There is a word capable of provoking visceral reactions in the autism community. Many autistics consider it a form of hate speech, seeing it as an erasure of their identities, even their very selves. Many believe that the thinking behind it is indicative of wholesale hostility toward the autism community. Yet this same word is often touted as the desired result of autism research.
That word is “cure.”
For people not very familiar with the neurodiversity movement, this can be confusing. Given the way autism is usually discussed, you could be forgiven for assuming that autistics would want to be cured. After all, we’re disabled, we have a disorder – aren’t these bad things? Wouldn’t anyone want to be free of the limitations of such a condition?
The reality is much more complicated. While my own feelings on the subject are not as strident as some, the prospect of a cure for me personally is not something that I hope for or would welcome. In part, this is because I don’t believe a cure is possible. Autism is how my brain developed. That’s not something that can be changed, at least not without significant disruption to my existing neurology (more about that in a bit). Researchers who speak of a cure are usually talking about either trying to modify the more visible signs of autism or looking for ways to prevent autistic people from being born in the first place. Since autism runs very strongly in families, much of the current research is focused on finding genetic predictors that would allow for selective abortions of pregnancies likely to result in an autistic child. This is eugenics, not a cure.
But even if a postnatal cure for autism were available, I’m not at all convinced it would be a good thing. Many autistics will tell you that they do not consider autism to be a misfortune; in fact, many are proud to be autistic and would not wish to live any other way. I am not among them. I do feel that, at least for me, autism has had a net negative effect on my life, though I also understand and respect the sentiments of autistics who feel differently about their own lives. Still, the idea of a cure is something that I’m ambivalent about at best.
I definitely would not want to be cured at this point in my life. I’m 34, and living as an autistic is all I’ve known. To no longer be autistic now wouldn’t be a relief from limitations; rather, it would mean suddenly being confronted by a new set of variables with which I have no experience. I suspect, in fact, that the types of adjustments I would have to go through are not entirely unlike those faced by people who are newly disabled. Furthermore, a cure for my autism wouldn’t suddenly imbue me with winning social skills; those are learned, and no longer being autistic now wouldn’t change the fact that I never learned these skills when I was young, at the age when typically developing children usually learn them. I wouldn’t suddenly find myself with a slew of new friends or a boyfriend, and I’d probably be more poorly equipped to live with my solitude. I’d also be unlikely to experience significantly less unease in social situations; my social anxiety is at least as much a product of how I’ve been treated throughout my life as it is of the autism itself.
But what if I could have been cured as a young child? If I had the chance to start my life over as a non-autistic person, would I choose to do so? I honestly can’t say. I am not glad to be autistic. In many ways, I wish I weren’t. But at the same time, I recognize that this wish is really for an absence of just the negative aspects of autism – I want to be a less awkward, less clumsy, less lonely version of myself. But if I were to restart my life without autism, how much of what makes me me would be lost?
To hopefully help you understand what I mean, let’s compare my autism to another condition with which I am intimately familiar. I suffered from migraines as a child. Several times each year, the world would start to spin around me. It would begin as mild vertigo, so slight that initially I wouldn’t be entirely sure something was wrong; but it would quickly progress to the point where everything around me looked like it was moving. My only relief came from lying completely still, eyes shut tight. Most attacks began soon after waking in the morning, though they occasionally hit during the day, and they always lasted into the evening.
The episodes gradually tapered off as I got older, and when I was 10 or 11 they ceased altogether, though not without leaving a mark. When I was a freshmen in high school, my gym class included a brief unit on gymnastics. Of course, I couldn’t do handstands or cartwheels (because of my motor difficulties), but I figured I should at least be able to complete a basic somersault. However, as soon as I placed my forehead to the mat, I began to shake – the tilt of my head had triggered a migraine flashback. Even today, a slight sensation of dizziness can cause me to momentarily panic, a visceral reminder of how my migraines always began.
Did I become a significantly different person after my migraines went away? Of course not – I was the exact same person I’d always been; I just didn’t have to deal with any more of those days of complete misery. And I feel confident that if I’d never had the migraines to begin with, I’d still be basically the same person that I am today, living essentially the same life, albeit with a few less bad memories. The episodes had some minor lasting effects, but nothing that substantially altered me.
I can’t say the same thing about autism. While it’s impossible for me to say precisely what I would have been like without it, I’m certain I would have been quite a different person than I am now. For one thing, the world is experienced through our senses, so my hypersensitivies mean I experience my surroundings differently than I otherwise would, and have been experiencing the world differently throughout my life. Moreover, autism isn’t just a set of deficits and difficulties; it’s also characterized by different ways of thinking and of processing information. There are aspects of being autistic that I’d give almost anything to live without, but others that I love and would never want to lose. I can entertain myself for hours by playing repetitive games in my head. I don’t have much of a tendency to “other” people who are different from me, and I’m particularly sensitive to individuals who suffer marginalization. I have a lot of pen-pals from all over the world, of all different ages; some of my correspondents are in prison, and I write to them not out of a sense of charity but because I don’t see any reason not to associate with people whose life experiences are significantly different from mine.
