challenges posed by being neurologically different. Landmark was—and is—a nurturing environment, and to this day remains my second home. The good people at Landmark helped me relearn how to learn, especially to build up and enhance my observation and interpretation skills.

Not everyone in my past, however, was as optimistic about my capacities for observation and interpretation. Outside of Landmark College, I did have some social influences who wanted the best for me. These people supported my interests with praise, encouragement, and other positive reinforcement. I am genuinely appreciative of their time, effort, and belief in me because they valued me for myself, including my quirks, and influenced me to become the person I am today. But there were (and are) other people whose influence also helped mold and shape my personality and attitude by attempting—and temporarily succeeding during earlier times in my life—to deflate, demoralize, or humiliate me. Ultimately, their ignorance and cruelty inspired me to make the effort to conscientiously value the worth and dignity of other humans who are “different.”

Of the negative influences, some people were genuinely ignorant—while others have been willfully ignorant. Genuine ignorance affords the opportunity to question the social assumptions influencing their thinking and consequently overcoming that ignorance—they are forgivable and redeemable. Knowledge is not power, but knowledge once applied becomes powerful. We may be further on the path to wisdom when we recognize how our past attitudes, beliefs, and behaviors contributed to the misfortune of others. We can actively decide to take proactive steps to keep ourselves from making the same decisions again. We can make the stability and/or change we desire when we realize we are, in fact, each other’s keeper.

Willful ignorance, however, indicates a tendency to disregard information that empirically contradicts our understanding of the way the world works, and suggests an absence of critical thinking, a preference for ideology over theory. Ideology is popular because ideology is a mantra people accept. Nothing needs to be learned to have an idea; no evidence is needed to support it. Theory, on the other hand, explains things—or at least tries to. If the theory doesn’t explain reality, than it’s time for a new theory.  Ideology does none of this. By design, it cannot explain all that it claims to. Instead, ideology changes things because it is employed to advance the claims of a particular agenda. However contrived they may be, ideologies are successful because they purport to explain everything, and people tend to like easy answers.

In my experience, ideology facilitates discrimination. Racism, classism, sexism, ageism, and ableism—among others—are all the products of systemic misunderstandings and distortions of what actually is. Not all people who believe in (and whose behaviors uphold) one or more ideologies are malicious or intentionally reinforcing a divide between “us and them.” But that is too often still the result. There are some people who believe rights and privileges are a zero-sum circumstance where bestowing rights on one group correlates with a loss of rights for other groups—like people who say “All Lives Matter.” The most successful ideologies, when taken at face value, are the ones implicitly understood and transferred between family members and generations.

My experiences with unintentional ignorance are accidentally painful, while intentional ignorance is essentially intentionally malicious. Either way, the common thread is that they are negative.

Higher education is inherently ableist; there are both implicit and overt praises and rewards for cognitive and intellectual acuity (and superiority) in mainstream teaching and learning. Whatever does not fit in the mold of mainstream higher education is subject to ridicule. One professor of mine initially refused to acknowledge legal and appropriate accommodations I received. During one class, he called on three students—me, a paraplegic, and a quadriplegic—telling us to come to the front of the classroom. When we got there, he first reprimanded the quadriplegic for taking too long in his automated wheelchair to navigate around book-bags in the aisles between the seats. This professor proceeded to explain to the class why we were “not fully human” because we “could not contribute fully to society” by virtue of our respective challenges.

Ironically, it was during my graduate school experience that I received the most discrimination for being neurologically different. Some professors disclosed to me which other students received accommodations by way of wanting to know why I sometimes under-performed them. They used language that assumed we all had The Disability—a single divergent profile which we all must have shared. Other professors refused to allow legal and appropriate accommodations because of ideological ignorance. They feared such accommodations might unfairly privilege me, and were unfair to students who didn't need accommodations at all.

Another professor accepted the accommodations, but claimed that I used them to sail through the program. “You always have a choice. You can use the accommodations, but I suggest you actually do the work for a change.” He did not know me or how much extra effort I must put in relative to neurotypical students, and thought nothing of routinely airing his judgments in front of other students about my performance. For instance, he knew nothing about the three years I devoted to an intensive program for neurologically divergent people like myself, working to relearn how to learn and unlocking my potential.

I once had a professor drop the accommodations paperwork from his hands after I gave them to him because he was afraid he would get my “disease” after touching the papers that I had touched. This professor eventually came around, consciously challenging his own assumptions about what disabilities are in general, and learning disabilities specifically. I even had a professor slow down and speak louder when talking to me. I know she meant well, but I do not think she fully comprehended the depth of her own ignorance.

