Gender stereotypes have made us horrible at recognizing autism in women and girls

Published: Quartz (October 12, 2016)

In August, the National Autistic Society called on medical professionals to change the way they diagnose women and girls with autism spectrum disorder (ASD). Ever since the term autism was first coined by Hans Asperger in 1944, it has remained predominantly, if anecdotally, associated with men and boys. As a result, women with the condition may be being overlooked, even as the public becomes increasingly aware of its existence.

I know this from firsthand experience. As someone who was diagnosed with ASD as a child and has written about it extensively, the majority of other people I’ve met with official diagnoses were male like myself.

“I believe that my experiences as an autistic person has definitely been affected by my gender and race,” says Morenike Giwa Onaiwu of the Autism Women’s Network. “Many characteristics that I possess that are clearly autistic were instead attributed to my race or gender. As a result, not only was I deprived of supports that would have been helpful, I was misunderstood and also, at times, mistreated.”

It’s hard to say with certainty whether ASD has become more prevalent in recent years or if diagnoses are simply becoming more common, but either way the number of documented cases has gone way, way up. According to the US Centers for Disease Control, roughly 1 in 68 children in this country have been diagnosed with ASD; males are 4.5 more likely to be diagnosed than females. In total, approximately 3.5 million Americans are estimated to be living with some sort of ASD diagnosis.

Onaiwus’ experiences were echoed by those of several other women I spoke with as well. Whereas autistic men like myself are often identified early on, women report that their symptoms are dismissed, sometimes for many years, due to stereotypes about their gender and race.

“Social awkwardness? Of course not; apparently I’m just rude—like all the stereotypes of ‘sassy’ black women rolling their heads and necks in a circle while firing off some retort,” Onaiwu says. “Lack of eye contact? Apparently I’m a ‘shy girl’ or ‘playing hard to get’ or ‘shifty.’ Or maybe I’m just being respectful and docile because I’m African and direct eye contact might be a faux pas. Sensory overload, or maybe a meltdown? Nope, more like aggression or being a drama queen. Anything but what it really is—an Autistic person being Autistic who happens to be black and happens to be a woman.”

According to Sharon daVanport, who identifies as autistic and serves as president of Autism Women’s Network, these types of gendered expectations can be very difficult to navigate. For instance, “an eight-year old boy might have an intense interest in collecting maps,” leading his parents to worry that his desire to remain inside all the time is a signal that something might be wrong. “In contrast, a young girl who spends hours upon hours researching her intense interest will be considered quiet, polite, lady-like, and all the other gender-based labels which society assigns to girls before they’re even born,” she said.

It’s not just children who may suffer as a result of this type of ignorance. When I spoke to Kayla Schierbecker, a transgender autistic woman and college undergraduate, she explained that aspects of her personality made it more difficult for her to be accepted as a woman. This, she believes, was due in part to the way her autism presented itself. “Some of my hyper-masculine traits are going to be a barrier toward transitioning,” she says. “I have a fixation on things that are stereotypically thought of as men’s interests: technology, the military, sports.”
Carolyn Mallon is a nurse who was recently diagnosed with ASD with support from her therapist and neuropsychologis. “The symptoms, the diagnostic criteria are simply based on studies that were done on men only,” she explains, which in turn makes it more difficult for some doctors to understand the different ways ASD may present in female patients like herself.

The problem doesn’t begin and end with diagnosis. Indeed, a case could be made that autistic men benefit from gender privilege in the way that society responds to their condition.

“Some of the behaviors displayed by those on the autism spectrum scale seem to be the way many men in patriarchal societies (like ours) conduct themselves,” explains Esther Nelson, an adjunct professor at Virginia Commonwealth College. Nelson, who believes her husband’s symptoms are consistent with an ASD diagnosis, has written about the intersection between autism and feminism, especially in terms of relationships. For example, Nelson notes that men who seem “rigid,” aggressive or lacking in empathy may not stand out in the way that women exhibiting the same behavior might. Even people who are aware of autism and are educated to some degree are more inclined to give her spouse a pass for certain negative behaviors.

Clearly, advocates for the autistic community (including myself) need to be much more cognizant of the way gender informs the experiences of our community. This needs to happen for clinical reasons, definitely—women and girls are missing out potentially years of treatment and support. At the same time, scientists are also realizing that ASD affects girls differently than boys, revealing holes in our understanding of ASD generally.

