I Would Cure My Autism

On Falling Out of Love with the Neurodiversity Movement

In 2015, I was asked by a Major to sit on a Q&A panel about autism that he was organizing for military families of autistic children on the base. I was one of six people: two were clinicians, one was a special ed teacher, one was a therapist specialized in autistic children, one was an autistic child’s parent, and then there was me. When I asked him why he wanted me of all people to be on the panel, he told me that he wanted to give the people in the audience hope, by showing them an autistic person who managed to win at life. I thought this was quite funny, but he explained that it wasn’t a joke. He said that I was well-respected within my field, I was articulate, I was well put together, and most importantly, I was married and living independently, and that was essentially the height of autistic achievement as far as most of the people at the panel were concerned. He said in no uncertain terms that a lot of these parents were “going through it,” and my being there was to show them that there might actually be light at the end of the tunnel. I was taken aback and made a self-deprecating joke, about how the bar must be pretty low if a guy like me represents the hopes and dreams of the parents. He looked at me like I had just suggested that the movie The Boss Baby has serious artistic merit and said something to the effect of, “These are mostly going to be the parents of autistic kids; the bar is in hell.”

To prepare me for the panel, he sent a list of pre-submitted questions, some of which were addressed to me directly. One question that stuck out to me was about whether I would cure my autism if I were given the chance. I remember being slightly offended by the question, but nonetheless saw it as an opportunity to educate the parents about neurodiversity, and so I prepared a speech. Part of me wishes I could find what I had written just to demonstrate how committed I was to the cause, but a much larger part is quite happy I can’t find it—I fear that reading 22-year-old Jon’s autism takes and neurodiversity activism would probably kill me from cringe. I can’t remember the exact words, but I broadly remember what I planned to say. My answer was all the talking points you would expect from a guy who had fully bought in, hook, line, and sinker, to mid-2010s autism self-advocacy. Fortunately, perhaps by divine providence, I was spared from delivering weapons-grade cringe to the audience due to operational necessity that required me to be elsewhere, and so I didn’t appear on the panel.

I often wonder what that version of me would think of me now. In some respects he would be proud of all that I have since accomplished, but at least on the question of autism, I very much doubt that we would see eye to eye. A lot has changed in my life since 2015. Autistic people often get hyper-fixated on a narrow topic, and for whatever reason, the topic I hyper-fixated on for the next 11 years was autism and its intersection with Christianity. This research was the biggest factor that led me to change my mind about neurodiversity. I wish I had a more exciting story like a reverse road to Damascus experience where a true believer turned into an apostate but unfortunately I don’t. Instead, my mind was simply changed by the gradual wearing down of my convictions by my inability to square my ideological commitments with the complex realities I kept encountering in the trenches of the autism wars. In my research into autistic Christians I often document the process of deconverting from Christianity and funnily enough, my disillusionment with neurodiversity showed a nearly identical pattern. What happened with me—and what happens with most cases of deconversion—wasn’t a single “AHA!” moment, but the slow buildup of cognitive dissonance over a long period of time until it became intolerable, followed by rapid deconstruction.

I don’t think 2015 Jon would be able to recognize my current views, and if he did, he might look at what I have become with shock and horror. I often joke that I am like the British officers who went into WWI enthusiastic and full of vigor, only for the bleak and unforgiving realities of trench warfare to set in, slowly causing all their previous enthusiasm to be channelled away from patriotism and pride in their station, and into writing depressing poetry about how everything is sad and God has abandoned us. My situation is like that, except there are a lot more furries. Someday I might write Dulce Et Decorum Est Pro Neurodiversity Mori; maybe this essay is that. I don’t know. What I do know is that my time in the trenches of the autism wars has heavily shaped how I now see autism, both in others and in myself. If the Major asked me the same question now, I would probably give a very dejected, “Yeah, probably,” then attempt to change the conversation to literally anything else.

I often find the question of whether you would cure your autism to be confused. What people often imagine is that there is an autism switch buried inside your brain, and all that needs to happen is for someone to go in there with the right science and flick it from on to off. The reality is that autism isn’t found in a particular part of your brain; it is not governed by a specific isolated set of genes that we know of; there are no definitive set of autism biomarkers; and there are no empirical tests beyond clinical observation that we can use to confirm a diagnosis. While there are polygenetic risk factors that find that increase the likelihood of autism, there is no autism gene like there is for something like trisomy of the 21st chromosome for Down syndrome. Autism is best thought of as a set of reinforcing feedback loops that slowly build on each other and calcify over time into a set of traits. It is primarily a neurodevelopmental disorder, but it isn’t just a neurodevelopmental disorder. If you actually want to understand autism, you have to understand how it changes the way people interact with their environment. You need to account, not just for the biological components of development, but also for how an autistic person’s environment interacts with them, and how these factors interact and play into each other. The end result is that, by the time you are an adult, there is no “autism” that can be separated from “you,” and removing the autism would mean that who you have become through your development and your relationship with the world would cease to exist.

