The ‘C’ Word

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.

Not So Complimentary

“You’re a great person despite your autism.” A friend told me this recently. I have no doubt he believed he was paying me a compliment. I’d heard similar sentiments from other people before, and I’m sure each time the person intended it to be kind. So I’m somewhat hesitant to criticize it, because I don’t want well-meaning friends and acquaintances to feel they need to walk on eggshells around me, afraid of accidentally saying something offensive.

That being said, I think it’s important to explain why this particular sentiment rubs me the wrong way. I believe it reveals a particular stigma surrounding autism, and mental disability in general, that usually goes unexamined, and we need to talk about it.

If the phrase “you’re a great person despite your autism” doesn’t make you uncomfortable, consider how it would sound if we replaced “autism” with one of my other traits. You’re a great person despite your blonde hair. You’re a great person despite your average height. This may not strike you as offensive, but isn’t it at least a bit…odd? If you heard someone say this to me, wouldn’t you wonder what my height or my hair color had to do with being a great person?

In addition to a personal attribute of mine, autism is also a marker of social identity. Disability, like gender, ethnicity, or orientation, is one of the many ways we identify and classify each other. Consider what it would sound like to tell someone that they’re a great person despite their race or their gender. Now are you starting to squirm?

But, I can imagine you objecting, those things aren’t disorders. First of all, many autistics reject the idea that they have something “wrong” with them that needs to be cured. But let’s leave that aside for now. Suppose you were to tell someone that they were a great person despite their diabetes, asthma or peanut allergy. Again, wouldn’t this at least sound strange? Wouldn’t you again wonder what any of those things have to do with whether or not someone is a great person?

And this is precisely the problem with the “compliment” I’ve been paid. The only way I can be a great person despite an attribute is if said attribute makes it less likely for me to be a great person. It only makes sense to speak of autism in this context if you believe that being autistic diminishes me, rendering me a lesser person than I otherwise would have been.

In other words, it’s taking a trait that has always been a part of me, one that I did nothing to cause, and imbuing it with moral connotations. It’s easy to see how ludicrous this is when applied to asthma or hair color, and how downright offensive it is when referring to gender or race. But when it comes to autism, and mental disability more broadly, we don’t think anything of it.

Consider how routinely people dismiss those they disagree with by telling them they “need a shrink” or should “get help.” Think about how commonplace it is for people to use “retarded” as a synonym for “stupid.” The impulse to invoke mental disability as an insult is so automatic, so embedded in our culture that even I often have to catch myself from doing so. It’s a largely unspoken yet incredibly pervasive prejudice: mental disability makes you less logical, less moral, less good than you otherwise would have been.

My value as a human being is not connected to my autism, and you are not giving me a compliment by suggesting that autism is something I needed to overcome in order to be a great person. My autism, like my hair color, is a morally neutral trait. I am autistic, and perhaps I am also a great person, but the former is not a barrier to the latter. They are completely separate things.

A Socially Acceptable Prejudice

Until a few days ago, it had been over three years since I’d last posted anything on Twitter. As you may have noticed, brevity isn’t really my thing, and I had found it difficult to regularly come up with something worth saying in 140 characters. That changed the other night when I came across this article from the Huffington Post about a hashtag started by Dominick Evans, a disability rights activist, earlier this month. #AbleismExists was meant to allow people to tweet instances of anti-disabled discrimination they had personally experienced. The testimony people gave in response could speak volumes to anyone willing to listen.

Reading through the posts included with the article, as well as additional ones on Twitter, was incredibly affirming to me. To say I could relate would be an understatement. Tweet after tweet, I found myself wanting to jump up and yell, “YES!” I also often wanted to let loose a string of expletives in response to some of them, thoroughly disgusted (but not surprised) by how cruelly people had been treated.

The article quotes Dominick Evans as saying, “One disturbing trend I have found is having friends who support LGBT, civil, women’s and other rights for marginalized communities, who were telling me that ableism does not exist.” I’ve experienced this quite a few times myself, and it both enrages and baffles me. It would be one thing if this denial were only coming from the usual crowd of racism-, sexism- and homophobia-deniers, but I’ve encountered a number of non-disabled straight, white and/or male individuals who have no problem acknowledging their privilege when it comes to gender, race or orientation, yet who refuse to even consider the existence of systemic prejudice against the disability community. I don’t understand this mindset, but it does drive home to me that even among otherwise socially-conscious folks, disabled people remain marginalized, largely invisible.

A couple weeks ago, I was scrolling through a Facebook thread discussing North Carolina’s controversial “bathroom bill.” Most of the posters were rightly outraged, yet I came across several who called the backers of the bill “mental cases” or accused them of “going full retard.” Invoking the mentally disabled as an insult is sadly incredibly common in our society, but it was especially jarring to see people doing so while protesting the ill treatment of another disparaged community.

I have friends and family members who are fairly well-versed in issues surrounding systemic racism, sexism and homophobia who had never even heard the word “ableism” until I used it. My word processor didn’t even recognize it as a real word. Discussions of social privilege routinely refer to “straight white males” as being the most advantaged members of society without any mention of disability status. Even those willing to recognize that disabled people face discrimination often treat it as a lesser evil, as if things like denial of educational or work opportunities, unequal pay, lack of access to quality medical care or housing discrimination were somehow less of an injustice when based on disability rather than race, orientation or gender. When The New York Times reported on a study last November that looked at ableist employment discrimination, several commenters dismissed the findings as meaningless, equating a prospective employer’s lack of interest in a disabled candidate to ruling someone out because they’d previously been fired. Controversy roiled this year’s Academy Awards when no actors of color received a nomination, yet I can’t recall a single mention in the media of the perennial absence of disabled actors, not just at the Oscars, but in film altogether.

The reality is, no systemic prejudice, be it racism, sexism, homophobia, transphobia, classism, or ableism exists in isolation. Failing to include ableism in the discussion doesn’t just do a disservice to the lived experiences of disabled people; it also leaves us with an incomplete picture of how other systems of oppression work. For example, official autism rates are highest among middle- and upper-class whites. This does not mean that you’re more likely to be autistic if you’re an affluent white person; rather, it’s a very clear sign that poor people and people of color are less likely to receive a diagnosis, which in turn leads to less access to services that can help autistics live productive, fulfilling lives. Dealing with this problem means not only acknowledging the roles race and class play in a person’s access to medical care, but also recognizing the barriers society puts up that keep disabled people from getting adequate accommodations and support. Similarly, an October 2015 article in The Atlantic described some of the ways autism may present itself differently in boys and girls. According to this article, the bulk of autism research has focused exclusively on males, leading to girls being diagnosed on average two years later than boys. This disparity, too, can’t be adequately addressed unless we consider how assumptions about both gender and disability affect the lives of autistic women and girls.

I wish everyone would check out both the Huffpost article (it’s quite short) and the #AbleismExists Twitter feed for themselves. But if you don’t have time, I’ll finish up here with a sampling of some of what I had to add to the discussion, as well as tweets from others that I found especially powerful.