And on a more personal level, my activism on behalf of and as a part of the autistic community will never be complete if it is not intersectional. Indeed, I would say that it’s impossible to be an effective advocate for autistic individuals without incorporating a feminist perspective. When you fail to account for how gender roles shape every aspect of our social life, how can you effectively capture the experiences of women whose neurological typology impairs their social functioning?

I am reminded of the words of a woman who wrote a web comic about her experiences living with ASD. When describing how other people write about autistic individuals online, she noted that “the stories I read often describe people who cannot speak for themselves. These voiceless humans are treated as objects of inspiration and burden—objects, not people.” The process of humanizing the autistic community is difficult and ongoing, but

it must begin with a pivot away from the discussion’s male-centric focus.

Jill Stein and Donald Trump are both linked to a dangerous anti-vaccine myth that just won’t die

Published: Quartz (August 3, 2016)

Green Party candidate Jill Stein likes to present herself as a pro-science, more idealistic alternative to Hillary Clinton. Stein has so far managed to stay out of the media maelstrom, but a series of troubling comments are making headlines for all the wrong reasons. One of Stein’s most problematic opinions resurfaced this week when her campaign deleted a tweet in which she claimed there is “no evidence that autism is caused by vaccines.” (The Tweet was eventually replaced with one that qualified her position as “I’m not aware of evidence linking autism with vaccines.”) Although she hasn’t gone quite as far as Donald Trump—the Republican nominee has openly suggested that vaccines cause autism—Stein’s statements are at best irresponsible and misinformed. They are also baffling, given that the Green Party likes to tout its pro-science credentials.

In some ways, Stein’s anti-vaccination comments are more insidious than Trump’s—at least Trump has made his position clear. During a Reddit AMA in May, Stein claimed that she distrusted vaccines because “regulatory agencies are routinely packed with corporate lobbyists and CEOs. So the foxes are guarding the chicken coop as usual in the US. So who wouldn’t be skeptical?” This line is blatantly misleading. As Stein (who is herself a medical doctor) ought to know, most of the people who sit on the Vaccines and Related Biological Products Advisory Committee are scientists and public health experts. Nevertheless, she reiterated this statement during a July 29 interview with The Washington Post, arguing that although “vaccines are an invaluable medication” they need to be “approved by a regulatory board that people can trust.”

She later added that when she was a medical doctor, “there were concerns among physicians about what the vaccination schedule meant, the toxic substances like mercury which used to be rampant in vaccines. There were real questions that needed to be addressed. I think some of them at least have been addressed. I don’t know if all of them have been addressed.”

The problem here is that in fact, researchers have spent a long time answering the “questions” Stein mentions. The academic article that helped spark the most recent iteration of the anti-vaxxer movement in 1998 has been conclusively discredited, and 10 of the paper’s 12 co-authors have since retracted their support. Subsequent studies have repeatedly found no correlation between vaccines and autism, and have confined that vaccines given to adults and children are safe with rare exceptions.

Similarly, there is no evidence that the recommended schedule of vaccines can cause other diseases later in childhood or that vaccines overwhelm a baby’s immune system. Although there is evidence that the MMR and MMRV shots have been linked to febrile (fever-caused) seizures, the episodes do not cause any long-term health effects. More importantly, such seizures are twice as likely to happen if a child’s vaccination schedule is delayed.

What are clear, however, is the anti-vaccine movement’s consequences. Unvaccinated children have caused outbreaks of diseases that would have otherwise been preventable, including the mumps and whooping cough. An unvaccinated child was also tied to the worst US measles epidemic in twenty years. “A substantial proportion of the US measles cases in the era after elimination were intentionally unvaccinated,” wrote researchers at Emory University and Johns Hopkins Bloomberg School of Health earlier in 2016. “The phenomenon of vaccine refusal was associated with an increased risk for measles among people who refuse vaccines and among fully vaccinated individuals. Although pertussis resurgence has been attributed to waning immunity and other factors, vaccine refusal was still associated with an increased risk for pertussis in some populations.”