Autism is sort of like a cake, where the ingredients of neurodevelopment, socialization, and environment all mix and interact with each other. As the cake bakes, these ingredients start to cling together and solidify in a way that makes the cake impossible to deconstruct into its original ingredients. Through social interaction, humans develop the core aspects of their personalities: what makes you excited, what interests you, who you interact with, how you interact with them, the way those people interact with you, the lessons you’ve learned, and your relationship with language. All of these aspects are shaped by what a person takes away from their social interactions, and for an autistic person, this process is inextricable from the autistic brain that analyzed these events and the autistic senses that witnessed them. By the time you are a 32-year-old man, only the last piece of advice that Kipling gives to the young British soldier could feasibly make the brain stop being autistic. To put it in less depressing terms, because autism is neurodevelopmental, after the brain fully develops, a cure for autism in adults is likely just not possible.

With that being said, there are specific symptoms and manifestations of autism that probably can be treated. A good candidate for this would be sensory sensitivity. While you might not be able to “cure” sensory sensitivity, I think it is within the realm of possibility to lessen its impact by developing a drug or by combining several interventions. There are some interesting anecdotes about MDMA, LSD, psilocybin, and other psychedelics that autistic people have experimented with to treat their autism. I tend not to take these anecdotes very seriously because they haven’t shown much promise in the scientific literature. Studies about nasal oxytocin, low-dose MDMA, anti-anxiety meds, and a variety of pharmaceuticals tend to show mixed results at best that often fail to replicate in larger trials. As for the many people I’ve met who claim their autism was cured by taking psychedelics, I will just say that if they consider themselves not autistic now, I would hate to have seen what they were like before.

This isn’t to say that you cannot work on yourself and improve over time. When I was first diagnosed with autism at age 16, I was described by my evaluator as “the most stereotypical case of Asperger’s that I’ve ever seen.” Now I’m more like, “not quite stereotypically autistic, but obvious to anyone who knows what to look for.” Many of us get a lot better at managing autism as we get older, more mature, and more experienced. It isn’t so much that we become less autistic than that we get much better at controlling how the same level of autism presents and manifests. But this just involves making the symptoms of a social disorder seem less severe, rather than curing anything. Currently, the only effective “cure” for autism would be a very unreliable gene sequencing test followed by an abortion, as well as avoiding known environmental risk factors as best as possible. Even if an actual cure was discovered, it would likely have to be administered very early within the neurodevelopmental process. Because I’m 32, I’m afraid I’m cooked, and there is no point in speculating. I will be autistic, no matter what I do, for the rest of my life.

The question of a cure is extremely controversial in autism self-advocacy circles because to even bring up the question is to assume that there is something wrong with having autism. To be a neurodiversity advocate is to say no to a cure, because to a neurodiversity advocate, there is nothing to be cured. In my surveying of online autistics, I’ve attracted huge amounts of anger from autism self-advocates and accusations of being a closet eugenicist for even including questions about whether they would cure autism. One commenter on a survey typified it best when she stated, “Asking this makes it sound like our existence is a question that is open for discussion. OUR. EXISTENCE. IS. NOT. A. DEBATE.” Eleven years ago, I would have had a similar reaction. I would have said that I liked being autistic, that to cease to be autistic would be to cease to be me, and that I liked being me. I would have probably also given a long lecture about how the social struggles autistic people face are not due to any inherent problem with the autistic brain but with the barriers and the stigma society places on neurominorities.

