Autism

I’m autistic. But what does that MEAN?

8th August 2021 by Finn Gardiner Leave a Comment

(content warning: including child sexual abuse, bullying, harassment, slavery, and exploitation)

I’m autistic. But that explains everything and nothing about me. I¹ am also thirty-five years old, live in a postage-stamp apartment with my eight-year-old tabby cat, and love cheesy pop music. I have a job I love, a circle of dear friends, and a community that has seen me through the best and worst of my adult life.

I don’t like writing much about myself; I’d rather write about my work and what I’m interested in. I don’t actually crave the spotlight, but I feel I’ve been thrust there just to make myself understood. I am also aware that I may sound like a self-narrating zoo exhibit, though I try to avoid this. I am not Temple Grandin, Daniel Tammet, or Stephen Wiltshire. I am not Social-Justice Rain Man; I am not your fucking inspiration. I am not a computer, and I am most certainly not your computer, not a flesh-and-blood Siri, Cortana, or Alexa. I’m just human. And since I want to just be human, I don’t talk very much about myself. But I’m going to try today anyway.

I hear of concepts that imperfectly describe what I see and feel: hyperlexia, savant syndrome, autism, Pervasive Developmental Disorder. But I could understand what I read as a child unless I was dissociating and couldn’t focus. I don’t have an intellectual disability. And what do you make of someone whose development is delayed in some ways, advanced in others, and utterly normal in still others? The other ones are no improvement: “gifted” smells of the schoolroom or the psychic’s booth, and in any case, I associate it too much with shitty elitist educational policies. “Asperger syndrome” is all wrong; I associate it with “Aspie supremacists” and autistic people who are more abstract than sensory—I’m both. Just “autistic” won’t work, either, because there are different kinds of autism. And “twice-exceptional”? What the hell does that even mean? And I’ve often felt more exceptionable than exceptional, anyway. One of my high-school teachers compared me to Temple Grandin, but I didn’t really make the connection; I thought I was just weird².

I don’t talk much about my internal experiences because my abilities are verbal and symbolic; I’m not a human calculator, musical prodigy, or virtuoso painter³. Because I can filter what I say with words, I understate just about everything. I also worry about being believed, even though I know others with overlapping experiences.

Imagine what it would feel like if the words, numerals, ideas, and other symbols that you hear and read had feelings, shapes, sounds, emotional associations, historical references, textures, personalities, and smells—and you feel them almost as acutely as you do your normal senses. This is ideasthesia, which I have in excess. Ideasthetes process abstractions as concrete sense data. For me, words and symbols call up visual, spatial, emotional, historical, textural, and auditory impressions. Ideasthesia makes me a good writer and designer, but it’s also painful for me to see bad typography, misspelled words, punctuation errors, and poorly matched patterns.
When I read my friends’ words on my computer or phone, it feels as though they’re physically there—I feel their personalities, energy, texture, and emotions. That alone makes it all worth it.
What some see as abstractions—racism, poverty, discrimination—I see as embodied realities. Not only because of my own experiences with marginalisation, which are legion, but also because I actually feel them. Racism is my enslaved ancestors shackled together as they are forcibly repatriated to an alien world. Fingers being sliced off for learning how to read. I think of my sharecropper great-great-grandparents bent over double, picking tobacco in the humid Carolina heat. Demonstrators with calloused feet, sweaty brows, and determined faces holding signs saying, “I AM A MAN.” It’s Blind Tom Wiggins, a kindred spirit from another age, exploited and manipulated and treated as a curiosity. Though his talents were different from mine, there’s a pleasing familiarity in his perceptual acuity—and the plaint of someone who hasn’t been allowed to be a someone. And it’s my being followed around stores, constantly being asked, “Can I help you find anything?” It’s the inexpressible fear of becoming the next George Floyd or Mike Brown if I walk down the wrong street on the wrong day at the wrong time. I don’t want to become a hashtag I’ll never be able to read. When I see Black Lives Matter signs, I start welling up a little. I’m grateful for the acknowledgment that my life does matter, but I’m also angry that it’s taken this long for people to say it.
My verbal thoughts are in complete sentences, using standard syntax, spelling, punctuation, and capitalization. Sometimes I can even choose a font for my thoughts. I can also read fluently in my dreams.
Symbols can be heard, tasted, befriended, felt, touched, heard. My ideasthesia is a kind of animism: facts and words and dates and numbers are alive. This is part of why I’m so fanatical about spelling—I’m not upset at the person making a mistake, but I am upset to see an impostor instead of the word I expected. A misspelled word is like a misspelled name. I try to be patient with people, but that’s hard when errors in spelling, punctuation, diction, and usage are saws, lawnmowers, and fireworks going off in your ears. If I’ve ever snapped at you because of an error that set off my internal alarm bells, I’m sorry.
Minute details in people’s speech, writing, and actions weave themselves into larger patterns—my brain seems to have created wetware algorithms. They’re not always perfect, but they’re reliable enough. When I point out the details that helped me identify the pattern, people are incredulous: “Why are you acting this way?” “What’s the matter with you?” “Why do you care so much?” Because those minutiae add up, and if I see certain things constantly going together, I’m going to draw an inference. If you’ve ever sincerely asked why I feel so strongly about things, thank you. Your asking showed that you cared.
I project myself into concepts I want to understand thoroughly. I was never able to understand the idea of derivatives and integrals in calculus until I jumped into the problem, so to speak. For differentiation, I saw myself in a freeze-frame animation moving along a curve. For integration, it was several versions of me superimposed on one another on a single point on that curve.
I have many intense interests, but my primary one is humanity: who we are, what we do, and what we can become. It’s easier to blend in when you’re doing what everyone else does by talking and using symbols. Because of that, I think people understand me all right most of the time, but I’m always steeling myself for quizzical looks when my thought processes reveal themselves unexpectedly.
I remember a lot of things that most people forget. It’s not as severe as full-blown hyperthymesia—I can use my long memory for practical ends—but some aspects are similar. I don’t consciously choose to remember those details. At times I like having all these memories; at others, I’d prefer to forget them. I have PTSD, anxiety, and clinical depression, so it’s sometimes torture.