And then there’s the anti-vaccine movement’s offensive undertones. As a person with Asperger’s Syndrome who has written extensively about our culture’s evolving attitudes toward autism, I am deeply disturbed by the ease with which spectrum personalities are dismissed and belittled by anti-vaxxers. One of the main goals of the socially active autistic community is to explain why having the high-functioning version of this condition, as millions of Americans do, is not a disability, nor is it inherently debilitating. While social intolerance toward non-neurotypical behaviors can make life difficult for autistic people, high-functioning autism itself is neither healthy nor unhealthy. It is simply a difference in neurological structure.

In the future, the notion that high-functioning autistic people need to be “treated” or “prevented” will likely be viewed with the same contempt that we currently direct towards those who think you cure homosexuality. Unfortunately, people like Jill Stein are helping to keep this reality out of reach. So long as a large section of our population continue to view autism as a “disease” or a “glitch” caused by corrupt doctors or medical boards, autism will remain stigmatized.

In light of the stakes involved here, Stein must unambiguously denounce the idea that vaccines cause autism. If she will not do this, she must admit that she is, in fact, part of the anti-vaxxer conspiracy movement. Stein is running on a platform that champions economic and social injustice, and has told voters that she deserves to be taken just as seriously as her more mainstream rivals. Should she refuse to repudiate her vaccine comments, however,  progressives need to accept the fact that their Green Party candidate is not serious about contesting this election.

Why I Write

Published: The Good Men Project (July 21, 2016)

I feel like answering a question I’m often asked about one type of article I like to write… in no small part because I am myself curious about the answer.

It’s been more than three years since I first started writing about my experiences as someone with Asperger’s Syndrome. The idea first came to me after it was reported that Adam Lanza, the mass shooter at Sandy Hook Elementary School, was himself high-functioning autistic (another term for Asperger’s). At the time, I decided to go public with my stories because I wanted to demystify the condition and establish that Lanza alone was responsible for his actions.

What I gradually discovered, though, was that an audience exists in our culture for a certain type of literary navel-gazing. There seems to be the growing realization that the best way to achieve knowledge about and connect with others is to understand ourselves. As we do that, we begin to realize that the things we believed made us ineluctably different were actually shared by a whole world of people. Sharing a part of ourselves with the world is one way, however slight, of increasing our collective capacity for empathy and insight into the human condition.

It is also immensely gratifying. More and more, I find myself using certain article topics as a form of therapy. There kind of cohesive analysis required to adequately discuss what it’s like dating with autism, or constantly damaging relationships because of social rules you don’t understand. You have to boil down years and years of stories into a few general patterns and themes, which can be enormously cathartic provided your mindset is sufficiently detached.

The only danger in this approach, I’ve found, is that it’s dangerous to be careless when using it. I often worry that problems which I discuss with focusing and driving may be viewed as embarrassing. Certainly I’ve unintentionally embarrassed other people, particularly in articles where I focus with too much detail on one particular story, which can come across as petty. There are articles that I regret writing because I know that they came across in this one and hurt people I didn’t intend to.

That said, my personal articles have more than paid off for me in one very important way: Through these pieces, I have developed friendships with dozens of people who were kind enough to reach out after reading something I wrote. Roger Ebert once referred to friends made in this way as “far flung correspondents,” and I couldn’t think of a better term for them. While it’s unlikely I’ll meet more than a handful of these friends face-to-face, I treasure my relationships with them no less.

These connections are also of inestimable value to my writing. While I usually focus on my own stories (I only name or photograph other people in my article when given expressed permission), I often draw larger conclusions about the common themes of HFA experience because of what readers have told me they’ve been through. This symbiotic relationship between the content I write and those who read it is healthy for everyone involved. It allows for a very unique kind of discussion to develop, one that I feel privileged to play a part in.

 

The Ableism of Non-Autistics

Published: The Good Men Project (July 12, 2016)

Wouldn’t it be great if everyone had a handicapped parking space?

Obviously this can’t happen – the whole point of handicapped spaces is that they provide the physically disabled with closer proximity to buildings than the physically abled – but an equivalent is possible when it comes to social interactions. To understand what I mean, though, it is first necessary to explain a form of ableism with which high-functioning autistics (HFAs) are confronted every single day.

I’m referring to how, when you are an HFA, friends and other associates will often discontinue their relationships with you without ever explaining why.