When I try to explain that a certain activity is especially hard for me and am accused of using my disabilities as a crutch. #AbleismExists

When even my own relatives use “retarded” as a pejorative. #AbleismExists

When I have to choose between hiding my autism and being blamed for my social awkwardness, or “coming out” as autistic, risking being denied opportunities due to other people’s assumptions and STILL being blamed for my social awkwardness. #AbleismExists

“But you can talk! You’re not really autistic!” #AbleismExists

Pointing out the ways that society devalues or even completely ignores the existence of disabled people, and being accused of “whining” about “nonsense.” #AbleismExists

#ableismexists when nondisabled people say they want to ‘be the voice’ for disabled people. We have our own voice. Speak with us, not for us.”
— Sarah Blahovec (‏@Sblahov) Apr 23

#ableismexists when my colleagues are mistaken for caretakers at a team lunch.”
— Chris Meredith ‏(@__tallin32) Apr 18

“If someone who needs help asks for it, and you tell them to stop being lazy. Guess what, they’re not the lazy ones. #ableismexists”
— Rebecca Sky ‏(@RebeccaSky) Apr 18

“The small town I grew up in has a ‘nickname’ (ableist slur) they use behind my back because #ableismexists”
—  Pamela Hope (‏@PamelaHope3) Apr 18

#ableismexists When people tell my boyfriend he’s a saint for dating me… Yeah I don’t think saints do what we do bruh.”
— N ‏(@iROLLwitdacrips) Apr 17

“When I bought a business suit, the clerk said, ‘it’s so nice you people get out.’ #ableismexists”
— disabledlivesmatter ‏(@karmanamaste) Apr 24

“My parents once recorded me having a meltdown when I was 12 in order to shame me into not having them again. #AbleismExists”
— Finn G. ‏(@phineasfrogg) Apr 17

#ableismexists when able bodied people insist that they get to decide if the prejudice we face is real or not.”
— Dawn Mckenna (@Subimaginati) Apr 25

“#AbleismExists when hashtags about ableism continue to be echo chambers, mostly read and retweeted only by disabled people.”
— Heather Ure ‎ (@riotheatherrr) Apr 18

7 Things I Wish You Knew about Autism and Autistics

I’m not sure how it started, but for a few decades now, April has been designated “Autism Awareness Month.” Like many autistics, I don’t find this particularly helpful, since most people are aware that autism exists. What’s sorely lacking is a deep understanding of autism and autistic lives, neither of which is helped by blue light campaigns or empty slogans.

Many self-advocates prefer to call this “Autism Acceptance Month,” out of recognition that ableism and misinformation are far more detrimental to autistics than a lack of awareness of autism. Which has me thinking: What are the things I’d most like my non-autistic friends and relatives to know about this? I came up with several points I’d like to make that have been weighing particularly heavily on me lately. Any one of these topics is worthy of a full post, and I probably will write in greater depth about them at a later date. But for now, here’s a brief summary of a few things I think you should know about being autistic and autism acceptance.

1. Accepting autistics means accepting autism. Unlike a lot of autistics, I don’t consider autism to be an integral part of my self-identity. However, it has always been there and always will be there, and there’s nothing I or anyone else can do to change that. If your attitude is that you love me but hate my autism, you are not accepting me, because the only me that has ever existed is one that is autistic, and that is the only me that ever will exist.

 But, I can imagine some of you asking, don’t you want a cure? First of all, what I want doesn’t ultimately matter here, because autism can’t be cured. When researchers speak of “curing” autism, what they’re really talking about is preventing autistics from being born in the first place. If you’re born autistic, you will always be autistic. This is how my brain developed. That can’t be undone, and it’s not at all clear to me that it should be undone if it were possible. One thing that often surprises a lot of people is that many autistics don’t want to be cured and find talk of cures offensive. I wouldn’t go that far myself, but such talk does strike me as misguided. This is not to say that there aren’t genuine disabilities that come with being autistic; indeed, one of the reasons so many of us resent the present emphasis on prevention is that it does absolutely nothing to improve life for those of us who are already here. Regardless of how you personally feel about autism, you can’t claim to be accepting of me if you’re not also accepting of my autism, because we’re a package deal. It’s not something I can ever be separated from.

2. Inclusion is not the same thing as acceptance. Social media is filled with “heartwarming” stories of autistic teenagers being invited to a dance by their non-autistic classmates, “sweet” videos of autistic children being allowed to play with their more typical peers despite their obvious differences, and “inspiring” accounts of employees being nice to their autistic co-workers. It always leaves me with a sick feeling in my stomach. What exactly is the message here? That we’re dependent on people without disabilities for validation? That we should be grateful when non-autistic people allow us the occasional token participation in predominantly non-autistic spaces? Simply allowing us to coexist in the same sphere as the rest of the planet is not acceptance. Advocating for the “inclusion” of disabled people is similar to touting your “tolerance” of LGBT people. We don’t want you to merely put up with us; we want and deserve to be embraced as fully integrated members of society, loved and appreciated because of who we are rather than in spite of it, with as much opportunity as non-disabled people to participate in any facet of life that we wish and that our own multifaceted set of abilities will allow. It shouldn’t be “heartwarming” to see autistics included in activities, because our participation in society shouldn’t be viewed as any more extraordinary than non-autistic participation.

Also, can we please get rid of those awful Facebook posts about how the only thing disabled or “special needs” children or people want is to be included or loved? Because no, that’s not all we want. We want the same things the rest of you want: equal access to educational opportunities, fulfilling careers, financial independence, a happy family, meaningful friendships, self-determination, respect. The fact that it’s often harder for us to obtain these things doesn’t mean we want or deserve them any less, and the suggestion that all we really need to be happy is for non-disabled people to deign to be nice to us is condescending and insulting.

3. Most autistics don’t like person-first language. You may have been told before that it was wrong to use the word “autistic,” that instead I should be referred to as a “person with autism.” The thinking here is we need to emphasize that someone who has autism is a person first, that “labeling” is inherently damaging. I find this ludicrous. I am a woman, an American, a sister, a daughter, an aunt, a Columbia alum, a traveler (when I can afford it), a Cubs fan, a film buff…All of these things are “labels.” We use labels all the time to describe others and ourselves without ever thinking that such words in any way encompass the totality of a person. So why should describing someone as “autistic” be any different? To single out this particular label as uniquely bad sends the message that it is an inherently negative thing to be, which only increases the already substantial stigma that autistics face.

Additionally, those who consider being autistic to be a part of their identity find it offensive when non-autistics suggest that autism is something they merely live with, as if it were a separate entity they were just toting around. To them, that would be like calling someone a “person with female gender” or a “person with American nationality.” This is an issue that self-advocates tend to feel particularly strongly about: Autistic bloggers have written about it extensively, have started Facebook groups advocating for what they call “identity-first language” and have influenced many of our allies to reject person-first language when referring to us. It’s not a universal sentiment, and you should always be respectful of an individual person’s wishes when speaking to or about them. But the consensus within the autistic community is pretty broad here.

4. Categorizing autistics as “high-“ and “low-functioning” does more harm than good. Ironically, the very people who advocate the loudest for person-first language out of a supposed distaste for labels are usually all too willing to slap functioning labels on us. While it’s good that more and more people are recognizing that autism is a spectrum rather than a specific condition, you can’t simply place people along a continuum. Many autistics may seem close to typical in some situations yet appear profoundly disabled in others. There are people who are highly intelligent but consistently score poorly on IQ tests due to difficulty with executive functioning. There are people like me, who at first glance may appear “normal,” yet who struggle mightily with interpersonal engagement. There are people who are nonspeaking and unable to manage their daily lives without significant support who hold Master’s degrees and PhDs. Just where on the “functioning” continuum do they belong?

In addition to being unhelpful, functioning labels are often used to try to silence autistic voices. “High-functioning” individuals are seen as “not really autistic” or “not autistic enough” to have an authoritative opinion on autism issues, whereas those designated as “low-functioning” are believed to be incapable of speaking out at all. In both cases, these designations are employed to prevent autistics from controlling our own narratives.

5. “Non-verbal” does not mean a person can’t comprehend or communicate. Historically, nonspeaking autistics have been assumed to be significantly intellectually disabled, to the point where it was believed they were incapable of learning or understanding the world around them. This perception is slowly changing, but I still regularly see people in online discussions referring to autistics who “can’t communicate” (often used as justification for the “low functioning” label). And family members of autistics are far from immune to this line of thinking. Carolyn See, the grandmother of an autistic, wrote in The Washington Post in 2006 that “autistic kids don’t much notice or care about the outside world,” and contrasted them with their “sentient” family members who, by her reckoning, were the people actually experiencing autism. In a now-notorious video by Autism Speaks, a succession of parents discuss how horrible it is to raise autistic children, often with those children right in front of them as they speak; one woman states, with her daughter easily within earshot, that she once sat in her car for 15 minutes contemplating driving herself and her daughter off a bridge.