Although I’ve become more comfortable over time with my being autistic, it’s difficult to cast off all the accumulated shame: shame for existing, shame for being “too much,” shame for seeing things differently from most people, shame that I could never make myself easily understood no matter how hard I tried. It didn’t help that my parents were emotionally and sexually abusive. They are homophobic, transphobic, xenophobic, self-hating, deeply traumatized, hard-right evangelical Republicans who would vote for a flaming pile of shit if it had an R next to its name.⁴ They exploited my mind, body, and dignity for their own perverse and self-interested ends. I was treated like a card catalogue, Google Translate, a RealDoll, a pet—never like a person. Some abuse memories are filmlike flashbacks, but other incidents linger only as bodily memories, intrusive sensations, fears whose cause I’ve long forgotten. I suspect that my parents treated me the way they did for a few reasons: they isolated me to avoid reports to Child Protective Services, they have their own intense internalized ableism, and they simply didn’t know what to do with me. Although I can understand the last two reasons—I was doubtless difficult to raise—nothing in their past or present can excuse what they did to me. I hope they’ve never harmed any other child in their care.

On top of that, I grew up in a military family, where change is constant and stillness is brief. We moved every three to four years, going from state to state to country to country. (I have an especial dislike for jargon and alphabet soup because of all this; I can’t help thinking of all the military acronyms and initialisms—DoDDS, DEERS, PCS, TLF, BDUs, MREs, AFB.) Like other Air Force households, ours was organized as a strict hierarchy; we all had to know our place. Although my father was said to be at the top of this hierarchy, my parents shared power more equally than they would admit. Children were to be seen and not heard—or at least not heard too loudly. This is why I both need and fear attention: I want to be around people who also want to be around me, but I’m also terrified that if I stick my neck out, it’ll get chopped off.

Military families often organize themselves like units and battalions; individuality is subordinated to unit cohesion, family cohesion, national cohesion. Unquestioned obedience is the norm. You may be incoherent on the inside, but you’d better look sharp regardless. This may work for the troops, but it’s no way to raise a child. It was no great feat for eleven-year-old me to empathize with the characters in The Giver and Nineteen Eighty-four: these dystopias were just military-base life intensified ⁵. Of course Winston Smith was easy pickings for the Thought Police; he yearned for humanity in a world that despised the individual. I am terrified of a world shorn of all beauty, sense, and purpose—not surprising for a Technicolour child who grew up in a monochrome world of brown-and-tan buildings, impersonal bureaucracy, uniforms and uniformity. When I see people treated as numbers, I recoil—you won’t be remunerated well in the military, but you will be well enumerated.

Imagine a boot stamping on a human face—forever.
—George Orwell, Nineteen Eighty-four

(That boot is my father’s.)

I ran away from my parents when I was twenty years old and never looked back. I knew everything was all wrong; I could never love Big Brother. I shudder to think of what might have become of me—if there’d still be a me—had I not known people who were kind enough to help me flee. I celebrate the day I left—10 October 2006—as my “observed birthday.”

I pity my parents, but I can’t forgive them, despite all the indoctrination I heard as a child. Even if the abuse were emotional only, even if my parents’ evils were limited to shouting and belittling and isolation, they were evil nonetheless. There’s always a chance that your child may be an extreme statistical outlier. Improbable is not impossible, and people like me will always break ostensibly airtight statistical models. I am a statistical outlier, so I push against the reduction of incommensurable human life to statistics and figures⁶. (The universe is a troll, though, so I ended up studying sociology and public policy. My apologies to my statistician colleagues—you do good work! Just remember that people like me exist, too.)

I make connections that others don’t, but much of what we take for granted started out as those connections. Let’s consider language. It’s all around us, so we see it like air or water. People see and hear language as marks on pages or arbitrary sounds that are mere vessels of meaning. But let’s look at that a little more: natural languages use concrete descriptions to refer to abstract phenomena. Comprehension means grasping together. Description means writing down. To discover is to remove something from its hiding place. The words idea, wit, and vision are cognate—in the Indo-European languages, sight is the primary metaphor for knowledge. I suspect that the first users of language were ideasthetes. Our languages would be very different if they weren’t.

(This is why doctrinaire descriptivism fills me with existential terror—the model seems to neglect those of us who do see, hear, and feel spelling, grammar, punctuation, and usage as sensory stimuli. What are you doing, you monsters! You’re letting people hurt my friends.⁷ I can’t abide their sanguine predictions of radical linguistic change that we can never control—or their blasé attitudes toward so many of the things I find abhorrent. But I suspect they may think the opposite about us. How dare they change the flow of language? It’s its own phenomenon, and we’re foolish to change it. Being swallowed by the indifferent crowd, being laughed at for caring about style or beauty, being told that feelings and culture don’t matter—this is nightmarish, not reasonable. It just reminds me of my parents, the military, and the hell of my childhood. Apathy is the mother of dullness, so I resist it at every opportunity.)