This has happened to me more times than I can count. Most recently I lost my best friend when, after I apologized over what I’d believed was a simple disagreement, he stopped talking to me without explaining why (and despite repeated requests on my part that he do so). This was even more hurtful  because he has known for years that I have autism, and I made it clear that I didn’t know why he was upset with me for that reason – but he simply didn’t respond.

Like I said, though, this is only the most recent example, and at least there had been a minor disagreement (or what I perceived to be minor) that precipitated it. When a friend I had known since middle school froze me out, it had come out of nowhere; the same is true for a fashion blogger with whom I had often collaborated. “I can safely say there is nothing more infuriating than me misreading a cue, this causing a large problem, and then being left for dead – radio static, nothing,” explains my friend Josh, who is also an HFA and one of the most brilliant men I know (he is currently an undergraduate studying physics). “It’s happened enough times between friends and significant others to warrant a small novel. The problem is, neurotypicals (like any other advantaged group) approach these social playing fields as if everyone is on the same level.”

Josh isn’t the only HFA I know who has complained about this; indeed, being arbitrarily dropped is BY FAR the number one complaint I’ve heard from fellow HFAs since I began discussing these issues as a public figure. It is also, by far, the concern that neurotypicals are most likely to dismiss when it is brought to their attention. Three reasons are usually given for that dismissal. The first (and most despicable) is that this is simply a part of life and HFAs simply need to get used to it – a statement that belies privilege if there ever was one.

Then there are the people who claim that, while the neurotypicals who do this to HFAs are wrong, we need to understand that it’s because explaining why they want to discontinue an association makes them “uncomfortable.” The flawed reasoning here is that they say this as if it ends the conversation. What they’re ignoring is that systems of privilege are usually supported by the discomfort that dismantling them would cause the privileged (think how often people who use racial slurs complain that they don’t want to police their speech). Because people who can’t read nonverbal social cues are at a disadvantage, not verbalizing why you’re distressed with them is ableist and abusive – regardless of whether you intend for it to be that way. Your discomfort at the thought of accommodating HFAs isn’t where the conversation ends; it’s where it begins.

This point is to important that it bears repeating. It doesn’t matter how many yellow ribbons you wear or how much change you drop into those little charity containers for autistics at your local supermarket. If you are unwilling to show the most basic kindness in your interpersonal relationships with an autistic person, then you areabusing your ableist privilege. That doesn’t mean you have to maintain association with an autistic person if you don’t want to, but unless you have sound reason to feel threatened by that individual (and I’m talking extreme situations here), it is ableism to freeze out someone who is neurologically incapable of understanding why. Just as I’ve lost count of how many times this has happened to me, so too have I lost track of how many HFAs have discussed how traumatizing it has been when this repeatedly happens to them.

This brings me to the third point I usually hear from neurotypicals when I bring this up – namely, that everyone gets frozen out. While I don’t doubt that this is true, there is a traumatizing aspect to the experience for those who are socially disabled that the socially abled simply cannot comprehend. Of course, that doesn’t make it okay when it happens to neurotypicals… and so I return to my earlier parking space analogy. Although we can’t live in a society where everyone gets a handicapped parking space, we can live in one where every individual is accountable for their social decisions. Indeed, because high-functioning autism often isn’t self-evident, perhaps it would be better if each person erred on the side of caution and simply treated each other… Well, like human beings.

Then again, perhaps the notion of actually applying The Golden Rule to every man, woman, and child is too radical even for an article like this one. At the very least, though, if you know someone who is on the autism spectrum, learn that freezing them out is no better than parking in a handicapped space.

Why “Finding Dory” speaks to me as an autistic man

Published: Salon (June 17, 2016)

There is a Yiddish word, verklempt, that roughly translates as being choked up to the point of near-tears without actually crying. If you grew up with a learning disability or raised a child with one, there are plenty of scenes in Pixar’s “Finding Dory” which will have that effect on you… and considering that quality family films about learning disabled characters are a rarity, it is refreshing to see “Finding Dory” rise to that challenge.

One scene in particular resonated with me: Dory’s parents, who recognize her short-term memory problems when she’s very young, are discussing whether she’ll be able to have a future. Her mother is hysterically crying because she’s terrified that her child won’t be able to make it on her own, and the father’s efforts at reassurance are as much for his own benefit as hers. Shortly thereafter she is whisked away in an accident, no doubt confirming their own worst fears.