Many nonspeaking autistics have learned to make use of assistive devices to communicate. All too often, the non-autistics in their lives had assumed that their lack of speech indicated a lack of comprehension, only to learn with surprise (and not a little guilt) that they had always understood everything said around and about them. One of the most important concepts in the disability community, and in particular the autism community, is presuming competence: that is, presuming that a person fully understands their surroundings and circumstances and is capable of making informed decisions about their own lives. (An especially good summary of what this means, written by one such parent who at one time didn’t realize her daughter understood everything she said, can be read here.)

6. Most of us wish you wouldn’t “light it up blue.” I have absolutely nothing against wearing blue. I often do so myself, since it’s my favorite color. However, please don’t wear it in the belief that this signals support for autistic people. The “light it up blue” campaign is a fundraising effort for Autism Speaks, an organization staunchly opposed by most autistic self-advocates.

There are numerous reasons for this, so I’ll just try to summarize the main talking points here. First and foremost, they were not founded nor are they currently run by autistics. They did announce the appointment of two autistic people to their board last December, but this was only after a decade of criticism for their failure to include any autistic individuals within their leadership, and it remains to be seen if these two new appointees will be allowed to serve as anything other than “token autistics” for the organization. Suzanne Wright, the longtime spokeswoman for AS, has repeatedly characterized autistic children as “missing,” and the organization has a history of ad campaigns that demean and dehumanize autistics of all ages. Along with the horrendous film I mentioned earlier, they were also responsible for the “I Am Autism” video back in 2009 that portrayed autistics as ruining the lives of their parents: “I am autism,” an ominous voice intoned. “If you’re happily married, I will make sure that your marriage fails….I will make it virtually impossible for your family to easily attend a temple, birthday party, or public park without a struggle, without embarrassment, without pain…I will plot to rob you of your children and your dreams. I will make sure that every day you wake up you will cry…”

I could describe at length how degrading it is to have your existence characterized in such a way. I could easily go on a long screed about how the most high-profile autism organization in the world spent its first several years of existence funding research into the already-debunked notion that vaccines cause autism, and about how most of its research now aims to find genetic markers that will allow pregnancies that might result in an autistic child to be terminated, so that no more of us burdensome autistics would come into existence. I could write a dissertation-length essay about Suzanne Wright’s awful speech at the Vatican, in which she described us as being so unaware of our own circumstances as to be “free from the constraints of time, free from the burdens of money, free to experience and explore nature in all its glory,” and as having “simple needs and simple desires.” I may do all of those things at some point, but for now, I’ll just direct you to a Tumblr post from the Autistic Self-Advocacy Network, which outlines the main issues for people not familiar with the many Autism Speaks controversies. Or you can go ahead and Google “what’s wrong with autism speaks” – you’ll get quite an eyeful.

7. If you want to know about autism, ask an autistic. There is no universal experience of autism, of course, and there are often sharp divisions on a whole host of issues within the autistic community. Still, it should go without saying that we, both as individuals and collectively, should be viewed as the primary authority on being autistic. Unfortunately, we often wind up being shouted down by people whose only knowledge of autism comes from the erroneous popular conception of an unresponsive, uncommunicative, “missing” child.

Case in point: The other day, I was scrolling through the comments section on another blog when I came across a heated back-and-forth over whether or not autism should be cured (even though, as I mentioned earlier, it can’t actually be cured). One of the posters was a non-autistic who self-righteously proclaimed how sick he was of “extremely high-functioning” autistics who had no idea how “bad” life was for those who “couldn’t talk,” and how hard such profound impairment was on their families. The poster he was berating had already stated that she herself was one of those nonspeaking autistics he claimed to be defending. But he was so sure of his preconceived notions that this didn’t even seem to register with him. To this poster, and far too many others, you’re either not disabled enough to have a valid opinion or too disabled to be able to voice one. That someone who couldn’t speak with her mouth was still capable of clearly and eloquently articulating a point of view that differed from what he already believed autism to be was beyond his grasp.

I wouldn’t presume to know more about Canada than a Canadian, or more about farming than a farmer, or more about Judaism than a Jew. I don’t understand why someone who’s not autistic would presume to have a greater understanding of it than those of us who are, and I especially don’t understand how anyone can justify allowing non-autistic voices to supersede our own when it comes to what the priorities should be or how autism should be discussed.

Many autistics are fully capable of speaking for themselves, and there are plenty doing just that as loudly and forcefully as they can. What I’ve written here are my own thoughts and views, but none of them are unique. All you need to do is follow the links I’ve included in this post, or simply Google “autistic bloggers” and start reading. There are many of us out there, and not only can we speak for ourselves, but we deeply, desperately want, need and deserve to be heard! The slogan of the disability rights movement is “Nothing About Us Without Us.” It is a violation of our rights and our basic human dignity for anyone else to attempt to control the narratives of our own lives. Recognizing that the autism narrative belongs first and foremost to autistics is at the heart of any true acceptance of us.

The Problem with ‘You’ll Find Someone Someday’

Like most of us, I suspect, I struggle with knowing what to say to someone in distress. Especially when their problem is one with which I have little firsthand knowledge, I’m at a loss to find anything genuinely helpful to offer. In such circumstances, it can be really tempting to reach for some generic cliché, but this is a temptation I try to avoid, because I know from painful experience that such a response only makes people feel worse. And for me, there are few clichés more infuriating than “You’ll find someone someday.”

It has many iterations, of course. “Your Mr. Right will come along someday.” “There’s someone special out there just for you.” “God will send you the right person at the right time.” And on and on. The exact phrasing changes, but it’s the same cheap sentiment, and it is absolutely, positively the wrong thing to say to me.

For that matter, it’s pretty much the worst thing to say to single adults in general. It tends to make us want to scream and throw things. If you’re well into adulthood and have watched most of your peers marry and have children while you’re still alone, the last thing you want to hear is a mindless phrase about some mythical person who’s out there somewhere just waiting to sweep you off your feet. Everyone wants to believe in happily-ever-after, but the reality is that not everybody does find someone. It’s not the norm, of course, but we all know people who never find a partner to share their lives with; terms like “spinster” and “old maid” don’t come out of nowhere. And while most people do eventually marry, it’s not something that’s guaranteed to any of us – and if you are that person still single well into adulthood, you know this all too acutely. You don’t want false reassurances about an uncertain future. You don’t want your very real pain to be trivialized.

“You’ll find someone someday” is a catch-all cliché tossed out to people of all circumstances and walks of life, as if a high-school student without a girlfriend to take to the prom were in the same boat as a middle-aged bachelor recovering from the latest in a string of failed relationships. While I don’t believe it’s ever acceptable to assure anyone of a future that’s not guaranteed, there is a huge difference between a frustrated teenager waiting for her first boyfriend and a thirtysomething woman who still hasn’t had that first boyfriend. For that matter, there’s a big difference between a twentysomething who hasn’t had a relationship and a thirtysomething who hasn’t had one, and there’s a big difference between a thirtysomething who’s never even dated and one who’s been in serious relationships that haven’t worked out. When you respond to the specifics of a person’s situation with a one-size-fits-all platitude, you’re not just being unhelpful. You’re being impersonal. You’re telling the person you supposedly care about that you’re unable or unwilling to see them as an individual, with their own particular set of challenges and circumstances.