I often look back at my old self—at the things that I said, and the reasons that I said them—with a mix of cringe and pity. I cringe because now, with far more information at my fingertips, I can see that I confidently held positions that wouldn’t stand up to scrutiny. I then feel pity because I see that a lot of that blustery rhetoric was an attempt to put on a brave face for what was obviously a very grim situation. A lot of my enthusiasm for the neurodiversity interpretation of autism arose because I couldn’t handle the alternative. The idea that there wasn’t actually anything wrong with me, but that I lived in an intolerant society that could be reformed, was extremely comforting. I would repeatedly tell myself what I jokingly called my neurodiversity affirmations. When I would get very hard on myself for having problems that were downstream of my autism, I would remind myself that autism was not the problem. I would repeat that I liked having autism, that there was nothing wrong with being autistic, that autism was just another way of being, and that the problem was societal intolerance of autistic people. I told myself that if we could just change a few things about the world, it would finally become a hospitable place for me. I repeated these things to myself because I needed these things to be true. I did not want to live in a world where the problems I had dealt with my entire life were the results of neurological factors beyond my control. It was intolerable to believe that my autism-related problems were a complicated interaction of neurology, psychology, and society, so inextricably bound together that it will follow me until I died so I rationalized it away with stories about the social model of disability.

There were a few moments I distinctly remember that led me to start questioning the neurodiversity movement. One that sticks out to me was when I discovered how many neurodiversity activists were staunch defenders of Facilitated Communication (FC).¹ I first encountered FC after the case of Anna Stubblefield hit the news, who used FC as a pretext to sexually assault a profoundly disabled man under her care.² When I heard about the Stubblefield case, I thought it was obvious that the neurodiversity movement would be against this blatant pseudoscience that was quite literally speaking over non-speaking autistics. This was very much not the case. I did find a few people who knew that FC was garbage, but most people I encountered in the movement were staunchly defending it, including members of ASAN and well-regarded neurodiversity bloggers like Mel Baggs.³ This was, at the time, very disturbing to me. I had thought the neurodiversity movement was on the side of science and was hit by a counterfactual where the science was clearly settled and activists were ignoring it because it didn’t fit their narratives. At the time I decided that this was a weird quirk of the movement, that they just hadn’t done their research and were fighting for what they mistakenly thought was right. I had been wrong about many science-related things in the past, so I felt like I couldn’t hold it against them and believed that in time they would see the light. Slowly, over time, I started to realize that this had less to do with ignorance and more to do with ideologically motivated denial.

I was able to put my misgivings about FC behind me until I started to expand my research scope from Level 1 autism to Levels 2 and 3. My original intention was to find parallels between people with ASD 2 and 3. What I found instead were populations of autistic people that were very different from ASD 1. I found some parallels and overlaps between ASD 1 and 2. Often, when I interviewed people with ASD 1 who had ASD 2 siblings or children, they would say they understood why they shared the same neurodevelopmental diagnosis but quickly followed it up with a caveat like, “But it is still obviously very different.” This contrast was even sharper if the child or sibling had ASD 3. In many cases the parents or siblings were initially extremely resistant to their own autism diagnosis, or else actively lived in denial. When I would ask them why it took them so long to recognize their own autism, their answer was usually something to the effect of, “I knew what autism looked like, and I knew it was not me.”

At one point I became friends with a man named Matthew. Matthew was a Christian who lived in my city and had ASD 1. In addition to having ASD 1, he was also the primary caretaker of his 22-year-old brother with ASD 3 named James. After interviewing Matthew and talking to him at length over the course of a few weeks for my autism and Christianity research, I asked if I could also interview James. He laughed and said, “Sure, I guess you could try,” as if I had just asked him if I could come over and bench press his car. James was able to speak in limited short words and sentences, and so I figured that I would be at least able to get some basic questions answered; in the worst-case scenario, I could use this as a field research opportunity. When I came over to their house, within about ten minutes of talking and trying to get answers to some very basic questions, it became apparent that none of my questions would be answered and James was not having a good time. At around minute twelve James asked his brother if he could have apples and watch WALL-E instead of talking to me. I agreed that would be a much better use of all of our time. For the rest of the two hours I had scheduled, we just hung out, and I talked to Matthew about what it was like taking care of his brother while James ate apple slices and narrated, with near pinpoint precision, every scene in the movie including the sound effects.

I quickly discovered that none of my ASD 1 research had much, if any, bearing on people with ASD 3. There was a small portion of ASD 2 people to whom it could reasonably apply in some circumstances, but the concerns, struggles, and difficulties of the 3s were of an entirely different class than most of the 1s. While we shared some traits, like sensory sensitivity or the desire for sameness and routine, the impact these needs would have on us when they weren’t met was dramatically different. After talking to a lot of people with ASD 3—well, more accurately, after talking to their families, as I often simply could not talk to them—it became more and more obvious that the neurodiversity framework I had bought into had almost nothing useful to say to them. During our long conversations, I had mentioned to Matthew that I was a big advocate for neurodiversity, but he had no good words to say about it. At first I didn’t understand why he had such a viscerally negative reaction, but the more exposure I got to ASD 3, the more his disdain made sense. Neurodiversity not only offered nothing for his brother, but it often acted like his brother didn’t exist, or as though he was a person he was not, with secret abilities overlooked by his caretakers and special ed teachers. If they did acknowledge that James’ life was very difficult, they would attempt to reframe that as a problem with society instead of recognizing that James had many serious developmental delays that had very little to do with societal structures and almost everything to do with neurological structures.