Perhaps most importantly, the way I think is often different from the people around me. One thing I’ve noticed from constantly observing people over the years is that I’m more of an individual than most folks. I don’t mean this to denigrate anyone else or to suggest that I see myself as superior to others; I’m just stating an observed fact. I make connections that don’t occur to most people; I have a more unique set of interests and abilities. One of the characteristics commonly associated with autism is an ability to think in highly original and unique ways, and this is one of the characteristics that I most appreciate in myself.
While my social isolation is a significant cause of pain for me, I also benefit from a great deal of emotional independence. I can go to restaurants, movies, concerts and sporting events by myself, and I thoroughly enjoy myself when I do. It’s not that I don’t want someone to do these things with – when I think about what it would be like to be married or in a relationship, what I long for most of all is a companion to share life’s experiences with. But I’m not dependent on having another person with me to enjoy my favorite activities, so if there’s something I want to do, I don’t need to wait for anyone else to be free to come along in order to have a good time. I remember once telling someone about a weekend vacation in Chicago, and when I mentioned spending an afternoon at the Six Flags north of town, she exclaimed incredulously, “You went to an amusement park by yourself?” Yes, I did, and if you think that’s strange then screw you, because I had fun. It would suck not to be able to enjoy my own company.
At this point in my life, nothing is more painful, more heartbreaking, more of a burden for me than what happened in China and subsequently in the years following. If I were able to go back in time and stop myself from getting on that plane to Beijing six years ago, I’d do so in a heartbeat. Much of that heartbreak comes from having cared deeply for someone who never cared at all about me and who did not want me to be a part of his life. But I also know that that situation, painful though it still would have been, would not have had such a devastating long-term impact if it had not been so singular. The fact that I’d never had a relationship was a sore point long before I went to China, but it didn’t loom at the center of my life. And I was also capable of a great deal of joy before then, joy that has been absent from my life ever since.
I do blame my autism for my lack of romantic experience, and for my usual inability to feel attraction to other individuals. I wouldn’t have combined these topics in a single blog if I didn’t. But even when it comes to this most difficult part of my life, the negative impact of being autistic is not clear-cut. I may have been a happier person today if I weren’t autistic, but it was an external event that ultimately robbed me of my happiness. If things had worked out differently – if I’d met and fallen for a guy who actually did care for me, and if we had ended up together – then I probably wouldn’t want to change anything about my life. In fact, not usually feeling attracted to others might actually have been a positive, helping to contribute to a stable, long-term relationship. In other words, while I do think my autism was a significant factor in this situation and the lasting impact it has had on me, that negative impact was as much a result of outside circumstances as my internal wiring.
Besides, while I probably would have enjoyed at least some romantic success if I hadn’t been autistic, such an outcome would not have been a sure thing. Despite the fairytale myth that “there’s someone for everyone,” love isn’t guaranteed to any of us, and there are other factors besides autism that can cause a person to miss out on that part of life. (Nor is autism an absolute barrier to love – I know of autistics who’ve dated, married, even had children.) While admittedly rare, there are other thirtysomethings who’ve never had a serious relationship, and not all of them are autistic. As painful as perpetual singlehood is for me now, how much worse would it be if I weren’t so emotionally independent? Autism has more than likely been holding me back when it comes to romance…but I can’t say with absolute certainty that I don’t have that completely backward. I have to at least allow for the possibility that autism has, in fact, spared me from even greater heartache.
Even as somebody who views her autism as a negative thing, I can’t say for sure that I would have been better off without it. There are far too many variables to consider, far too many unknown possibilities. And remember, not all autistics feel as negatively about their circumstances as I do. If you are a non-autistic person assuming that a cure for autism would unquestionably be a good thing, you are placing yourself as a higher authority on the experience of living with autism than those of us who are actually autistic, which is both arrogant and inherently marginalizing. At the very least, please keep in mind that when you speak of curing autism, what you are really talking about is making drastic changes to the neurology of autistic people, the implications of which are tremendous.
You don’t have to believe that autism is ideal to recognize that curing an individual person’s autism would likely erase many of that person’s unique attributes – may, in fact, erase things that are central to that person’s personality and self-identity – and would leave them dramatically, perhaps tragically, altered. Please understand that for many of us, talk of a cure sounds callous at best, and at worst, like complete rejection of our very beings. Autism is more than just a lack of abilities: it is a natural variation of the human experience, and an equally valid way of being human.