This is one of the most difficult things I’ve written, since I bristle at the idea of showing too much vulnerability, too much sadness, fear, and trauma. But I’ve done a lot of difficult things this year—in the past six months, I’ve left a toxic nine-year relationship, started living alone for the first time after years of sharing with housemates, and started processing more of my trauma—so why not do another difficult thing?

I see my friends’ and colleagues’ faces as I write this, and hope you’ll understand what I’m talking about, at least a little. I do this for you, and I do this for everyone like me who feels alone in an intense, chaotic, and often frightening world.

I wish I’d known someone to show me the way when I was growing up. (I think I taught myself so much because there was nobody around to teach me.) I couldn’t understand how I was making connections others couldn’t see, even though they were as real as breathing.

But all of us, whether neurotypical or neurodivergent, rely on connections—social, symbolic, physical, mental, intellectual. Some of us make those difficult connections naturally. Others have to be shown the way. But all of us can make connections, at least a little bit—because that’s what makes us human.

Really, “I” is a misnomer; I’m just using it for your convenience. (I do a lot of things for people’s convenience.) ↩
It gives me a chill up the spine, though, to think that I was on a discussion panel with her last year. Over Zoom, of course. ↩
I am an artist, but I’m just good, not great. ↩
Donald Trump would qualify. ↩
(Lois Lowry, who wrote the Giver quadrilogy, was a military brat, too; I wonder whether it had an influence on the series.) ↩
I owe an intellectual debt to the late Jacques Barzun, who deplored what he called the “Stat Life.” It’s a recurring theme throughout his œuvre. ↩
I hate their constant mutilation of all right, one of my calming phrases. I repeat it to myself, all right, all right, all right. It’s a grounding mechanism: all will right itself. Two words, not one. Alright, on the other hand, is a false sense of security, a dissociative haze, a repugnant mixture of gloppy processed cheese and rancid vegetable oil that sticks in my throat. Allright is just a car crash that I can’t stop staring at. I hate seeing words wrongly run together—alot, aswell, atleast, eachother, and the like. They’re colliding into each other! Or maybe they’re like enmeshed couples who really need to break up for their own good. ↩

Me, too.

7th April 2021 by Finn Gardiner Leave a Comment

(content warning: child abuse, incest, filicide, ableism, anti-LGBTQ discrimination)

I am almost thirty-five years old, and I am deathly terrified of my own mother.

It’s especially painful at springtime, when Autism Parents™ are praised for their sacrifices and devotion to their difficult “children with autism.” The deification of Autism Parents doesn’t just annoy me; it horrifies me. Not every parent of an autistic child is a saint—some are downright monstrous. The most obvious examples are the filicidal parents who think that it’s better to have a dead child than an autistic child.

But in many cases, we’re put in situations in which we’re still alive and wish we weren’t. That was me. My parents were not good parents—ARE not good parents. We have been estranged for almost fifteen years. I severed contact with my parents in 2006 because of their psychological abuse and knee-jerk anti-LGBTQ ideology. Growing up was often chaotic and miserable, but I dissociated it all away. I was screamed at, humiliated, degraded, alienated, ridiculed, belittled, and objectified. People who spoke to my parents told me that they talked about me as though I were an object, a piece of furniture, not a sentient human being. I was convinced that my parents were kind, loving, and thoughtful, and I was just a difficult child. After all, I was—am—autistic. It didn’t help that my parents, especially my mother, ran hot and cold, so I never knew where I stood; the ground under me was always shifting.

Recently, I figured out that the abuse I experienced went beyond the psychological. I’m scared to mention this, as though I’ll be hauled into my parents’ bedroom for questioning as I was when I lived with them.

I didn’t know that it went that far because I thought what happened was normal. In my household, children were effectively property. We were extensions of the couple, not people with rights, feelings, or opinions of our own.

So I thought showering with my mother starting at the age of nine, even when I’d showered by myself for several years, was normal.

I thought it was normal for mothers to make constant sexual jokes with their adolescent children.

I thought it was normal for mothers to comment about the smell of their teenage children’s crotches.

I thought it was normal for mothers to tell me to keep it down, or others would hear and think they were hurting me.

Mom’s M.O. was sanctimony on Sunday morning and sleaze on Sunday night.

I knew about child sexual abuse, but everything I read was about internet predators, strangers in creepy vans, and depraved coaches and uncles. I’d even heard about female perpetrators, but they were all teachers who’d assaulted their students—not mothers, and especially not long-suffering Autism Moms who had to deal with the excruciating burden of raising difficult children like me. Mothers and their children were supposed to have inviolable bonds with one another. People told me that my mother was the best friend I’d ever have.

I remember a conversation from when I was about nineteen, when Mom was worried I’d tell my friends online about my parents. She said that she was worried someone would come and kill them. My parents didn’t think words could have any lasting effect, so what was she afraid of? My mother would brag about me to her friends, but would be sure to badmouth me—in my presence, even, as though I weren’t there—to therapists and teachers. I suspect that she wanted to discredit me to any mandated reporter I might speak to. That bespeaks a guilty conscience, at least to me. If she thought she was doing everything right, there would be nothing to fear.

Even as I write this, I worry that I made it up, imagined it, just want to make excuses or something, that I somehow deserved it, that it was normal. But if I knew that this was happening to someone else, I’d get in touch with the relevant authorities. That’s how I know it’s wrong.