While I’ve never had a child myself, I was diagnosed with Asperger’s Syndrome as a child, and I can only imagine that my parents had doubts similar to Dory’s when they heard the news. I know for sure that, like Dory, the awareness of my limitations had a profound (if at times subtle) effect on how I behaved toward others. When you spend your entire life knowing that you’re “different,” you apologize more often (as Dory does in the film), just in case you’ve messed up in some way indiscernible to yourself; you blame yourself for the hardships caused to your parents (again, like Dory); and when you find people who accept you for who you are, and even point out that your weaknesses can become strengths, the notion frequently comes as a shock (points again to Dory).

Indeed, there aren’t many films that depict the struggles of having a learning disability quite as effectively as “Finding Dory.” Part of the film’s advantage is that, instead of focusing on a specific real-life syndrome, it uses Dory’s generic short-term memory loss as a stand-in for any disability that comes to mind. Whether you suffer from dyslexia or OCD or ADD, there is probably some aspect of Dory’s perspective with which you can identify. The common thread binding all such conditions isn’t a particular symptom or set of symptoms, but rather the inability to meet society’s expectations about what a “functional” individual is able to do. Everyone around Dory can remember things, so the assumption is that she can, too. When she can’t, the default is to blame her.

This is a lonely way to go through life, and the most powerful visual moments of “Finding Dory” are illustrations of that theme: Dory’s tiny bright blue form swimming against a vast expanse of ocean, in chilling blues or murky greens. It is easy to understand her state of mind when set against such a literal physical isolation, and one of the movie’s greatest strengths is understanding that this loneliness is the real heart of its story — not the ins-and-outs of memory loss. One of the earliest scenes of the movie shows young Dory asking her parents, “What if I forget you? Would you ever forget me?”

There is a deep underlying truth to Dory’s question. All of us, learning disabled and otherwise, are driven by a fundamental need to know that our lives are important. We must know not only that we won’t forget the people who are important to us, but that they will remember us — that we matter. Fortunately for Dory, she has a cheerful disposition, creative mind, and genuinely good heart, so there are plenty of characters around to reassure her of her own significance.

This isn’t true for everyone, though, and if there is one message I hope each moviegoer can take from “Finding Dory” – and especially those who have learning disabilities, or love someone who does — it is to embrace your own special place in the lives of those who mean the most to you. We live in a threatening and cynical time, one that makes it very easy to pen lengthy op-eds about what is wrong with man and society, but this simple truth needs to be reiterated if we’re going to preserve anything worth keeping about the human condition. All of us are flawed, and while some of those flaws are more conspicuous than others, each human being nevertheless possesses the innate ability to make the lives of the people around them happier and more meaningful by simple virtue of being who they are.

If “Finding Dory” can make that message part of our cultural zeitgeist when confronting learning disabilities, it will have performed a truly wonderful public service. Who would have thought one of the deepest films ever made about learning disabilities would star a talking blue fish?

How someone with autism views all your ridiculous dating habits

Published: Fusion (June 7, 2016)

As someone with autism, I’ve often wondered if there’s anything I can do to make neurotypicals, the name for you folks in the non-autistic community, less unpredictable to myself. I pose this question not as an attack or criticism. It’s just that those of us with high-functioning autism—or Asperger’s Syndrome in my case—struggle every day with your seemingly illogical behavior.

For me, this question applies to every realm of socialization, but for the sake of brevity (and this piece) I’ve chosen to focus on dating because it forces me to be at my most emotionally intimate and vulnerable. Based on my own experiences dating neurotypical women and writing about dating with Asperger’s, I believe there’s still a lot of understanding to explore—but first we need to identify the underlying reason for the mismatch in emotion and expectation.

Let’s start with how people with autism approach the concept of honesty, which has frequently gotten me into trouble. Although neurotypicals claim to value honesty, when I actually am, they tend to be put off by my excessive candor. The instinct of someone with autism is to bluntly state his or her full thoughts and opinions. Feelings tend to get hurt, unspoken rules of propriety are violated, and in general, even if the intentions are no longer romantic, it’s still possible to come off as a total clod.

For this piece, I interviewed several women I had dated (with varying degrees of seriousness) about the ways I have offended them. At least, the ones who answered my emails. One, who I invited to a wedding long after we’d stopped seeing each other but remained friendly, recalled being “a little caught off guard by the invite to be a backup plus-one.” She explained to me that “women typically prefer to not be a backup plan or a plan B. It’s a silly pride thing, I guess.” This made no sense, but I knew I may have inadvertently rubbed her the wrong way.