For me personally, it’s especially infuriating to hear people brush aside my concerns, because they’re not just based on frustration or discouragement. It’s as if people don’t trust me to have any self-awareness in this matter. They fail to see that my sadness comes from careful consideration of my social awkwardness, my lack of meaningful interpersonal relationships, and my inability (with one extremely unfortunate exception) to develop strong emotional attachments to others. They refuse to acknowledge that while yes, it is unusual for someone to never marry, it’s also unusual for someone to reach her mid-30s having never seriously dated. Even if you didn’t know I was autistic, you should at least assume that there was some reason for my lack of romantic involvement thus far, and that that lack has more than a little bearing on my future prospects.

One of the few ways I get regular social interaction is by corresponding with a number of pen-pals. I rarely wrote about my romantic issues prior to China, not wishing to dwell on an especially painful aspect of my life, but it became impossible to put aside after that trip, and I tried pouring out some of my thoughts in my letters. I wasn’t looking for pity, or even real understanding; a simple “I’m sorry you’re hurting” would have been enough. Instead, letter after letter came back with some version of “You’ll find someone someday” included in the response. The thoughtlessness of this made me bitter – and I know for certain that it was thoughtless, because in most of my previous letters, I’d specifically mentioned how much I despised that very sentiment. One correspondent after another left me wondering, Did they even read my letter? Rather than seeing anything individual in what I’d told them, it was as if they’d simply recognized a generic complaint about not having a partner and inputted a pre-programmed response.

Not everyone responded like that of course, but it was a pretty solid majority. One guy not only informed me that “there’s someone for everyone,” but followed it up with “surely you must know that by now,” as if bestowing knowledge on a clueless naïf. As if that weren’t infantilizing enough, I even had one 36-year-old woman assure me that “God will send you your Prince Charming when the time is right.” (She would later tell me that I should feel grateful not to be “tied down” by a spouse. She, of course, was a happily married mom who continually gushed about her “amazing” son and “wonderful” husband.)

There were plenty of replies along the lines of “someday a special person will love you for you,” which, aside from being a little insulting (were they implying I was especially difficult to love?), completely ignored the question of whether this someone was a person I could love in return (or perhaps they were suggesting I take whatever I could get? After all, what could a disabled person like me expect?) Several people assured me that I would fall in love with someone “just when you least expect it” – which, considering what had happened to me in China, was a particularly careless thing to say. And then there were those who tried to describe for me what it would feel like to care about someone in such a way. “You will meet your soul mate, and you’ll know him when you meet him,” wrote one correspondent. “It won’t be lust or a material attraction, your heart will flutter with just the thought of his name, his photo, his voice.” I’d already felt that and much more about David. Was it really so impossible for people to understand how much I’d cared for him? Or how utterly unique that experience had been for me?

I don’t mean any of this to bash my pen-pals, who were and are an incredibly important part of my life. I got similar comments from the few people I’d talked to about this in person. I’m using these examples to show how hurtful it can be when you respond to the messy, complicated, specific circumstances of an individual person’s life with simplistic, generic sentiments. It’s okay to tell someone that you don’t know what to say. Dismissing their pain with a trite cliché – especially one that they’ve specifically told you bothers them – is not okay.

Questions

I remember listening to the radio once when I was very young and asking my mom why so many of the songs were love songs. Ours was a Christian household, and while secular things weren’t generally frowned upon, most of the children’s tapes that I grew up listening to were religious. So the difference between that and the songs on the radio was interesting to me. My mom replied, “Well, it’s an important part of life.” It would be a while before I would grasp just how important.

I’ve heard other people describe what it’s like to go through a significant, life-altering experience and find that it changes their perception of their surroundings, causing them to notice things they hadn’t before. One thing that I only realized when I got back from China was how utterly consumed our society – or is it our entire world? – is with romantic love. It’s not just important, it’s a veritable obsession. You can’t get away from it. And I’m not just talking about sex, although that’s obviously a big part of it. You can hardly turn your head anywhere without seeing happy couples, either in person or depicted in some movie, novel, TV show or advertisement. Our world is positively saturated with it.

It’s not that I wasn’t aware of this before, but I experienced it all in a very different way before China. This has been perhaps the hardest adjustment I’ve had to make, and it’s something I’m very much still in the process of confronting: Once you’ve known what it’s like to really care for another person in that way, how do you go back to living a life without love?

I may not have felt a strong romantic attraction toward anyone specific before, but it’s always been something that I wanted. Sex and love sounded great in the abstract. The idea of sharing your life with another person was beautiful to me. I think in some ways, it appealed to me more than most people because I’d had so little companionship of any kind in my life.

I remember it bothered me in middle and high school to be left on the sidelines while so many of my peers started pairing up, but a big part of that was my old frustration at my social ineptitude, that familiar feeling of being on the outside looking in. It was in my twenties that my lack of romantic experience itself really started to bother me. I’m the oldest of four, and two of my brothers were married before they’d finished college. I was a bridesmaid in both of their weddings. The second wedding in particular was difficult. I wanted to be happy for my brother and sister-in-law, but it wasn’t easy to stand there watching my 21-year-old brother tie the knot while I, at 26, had never even been on a date. I remember thinking that I wasn’t sure I could go to any more weddings, and as of yet, I haven’t.

So this was a sore point for me well before China. The hole in my life was significant. But it didn’t loom at the center of my life. The pain was real, but most of the time I was able to push it aside. It was like a bad bruise – tender, sharply painful if prodded, but not usually overwhelming.

In China, that wound was torn wide open, exposing raw nerves and leaving a giant, gaping hole that became the focal point of my life. Most people know what it’s like to care about someone who doesn’t return their affections, but usually they’re able to get over it eventually because they know someone else is likely to come along. But I had never known what it felt like to be attracted to another person before this, and it’s nearly impossible to overstate the impact of experiencing such feelings for the first time in your late twenties. I’d had nothing to prepare me for it. More importantly, the fact that it had never happened before made it impossible to imagine it ever happening again. Six years on, I still can’t see myself ever feeling like that about anyone else, much as I desperately want to.

I know it’s probably tempting to see what happened in China as hopeful. I’ve been asked more than once why I don’t see it as a sign that I can, in fact, fall in love. I wish that were the case, but what you have to understand is that what happened was so completely different from anything I’d ever experienced before that it drove home for me how terribly unlikely it is to ever happen again. I would give anything to be wrong about this, but even after six years, I still feel deep in my gut that this situation was the exception that proved the rule.

One of the first things I noticed as a result of it was that I experienced music differently than I had before. Suddenly, song lyrics made sense. I was surprised to find myself actually relating to lines that before would have struck me as sappy or overwrought. I’m not even sure now how I experienced such lyrics before – did I find them cringe-inducing? Did I scoff at them? Maybe I didn’t usually think about them much at all; I don’t tend to judge songs primarily by their words. Now they jumped out at me.

After I saw the astounding news that David and his girlfriend had broken up, I became somewhat obsessed with wondering how two people managed to come together. Never mind questions of how to keep relationships going – how did they even start to begin with? Not having any personal experience in this matter, I turned to logic to try to puzzle it out. Of all of the eligible people in your respective lives, what are the odds that the person you’re interested in might also be interested in you? Not great, I had to figure. So how did two people ever develop a mutual attraction? Movies and novels always depicted it as something that happened simultaneously for both parties, but when I thought about it, that didn’t seem realistic. Did people simply decide to give each other a chance?

Of course, at the heart of these questions was the wish – sometimes the hope – that David would give me a chance. I knew I had a lot of strikes against me on the surface, my social awkwardness chief among them, but I also felt I had a lot of great qualities, too, though perhaps some of them were only apparent once you got to know me. But David and I weren’t really strangers at this point; we’d spent part of nearly every day in each other’s company for over three weeks while in China, albeit usually as part of a group. Might he have seen enough good qualities in me to at least consider me a possibility?