The worst experiences came from one professor who claimed he knew “everything about disabilities.” How do you teach something new to a person who already knows everything? I endured routine physical aggression and verbal abuse in front of my peers. Several graduate students and key faculty reinforced the point that graduate school is very competitive, implying that the certainty of our placement in the program was tenuous at best. We were expected to endure these hardships, even if they violate civil law. During office hours meetings, I was belittled routinely. 

Thanks to you, we’ll now be known as the program that lets in anyone.

You are a waste of time.

Do us all a favor and leave.

This professor became so upset with me in class that he walked to where I was seated and shook his clenched fists as if he was going to strike me. When I remained seated and did not respond, he returned to where he was sitting and slammed the table in front of him before berating me in front of the entire class.

I informed two members of Disability Services leadership about this incident, and they made me aware of my options, including the protocol for filing a formal grievance against this professor. I declined to pursue formal or legal action as I feared retaliation by this professor. I instead opted to put on presentations for the department, the larger community, and local public school systems about learning disabilities and their legal and appropriate academic accommodations.

I was not the first student to experience mistreatment by this professor, whose fully tenured status comfortably protects him from consequences of mistreating others.

He overstepped the privilege of tenure by creating and maintaining a hostile work and learning environment. I do not want this professor to treat other students the way he treated me. I feared retaliation for the longest time, and even had nightmares where I was trapped in his office where he would actually hit me in class. But I also felt very strongly that others—especially academics—should be aware of his behavior, and how their silence constituted implicit support of his discrimination.

Not even the  institutional diversity committees could get it all the way right. They generally focused on the “big three”—race, class, and gender—as indicators of overall heterogeneity within the department among students, faculty and staff. What is missing, though, is cognitive and neurological diversity. I suppose the general lack of acknowledgment of the presence of different cognitive profiles stems from power. Academics may have experienced bullying in their past. Now in positions of power in academia (a social space in which their talents can thrive), the bullied can become the bullies.  Graduate programs have the ability to expose our fears and weaknesses, to make us afraid to come off as weak, but faculty should not prey upon those fears.

I suspect some of them may read this piece, although many won’t. My advice to them would be the same advice they told me: Do not take it personally. Instead of hiding behind the veil of anonymity (like those anonymous editors for our journals who sometimes provided scathing critiques of our work in part), I am out in the open, asking you to reflect on your own assumptions. Yes, academics are overworked and under-appreciated. Just because we are miserable or even just unhappy does not mean others must be as well. My civil rights as a neurologically different person do not reduce the rights you experience as a neurotypical person. Civil rights are not like pie—more for me does not mean less for you.

My accomplishments do not undervalue the significance of your accomplishments. You may say that my accommodations are unfair, but I say life is unfair—I did not choose to be neurologically divergent, but I am forever grateful for the positive experiences that have helped me to cope and thrive with my divergent mind. Perhaps the assumptions about mainstream teaching and learning are stuck in the past, whereas my mind and alternative ways of teaching and learning are looking to the future. The neurotypical old guard may be afraid of change. Change may be scary, but necessary, especially if we want to make a more equitable, just, and democratic world.

Over the course of my life, I have had to change my mindset multiple times, which did me a world of good and has benefited my family, friends, colleagues, and students. I encourage others to do the same.  Challenge your assumptions with empirical data derived from thoughtful observation and rigorous assessment, no matter the intellectual discomfort it might cause. Let us develop novel ways of looking at what we take for granted.

May we all be fortunate to interpret the world beyond the mundane. 

Once traditionally considered disabilities, conditions like ADHD, dyslexia, and autism actually represent the diversity of neurological processing styles. But will the educational community catch on and respect people — students and teachers alike — as neurological minorities?

2018 - I LIVE IN FEAR. I’m terrified each time I face the scrutiny of power-possessing individuals from the majority population.

I have learned over 50 years as a neurological minority that my best hope of survival depends on my ability to pretend to be something I am not, to hide my nature, to pass as “normal.”

In first grade I was formally diagnosed with dyslexia and hyperactivity, and I have lived most of my life in the shadow of that diagnosis — seven years of Orton-Gillingham tutorials to learn basic reading, seven years to graduate from college, a life of teaching atypical students.

Even though I have taught at the college level for decades, published articles and books, and even acquired positions of moderate importance in academia, I continually find myself at the mercy of people who confuse their inherent neurological privilege with superior merit.

