Multifarious Threads

Autism

Everything Counts in Large Amounts (1)

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

A graphic saying, “Everything Counts in Large Amounts: Why Good Usage, Inclusive Language, and Typography Matter.”

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.

  1. What is it with these people and misspelling all right, anyway? Their constant advocacy of alright makes me even less likely to accept it. ↩
  2. 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

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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

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(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/

Communication and echolalia! (Echolalia? Echolalia!)

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This is part of a series of posts for Autism Acceptance Month! Throughout April, I’ll be talking about experiential, theoretical and cultural aspects of being autistic, drawn from my own experiences and research I’ve done on autistic people’s cognition, identity formation and methods of interacting with the world. This post is about echolalia, a form of communication or self-calming behaviour that involves repeating words or phrases that’s common amongst some autistic people, including me. 

Like a lot of other autistic folks, I’m echolalic. I’ll repeat things I’ve heard before as a form of emotional regulation, humour and stock communication. Specifically, I have delayed echolalia, in which I repeat things I’ve heard or read in the past, like advertising jingles, amusing or ridiculous quotes, slogans from commercials, and random words I like the sound of. (Fake news! False and fake. Millionaires and billionaires. The doors are closing. Please stand clear of the doors. Red line, commuter rail and bus connection.) If I’m talking to other people, the delayed echolalia will mostly present itself as imitations of political figures or other people recognisable to my interlocutors. Even though echolalia is a classically autistic trait, it’s still affected by social context. If I’m using echolalia while I’m alone to calm or amuse myself, the pool from which I draw phrases is rather wider. I also have a set of stock phrases to make small talk without really thinking about the content of the conversation. That latter kind of echolalia is more tiring to use because I prefer to use low-content communication for humour and relaxation, not as a substitute for high-content communication, but I understand how important small talk is as a form of social grooming.

I also have a distinction between high- and low-content verbal expression, and there seems to be a major distinction between the two modes. Low-content echolalic speech and writing don’t look the same qualitatively as high-content speech and writing for me. I know that other people may have different experiences in which echolalic communication can also look like high-content speech or writing. For example, this post is a form of high-content communication. If I’m serious, it’s highly unlikely that I’m using echolalia to communicate with you. 

There’s also a kind of low-content communication I’ll produce when I’m being backed into a corner by somebody who’s stressing me out, but that’s usually more like a meltdown. In these cases, I’m using language – usually in the form of repeated supplication and apologies – as a way to try to get the threatening person to back off. This kind of communication is more connected-sounding than my echolalic speech, but it’s different from high-content speech in that I don’t have the same level of conscious control over it. The goal is to use just enough communication to make the other person to stop badgering me. This happened to me frequently with my parents, who were the kinds of people who liked to bombard me with shouted questions and criticism when they were upset with me. They’d overload me to the point that I’d start saying things I didn’t have time to consider because I just wanted them to back off and let me process. If they kept pushing I’d start stuttering and having difficulty even producing that kind of communication. 

When I’m emotionally overloaded, either for good or for ill, I can usually still think in high-content phrases, but have a more difficult time producing them in real-time conversation. While I can usually do well enough to handle shorter conversations, it’s still more difficult for me to continue the conversation for very long because of the amount of mental effort I have to expend. Conversely, it’s much easier for me to produce low-content speech. I can force myself to use high-content speech in moments like this, but I can feel a sort of internal friction when I do it and become more exhausted than if I’d just withdrawn from the social situation in the first place. During these periods I frequently withdraw from other people if I can and just keep to myself until I’m able to communicate again. 

Troubling disability activism patterns.

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A colourful mural depicting stylised people, with the text EQUAL.

(Photo by Oliver Cole @ Unsplash)

I’ve noticed some troubling patterns amongst disability activists that have caused me to feel frustrated and alienated. Even though I may agree with these people conceptually—we all agree, for example, that disabled people deserve human rights and respect precisely because we are people—the approaches some people use feel needlessly reductionistic for me. I don’t mean to say that their approaches don’t have merit or that there hasn’t been significant thought put into their efforts, but that I find that they obscure the complexity of people’s individual and collective experiences. I’ll focus on two phenomena I’ve noticed: the fixation on lists of words as a way to combat disablism, and the idea that even discussing the ways in which people learn is a disablist concept.