As it turned out, he didn’t, and I never did figure out answers to my questions about how relationships began. What I can say is that my thoughts over the following years about human connection and my lack thereof did cause me to wonder if maybe the answers were simply beyond me. Maybe mutual attraction seems so mysterious to me precisely because I’m not wired to connect with others. Perhaps you need to be on the grid to understand how two people come together.

In any case, and improbable as it seemed to me, most people do get to experience mutual attraction with another at some point. Even if they never manage to have a relationship that lasts until death, most people do have at least some romance in their lives. So why couldn’t I? Even before I knew for sure that David wasn’t interested in me, I feared that this was an experience I would never have. This wasn’t itself a new fear – I’d suspected for as long as I could remember that I would probably never find a romantic partner – but now I had a better sense of what I was missing. Now I knew what it was like to really care for another person, and I could imagine how incredible it would be to actually experience being with that person on a daily basis. I imagined waking up next to him, sharing meals with him, curling up together to watch a movie. I know this will probably sound ridiculously corny, but it’s true – it seemed extraordinary to me that humans were allowed such joy in their everyday lives. To spend so much time with someone whose company you so thoroughly enjoyed…I couldn’t – I can’t – imagine anything better. And the prospect of never experiencing that was devastating.

I soon began to hate being around couples. I would see two people gazing at each other with palpable delight, and every time it felt like a sucker punch, because while I knew what it was like to feel that way about another person, I had no realistic expectation of ever seeing such delight mirrored back at me. If I saw an overly affectionate couple on the subway, I would change cars. I skipped through romantic scenes in movies and TV shows. I couldn’t stand to listen to most music – aside from the fact that love was such a frequent topic, my emotions were just too raw for it. I grew bitter at everyone who was married, or in a relationship, or who had ever been in a relationship, believing that they would never be able to understand how lucky they were to have experienced that part of life. And by the way, it’s a belief that has been roundly confirmed these past six years.

Imagine for a moment that you were born completely color-blind. The world, as far as you can tell, is made up solely of varying shades of gray. Sure, you know different colors exist, because people talk about them constantly. You think it must be truly wonderful to experience the world in this way, but since you never have yourself, you conceive of color as simply an intensification of the grays you’ve always known. Now imagine that somehow, you briefly get a glimpse of color. It’s incredible, different and more amazing than anything you could have envisioned before. It’s so astonishing, in fact, that it seems extraordinary to you that humans are even allowed to experience such beauty.

But this glimpse you’re given, while it’s enough to make you understand what you’ve been missing far more deeply than you ever could have before, isn’t enough to allow you to enjoy any of that beauty yourself. And you’re forced to carry on with a life lived only in shades of gray, tormented by the knowledge of the beauty you’re missing out on.

As I said in my initial post, I’m doing much better today than I was in the first few years after China. Most days, in fact, I do pretty well. I can enjoy listening to music again, though it took me more than five years to get to that point, and there are still some songs I’m better off avoiding. Seeing happy couples doesn’t bother me quite to the extent that it used to. There are a lot of things in my life that I enjoy and am genuinely excited about. I wouldn’t say I experience joy, at least not according to my conception of the term, but that’s kind of okay now. It’s not that that hole in my life is any smaller, but I’ve begun to find ways to work around it somehow.

It’s a struggle, though, and making sense of it all remains an ongoing effort. How can I best live under the circumstances of my life? I’m still trying to find an answer to that question.

Unconnected

In his short story “The Semplica Girl Diaries,” George Saunders imagines a world in which the ultimate sign of wealth is young women from developing countries hung above people’s yards as living lawn ornaments. The women are suspended by an invisible “microline” which is threaded through their brains in a supposedly harmless procedure. The microlines of all the women in a display are connected together and to the apparatus from which they’re hung. There they stay, night and day, with periodic food and bathroom breaks.

The central character in the story is a middle-class husband and father who yearns to give his children all the trappings of wealth their more affluent friends enjoy. When he unexpectedly comes into a bit of money, he and his wife blow it all on lavishly redesigning their backyard, complete with a display of four SGs. Their sensitive younger daughter, Eva, is disturbed by the use of human beings as decoration, but her parents insist that it doesn’t hurt the women and is actually to their benefit because it allows them a way to provide for their impoverished families back home. Eva is not reassured, and at the end of the story, she sneaks outside in the middle of the night and sets the women free.

Her parents are panicked, because their SGs were a rental and the family is now on the hook for the loss. Things for the young women aren’t so great either. They’re no longer on display, but they are illegally on the run, lacking any money or resources and with no place to go. Worst of all, they’ve still got that microline in their brains, holding the four of them together as indelibly as Siamese twins. They can’t even run fast, because any sudden jerks in the line could leave the person being jerked with brain damage. They may now be able to move about with greater freedom, but they’re still trapped in many ways.

Clearly, being attached to other people by an invisible cord through the brain is a very bad thing in this story. Yet it’s an image that has stayed with me precisely because it comes close to what I seem to lack. When observing other people, I often feel like there’s an intangible link of some sort connecting them, and I somehow missed getting wired up. They’re all connected, while I’m off the grid.

A year and a half after that first disastrous trip to China, I found myself in Beijing again. I hadn’t particularly wanted to go there, but I’d gotten the opportunity to travel to North Korea, something I wasn’t about to pass up, and the only way in was through China. I arrived with a stone in the pit of my stomach. It felt incredibly weird to be once again entering the country where my entire emotional landscape had been rearranged. It actually ended up being a good experience to be there again, and I’m now very glad to have had it. I now have memories of the place completely separate from my first time there.

Unlike my first China trip, this group consisted of students and professors of all different ages and from all over the world. Most of us didn’t know anybody else. We all met each other over dinner that first night, and we spent the next day learning a few basic Korean phrases and exploring a bit of Beijing. Later that evening, I stood with several other students in the hotel lobby as they discussed what to do that night. Not being much of a nightlife person, I politely declined to join them. What I most remember though was the way several of them agreed on what to do. They didn’t need to completely articulate their suggestions. It’s not even that they were finishing each other’s sentences – they were simply on the same wavelength somehow. After just one full day in each other’s company, they were already in sync. I just stood there thinking to myself, How do they do that?

Since I was young, long before I had a label to place on whatever it was that made me different, I’ve pictured myself cut off from others by an invisible barrier. I wanted to reach out to the people around me, and tried every way I could find, but I could never break through – could never even seem to communicate my desire to connect in a way that would make it understood. I conceived of my isolation as the result of something that had been added, something extra that most people didn’t have that was getting in my way. This idea still fits, but as I got older, I more and more came to see it as something that was missing. And it wasn’t just my lack of social skills. It went deeper than that.

I’m fighting the urge to tread lightly here. There are a lot of ignorant, ugly stereotypes out there about autistics – that we’re emotionally distant, self-absorbed, lacking in empathy. I want to make it clear that what I’m describing is not a lack of concern for the well-being of others. Nor should my particular experiences be taken as representative of how all autistics experience interpersonal relationships. As I explained in my last post, a diagnosis of autism is based on outward characteristics, not a person’s inward emotional life. While I suspect some autistics do have similarities to me, there are others who would insist that things are vastly different for them. So I feel a bit hesitant with this, not wanting to inadvertently compound anyone’s ignorance about autism, but I began this blog with the aim of being as candid as possible about my own experience, so here goes.

Put simply, I don’t have the same emotional reaction to people that most people seem to have. I care about people – sometimes it seems I actually care more than most, at least where empathy and compassion are concerned – but I don’t seem to have the same degree of emotional need for specific people that most people experience. This manifests itself most noticeably in my lack of romantic attraction to others. As I mentioned in my first post, prior to that trip to China when I was nearly 28 years old, I’d never known what it was like to feel drawn to another person. It’s still a mystery to me how people can feel attracted to someone they don’t know. The strong emotional impact one person can have on another based solely on physical appearance strikes me as incredibly weird. I don’t say that in judgment; it’s just genuinely baffling to me.