* * *

THE TERM “neurological minority” represents a shift of paradigm underway in the field of educational psychology. Simply put, it describes a collection of people whose processing profile displays significant differences from the neurotypical, such that it would receive a diagnosis — i.e., dyslexia, attention deficit hyperactivity disorder, autism.

The emerging paradigm shift suggests that these profiles, traditionally considered disabilities, actually represent the diversity of neurological processing styles.

Since the 1970s when the diagnosis of dyslexia became more common, there is an active debate between those who use the term “learning disability” and those who prefer the term “learning difference.”

This debate is finding a new urgency since Steve Silberman’s 2015 book NeuroTribes: The Legacy of Autism and the Future of Neurodiversity presented the belief that having a biologically diverse set of neurological profiles presents an asset to the culture.

* * *

NOW, I WANT to be clear. This is not just another discussion within the “disability vs. difference” debate, for both of those concepts single out the individual as somehow different, not normal.

Because we are disabled or different, we are subject to the tolerance and generosity of the neurotypical community. It is true that on a neurological level there is something different going on, so the terminology of “learning difference” is a more accurate description than “disability.”

Nevertheless, each of these subgroups, in fact, shares its characteristics with a significant number of others across the traditional cultural lines of ethnicity, race, class, religion.

Furthermore, these atypical characteristics are genetic: My father, my children, and I all struggled in school.

I would suggest the term “neurological minority” is, in fact, a much more accurate description.

According to the Yale Center for Dyslexia and Creativity, as many as 20 percent of the population struggles with reading disabilities. The Centers For Disease Control estimates that up to 11 percent of children are diagnosed with ADHD. Furthermore, The CDC suggests that just below 2 percent of the population falls into the category of autism spectrum disorders, though I suspect that number will increase significantly as more educators come to recognize the manifestations.

* * *

ALTHOUGH WE constitute as much as 30 percent of the population, society at large still sees us as individuals requiring special treatment. Nationwide, school budgets are struggling under the antiquated paradigm, which views each of us as an aberration who needs something different: special education.

But I would argue the problem is not one of budgeting, but one of pedagogical assumption: as a culture, we have wrongly predicted the percentage of students who learn in the traditional manner.

Let’s take a moment to unpack the diagnostic distinctions highlighted above. Educational theorist MacLean Gander posits that we can divide the “learning disabilities” into three primary groups.

The first group, characterized by difficulties with a reading acquisition, includes dyslexia, specific learning disability, and auditory processing disorder.

This group represents anomalies in the left brain, requiring students to access different pathways to learn to read. For this population, instructional methods have proven effective in ameliorating many negative effects on reading.

A second subgroup requires higher levels of stimulus to activate executive functions. This group includes ADD, ADHD, executive function disorder — all associated with anomalies in the frontal lobe.

Research demonstrates this group of anomalies can be mitigated through the introduction of stimulant medication, increasing the ease with which executive functions can be activated.

A third — and, in some ways, still-emerging — subgroup, characterized by difficulties with social comprehension, processing speed, and often mathematic, includes autism spectrum disorders, nonverbal learning disabilities, and math disabilities. This group is associated with processing anomalies in the right brain.

A growing body of evidence suggests these difficulties are ameliorated with explicit skills instruction, including active reading, conceptual math, and even explicit instruction in social pragmatics.

Although it’s true that the learning difficulties associated with each of these subgroups can be diminished through appropriate intervention, the underlying neurological anomalies persist.

We can get them through school — but then what?

* * *

FURTHERMORE, by shifting the paradigm away from disability and toward the status of minority, those of us who learn differently are more able to embrace the truth of who we are.

By eliminating the derogatory implications of being “damaged” or “deficient” individuals, it becomes more difficult for the neurotypical community to segregate us, to humiliate us in public, to disparage our possibilities based on cultural assumptions of what it means to be normal.

Harvard University’s Implicit Association Test (IAT) demonstrates that 75 percent of the population has an implicit bias against people with disabilities.

I’ve personally lost count of the number of times that, proposing a challenging idea or a new system in a professional meeting, someone has pointed out a clerical error in my materials.

The reaction is usually on a continuum, from a murmur of embarrassment, to suggesting that I need to “try harder,” to outright dismissal.

To some, my carelessness suggests I am unfit to hold a professional position. Many educators take great pride in their clerical strength, the speed with which they read, and the accuracy of their proofreading, and they revel in the opportunity to publicly shame those whose processing style they deem subhuman.

* * *

EACH OF THE neurological subgroups has its own Achilles heel. People with reading disabilities are targeted for their reading speed, their lack of fluency, their spelling. (I have written “ofen must waite” as a class snickers at my mistakes — etched in chalk or dry-erase marker — so many times I have come to accept it.)