On another occasion, when I tried to commiserate with a woman I casually dated last winter about our mutual weight gain concerns, she scolded me by saying, “A tip on female sensitivity: You never highlight your female friends weight issues until brought up by them.” It made me feel like I just couldn’t win. As for dating me, she wrote, “You are very picky. Direct, to the point that you can come across as rude and inconsiderate.”

What neurotypicals subconsciously deduce, Aspies can only pick up through direct verbal communication.

The neurotypical’s aversion to being direct can be incredibly confusing for those with autism. For instance, when a potential or past romantic partner doesn’t respond to emails, someone with autism will logically, unless they are given a specific reason, assume the silence can mean anything—from hostility to forgetfulness. What neurotypicals subconsciously deduce, Aspies can only pick up through direct verbal communication; without it, we’re left with nothing but the full range of plausible explanations.

One benefit to having autism is that I’m not easily embarrassed. For example, in one of my first relationships, my then-girlfriend and I were ridiculed by a Facebook group for our frequent PDA. She was mortified, while I was simply surprised that other people in our small liberal arts college even cared. Similarly, a woman I dated back in 2014 once had to pull me aside to explain why others were annoyed by my habit of talking at length about the history of health care reform in America. This was at the height of the Obamacare controversy, and I hadn’t realized the topic was verboten because as an Aspie, fixating on topics you’re passionate about is not onlyhardwired into your brain, but one of the tastiest spices you can add to any conversation. For neurotypicals, though, it can become a nuisance, particularly when the topics can easily offend others…like politics, Obama, or health care in America.

You may have noticed there is a common theme tying all these examples together. Namely, it’s that neurotypical behavior is rooted in a reliance on a set of unspoken rules about “the way things are supposed to be.” My life would be much easier, however, if the rules of one social situation—say, dating and relationships—were the same across the board. And if each party was as honest and open as possible with their opinions, feelings, and intentions. Imagine a world where if something was said, it was meant literally and without subtext.

Instead, most people live by complex set of guidelines that determine everything from how to communicate what one wants out of a relationship to when he or she feels offended. Because these rules have never been formally adopted, however, each individual winds up settling on the ones that make the most sense based on his or her past experiences and perceived self-interest. The final result, while undeniably exciting, is also excruciatingly chaotic.

I’m currently seeing a beautiful, smart, and (luckily for me) extremely patient and open woman—who also happens to be a neurotypical. As she has pointed out, “the gift of dating with autism” is that “you understand clear boundaries and can follow them.”

For neurotypicals, boundaries are fluid and the methods for communicating them are ambiguous at best. Perhaps in the future neurotypicals will learn how to behave in more consistent and predictable ways, just as people on the spectrum will hopefully develop tools for overcoming their social impairment. Until that day arrives, though, each side will simply have to try its best to empathize with the other. After all, none of us chose to be who we are. We were all born this way.

Why I Write About Asperger’s Syndrome

Published: The Good Men Project (March 24, 2016)

When my first article was picked up by Mic in February 2012, I thought that my dream of becoming a political columnist had finally started to come true. I wasn’t wrong, but I never anticipated one turn that my career was destined to take. Although I still love writing editorials on political and social issues, I also find that more and more often I discuss Asperger’s Syndrome – a condition that I have had for as long as I can remember.

I write about being a high-functioning autistic (HFA) for three reasons:

  1. The only way our situation can improve is if we insist that it become part of the larger conversation about human rights.

Based on my own experiences and what I’ve heard from other HFAs, it’s pretty clear that the biggest challenge facing people with Asperger’s Syndrome is that so few people are aware of our struggles. When you are born with an inability to effectively read social situations, when your mind is wired to process information and emotions and to execute tasks in a fundamentally different way from most other people, you are bound to face misunderstanding, intolerance, and discrimination your entire life. If we want this to stop, our only option is to make sure that the rest of the world knows what we’re experiencing and what they are doing to us.