Despite being a neurodiversity guy, I didn’t push back with Matthew; it was obvious he had caregiver fatigue and there was nothing I could do to help him with that, so I just listened. After he got to know me and we were comfortable with each other, he asked me if I would cure autism, and I said something like, “No, there’s too much uncertainty with what that would look like. Who knows what sort of butterfly effect that might create?” Matthew paused for a while and then said something like, “It’s just sad. I love my brother, and he has a good life, all things considered, but no one would ever choose this life for anyone they love. Something just went wrong with his brain, and I don’t get the point of pretending it didn’t. What is the point in pretending anything else? Isn’t it obvious? I would cure this if I could and would fight anyone who wouldn’t. You would have to be insane to not want to if you could.”

I often think back to that panel I was supposed to be on and am thankful that I was prevented from giving an impassioned speech to an audience full of parents of autistic children of all types about how cool and good it is to have autism. Over the years I have met many more people like James, and many more with variants of autism between mine and his. Eventually, I had to concede that there were a lot of aspects of autism that were just inherently bad. There is no case in which having a severe intellectual disability is preferable to not having one, or in which being hypersensitive to sound, light, smell, and taste is preferable to not having those issues. No one would ever want their child to never develop the ability to speak, to clearly communicate with them, or to affirm this set of traits for themselves. As I acquired a lot more data from the much wider autism spectrum, I realized it would have been absurd to tell parents that autism is a benign difference whose challenges result from societal stigma when their child cannot communicate with them, wanders into traffic, regularly has violent outbursts, and would die if left to their own devices.

At one point I talked to an autistic friend who had just finished his PhD in autism research and was working in a clinic that focused on ASD. We had met three years earlier at a neurodiversity event when he was in the thick of his PhD, and so I figured that he, of all people, would be able to help me with my growing concerns. I reached out to him and told him about how I was struggling to reconcile neurodiversity with what I was seeing in people with ASD 3 and said I wanted to talk, to which he happily obliged. When I asked him how he reconciled what he regularly saw in ASD 3 with the neurodiversity movement, he basically just said, “I don’t?” followed quickly by, “Why do you even want to do that? Is there even a point in taking those guys seriously?” What I learned was that he, like me, on encountering lots of people with ASD 3, started to have a lot of misgivings about his previous neurodiversity commitments. Even in my most elaborate fantasies, I couldn’t imagine a world that could be engineered to fluidly accommodate people with very obvious and pronounced disabilities, unless it was a far-flung utopian fully automated luxury space communism equipped with an army of autonomous robot helpers. Working with these people showed me a near-constant stream of evidence that disability was not the result of unmet societal needs and that a lot of autistic people had maladaptive traits that would continue to be maladaptive no matter how society changed.

After going back and forth with my friend for what felt like hundreds of hours over the next few months I finally came to the conclusion that autism (the entire spectrum) wasn’t just a difference; it was a cluster of maladaptive traits, and the best thing that we could do as a society was to blunt the edges of the maladaptive behaviours that they caused. I didn’t flip a switch and stop being pro-neurodiversity; I went through the classic repeated spiralling cycles of denial, anger, bargaining, depression, and acceptance over the course of a few months. Once I Stopped, I was able to be honest with myself about my own condition. While encountering ASD 2 and 3 in earnest was the shock to my system that made me rethink neurodiversity, it also made me reconsider how I was thinking about my ASD 1. Until this point my analysis of why I was struggling so much with almost every aspect of my life was simply because I lived in an intolerant society that rejected all of those who fell outside of the bounds of normal. I was struggling because I was being systematically oppressed for challenging normality and daring to be myself, and my fellow autistics were being unjustly persecuted for failing to fit into the one size fits all mould that society had made for us. I now had to consider that this was, perhaps, and oversimplification and that one of the reasons I was suffering, was probably because something didn’t go right in my neurodevelopment, a part of my brain that should work might actually just be malfunctioning.