There was so much pressure for me to act as though my family were normal, even though I know I would have been horrified, even back then, to hear that someone else was treated the way I was. It seems obvious now—her creepy slasher-film smile, the crude jokes, the showers, the paranoia, her cold eyes—but it wasn’t back then. The abuse I went through was woven into my everyday life. I thought that all families were like this, or that I was uniquely deserving of such treatment.

This was not normal. This was not all right; this was not OK.

And most chillingly, I think she knew it; otherwise, she wouldn’t be so afraid. If she thought she was such a good parent, any accusations would just roll off. She must have known at some level that what she did was wrong.

This is part of why I am livid every time I see people glorifying Autism Parents™ without acknowledging that some don’t deserve the glory. There are a lot of good parents, but some of them are downright rotten—murderers, emotional abusers, child molesters, child batterers.

Mom, your reign of terror is over. I’ve been gone for almost fifteen years, and I haven’t regretted leaving for an instant. I’ve been homeless. I’ve been poor, isolated, unsure where the next meal is coming from or whether I’d be protected from the elements. I’m comfortable now, but even if I weren’t, I wouldn’t regret leaving, because I am no longer with you.

Everything Counts in Large Amounts (1)

23rd January 2021 by Finn Gardiner Leave a Comment

(Content warning: brief mention of the R-word)

My positions on standard English, inclusive language, and good typography stem from the same principle: consideration and empathy for readers. These principles underlie everything I do: editing my colleagues’ writing to make it more effective, writing plain-language summaries of research articles, using layout and design to reinforce ideas in people’s minds, and listening to community members to learn how they want to be described. In this two-part series, I’ll discuss why these principles matter. The first part focuses on standard English and inclusive language; the next one will focus on typography.

Standard English and the Anti-Peever Club

Informative writing intended for general audiences, such as policy briefs and newspaper articles, should be written in standard English. Although they may understand some forms of nonstandard English, people are less likely to be confused, annoyed, or distracted by standard spelling, punctuation, word choice, and grammar. Regrettably, some people—let’s call them anti-peevers—claim that that most usage recommendations are pointless. (Anti-peevers often describe themselves as “descriptivists,” but descriptive linguistics is a method, not an ideology. Anti-peeverism is assuredly ideological; it’s a form of linguistic populism, not neutral descriptivism.) These linguistic populists imply or say outright that New Yorker articles and YouTube comments about chemtrails are equally “right.”

Admittedly, many usage pundits do err by declaring certain usages objectively wrong. Some declarations are based on long-discredited “rules,” such as the injunctions against split infinitives and sentence-ending prepositions. The continued resistance to the hypothetical singular they is excessively pedantic, as is American editors’ tendency to lop the S off towards. Anti-peevers are right to spurn these “rules,” but reasonable prescriptivists reject them, too.

Some anti-peevers will go even further by using or defending nonstandard expressions like alot, alright, irregardless, I could care less, and anyways. Some disputed usages, such as the singular they, deserve to be defended, but the self-contradictory irregardless and I could care less don’t address the need for clear or inclusive language. Even the anti-peevers’ beloved alright¹ doesn’t add much clarity: all right is ambiguous regardless of its spelling. Alright and irregardless mean the same things as all right and regardless but are more likely to annoy and distract for no good reason. The singular they, on the other hand, allows for more flexible and inclusive language.

Contrarian posturing is not the same as fighting oppression. Sometimes it’s flashing a membership card: “I’m part of the Anti-Peever Club! I don’t care about good usage, and you shouldn’t, either!” At other times, it’s little more than trolling. The nonstandard forms anti-peevers defend, like anyways and I could care less, are not associated with any particular class, culture, or race; they’re slangy expressions that shouldn’t appear in writing outside dialogue or Facebook posts. (And some of them, such as alot and alright, are just misspellings that should be avoided altogether.). Defending African American Vernacular English and gender-inclusive language is laudable, but anti-peevers’ promotion of widely reviled forms is more juvenile than it is liberative. It is the verbal equivalent of teenagers deliberately choosing outfits that their parents hate: “You’re not the boss of me!” Anti-peevers use language change as a shield against criticism, but the nonstandard expressions they promote are not new. Anti-peevers from generations past have made similar arguments to their modern counterparts, often about the same words.

When anti-peevers defend such misbegotten forms as alot and alright, they insult writers’ intelligence, too: it’s no great feat to put a space between a and lot, or all and right. Although these errors are indeed common, mere frequency does not justify their use: after all, plenty of people use it’s for its. Anti-peevers also make excuses for the parlous state of writing education throughout the English-speaking world. Most people who use alot and alright don’t know any better. This isn’t their fault—it’s the fault of the education system—but mass ignorance isn’t an excuse for allowing errors and nonstandard variants to appear in edited writing apart from the creative liberties used in fiction, some forms of narrative nonfiction, and poetry. People who care—copyeditors and publishers—set the standards, not YouTube commenters, and our adherence to standard forms allows readers to focus on the message, not writers’ perceived errors. When anti-peevers invoke “common usage,” it’s important to consider whose usage they’re talking about. Are they talking about people who care about language and its use, or are they talking about people who don’t write or edit for a living and don’t particularly care? Why should we focus on those who don’t care, rather than those who do? After all, we’re the ones who will notice.