However, most dyslexic people I know would rather quit a job than publicly demonstrate their shortcomings.

Furthermore, people from the ADHD community are frequently targeted for their disorganization and struggles with time management. Many people in this group are charismatic and highly articulate and can pass fairly unnoticed until landing in the hyper-competition of the professional context.

I know many high-potential people who have abandoned working in any “professional” field to avoid the constant humiliation of being reminded about their punctuality or their organization.

People within the ASD community, however, are the most likely to be targeted. When you struggle with social pragmatics or processing speed, you’re at the mercy of every fool with even a minimal level of social status.

I have met many autie folks, often possessing superior IQ and educational attainment, who have given up on holding a job — and not because they can’t do the work.

They refuse to endure the constant humiliation and discrimination from the neurotypical culture.

* * *

FRANKLY, I’m astonished by the prevalence in the field of education: how can a well-educated professor who would never tolerate the targeting of individuals based on other minority characteristics — religion, race, ethnicity — feel so comfortable humiliating an ADHD student for being disorganized?

Why do we so easily join the chastising mob, when someone makes us feel “uncomfortable” though a perceived lack of social sophistication? “You’re a creeper! Shame on you!”

I find it astonishing how many educators cherish the belief that clerical errors in a document will provide immediate, ad hominem proof the ideas are not worthy of consideration.

“Does spelling count?” the student chirps, sliding deeper into the chair.

“Well, of course, dunderhead — spelling always counts!”

* * *

ADD TO THIS the statistical prevalence of innovation and ingenuity within these minority populations, and the plot turns even more sinister.

As cited last year in the Harvard Business Review, many atypicals often seek new ways to do things, becoming agents of innovation: the existing systems can be so painful to adopt that we constantly challenge and reimagine the systems around us.

Indeed, history is shaped by gifted thinkers who struggled in school.

Leonardo da Vinci, Isaac Newton, Charles Darwin, Thomas Edison, Albert Einstein — all stand as examples of atypicals who, frustrated by traditional systems, sought alternatives and reshaped the world’s understanding.

Psychologist and longitudinal researcher Russell Barkley demonstrates statistically that being from a neurological minority group significantly increases one’s likelihood to become a millionaire. Cleverness, ingenuity, reflection on existing systems — these are also traits that make one more likely to become a target.

When you construct your sense of self from the ease with which you can master existing systems, people who challenge those systems are terribly inconvenient. Rather than examine the shortcomings of those systems, it becomes existentially necessary to target those agents of change — and they are such easy targets.

* * *

AFTER NEARLY 30 years teaching skills to atypical learners, I have come to hold deeply mixed feelings about the field of education.

I became a writing teacher in an effort to make a difference for others like myself, struggling to survive in school. My dyslexia and my ADHD made school difficult, but at some point I discovered a love for books and an addiction to writing.

Though I have worked my heart out for 30 years, I cannot help but feel that I have failed.

Yes, I have taught students to read; I have watched students discover their voice. I have reassured terrified children that they are, in fact, welcome here on this planet.

Nevertheless, I have also participated in a field that is at its heart exploitative: because neurological minorities have no choice but to seek the support of “specialists,” we subject them to a systematic destruction of their sense of self. Before a student can be helped, that student must first acknowledge the need for help.

Only after students have accepted their status as “broken,” as “second class,” will we shower upon them the benefits of our superior dictionary skills. Where I once took pride in my dyslexia, as a personal connection to Thomas Edison, I’ve come to recognize how my atypical status continuously makes me a target in the field of education.

So I return to my statement from the beginning: I am terrified.

As we systematically disenfranchise 20 to 30 percent of the population — many of whom are charismatic and quite clever — we bolster the ranks of an underclass of thieves, drug dealers, and internet trolls: intelligent, capable people who do not see any point in trying to participate in “normal” society.

We quickly learn we are not welcome here, and we learn it in first grade.

Just as history has been shaped by the positive accomplishments of atypical people who struggled in school, so, too, is history shaped by smart, charismatic, often poorly educated individuals who — angry and humiliated — rise to power to exact revenge against a society that could not see their value. How often they are bolstered by large portions of the population who share in their resentment.

So I applaud Steve Silberman and others in the ASD community for bringing this discussion to the front once again.

But until our culture — and, more importantly, the field of education — shifts in this paradigm, neurological minorities will spend their lives either struggling to become, or recoiling in frustration from the futility of trying to become, “normal.”