Dear A. Elizabeth Washington,





I’m autistic. I won’t tell you which ‘end’ of the spectrum I’m on, nor could I, because the notion of a linear spectrum with two ends – very autistic on one end and merely quirky on the other – is a myth. Conditions that exist on a spectrum, such as Autism Spectrum Disorder, and Fetal Alcohol Spectrum Disorder, are so called because of the wide variety of ways in which symptoms manifest. Autistic people have varying degrees of abilities or deficits in different areas such as information processing, motor control, or speech, and those varying factors place them on different spots on this multifaceted, and decidedly nonlinear, spectrum.





I will tell you that, for the last two decades, since I was diagnosed with autism at the age of nine, I have been labelled high-functioning: by the doctor who diagnosed me, by my parents, by my teachers, by my friends, and most irritatingly, by complete strangers – the vast majority of whom are not autistic – looking to invalidate my opinions on autism, disability, education, and related issues.





What so consistently amazes me is how little people need to know about me before they jump to the conclusion that I am high-functioning. It seems that for some, the very ability to type a coherent paragraph on the Internet is enough to determine my level of functioning – as though no one labelled low-functioning is capable of such a feat.





I get it, though. I understand why people feel that label applies to me, and to people like me. I’m intelligent and articulate. My stims, at least the ones that I deploy around other people, are not too conspicuous. I can force myself to make eye contact if I really try. I can use the bathroom without assistance. I’m working on my second bachelors degree. I play the piano quite well; I even teach piano, and it may not surprise you to learn that most of my students are autistic too.





But that label, high functioning, would have you thinking that I’m just a quirky guy, that I face no autism-related struggles, and that the statistics and diagnostic criteria you leveraged in your tragic depiction of life with autism do not apply to me. You’d be wrong.





Some of my stims are self-injurious: hand-biting, head-hitting, eyelash pulling, among many others. I have experienced tonnes of gastrointestinal problems – though I will keep those details confidential, unlike so many parents of autistic children who feel it appropriate to publicly discuss their children’s bowel issues without consulting them.





I cannot look someone in the eye and focus on what they’re saying at the same time. I have little to no inherent understanding of the give-and-take involved in socializing – for others, conversations with me can feel more like monologues or lectures.





I have trouble with emotional recognition (see also: alexithymia) and regulation, though the latter has gotten better through the years, the former has not.





I didn’t learn to tie my shoes until I was a teenager.





I have never held onto a full-time job for more than three months; I wonder whether I’ll ever move out of my parents’ house and attain financial independence. I also wonder whether living alone would even be a good idea, as I often can’t remember to brush my teeth, or bathe, or eat.



I can’t remember a time when I wasn’t a target for bullies: in childhood, I was mocked, ostracized, assaulted, and threatened. In adulthood, the victimization became subtler, but did not stop. These experiences have wreaked havoc on my mental well-being. I have never been comfortable in my own skin. I have never looked in the mirror and been happy with what I saw. I have spent countless hours on Google, trying (unsuccessfully) to learn from YouTube videos and WikiHow articles how to be ‘normal’.





Though I have made no attempts, I have experienced my fair share of suicidal ideation – the primary barrier to action being a persistent and pervasive fear of oblivion.





My interests are, indeed, repetitive. I often find it difficult to find common ground with other people, because my interests, while deep, are not many, and can be perceived as esoteric. I like pedagogical theory and educational policy. I like disability advocacy. I like music theory. I like little else. I sometimes go down a Wikipedia rabbit hole on some other subject, but I always return to those three.





My behaviours, too, are repetitive. In addition to the stims referenced above, I love to arrange things by colour, type, or size, and will compulsively do so when the opportunity presents itself – often to the chagrin of members of the self-appointed Social Norms Police, including a waitress who thought it was funny to bring me a bucket of Legos after seeing me organize and stack a bunch of milk and cream containers.