Linguistic research should be nonjudgmental, but in the real world, people do care about how others write and speak. Using nonstandard language in professional or formal settings has real-world consequences, and we all have to eat. Typos, misspellings, poorly chosen words, and punctuation errors, including disputed spellings such as miniscule for minuscule, pull readers out of your writing. It’s hard to focus when your is used for you’re, apostrophes are used to make words plural, and definitely is repeatedly spelled definately. People may know what you mean when you write apple’s for sale, but many will notice that you misused an apostrophe and take you less seriously because of it.

In “Making Peace in the Language Wars,” the lexicographer and usage pundit Bryan Garner writes: “This doctrine relieves English teachers of the responsibility to teach standard English. And it dooms us all to the dialect of the households in which we’ve grown up. One result is rigidified social strata. After all, you’re unlikely to gain any responsible position—such as that of a linguistics professor—if you can’t speak and write standard English. So much for egalitarianism.”²

Garner is right—anti-peeverism is less progressive than it is libertarian, more “I’m all right, Jack” or “I’ve got mine, screw you” than “you do you.” Most anti-peevers know the rules of standard English, even if they don’t follow many of them. It is a bitter irony that the self-proclaimed defenders of popular speech are frequently white people from upper-middle-class backgrounds who have never suffered the indignity of linguistic discrimination. In a particularly egregious example of anti-peever libertarianism, Oliver Kamm, a journalist and the Oxford-educated scion of a publishing family, wrote Accidence Will Happen, a permissive “guide” to English usage that gives the seal of approval to several nonstandard usages, including a few of my bêtes noires. Those of us who came from less exalted backgrounds may have fewer excuses to use nonstandard variants lest we be thought uneducated. I did not grow up in a professional middle-class or upper-middle-class family. I work with words and ideas; my parents and grandparents did not. Kamm, however, is happy to climb the professional ladder and pull it up behind him.

The Trouble with Noninclusive Language

Anti-peevers aren’t the only ones who disdain the importance of usage recommendations. Thoughtless prescriptivists will defend noninclusive language as ardently as anti-peevers defend I could care less and irregardless: hearing impaired, people with autism, the generic he. I use “noninclusive language” to refer to any terms that are biased against, outright offensive to, or rejected by marginalised people. To be clear, dismantling misogyny, racism, ableism, homophobia, transphobia, classism, and other kinds of discrimination does not start or end with language; nevertheless, changes in language often occur alongside changes in attitudes toward marginalised groups. Using inclusive language shows consideration for the people you describe.

Slurs are an example of noninclusive language, but less obvious examples also exist. For example, deaf people and people with hearing loss usually prefer deaf, Deaf, hard of hearing, or people with hearing loss, not hearing impaired, and many autistic people prefer autistic or person on the autism spectrum, not person with autism and person with autism spectrum disorder. Activists with intellectual disabilities and their allies have long deplored the use of retarded and mental retardation. More recently, anti-weight-bias advocates have highlighted the problems with some of the words used to describe larger people, especially one that starts with an O and rhymes with “fleece.” Although these medical terms may not be used with the same malicious intent as outright slurs, their continued use implies that the outsiders’ views take precedence over those of insiders.

Like the anti-peevers who are enamoured of irregardless and I could care less, defenders of noninclusive language care more about their agenda than they do their readers, especially if the readers belong to the groups they discuss. Like anti-peevers, defenders of noninclusive language will often cite common usage: “That’s what everybody says, anyway.” “You know what I mean!” “Who made you the Language Police?” “It’s a free country!” “But doctors use it, so it’s OK!” Again, it’s important to ask yourself, “whose common usage?” What is their agenda? How do they feel about gender, race, disability, culture, or religion? Of course people have the right to say and write whatever they want, but that doesn’t mean they should. Common usage isn’t always the best usage.

Anti-peevers who—rightly—oppose noninclusive language are less destructive than prescriptivist defenders of noninclusive language, but both groups contradict their stated ideals. Anti-peevers do recommend, and prescriptivists do explain, and sometimes their recommendations and explanations are annoying at best and outright toxic at worst.

Drop people with autism and hearing impaired, unless the person you’re writing about insists on them. Use autistic people, people on the autism spectrum, and hard of hearing: those who care will notice your consideration, and those who do not won’t see the difference anyway.

What is it with these people and misspelling all right, anyway? Their constant advocacy of alright makes me even less likely to accept it. ↩
Garner, B.A. (2016). “Making Peace in the Language Wars,” in Garner’s Modern English Usage, p. xxxvi. New York: Oxford University Press. ↩

Worst Practices: The Discrediting of Autistic Narratives through Pathologising Constructs

14th May 2018 by Finn Gardiner 1 Comment

The one positive of my neuropsychology horror story was the series of existential, epistemic and personal revelations that proceeded from it. I knew that after that experience, I had to move forward in rejecting the politics of shame and pathologisation and move towards a more holistic framework to understand myself and the way I gather and express knowledge. Since that incident, I’ve been thinking about how professionals’ ideas of autistic epistemology (people’s relationship with knowledge, how it is gathered, and the validity of that knowledge) and ontology (ideas about existence and what it represents) are rooted in the idea that marginalised people’s self-perceptions and -knowledge are intrinsically invalid because of who we are.