But it goes beyond romantic attraction. I don’t tend to feel strong emotional attachments to others under any circumstances. This is not to say I don’t appreciate the people in my life who care about me. I do. But at the same time, I can’t completely respond to them in the way they often would like.

This was a realization I came to gradually over a number of years, but it was in my early twenties that I began seriously trying to puzzle out what precisely was different about me. I worked in Lower Manhattan for several years, and during that time I tried to be involved in the rebuilding process at the World Trade Center site. This turned out to be a colossal waste of time because the process was rigged by then-Governor Pataki, but as a result of it I spent a lot of time around some of the 9/11 family members. I felt terrible for what they were going through, but I also found them fascinating in a way. I would have expected them to be heartbroken, but what I found were people who experienced their entire lives as transformed by their loss. From a purely logical standpoint, this made no sense, as the bulk of what made up their lives remained. They still had their homes, their jobs, and all the other people they loved. Yet losing even one person out of many was an experience shattering enough to dramatically change the way life looked to them – and it remained changed years after the fact.

I get it now, but at the time this didn’t make sense to me. I felt compassion for them because I knew pain and could therefore empathize with others who were suffering, even if I didn’t fully understand the source of it. For that matter, I felt plenty of anguish myself over the enormity of what had happened – the sheer number of lives ended, the horrifically violent way in which they died. But when observing these grieving spouses, parents, children, siblings and friends, I realized that I wasn’t, and had never been, emotionally close enough to another person that I would be so devastated if I lost them. So while I was sympathetic to these families, I also sometimes felt an odd kind of jealousy. It must be truly special to be that connected to someone, I thought, if the loss of that connection changes your life so profoundly.

As I turned this over in my head, I came to the conclusion that most people love each other in two ways. There’s the compassionate kind of love, the love that causes you to hurt when the other person hurts, to care about their pain and wish for their well-being. That kind of love isn’t a problem for me. While I’m far from truly selfless, I have as much capacity for compassion as most people, maybe more than most. Then there’s the other kind of love – love that’s, for lack of a better word, selfish. Not selfish in the sense of wrong or harmful, but selfish in the sense that it’s for oneself. It’s the love that looks at another person and says, I need you to be in my life. I need you specifically, not for your own sake, but for me. The way I’ve phrased this may make it sound like I consider this type of love to be less noble, but it’s precisely this selfish love that bonds people together and builds relationships. And it’s precisely this love that I don’t seem to feel, at least not in the same way I’d observed in the 9/11 relatives, and in most other people I’ve known.

At the time I was thinking through all these things, I was in contact with a guy I’d met through the rebuilding process. He also had some involvement with a local organization that aided developmentally disabled adults. We had several conversations about aspects of my autism, including my growing realization of my emotional isolation. He posited that it was due to having had a lot of negative experiences with people. He likened it to his own aversion to dogs stemming from being attacked by one as a child. It’s actually a pretty good analogy, and I’ve used it myself to explain why I have such a hard time trusting people. But while I saw his point, I didn’t think it was entirely accurate. After all, there were people who’d suffered horrific abuse, mistreatment far worse than anything I’d ever endured, who still managed to build strong friendships and romantic relationships. So why couldn’t I? Trauma was undoubtedly a factor, but it couldn’t be the full story. I had no evidence to offer as proof, but I knew in my gut that my lack of connection was due at least in part to deficits hardwired to my neurology.

This same person also said that the very fact that I wanted to form close attachments to others suggested I probably could. At the time, I allowed myself to entertain the thought that he might be right. Now, it sounds as ridiculous to me as telling a blind person that a desire to see indicated an ability to do so. I don’t think I can emphasize this enough: my lack of connection to people, romantic or otherwise, is not my choice. I would give anything in the world to be able to experience what it’s like to be so close to another person. But I can’t.

There is one positive aspect to this. I’ve always been very independent. I’m my own person. For all the stress my disabilities caused, my parents never had to worry about me taking up drinking or smoking as a teenager, because I was impervious to peer pressure. As an adult, I don’t need to wait around for friends to be free to enjoy my own activities. I’ve frequently gone to movies, restaurants, concerts, amusement parks and sporting events by myself. I even travel on my own. I don’t need companionship to have a good time doing these things, so I’m not dependent on the willingness and availability of anyone else to do them. I know people who can’t even watch a movie alone, and I think that’s sad. It must be terrible not to be able to enjoy your own company.

The thing is, these things I’m able to enjoy on my own? I’m always doing them on my own. And that can be hard. I’m grateful to be able to find enjoyment in activities without the benefit of a companion, but I wish I didn’t always have to. I deeply crave companionship. Someone to talk with, laugh with, share memories with. I wish I knew how to build relationships with people, romantic and otherwise. I wish I could feel comfortable doing social things with people, instead of anxious and insecure. I wish I could enjoy – truly, deeply enjoy – the company of another person. I don’t need to be Miss Popularity; it’s okay if I’m never the most socially adept person around. Connection, companionship, the ability to find joy in another’s presence – that’s what I’ve always wanted. So many people take these things completely for granted, not understanding that they don’t come naturally to everyone. I wish with all my heart it weren’t all so hard for me.

A couple of years ago, I was walking across the campus at Columbia, not thinking about much in particular, when I was struck by something I had never been fully cognizant of before. Nearly everyone I saw, regardless of what they were doing or where they were going, was with at least one other person. It didn’t matter if they sitting around hanging out, eating lunch, looking through schoolwork or simply walking across campus as I was; regardless of the specifics of the activity, almost everybody was doing it as part of a group. They made me think of atoms and chemical bonds. Most atoms are reactive, combining with other atoms to form molecules. The exceptions are the inert noble gases, which move among the other elements but don’t normally combine with them. They exist in nature as individual, solitary atoms. I saw myself as a noble gas. Other people naturally grouped together, while I moved about them, physically nearby but emotionally alone.

Whichever metaphor you choose – barriers, invisible cords, noble gases – they all ultimately mean the same thing. I don’t form the deep emotional connections to others that most people do. I’ve never felt myself even capable of forming such a strong connection, with one exception. That, of course, was what happened on that first trip to China six years ago. Looking back on it now, it seems utterly bizarre that it happened at all. It was so completely different from anything I’d experienced before, or since.

But there was something else, something that I’m not sure I can ever adequately describe. In the midst of all the swirling emotions, for the briefest amount of time, I dimly felt a sort of…potential. I’m not sure how else to describe it. I sensed that the way I felt about David, if only it had been shared, had the possibility of making other kinds of connections available to me as well. The way I thought of it then was that I’d been opened up. The romantic attachment I’d unwittingly developed toward him felt like it could have been a gateway toward deeper non-romantic bonds with other friends and family members.

Simply caring for him as I did hurt, so it wasn’t enough, but it was as if the barrier that usually seemed to cut me off from others now had a hole I could reach a hand through. And I’ll never know if this was the case, but my feeling then was that I could have gotten through that hole completely had David chosen to grab hold of my hand.

He didn’t, of course, and I don’t blame him for that. I do blame him for some especially thoughtless things he did much later on, but I never faulted him for his lack of romantic interest in me. I know as well as anyone that you can’t force yourself to feel what you just don’t feel. But I hope I can be forgiven if even now I occasionally find myself wishing things could have turned out differently.

My Autism

In my first post, I introduced you to one of the two main topics I hope to explore with this blog. I thought it’d make sense to give you a brief introduction to the second topic now.

First of all, you’ll note that the title of this post isn’t just “Autism,” but rather “My Autism.” This is because autism is an extremely subjective condition, and you shouldn’t assume that what being autistic means to me will hold true for everyone. Of course, all medical conditions – all life circumstances, for that matter – are inherently subjective, as no two people will experience anything in exactly the same way. But autism is especially so, because it can effect things like your sensory perceptions, your ability to communicate with others and your emotional responses to the people around you – in other words, the very mechanisms you use to understand and interact with the world. It’s hard to imagine anything more subjective than that.