  1. The brain is the final frontier of human knowledge.

When I was a child, my neurologist once told my parents that “what we know about the human brain can fit on the head of a pin.” Although cognitive sciences have made enormous strides since the late 1980s, there is still much progress to be made, and one of the best ways to advance our body of knowledge is for everyone with an atypical neurology to shed light on their experiences. Even if the people doing this are only contributing to lay literature instead of formal medical or scientific journals, their words can still be picked up by scholars and used to yield insights about the human condition.

  1. It has been cathartic for me.

Most writers are familiar with the axiom that we often write best when we turn inward instead of looking outward. If the popular reaction to my articles on Asperger’s are any indication, this is still very much the case, but what I never anticipated was how much I grew as a person in the process. By analyzing my struggles in such a public forum, I made peace with aspects of my life that had tormented me for years. Similarly, by receiving such positive feedback from other autistic individuals throughout the world, I realized that I wasn’t alone, and was able to let their words help me as much as mine (hopefully) assisted them.

There isn’t much more for me to add right now. I never expected to find myself performing self-vivisections for the world on a regular basis, but I don’t see myself stopping anytime soon. Even if I wanted to, I don’t think I could… or should. Now is as good a time as any to explain why.

Being a PhD Student with Asperger’s Syndrome

Published: The Good Men Project (March 12, 2016)

Without question, pursuing a PhD in history was one of the best decisions of my life. Not only has it opened doors in my writing career – which, professionally speaking, is my one true love – but it has allowed me to interact with some of the most brilliant people I’ve ever met. The conversations that we have had both within and outside of the classroom have challenged my assumptions and enriched my mind, while the hundreds of books and articles that I’ve read have informed my perspective as a political columnist in ways that would have never been possible otherwise.

Most important of all, though, it has been an overwhelmingly positive environment for a person with high-functioning autism (colloquially known as Asperger’s Syndrome). In most lines of work, fixated interests on intellectualized subjects are perceived as at best frivolously enjoyable and at worst downright annoying; academia, however, demands the kind of intensely cerebral passion that comes as naturally to me as breathing. Similarly, although most autistic people struggle in social situations because they are viewed as “weird,” idiosyncrasies are cherished rather than marginalized within academic environments.

That said, there is one enormous way in which academia is brutally – albeit unintentionally – unfair to autistic people. By way of explanation, I turn to aspergersyndrome.org, which points out that students on the autism spectrum “are often off task, distracted by internal stimuli; are very disorganized; have difficulty sustaining focus on classroom activities… tend to withdraw into complex inner worlds in a manner much more intense than is typical of daydreaming and have difficulty learning in a group situation.” Among other things, this manifests itself in “poor concentration, slow clerical speed and severe disorganization.”

Although that piece focused on autistic children, it is especially relevant to autistic PhD students. Despite earning a 3.9 in my Masters program at Rutgers University and a 3.8 in my PhD coursework at Lehigh University, I have never once taken notes while reading a text or listening to a lecture. Even though I absorb all of the information and analyze it with ease, the ordeal of stopping my train of thought to jot down notes is nothing short of excruciating. One analogy that I have often used is that it’s like listening to a piece of music but stopping it every three seconds for observations. Some people may enjoy that, but for me the constant breaks are unsustainably disruptive.

Unfortunately, it doesn’t seem like our modern academic system has any effective way of accommodating individuals with this particular disability. My professors, though sympathetic, don’t seem to know how exactly I can be helped, and now that I’ve reached the point where I need to take my comprehensive exams – a series of tests that require me to deconstruct hundreds of books, many of which I’ve already read but have no record of aside from my own memories – I find myself quite unsure of how to proceed. It’s easy enough to reread all of the books that I was once assigned, and because I’ve always done well in my classes I haven’t struggled with recalling important details or grasping necessary themes. Nevertheless, I cannot simply break thirty-one years of hardwired neurological impairment and start jotting down the notes that the system insists I produce. Try as I might, it seems that I have hit a wall which I cannot break through.

I wish that I could close this article on a hopeful note, but the truth is that I don’t as yet have any answers. All I know for sure is that, whenever I write about the predicaments which I endure as an autistic person, I almost always receive dozens of emails and comments from other autistic individuals. They commiserate with me about their similar experiences, offer advice on how to effectively handle my own problems (which I very much need right now), and reward me with the inestimable pleasure of their companionship. Since I haven’t broached this specific aspect of my autistic life in the past, I felt now was as good a time as any to bring it up. With any luck, someone somewhere will benefit from it.