A few days after I received the letter from Beth Israel’s patient relations department standing by the neuropsychology department’s poor methodology, I came across some writing by the disability scholar and activist Alex Haagaard about how the voices of people with chronic illnesses are routinely discredited by doctors because these doctors have either consciously or unconsciously adopted an attitude towards marginalised people that renders their words unreliable. Their writing reminded me of some of my own ideas on how medical professionals discredit the self-perceptions of autistic people and treat us as though our self-knowledge is either non-existent or reliable; we are Hans Asperger’s ‘intelligent automata’, even if they may not directly refer to us as robots rendered in flesh in their reports. People who do not feel a fundamental tension between their self-knowledge and the ways others view them—the fraught relationship between the subjective ‘I’ and the objective ‘me’ that George Herbert Mead refers to in his work—will not appreciate the level to which this subjective/objective tension affects people’s lives. For people whose life is blissfully absent of this tension, there is a clear distinction between Normal and Abnormal, between truly human and monstrous. Furthermore, the tension that we feel is inherent to us, a flaw that must be corrected, rather than a reflection of the complex interplay between individual traits and social structures. It is a form of victim-blaming applied to people who find themselves on the wrong end of a power differential; if you’re not powerful enough to matter, your problems are your fault. You are the problem. (Incidentally, this is why I am generally indisposed to refer to neurodivergent experiences as being disorders instead of disabilities except in specific circumstances; being disordered implies that the problem inheres within the individual and exists separate from a broader context, whereas disability implies a more complex state of affairs in which people experience both internal disabling experiences and social disablement. It’s even worse in languages like German, in which disorder is translated as Störung, or disturbance.)

When your clinical standpoint requires that ‘disordered’ people must be discredited, then it is far too easy to reject or distort patients’ experiences. After all, our existence is a flaw in the human design. Anything we produce must be flawed by extension. This is magnified if autistic people also experience intersecting forms of marginalisation, like misogyny, racism, homophobia, transphobia or classism. The discrediting experiences that women, people of colour, low- and moderate-income people, and LGBTQ people encounter reinforce and magnify the disablism we face. People like me cannot be reliable narrators under this framework. The idea, for example, of a black, queer, disabled person being intelligent enough to question the underestimation of their intelligence and to question the idea that the methodology used to evaluate me would accurately describe my cognition, is unfathomable. Recognising that a black, autistic man was capable of being empathic would destroy the very foundations upon which his faulty framework of autism was based. After all, aren’t black men all brutes and autistic people unfeeling robots? Had I come into that office with the same level of education – at the time I was a semester away from finishing my master’s degree and had mentioned being interested in doing a doctoral dissertation – and work experience as a white, non-disabled man with unconditional male privilege, I doubt I would have received the same treatment.

This neuropsychologist had a clear ontological framework of Being Autistic: restricted interests, poor social skills, unable to have legitimate insights into one’s own intellect, knowledge-gathering processes, or background. This pattern of traits was his foundational definition of being autistic within the world. I suspect that he had an absolute, reified version of autism in which it exists as a solid entity with clear boundaries, rather than a socially constructed phenomenon or set of phenomena that is defined primarily for its utility, not its concrete existence.

While I refer specifically to a professional who was immured in a particular kind of thinking and applied it to me, this is certainly not limited to him. It’s the entire foundation of how autism is viewed within traditional medicalised practice. Please note that I’m not a strict adherent of either the social or medical model; rather, I view disability as a combination of social and medical factors. I admit that I am more hostile towards the strictly medical model than I am the strictly social model; I find the former profoundly dehumanising and Othering in ways I do not see the latter. I am generally opposed to models that view people as entities entirely deracinated from the social and cultural contexts in which they live, work and learn.

This systemic devaluation of autistic self-knowledge and existence has real, palpable effects: self-hatred, depression, anxiety, free-floating existential angst. They lead to a construction of an oppositional self-concept that internalises those messages. Whenever I think about my experience with this doctor and and other ‘experts’ like him, I fall into spirals of self-doubt, wondering if my perceptions can be trusted or if my memories are real. I start tearing myself apart, constantly trying to psychoanalyse myself in an effort to find out why I view myself the way I do. I feel a nasty chill running up my spine and a metallic tang in my mouth. I can feel my thoughts starting to scramble and introjected voices taunting me and trying to discourage me from scholarship and intellectual inquiry. I’ve had lifelong mental health struggles because of this kind of devaluation. I know I’m mostly talking about it from a theoretical standpoint here, but it goes beyond that. Remember that even the most abstruse academic theories about identity and selfhood attempt to address internal experiences and social structures that can and do affect real people.

If this happened to me, somebody who does have educational privilege and can engage critically with academic literature, imagine what might happen to someone else who doesn’t have those external markers of credibility.

A Neuropsychology Horror Story

13th May 2018 by Finn Gardiner 3 Comments

(content warning: disablism, possible racism)

If you are in the Greater Boston area and are trying to get a neuropsychological evaluation, do not go to Dr Tyler Zink at Beth Israel if you can possibly avoid it. I had a horrible experience with him in late 2017. My psychiatrist referred me to Beth Israel’s neuropsychology department to look into some attention-span and executive-functioning issues I’d been struggling with. I don’t typically engage in callout posts or name-and-shame campaigns, but this experience was bad enough that I feel the need to warn the community about Dr Zink as a public service.

During the October 2017 intake appointment, Dr Zink repeatedly tried to elicit stereotypically autistic answers out of me. He was priming me to give him the right answers. For example, when I was talking to him about my interests, he seemed to be trying to push me into saying I had restricted interests when I had told him I had a broad range of topics I found fascinating. I clarified this by saying that I was interested in particular sub-topics within those disciplines. If I were in an environment in which I felt I could be autistic and have multiple interests, I wouldn’t have responded that way. It was clear that he had a specific model of what an autistic person looked like in his head, and he was determined to fit me into it regardless of what I actually told him.