It’s also worth keeping in mind that the word “autism” doesn’t refer to a specific medical condition, but rather to a collection of symptoms, none of which is present in every single autistic person. This makes it different than something like, say, diabetes, which is defined as a condition in which a person’s pancreas makes either no insulin at all or not enough. That can lead to certain distinctive symptoms, but it’s the underlying physiology that defines the term, not the symptoms themselves. We don’t know yet what happens physiologically to cause the outward signs of autism, and a person is given a diagnosis not through a blood test or other medical procedure, but after they’ve been determined to have a certain number of the traits that characterize the disorder. As a result, no two autistics will have the exact same strengths or disabilities. Some autistics, for example, have very severe verbal impairments (though they often can still communicate if given the right tools), whereas others may not seem affected in that area much at all. Some experience a lack of attachment to other people; other autistics are very socially engaged, and even marry and have children.

I don’t mean to say that there aren’t common experiences that many autistics share, because there certainly are. But when you’re part of a community that society tends to think of as “different,” people often view you as a monolithic group, with one person’s experiences and viewpoints assumed to be representative of everyone’s. I would be doing other autistics a tremendous disservice if I didn’t make it clear that I in no way intend to speak for all of us when describing my own personal experiences.

So what is being autistic like for me? I’ve been asked this question before, and it’s tricky to answer because I’ve always been autistic, I’ve never known anything different. Could you easily describe for me what it’s like to not be autistic? It’s not always obvious which of my traits are connected to autism; I have no way of knowing what I would have been like if I hadn’t been born autistic.

Still, I’ve been able to observe many things over the years that seem to be different for me than for most people. This is an oversimplification, but you could probably categorize them into three groups: social, sensory and motor disabilities.

The social aspect of autism is probably the most well-known, though that doesn’t mean it’s well-understood. It can vary tremendously, with some people struggling to speak verbally while others appear little if at all affected. I myself am actually capable of verbally expressing myself quite well, though of course it’s impossible to know if my verbal skills would have been better had I not been autistic. Where I am significantly impaired is in the realm of nonverbal communication. This may not sound too serious, but keep in mind that many scientists who study human communication believe that over half of it is performed nonverbally! Think about how difficult it would be to interact with people if you routinely missed more than half of the information others believed they had conveyed to you. And to make it worse, nonverbal communication is often less deliberate, so even after I’ve explained that I’m autistic and won’t necessarily pick up on things that they don’t explicitly say, people still get frustrated and angry with me for not grasping everything they believed they had told me.

This has been a deficit throughout my life, which means that from the time of infancy, I’ve been missing out on the majority of human communication. That has major social implications, as this is primarily how young children learn socially appropriate behavior. When I was younger, I had a terrible time around other kids, because I didn’t understand how to play with them. I kept doing things that made them mad, and then adults were also always angry with me, and usually I couldn’t understand why. I spent much of my childhood confused and scared, and grew into a very angry, bitter kid who dreaded being around people. I’m not as angry now as I used to be, but the prospect of spending time around others still often causes knots to form in my stomach.

When I was about 9 or 10, I started to figure out that the reason things were so difficult for me with other kids was that they understood things about how to behave that I didn’t – that there were many unwritten rules you were supposed to follow that I had never learned. So I started watching my classmates very closely, observing how they acted in different situations and trying to learn from that. I majored in cultural anthropology at Columbia, and it was amusing to read about the methods ethnologists use to study their subjects. I’d been employing a crude version of the “participant-observer” method of anthropological study since fifth grade, not to learn about someone else’s culture, but to try to understand my own.

Whenever possible, I simply copied what my peers did. I did this so much that when I was 12, I went through a period in which I seriously worried I was somehow losing myself in the process – I wondered if I still had a distinct personality of my own, or if I was now just a combination of the mannerisms of my classmates. I wasn’t sure I still knew who I really was.

I made it past that little identity crisis, and I got to the point where watching other people closely became automatic. I appear much more high-functioning today than I did as a child or teenager, but this is the result of hard work and continual deliberate attention. There are a lot of things I still have trouble with today. For example, I always wonder how much eye contact I should make when speaking to another person. I know that too little would suggest to them that I’m not really paying attention to what they’re saying, whereas too much might make them uncomfortable. I’ll usually make eye contact with a person for several seconds before briefly looking away, but this is something I have to do deliberately throughout a conversation. I also have to carefully watch their facial expressions, and carefully monitor my own, as well as their posture, how fast and loud they’re speaking, and many other aspects of communication that I know I’ll miss without deliberate attention; and I have to stay mindful of myself to make sure my own gestures and tone of voice are also appropriate – all the while trying not to lose the thread of the actual conversation! Partly for this reason, in-person interactions of any kind remain daunting and often exhausting for me.

Somewhat ironically, my need to closely pay attention to the aspects of nonverbal communication that most people grasp automatically means that while I still miss much of what most non-autistics get, I’m often more aware than most people of those things I do pick up on, precisely because I’ve had to do so consciously. In a lot of ways, it’s like learning a foreign language. When you study a language, you have to learn about things like tense and case that you never think about and are usually unaware of when it comes to your own language. Yet you’re still ultimately at a disadvantage, because while most people can eventually learn to speak a second language quite well, the process of doing so is much different from the way you learned you native tongue; as a result, you will never be able to speak a second language quite like a native speaker, no matter how proficient you become.

I’ve been able to learn many aspects of nonverbal communication and proper behavior through careful study, but the process by which I’ve learned it is vastly different from how most people learn these things as very young children, and there will never come a time when there’s not an “accent” to my behavior. I will always be socially awkward. There will always be many things that I won’t be able to pick up on. I will never be able to fully pass as a “native” when interacting with others.

These social difficulties alone would complicate my life a great deal. Unfortunately, there’s much more to my autism than that. Like many autistics, I also struggle with sensory processing issues. Any of the five senses can be affected; some people are hypersensitive to bright lights or strong smells. My problems are primarily with sound and touch.

In some ways, my hypersensitivity to sound is less severe than for some autistics. There are some who find any kind of unusually loud sound unbearable. For me it varies tremendously depending on how pleasant the sound is. I can’t bear to be around loud smoke detectors, but I’m completely fine at rock concerts. Unfortunately, unpleasant noises are everywhere. In particular, I have a hard time with sudden, unpredictable loud sounds, because I have no way to brace myself for them, and because I can’t stand being startled in any case. I can manage a public fireworks display because the sounds of the explosions reach me at a predictable interval, but I can’t handle the noisy home fireworks that are so popular these days. Thunderstorms are extremely difficult, because there’s no telling when lightning flashes how long it will take for the thunderclap to arrive or how loud it will be when it does. I can’t be around inflated latex balloons, at all. And if you see me out walking while you’re out driving and get the urge to honk at me in greeting, don’t. Just don’t.

I’m also extra sensitive to touch. Again, this isn’t as bad as what some autistics have to deal with, but it can still be pretty distressing. I often pull or tug at my clothing. I know I look a little odd when I do this, but I just can never get comfortable. I mean, seriously, you try spending every day in clothes that constantly irritate you, the way that all clothing does for me. In particular, I absolutely cannot wear turtlenecks, and some types of fabric make my skin crawl. And you don’t even want to get me started on how difficult it is to find an even slightly comfortable bra. There are other aspects of my sensitivity to touch that I’m not going to address here, because I’m planning to devote an entire post to it at some point. Suffice it to say, the social implications are numerous.