Having autism sucks, and it sucks for a lot of reasons: some come from societal prejudice, some come from having an autistic neurology, and some come from an extremely complex and difficult-to-tease-out combination of the two. There often isn’t a silver lining to it either. Doing analysis of people with ASD 1 has been sad, and has undoubtedly damaged my mental health. Talking to them, doing long-form interviews, and reading their posts is a window that reveals an enormous number of maladaptive coping mechanisms, like eating disorders and substance abuse, as well as trauma, crippling anxiety, social isolation, economic destitution, desperation, and depression. The temptation to cast these problems onto society and not to ask if maybe these are symptoms inherent to the condition is so great because to accept anything other than a societal issue would mean having to accept an intolerable conclusion. The conclusion that we live in a bleak reality in which some people are born unlucky and as a result will suffer for no reason beyond failing some cosmic coin toss that they never consented to and that societal change can do little to reverse this. What made this research even harder is that I could see myself and my own condition in all of these stories. Despite these people being very different from me, the gulf that separated our experiences often felt so small that going through their posts felt like reading my own journals from an alternate universe.

When I was preparing to make my podcast, I decided to try and hire a research assistant for a summer to help me organize my data. I felt it necessary to add in the job description that if you wanted to work with my data, you would have to get very used to reading suicide notes, suicidal ideation, and a lot of suffering and desperation. Since all of the people I was looking to hire also had autism, I also had to add that a lot of it would feel viscerally relatable and deeply uncomfortable. This disclaimer led to questions, and after I gave a list of specific examples, each of the four people that I was considering withdrew. I decided to not bother trying again and to just deal with it all myself. I don’t want to give the wrong impression. It isn’t just a constant stream of depression and desperation. There is also a lot of posting about special interests, a lot of earnest and enthusiastic engagement with an extremely broad range of incredibly niche topics, a lot of passionately arguing with people over the minutiae of a specific claim, and some of the funniest niche absurdist humour that I’ve ever encountered. But it is all punctuated with the harrowing screams of these same people living in anguish from having their skin rubbed away by the friction between their autism and the world around them.

If you go on the autistic internet (sometimes just called the internet) and skim their posts, you might be confused by their attitude. Especially if you restrict yourself to superficially perusing the #ActuallyAutistic hashtag and self-advocates posting about autism, you might think that most people who have autism love it and love their lives. But even if you exclusively read the posts of the autistics putting on a brave face and not blackpilling and doomposting, you can see that autism positivity exists in a world in which having autism is not a fun time. If you dig just slightly deeper, beyond the genre of posting that is pro-autism, pro-neurodiversity, and autism-positive, you will start to see that even the people posting in this way do not labour under any delusions that autistic people are having a good time. This becomes even more obvious once you enter their Discords, follow their anon Reddit, Twitter, or Tumblr accounts, join their private Facebook groups, or reach out to talk to them at length. Most autism positivity is buttressed against the undeniable fact that if you are born with autism, your life is going to be run on hard mode, and you will be indelibly marked by its effects throughout your entire life. Autism self-advocates will talk about how hard it is to have autism, how they are unfairly treated by the world, and how they are oppressed, mistreated, and abandoned by a world that doesn’t understand them. Their apparent positivity comes from their reframing this hardship as not being a problem of autism but of society. Often they will draw explicit parallels between autism and racial, sexual, or gender minorities and ask, “Are gay people a problem that needs to be solved, or do we really just need to solve society’s attitudes towards gay people?” The obvious problem with this framing is that being gay is in a completely different category from autism. Comparing sexuality to a neurodevelopmental disorder strikes me as a bad idea in general, but it is also a bad idea because these situations simply are not analogous. One of these things affects who you are attracted to, and another affects your cognitive rigidity and the way you process social and sensory information to varying degrees of severity. There is not a spectrum of gayness where one of every four gay people is so profoundly disabled by their homosexuality that they need 24/7 round-the-clock care, with an additional one in five gay people who don’t need 24/7 care but cannot live independently. Being gay also doesn’t stunt your social skills and cause you to act in profoundly anti-social ways without realizing it. Being gay does not create conditions that make you abnormally reliant on others to survive. Being gay is simply not inherently disabling. If you were to create a society in which there was complete, total, and unconditional acceptance of both autism and homosexuality, autistic people (yes, even the level 1s) would still be unusually dependent on others to live and survive, and gay people just wouldn’t. No one would need to provide support and accommodation to a gay person; it would just be another fact of life. The same thing would not be true of autism, because in order to survive, most autistic people need robust and tailored support mechanisms that cannot be provided without making intentional societal provisions.