The language fixation
I’m uncomfortable with the fixation on reforming language to the exclusion of other methods of activism as an effort to help dismantle disablist mindsets. Of course, I’m not saying that people should use cruel names to refer to disabled people. What I am saying, though, is that some people who tend not to think verbally or who have language-related disabilities may not be able to memorise the long lists of Words Not To Use that circulate on Tumblr, Twitter, Facebook and other social media sites. What I care about is people’s underlying attitudes towards disabled people, more so than I do the specific words they use. When people use metaphorical language, their brains may not process it in the same way they may an overtly cruel word directed at a disabled person. For example, There are also different historical contexts attached to words, but I don’t see that context discussed very often; everything is treated as equally offensive. For example, ‘r*tard’, ‘idiot’, ‘moron’ and ‘imbecile’ were formerly used as diagnostic categories, often connected with the institutionalisation and social exclusion of people with intellectual disability diagnoses. ‘Stupid’, on the other hand, was never a diagnostic category. Of course, it’s insulting to call someone stupid, but it doesn’t come with the same cultural baggage that the aforementioned ‘r*tard’, ‘idiot’, ‘moron’ and ‘imbecile’ have. The same goes for the -phobia ending; while phobia is now a diagnostic term, it’s also had a less specific, non-clinical meaning for years to refer to extreme fear or hatred. I have had disabled friends ostracised from groups that ostensibly exist to support people, but zero in on language to the exclusion of actually offering support.

I understand, on the other hand, that many autistic people and people with similar disabilities tend to use and interpret language literally: what they hear is what they see, and it is difficult for them to associate a meaning with multiple contexts. I am not one of those people; while I can often have a literal visualisation of a word in my head, I tend to see words in a holistic way that combines literal and figurative meanings, translations, shades of meaning, subtleties and historical contexts. I actually have a hard time with overly simplistic, decontextualised explanations and will start tuning out or growing frustrated if people do that with me. That’s been the case since I was very young. I don’t just see a thing; I see the processes, ideas, concepts, history and relationships connected with that thing. I have a hard time understanding overly concrete thinking. I think this issue is complex and can’t be collapsed into a list of dos and don’ts. If you have a hard time juggling multiple meanings of words and have an easy time with rote memorisation, then those ‘ableist word profiles’ may work on you. For me, things intrinsically have multiple meanings. I’m also very poor at directed rote memorisation, even though my long-term memory is excellent. This isn’t a universal approach, though, and people should recognise that when constructing these profiles.

Learning ability: throwing the baby out with the bathwater
I’ve seen some disability activists claim that the concept of intelligence – meant here to refer to differences in the ability to learn, recognise patterns and interact with with information, and the neurological differences that are associated with these differences – is disablist in and of itself. I disagree with this idea, but I understand why people may say things like this: they may know about the sordid history of IQ testing to determine people’s right to live within the community and to raise a family, or racist interpretations of the achievement gap that insinuate or claim baldly that black and brown people are inherently less intelligent than white people, or other ways in which hateful people have misused the concept of learning differences to marginalise, abuse and punish. Some advocates for gifted education have expressed disablist or elitist attitudes towards people with more typical learning ability or people with intellectual disabilities, too. I’ve also seen non-disabled people use the intelligence of some disabled people as a bludgeon: ‘if you’re so smart, you should be able to manage a bank account / work a 9-5 job / clean your house every Saturday / make meals’. Sometimes this is even an institutional requirement; some developmental disability organisations and government agencies will only serve people with an IQ below 70, even though developmental disability encompasses other conditions besides intellectual disability. The assumption is that disabled people of average or above-average intelligence can fend for ourselves without help. Of course, things aren’t so simple; there are many disabled people who learn with great facility but have a hard time with certain activities of daily living. These things are not mutually exclusive and can coexist in the same person. I get why people say things like ‘intelligence is a disablist concept’, even if I think that that conclusion is too reductionistic and flattens the complexity of people’s internal experiences and the outward expression of those experiences.