Your inference that when we celebrate autism, we are celebrating people who are not disabled but merely quirky, and your pitting of autistics we can celebrate (who are apparently ‘quirky’ and undiagnosable) against autistics we can’t celebrate (who are severely disabled) is, to put it kindly, flawed. My formally-diagnosed-autistic self is not quirky, not a genius, and not gainfully employed in Silicon Valley or elsewhere. I am just a guy with a developmental disability. I can’t and won’t pretend that being autistic these last three decades has been easy. It hasn’t.





But still, I celebrate.





Indeed, many of the issues you raised – self-injurious stims, incontinence, comorbid medical problems like epilepsy and GI issues – ably refute the claim that being autistic is easy, or that everyone’s experience of autism is the same. But who is claiming that? Why should we have to pretend that being autistic is a walk in the park before we can celebrate ourselves?





Many of the other issues you cited do a good job of demonstrating not how hard autism is, but how poorly autistic people are treated. Autistic people are targets for bullies in school and beyond, yes, and I don’t wish to celebrate that. Autistic people are significantly more likely to be victims of sexual abuse than our typically developing peers, yes, and I don’t wish to celebrate that either. Nor do I wish to celebrate the alarming rates of unemployment among autistic adults, or the frighteningly high rates of anxiety, depression, and suicidality.





But can we probe a little bit further? Yes, autistic people are too often depressed and suicidal. But why? It would be disingenuous to pretend that this correlation means that suicidality is an inherent part of the developmental trajectory for autistics, independent of environmental and social factors.





Existing research, in combination with the bullying example that you cited, reflects the inherent bias neurotypicals hold against us as autistic people – not just for our aberrant behaviours, but for things as basic as the way we move, and, bafflingly, the way we look.1 What does it mean to look autistic? I don’t know, but neurotypicals don’t like it.





It’s hard to grow up knowing that everyone hates you. It doesn’t help to be bombarded with advertising campaigns from Autism Speaks and other similar organizations, that paint us as burdens, as tragic, as broken, as genetic mistakes.





While it’s certainly not fun to be hated, discriminated against, and abused, as too many autistic kids and adults are, I hardly think it’s fair to blame autistics’ neurology for the ableism, ignorance, and lack of compassion showed by the neurotypicals who surround them.





I will agree with you that it’s not worth celebrating that shocking numbers of autistic people are suicidal - but should those statistics be surprising when we are so consistently treated this way? Autism doesn’t cause suicidal thoughts. Mass abuse of autistic people, on the other hand, just might. That’s why, instead of fearmongering about autism, instead of amplifying the already loud voices out there that talk about how hard it is to be autistic, and how hard it is to have an autistic child, I choose to advocate for a world in which we treat autistic people better, in which accessibility and acceptance, not compliance training and abusive ‘cures’, are the priority.





The diagnostic criteria for autism do indeed look grim. “Restricted, repetitive patterns of behaviour, interests, or activities” sounds really scary, if you don’t know what it actually entails. But all it means is that autistic people stim (repetitive behaviours) and autistic people have special interests (repetitive interests). Let’s take a look at each of those on its own.





Stimming – repetitive, self stimulatory behaviours – means many things. Stims range from the socially acceptable (such as knee bouncing) to the eyebrow-raising (such as rocking back and forth) to the apparently disruptive (such as screeching) to the self-injurious (such as, as you so poignantly trotted out, head banging). Why do we stim? There are a few reasons, but I’d put them into three main categories: 1) we’re responding to sensory stimuli (too much or too little sensory input), 2) we’re expressing our emotions (anxious rocking, happy flapping, etc.), 3) we’re doing it for fun (rubbing your hands together for minutes at a time can actually be really enjoyable once you get into it). Are some stims bad or dangerous? Absolutely. Is stimming inherently a bad thing? No.