Despite my misgivings, I quite like the idea that a society could be designed where autistic people are no longer disabled because our differences are accepted. I think it is a very pleasing idea, like ending all wars, or luxury space communism. There is a very pleasing logic to the idea that we could make accommodations for autism, similar to how we passed laws to require wheelchair ramps and lifts for the physically disabled; braille signage and textured pavement tiles for the blind; and beeping crosswalks, sign language interpreters, and captioning for the deaf. None of these accommodations actually change the disabled person—they just make society more accessible for them. They aren’t perfect, but disability accommodation is a really good thing, and I think it is the hallmark of a good society. For a long time I fought for what I called autistic curb cuts, changes to society that would make a better society for autistic people while also benefiting everyone else. There were quite a few I came up with: making sensory dampening gear accessible and normalized, having low sensory hours in stores, and having colour-coded lanyards at events to indicate whether you want to be approached or spoken to. The problem is that none of these things are any where near as effective as a wheel chair ramp or a literal curb cut.

The difficulty with autistic curb cuts is that they are limited in efficacy and mostly relate to sensory issues. Most widespread disability accommodations are physical changes to our environment or physical objects that make the environment more accessible. “Curb cuts” quite literally refer to cutting a ramp in a literal physical curb. Wheelchair ramps are a physical thing; Braille signage and menus are items you can put in a cupboard when you are done with them; and low sensory hours at grocery stores just mean letting fewer people into the building, turning off the music, and maybe dimming the lights. These things are all great, but autism isn’t a primarily physical disability. It has physically disabling components that can be resolved through physical accommodations, but most of what makes autism disabling is interactions with the people around you. The nebulous space of interpersonal interactions cannot be reshaped like the physical environment. There is no object or environmental feature that prevents me from alienating my peers by saying something that I didn’t realize was socially inappropriate. (I mean, I could buy them donuts to say sorry, but I don’t think apology pastries are a disability accommodation, strictly speaking.)

The beauty of a wheelchair ramp is that its existence does not require the assent and active participation of every person in the vicinity of the ramp in order for it to function. You just need to pay money to install it, and maybe pass laws to mandate them on all new buildings. But to accommodate autistic social disabilities and rigidity, you need everyone within proximity of an autistic person to become the wheelchair ramp. Accommodation of a social disability relies on other people to actively participate in your accommodation at a cost to themselves. For people who love and care about you, this is a reasonable expectation, but it is fundamentally different to expect this from strangers, colleagues, and peers. Disability accommodation for autistic people does not just require the reordering of your physical environment. It requires reordering social norms and personal preferences, and for people to provide grace and tolerance to people who are often upsetting, rude, difficult, and incomprehensible. A further complication is that wheelchair ramps are relatively consistent across the board, whereas autistic social accommodations are wildly different between autistic people. There aren’t wheelchair ramp designs that will launch a wheelchair user, ejector seat style, off the ramp if it is not designed for them; but there are a lot of autism accommodation strategies that will work really well for one person but completely backfire for the next. This isn’t to say we can’t improve the lives of autistic people; we absolutely can, but the effect is to make life slightly more bearable rather than making autism simply another benign variation of the human brain. The accommodations that we can actually implement are bandages, but they do nothing to address the cause of the bleeding, which at this point I don’t think is viable. I think bleeding as a result of autism is inevitable.