Unfortunately, I’ve noticed some patterns amongst the people who make ‘intelligence doesn’t exist at all’ or ‘the concept of intelligence is intrinsically disablist’ claims that make me uncomfortable. Nearly all the people making these claims would be considered reasonably intelligent themselves. More specifically, it’s a kind of intelligence that allows them to do well in school and doesn’t isolate them from other people because of their divergent thinking. Things come to them easily and they are easily understood. They may be intelligent, but they’re not monsters. Some of the emotional abuse I endured growing up was for my kind of intelligence. I was treated like a monster when I wasn’t being treated like an invalid for being autistic. I generally passed most of my classes as a kid, but didn’t feel fully invested in most of them because I didn’t have the opportunity to really challenge myself intellectually in most of them. I scared my parents, who tried to suppress my curiosity by restricting what I was allowed to read. They also dismissed me when I tried to communicate with them in a more conceptual or abstract way; they’d often look at me as though I’d grown two heads or accuse me of being evasive or using ‘psychobabble’ or ‘woe-is-me stuff’ if I tried to give them nuanced explanations of my behaviour. They tended to perceive things very concretely and literally, at least relative to me. I know the common stereotype is that non-autistic people are conceptual, while autistic people are literal and concrete, but I don’t think that’s true.

I thought I was crazy for years until I read more about how different kinds of learning ability can affect people’s cognition and perception. I thought it was an autistic trait until I encountered autistic people, both in person and online, who thought more concretely and focussed primarily on immediately observable phenomena rather than their underlying complexity. For a few years, though, I actually internalised the idea that intelligence was a disablist concept and started wondering what the hell was wrong with me again. I attributed everything to my being autistic again even though I knew autistic people who didn’t see things the same way I did. To claim that these things don’t exist, or that they can be subsumed under another label that doesn’t necessarily come with those traits (for example, autism), feels like a form of gaslighting. I certainly felt different for being autistic, too, but these phenomena were separate from my being autistic. If intelligence is an unalloyed good in your life, it’s easy to see it as a privilege. If it’s something that isolates you from your own family, makes you grow bored and disenchanted with formal education until you start using it instrumentally as an adult, see things that other people can’t, and makes you doubt your perceptions because you confuse people, it is not the same thing. The idea of intelligence as an absolute privilege is wholly alien to me.

I’ve also noticed that the vast majority of these people are also white or East Asian. Neither white people nor East Asians are routinely associated with low intelligence in the same way that black, Latino or various indigenous groups of people are. This isn’t to say that East Asians don’t experience discrimination or oppression. They certainly do experience racism, but this is not a stereotype typically applied to them. As a black person, I’ve definitely seen people of my race routinely treated as stupid or incompetent just because of the colour of our skin. Entire books like The Bell Curve have been published to disparage us and our abilities. There’s a cottage industry of ‘researchers’ receiving money from the Pioneer Fund to ‘prove’ that we’re less intelligent than white people.

Of course, these anecdotal observations aren’t a universal statement; I’m uncomfortable saying that an attribute applies to the totality of a population for a number of reasons. It’s just a pattern that I’ve repeatedly noticed and that I find frustrating and deeply alienating.

If differences in learning ability did not exist, then we would not recognise the existence of intellectual disability and offer support for people who struggle with learning. I think that it’s possible to recognise that people’s ability to learn and interact with their environment can vary without attaching value judgements to people, institutionalising people, bringing down racist or misogynistic pronouncements, or treating IQ test scores as perfect reflections of people’s intellectual ability. We can use a more nuanced interpretation of intelligence and what it is without engaging in IQ fundamentalism or other forms of intellectual disablism.