A graduate student, Melanie (I don’t think I got her surname) actually administered the tests in November 2017, though Dr Zink was responsible for choosing the set of tests she used to examine me. Part of the diagnostic battery for autism he used included questionnaires by Simon Baron-Cohen, he of the ‘empathising and systemising’ and ‘extreme male brain’ hypotheses. I felt as though, yet again, I were being primed to give autistic-sounding answers. In this case, I was filling them in silently, but the nature of the environment seemed to have that effect on me.

I received my final report in December 2017. Some of it was helpful, like its identification of my fine-motor and executive-functioning difficulties. These brief moments of lucidity were marred by stereotyping and mechanistic approaches to the interpretation of my results. The two particular conclusions I took the most issue with involved intelligence and empathy.

Dr Zink tried to tell my intellectual functioning was between ‘high average and superior’ (roughly IQ 115-120, I think). I was horrified, because being within that range would represent a twenty- to thirty-point decline in intellectual functioning compared to the Wechsler tests I had to take to receive special-education services. (Never mind the fact that ‘superior’ just reeks of eugenics; some practitioners are shifting towards ‘advanced’, but he didn’t get that memo.) I remember seeing one of my IQ scores, and was told about others later on. He was trying to butter me up, telling me that I was ‘so smart’ and was in the ‘top 10%’. I scored in the 99th percentile in the past. For example, when I was 11, I qualified for gifted education in a district that had a strict IQ cutoff of 130. I was identified as gifted extremely early. I told him I’d scored higher when I was younger, and he said that ‘things may have changed from when you were a kiddo’, and proceeded to mansplain to me about how he took into account age and other factors. Yes, he said ‘kiddo’. I’m 31 years old, for god’s sake. He implied that I should be totally fine with a twenty- to thirty-point decline in intellectual functioning. Also, I know damn well that modern IQ tests are based on rankings within a given age band. A twenty- to thirty-point drop is severe, though. This is like telling someone who earned an IQ score of 100 – average intelligence – at the beginning of secondary school that it’s acceptable for them to now have scores that reflect a mild intellectual disability or borderline intellectual disability. Also, why are we talking about ‘premorbid intellectual functioning’ when I’m being assessed for lifelong conditions? It turns out that he derived this IQ range from a quick-and-dirty IQ test called the Wechsler Test of Adult Reading, or WTAR. It can’t even get you a score of 120, but he didn’t tell me that. He just ‘splained to me and gave me false reassurance. Nor did he explain the other limitations of the testing. I was supposed to just accept what he said as given. Of course, I think there are flaws with intelligence testing and don’t think that IQ tests always work well in neurodivergent people in the first place. But his dismissal was ridiculous and not in keeping with researchers’ findings on the consistency of intelligence-test scores throughout the lifespan. Intelligence tests can be compared across different life stages; a British/Australian longitudinal study by Howlin et al (2013) compared autistic people’s childhood Wechsler Intelligence Scale for Children (WISC) scores with Wechsler Adult Intelligence Scale (WAIS) tests. Most of the studies I’ve seen about changes in IQ scores in autistic people across the lifespan involve increases, not decreases. Of course, there are exceptions, but when there are exceptions, then clinicians should understand their patients’ concerns. I suspect that his dismissiveness may have stemmed from unconscious racism and disablism. Who am I, a Black disabled person, to question his judgement of my intelligence? I imagine that if I were white, he would have been more receptive to the idea that either his testing methodology was questionable or that I had experienced a decline that merited addressing. Intelligence tests are ostensibly objective, but examiners have an incredible amount of leeway in interpreting those tests. He chose to believe I was of slightly above-average intelligence; if I hadn’t told him I was a grad student, I suspect he may have claimed that I was of average or below-average intelligence. These complaints aren’t a means for me to go, ‘why, look how intelligent I am!’ as much as they are to point out exactly how dismissive and condescending Dr Zink was.

To add insult to injury, the report also claimed that I had ‘reduced empathy’, based on the ridiculous Simon Baron-Cohen questionnaires I took during the evaluation. I didn’t internalise it as badly as I did the intelligence assessment, but I felt that it was distorted and not in keeping with who I actually am as a person. I actually do feel empathy very strongly, but I sometimes have a harder time expressing it. Honestly, I lean more towards the ‘intense world’ interpretation of autism, in which I feel so overwhelmed by stimuli that I have to shut down or disengage to protect myself from dealing with all the intensity. It’s not a matter of ‘reduced empathy’. Baron-Cohen, and by extension Dr Zink, have conflated a superficial external expression with an internal reality; it’s like the difference between an extension and an intension in the philosophy of mind. To see the complexity of one’s thinking collapsed into horrific, dehumanising stereotypes is a painful experience I wouldn’t wish on anyone. This was a common theme throughout my interactions with Dr Zink and within the report: a routine tendency to flatten, minimise and pathologise.