The killing blow to my faith in the neurodiversity movement, funnily enough, was not failing to secure realistic accommodation for my autism; it was finally achieving ideal levels of accommodation. It was only after getting a very good job working in a tech startup and getting to live a life that was as accommodated as I could realistically expect that I finally realized that the disorder ran much deeper than society’s inability or unwillingness to accommodate me. Until this point in my life, I had been living nearly accommodation-free—with the exception of my long-suffering and very lovely wife providing me support to such a large extent that my family jokes that I married my social worker. I was an army officer, which is probably one of the least autism-friendly jobs in the world, and found myself limited in my career advancement because of the whole host of autism-related issues that I faced. It was easy for me to see why I felt like societal change and accommodation would solve my problems. I only knew what a world was like without accommodation, understanding, and acceptance. Then one day, I finally left the military and I moved from a job where I had no accommodations and was expected to meet the social expectations of an army officer to a job as a senior cybersecurity analyst where I had access to any accommodation that I wanted or needed and was met with acceptance and understanding by everyone I worked with. My workplace was extremely flexible and autism-friendly. Everyone knew what autism was and how to manage people with autism. Even if they didn’t know that autism was the name for the condition, in my field, an autistic cyber security analyst was such a common thing to encounter that people didn’t think of us as a disabled minority but just as a type of guy that you will inevitably have to encounter. No one cared about my odd social skills, weird affect, strange way of speaking, executive dysfunction, or my lack of interpersonal communication abilities; they only cared about my ability to perform a very specific set of complex technical tasks. Yet, despite getting every accommodation I needed and shifting to a culture that was maximally accepting, it solved very few of my actual autism-related problems. Realizing that my autism problems were not due to a lack of accommodation by running a fairly convoluted N=1 study on my own life led me to re-examine a lot of my previous autism research with much more substantial N values (which you could read more about here and here). When I no longer felt compelled to force my research conclusions into a neurodiversity framework, I quickly came to the conclusion that the vast majority of us were facing problems that could not be easily reduced to a lack of accommodation, acceptance, and understanding. The most obvious conclusion you could draw from the accumulated data was the totally revolutionary and shocking conclusion that a neurodevelopmental disorder causes a lot of inherently maladaptive neurological traits.

I want to be clear that I am at the height of privilege for autistic people; I have been extremely lucky in a way that I know most people with my condition are not. Yet despite being so privileged, I am faced with daily reminders that something in my brain is broken. There is something in my brain that is constantly malfunctioning when it shouldn’t be when I try to parse social situations, and it makes me a difficult person to be around. I deeply struggle to form and maintain relationships and friendships. I don’t know what I’m doing wrong, or, if I figure out what I’m doing wrong, I can’t seem to fix it, because I am interacting in the social realm with a broken toolkit. I frequently upset people by saying things that I don’t realize are offensive. I routinely overstep the boundaries people set up because I don’t realize that they are there. I make everyone else uncomfortable by not reading the social cues people are giving me to stop talking. I have been in more than one group chat where everyone has started a parallel chat with everyone but me in it, and I am frequently that one friend that people “accidentally” forget to invite to events. I have had very embarrassing meltdowns at company social events from being overwhelmed by the sound and people. There is no putting lipstick on this pig. Autism just makes my life worse, and it is not because I live in a society that fails to accommodate me, since society does accommodate me in literally every way. There is no amount of societal change that is going to change the fact that part of my brain cannot intuitively parse and interpret social cues. Furthermore, nothing is going to change the fact that the social cues, nonverbal communication, and social contexts that my brain fails to process are incredibly useful and adaptive things that make the lives of everyone else better.

People are social animals, and communication is vital to our species. Nonverbal communication is a huge part of how we convey information to each other, and it acts like a lubricant that helps turn the right social gears to effectively deliver spoken communication. Tone, body language, posture, eye contact, and the wide range of social norms that mediate these signals convey a huge amount of incredibly important information about how explicit communication should be interpreted. I miss probably 80% of it and am unaware of about 80% of the signals that I am sending to other people. This essentially means that many of the conversations that people have with me are unlubricated and cause a huge amount of often very grating friction. There is a perception of autism online that we are a cute and quirky group of people whose biggest problem is that we are misunderstood by a cruel world that hates our differences, and while that may be some of us, it isn’t me, and it also isn’t most of the autistic people that I know or study. Autistic people are often very difficult to be around and live with because the lack of social lubricant means that, if both people entering a social engagement aren’t being careful, and aren’t cognizant of the fact that the interaction might go very differently from what they expect, the gears are going to grind and then break, heat up, or catastrophically fail.

I wish this was not the case, but the overwhelming preponderance of evidence shows that, despite my intentions, I am a very difficult person to be around if you don’t know how to deal with autistic people. Autism self-advocates like to pretend that this isn’t the case. I won’t claim to speak for them all; I can only speak for my former self and the ones that I know personally. But I think this is motivated by not wanting to accept that you were dealt a bad hand in life, and that while you can make some minor tweaks and adjustments, you are probably going to be stuck with these problems until you shuffle off your mortal coil. Freddie DeBoer recently wrote a good article about this called “It’s ‘Mental Illness Doesn’t Do That’ Season Once Again,” about how a lot of mental health activists will look at someone’s reprehensible behaviour that is obviously downstream of their mental illness and claim that mental illness has nothing to do it. Freddie’s entire article is saying, “No, actually mental illness is bad and makes you act in bad ways,” and I would like to add that this equally applies to neurodevelopmental disorders. I wish autism were the quirky chungus disorder that made you act like a blue-haired manic pixie dream girl who likes making art of anthropomorphic mushrooms. I wish it didn’t lend itself to insolence and solipsism. I wish I didn’t come off as a conceited jerk who doesn’t care about other people or their feelings. I wish my nickname in middle school wasn’t “Spazz” because of my frequent meltdowns that would devolve into screaming at my classmates for “breaking the rules.” I wish I wasn’t like this and could be like my siblings, who have friends that don’t have to all look at each other and ask, “Do we have to invite Jon?” in a tone that suggests they are seeking permission to hear a no.