Special interests – repetitive, restricted topics of interest – are often characterized by parents, medical professionals, and other non-autistic people as unhealthy obsessions. To us, though, they’re just…interests. We’re interested in something, and we will go to unusual lengths to acquire as much information as possible on that thing. In academia, we’d call that dedicated research, but when talking about an autistic person, it has to be pathologized, and characterized as something sinister, something dangerous. Why? Why can’t we just have interests that are narrow, but deep? Indeed, as you say, special talents are not a part of the diagnostic criteria for autism, but it’s specifically because of my narrow, repetitive, patterns of interest that I am good at the things I am good at. The same is true for many autistic people.





“Deficits […] in the areas of social communication and social interaction”, likewise, sounds scary. But recent research has pointed to something many autistics already knew: that the social communication issues that exist between autistic and non-autistic people are a two-way street, not a one-way street.2, 3 In other words, it’s not just that we don’t know how to communicate with you; it’s also that you don’t know how to communicate with us.





Try, for a minute, to look at autism through the lens of the social model of disability. Consider that, perhaps, it’s not our style of communication and interaction that disables us, but it’s the society in which our way of being is perceived as abhorrent. Perhaps what we need is a more accessible society, one in which autistic people – including those who require high levels of support for daily living – are accepted and accommodated.





Autism is a pervasive condition. Pervasive, meaning it affects the whole person. Autism is not a virus that gloms onto some parts of our brain, infecting and impairing an otherwise normal person. Autism is a description of how we developed. An autistic person is fully autistic and will be autistic forever. Everything about them is autistic; not just the parts that are corroborated by diagnostic criteria, but everything.





I do not celebrate my inability to consistently feed myself. But I do celebrate my unusual capacity for focusing on small details – a trait which makes me a good musician, a good student, and a good gift-giver. I do not celebrate my self-injurious stims. But I do celebrate my innocuous ones – I like making the pterodactyl screech, even though people stare. I do not celebrate the fact that I can’t make eye contact well enough to succeed in a job interview. But I do celebrate the fact that I can make conversation without needing to stare at someone’s eyeballs. I do not celebrate the fact that I was viciously bullied throughout elementary, middle, and high school. But I do celebrate the fact that I’m infinitely more gentle, compassionate, and interesting than any of my bullies will ever be. I do not celebrate my deficits in auditory processing that make taking notes in class nearly impossible. But I do celebrate that my experiences as a special needs student motivate me to teach special needs kids today the self-advocacy skills that I so sorely lacked when I was their age.





And while I do not celebrate those aforementioned struggles, I do celebrate the autistic community; I celebrate that autistic people who experience similar challenges are willing to help and support each other. I celebrate the subcultures that have grown around such communities of autistics.





As autistic people, we live in a culture in which we are taught, over and over again, that our existence is tragic, and that we should mourn it. Some of us choose to reject that narrative, and to defiantly celebrate, to love our autistic selves. For some of us, it’s a personal decision. For others, it’s a political one. In every case, it’s our prerogative, as autistic people, to embrace or reject this paradigm, and frankly, it is not up to non-autistic people to tell us how we should feel about it.



Sincerely,



RB

Sasson, Noah J., Daniel J. Faso, Jack Nugent, Sarah Lovell, Daniel P. Kennedy, and Ruth B. Grossman. “Neurotypical Peers Are Less Willing to Interact with Those with Autism Based on Thin Slice Judgments." Scientific Reports 7 (2017): 40700.

Edey, Rosanna, Jennifer Cook, Rebecca Brewer, Mark H. Johnson, Geoffrey Bird, and Clare Press. "Interaction Takes Two: Typical Adults Exhibit Mind-blindness towards Those with Autism Spectrum Disorder." Journal of Abnormal Psychology 125, no. 7 (2016): 879-85.

Sheppard, Elizabeth, Dhanya Pillai, Genevieve Tze-Lynn Wong, Danielle Ropar, and Peter Mitchell. "How Easy Is It to Read the Minds of People with Autism Spectrum Disorder?" Journal of Autism and Developmental Disorders 46, no. 4 (2015): 1247-254.