The report contained blatant errors and distortions of things I had told both Dr Zink and Melanie. The clinical recommendations also seemed to be based on stereotypes, rather than anything I had actually talked about having trouble with in my intake. Dr Zink suggested joining local social skills groups run by the Autism Asperger Network. I do not need social skills groups. When I showed my therapist the report, she thought that suggestion was ridiculous. I have a decent network of local friends that I’ve met through various sources. When I do attend groups facilitated by non-autistic people for autistic people, I tend to feel out of place. I’ve never attended any AANE groups, but I did go to some similar groups back in San Francisco and didn’t get much out of them. Dr Zink was operating on the premise that autism is primarily a disability affecting social skills when my primary complaints were about executive functioning. I left him a phone message to see if I could talk to him further about my report, but he never returned my call. Clearly he expected me to get my report and get on with my life and not question it. He was so enamoured of the idea of my being limited that he didn’t recognise his own limitations.

What happened was not a case of what the intelligence researcher Alan Kaufman calls ‘intelligent testing’, in which clinical judgement takes precedence over mechanistically interpreting scores. This was thoughtless testing that didn’t take into account qualitative factors, self-reported case histories, or any other factors that might have affected my outcomes.

The worst part about the experience was how it warped my sense of self and reality. I wondered whether I had made up or imagined all my memories. I even wondered if I actually existed at some of my worst points after receiving the report. It also dredged up a number of childhood triggers that had lain dormant for years. It took me several months to recover from this experience. You’d think I’d have decent defences against this sort of thing, but it’s difficult when a supposed expert is telling me things about myself that don’t match my internal experiences or what people have said about me. It bordered on gaslighting, though I don’t think it was a deliberate attempt to fuck with my sense of reality. Rather, I think it was Dr Zink’s rigid adherence to stereotypes and his mechanistic interpretation of my results that caused him to treat me the way he did. I understand why he did it, but that doesn’t excuse his behaviour or his methodology. Nor does this mean that I have to forgive him. His intransigence and refusal to recognise that there may be flaws or exceptions to his methodology make me worry that he will continue to upset and traumatise autistic and other neurodivergent patients who come in to be evaluated.

After a few days of fighting off depression, I went through the report again to see the sources for his ‘intellectual functioning’ claims, since I’d only read it cursorily beforehand. I knew he hadn’t given me the full WAIS, only a few subtests from which a clinician can’t derive a full-scale IQ, so there was no way he could have derived a score from it. The WTAR on its own can only produce scores between 70 and 119, meaning that it may underestimate the abilities of people who historically scored higher on IQ tests (Macniven, 2016). The test designers themselves indicate that it was designed to measure people’s intellectual ability before an acquired condition like a traumatic brain injury, dementia, Alzheimer’s or Parkinson’s. My reason for seeing Dr Zink had nothing to do with acquired conditions. Yesterday, I also found out that not only was this test inappropriate for what I was being examined for, it had also been discontinued nine years ago. The WTAR is no longer available for sale on Pearson’s website; the Test of Premorbid Functioning (TOPF) is the current version of the test. The TOPF was released in 2009. Considering that Dr Zink only started practising in 2013, there’s no excuse for his using such an old test.

In January 2018, I wrote a lengthy negative review on Yelp about my experience with Dr Zink. I focussed specifically on the intelligence issue because I had more concrete evidence that the methodology was questionable; I reasoned that it would be more difficult to argue my case about the SBC questionnaires. A patient relations representative contacted me about it a few months later. I called their hotline and they passed along my complaint to the neuropsychology department. I received a letter yesterday afternoon from a different patient relations representative, telling me that Dr Zink was a board-certified clinical neuropsychologist with extensive experience working with people with neurodevelopmental disabilities. There was no admission of wrongdoing whatsoever; all they did was reiterate that he was The Expert. Keep in mind that I didn’t question his credentials. I questioned his methodology. When I wrote my Yelp review, I specifically said that he was the wrong clinician for me, not that he was a bad clinician generally. I called the patient relations rep who wrote to me and she reiterated what the department told her, said she didn’t have any expertise to evaluate what I said, and said that the department ‘respectfully disagreed’ with me. They completely dismissed the fact that I based my conclusions on research on books from reputable academic publishers and peer-reviewed scholarly articles. She gave me the impression that her hands were tied. I don’t think, though, that the department’s judgement was respectful. I think it was degrading and invalidating. If what they said were true, my life would make no sense. There would be no explanation for some of the things I can do and have done. Qualitatively it doesn’t fit. It doesn’t fit previous quantitative assessments, either.

Because of this experience, I never want to have one of these evaluations ever again. One of my favourite quotes – a line from Tony Kushner’s Angels in America – comes to mind: ‘That it should be the questions and shape of a life, its total complexity gathered, arranged, and considered, which matters in the end, not some stamp of salvation or damnation that disperses all the complexity into some unsatisfying little decision.’

Again, if you are autistic, wonder if you’re autistic or are otherwise neurodivergent, I would strongly recommend against seeing Dr Zink or any other clinician who thinks similarly about autistic people. The damage has already been done with me, but I don’t want to see other people go through what I’ve gone through with him. The one positive thing I can say about this nightmarish experience is that I used the existential crisis I went through to help rebuild my self-concept and reject useless and facile interpretations of who I am and how I learn. Fortunately, neither my therapist nor my psychiatrist, both of whom have been working with me for the past two years, agreed with the worst aspects of this report.

References

Howlin et al (2014). Cognitive and language skills in adults with autism: a 40-year follow-up. Journal of Child Psychology and Psychiatry, 55:1, pp 49–58.

Macniven, J (2016). Neuropsychological Formulation: A Clinical Casebook. Berlin, Germany: Springer.

Moisse, K (13 May 2017). Many children with autism get significantly smarter over time. Spectrum News. Retrieved from https://www.spectrumnews.org/news/many-children-autism-get-significantly-smarter-time/