I wish these things were all true, but sadly, they are not. I live in a society of people who have the ability to more or less intuitively interpret and parse each other’s non-verbal communication, so much so that access to that ability is assumed, and I don’t have that ability. My brain is hyper-literalistic, hyper-systematizing, singularly focused, extremely resistant to change, unable to filter background noise, lacking any sense of social intuition, and governed by a need to stick to patterns and routines. These traits are, in almost every single context, maladaptive with some very minor exceptions. These traits will likely continue to be maladaptive in all future contexts. Although in most aspects of life I have won the lottery, I have had to learn to accept that in some pretty critical ways I have also lost it.

When people ask me what it is like having autism, my short answer is that I have a collection of maladaptive neurodevelopmental traits that make my life worse. If I was given a magical button that would make me gradually less autistic over time, why wouldn’t I press it?

There is really only one good reason I can give for why you wouldn’t want to cure autism. Curing autism would likely be extremely hard, cost-intensive, and involve a set of ethically questionable medical practices that would set a troubling precedent. The number of people that would be impacted would be fairly small and the resource cost would be astronomically high. At the current moment curing autism simply isn’t pragmatic or a good use of resources, and those resources would be much more effectively spent on other things. Doing autism research to better understand the human brain and its neurodevelopmental disorders is good, and I think that research into drugs that could manage, minimize, or alleviate autism symptoms would be cool and would probably have uses far beyond autism. It is just that looking specifically for a cure is a moonshot project. In terms of dollars spent to alleviate suffering, in our current resource-constrained environment, there are much better things to spend our money on than curing autism. But who knows, maybe there will be a breakthrough in another field in the next 50 years, or some other paradigm shift will change the field so that a cure becomes viable. In that case, sure, let’s give it a shot.

A final note:

Even if we can’t cure autism, you can take actionable steps to make some of your maladaptive autistic traits impact you less. There is no single silver bullet, but there are many actionable steps that you can take to make your life easier if you have autism. My friend EtanaRachel has written about her experiences here. The neurodiversity movement sees this as anathema, that somehow, by trying to work on and overcome your autism-related traits, you are betraying the cause or breaking the faith. But there are no rewards for suffering through your autism, when you die, Jesus is not going to meet you and give you a gold star because you refused to bend to neuronormative norms of whatever. If you are autistic and miserable there are a lot of things that you can do that will make your life better: go to improv class, learn public speaking, go to occupational therapy to work on sensory issues, force yourself to go to social events and outings that you don’t want to go through, push yourself to do things you are not comfortable doing, listen to the people in your life who care about you, take time out of your day to let explicitly your loved ones know that you care about them and you appreciate the time that they invest into your relationship. Most importantly do not just lie down and die, do not accept that there is nothing to be done, nothing to fix, and no improvement to be made.

1. FC, spelling to communication (STC), and the Rapid Prompting Method (RPM) are all forms of “communication” where a fully able adult helps a non-speaking person communicate by guiding or prompting them to spell out words on a letter board. FC is denounced by virtually every major professional body that has assessed it; it has failed to demonstrate efficacy in double-blind control trials and fails even very basic verifications like the message-passing test. The message-passing test presents a series of scenarios in which the facilitator and the facilitated are shown a series of images: sometimes they both see the image, sometimes only the facilitated sees the image, and sometimes they are shown two different images. When the person being facilitated is asked to spell out the common object seen in the image, they fail to do so in the vast majority of cases unless the facilitator is also shown the same image.

2. There is a stomach-churning Netflix documentary about it called “Tell Them You Love Me” if you want more details

3. Two years later, ASAN would put out an official statement questioning the ASHA for their condemnation of FC. To this day, ASAN promotes FC by giving out grants to groups like the Spellers and Allies Advocacy Network of the International Association for Spelling to Communication (I‑ASC).