I mentioned at the start of this post that it can be difficult to know which of my attributes are autism-related, since I’ve never not been autistic. One thing that I’ve only very recently begun to realize is that, in addition to sound and touch, I may have some hypersensitivity when it comes to taste. I’ve always needed to drink a lot of water because I can’t stand having tastes linger in my mouth. Since they always do and are impossible to get rid of entirely, I frequently take swallows of water throughout the day. I’ve known for a long time that this was a bit unusual, but I figured I had a body that just needed a little more fluids than normal. I mentioned to my mom recently that I like to have dessert before completing the rest of my meal, so that I still have something savory left to cut that cloying sweetness from my throat. She replied that she likes having that taste linger, which got me thinking that there may be a hypersensitivity aspect to it for me. I don’t know if many autistics have taste issues, but I’ve begun to suspect that I do.

It’s hard enough to be socially awkward. That I’m often visibly distressed by loud noises makes it even worse. And of course, I have to be extremely uncoordinated on top of it all. Sometimes I think that whatever physiological mechanisms are behind autism were specifically designed to cause as much humiliation as possible. Many autistics have limited motor skills, and I’m no exception. It’s not that I can’t walk or use my hands. If you saw me just walking along, you wouldn’t think there was anything unusual about me. But if a task requires a greater degree of coordination than that, it becomes difficult, even impossible. I have long hair, but I never do anything with it other than tie it back in a ponytail, because that’s all I can manage. I have a very hard time wrapping gifts, and avoid doing so at all costs, because the end result will almost certainly be a package that looks like it was wrapped by a little kid. And I really can’t perform any task that requires me to do different things with different limbs simultaneously.

What makes it especially frustrating is that most people’s conception of motor disabilities doesn’t include problems like these. In many people’s minds, you either can move your arms and legs, or you can’t. So they might see me walking on a level, smooth surface, and I assume that I should have no trouble strolling across a swinging bridge – I caught some grief for not being able to do this on a trip to Ireland last summer. Or they see me counting money, as I did every day when I worked in retail, and don’t understand why I can’t also tie a pretty bow on their package. In elementary school, there were a few times every year when we’d have to climb a rope in gym class. We’d all line up, and in front of all the other kids, be asked to climb as high as we could. By 3rd or 4th grade, many kids could reach the top of the rope, even the unknotted one. I however could never get off the ground on the knotted rope, and even now, when I think of my gym teacher standing there urging me to “just try a little harder,” I want to scream at him that I was trying, damn it! I dislike the tendency to separate physical and mental disabilities, as if the brain were somehow not a physical part of the body, but even by that narrower standard, I am physically disabled. I have all five senses and I’m able to walk and use my hands, and I don’t take any of that for granted. But I do have sensory and motor disabilities, even if they’re not immediately apparent to observers.

Still, it’s the social limitations that are most distressing for me. I’m grateful to be able to walk, but if I had the option of giving that up in exchange for more meaningful connections with other people, I’d do so in a heartbeat.

Introduction: In China, and After

I’ve been kicking around the idea of starting a blog for a number of years now. I have a lot of interests, any one of which would be a worthy topic for me to explore in this way, but there are two primary subjects that motivate me now. One is that I’m autistic. Yes, I know there are plenty of autism blogs out there, and many of them are probably far more informed and better written than any effort of mine will be. But in conversations I’ve had with people in my everyday life – some of whom have no particular connection to autism except through me – I get the feeling that I still have a perspective unique enough to be worth offering. At the very least, I can speak about issues that many non-autistics don’t have much knowledge of, and perhaps I can offer some insights about topics that you may be unfamiliar with.

So that’s one thing. The second topic involves something that happened to me several years ago, which I’m still trying to make sense of today. The two subjects are inextricably linked, so I don’t think it out of place to have one blog devoted to both. In fact, I couldn’t fully discuss one without addressing the other.

Six years ago, I was about to finish a two-year program at a community college in New York City. (I later transferred to Columbia University to complete my undergraduate studies.) I had one requirement left to graduate, and to fulfill it I signed up for a short-term study abroad program in China. It was a 3½-week trip over the winter break and included students from all over New York. The group was large, over 70 in all, though I didn’t know any of them ahead of time. At nearly 28, I was significantly older than most of them, which I had expected. I was a returning student after all, and was used to being one of the oldest students in most academic settings.

Still, there were a few others who were closer to me in age, and I found myself hanging out mainly with them. There was one guy in particular – I’ll call him David – whose company I enjoyed right from the start. To me he seemed intelligent and incredibly nice, and I enjoyed his fun, somewhat goofy sense of humor. 10 days into the trip, I realized that I would have liked to have had him as much more than just a friend. This was a problem, because, as I and everyone else on the trip knew, he had a girlfriend of over seven years waiting for him back home.

To say this was a hopeless situation is probably stating the obvious. The final two weeks I was in China were pure agony. I was embarrassed to admit even to myself how much I liked him, but the truth is, I was pretty crazy about this guy. I thought he was adorable, and it made perfect sense to me that by his mid-twenties, he’d managed to find and keep a girl interested for so long. I thought about it constantly. I knew I had to be realistic about the situation, but I sometimes gave in to fantasizing that they would break up and he’d turn his attention to me. I came up with all kinds of scenarios in which that happened. It was ridiculous, of course, and each time, I’d eventually force myself back to reality. I’d remind myself that he carried a picture of himself and his girlfriend in his wallet. That he once said they might get married after he finished school. Even so, my mind could not let go of the idea that their relationship was on the brink of collapse. And so this became a cycle – illogical hope followed by devastating return to reality – that repeated throughout the last weeks of the trip.

If I sound like I was obsessed, well, I probably was. Oh, I tried to take my mind off of it. I tried to focus on the things that had previously held my interest, which shouldn’t have been too hard, as I have always loved to travel. But all the novel experiences that ordinarily would have enthralled me left me feeling empty. I love exploring new cities, but if I went for a walk around the neighborhoods near our hotel, all I could think about was how much more fun it would have been if David had been with me. If I was in a restaurant sampling a dish I’d never tried before, I wondered if it was something David would have liked. When I tried reading in my room, I couldn’t stand being cooped up; when I went out with some of the other students, I felt no enthusiasm for the activities if David wasn’t there.

At this point, you may be wondering what my autism had to do with any of this. After all, this type of situation happens to people all the time, regardless of any disability. Explaining what made it extra challenging for me would take quite some time (and is in fact a major part of what I hope to explore with this blog), but perhaps the most obvious example would be my awkwardness in dealing with interpersonal relationships. I’m not very socially adept in the easiest of circumstances – and nothing about this particular circumstance was easy. I felt incredibly self-conscious around David, certain that he could see right through me and knew exactly what was going on. And there were things about his behavior toward me that did seem to change in the final days of the trip, which even now are hard to accept as merely a matter of perception. I realize that most people would feel awkward and self-conscious in a situation like this, but my inability to read social cues magnified it all for me.

This only added to my distress. At first I had tried to keep all of this to myself, but I did eventually confide a little in my roommate. I just couldn’t keep everything bottled up anymore. I downplayed it though. If I wound up crying myself to sleep at night (a not infrequent occurrence), I forced myself to do so silently, too embarrassed to let her know how upset I really was. Through it all, there were two simple words – seven years, seven years – constantly pounding through my head like a drumbeat. And there wasn’t a damn thing I could do about any of it.

The trip ended and we all returned to our own lives scattered throughout the New York area. Trying to get back into my normal life was surreal, and now I felt even more depressed because I didn’t get to see David any more, and I missed him. There just wasn’t anything I could do to make myself feel any better. I admit I became a bit of a Facebook stalker, frequently checking his profile page to see if he and his girlfriend were still together. And yes, I was fully aware of how pathetic that was.

 This all happened several years ago, yet it doesn’t take much effort to recall how I felt then. My memories of that time are so vivid. So if I’ve sounded somewhat emotional in my recounting of it now, that’s one of the reasons why. Another reason is that I want you to have a little sense of how I felt 16 days after coming home, when I logged onto Facebook and saw that David and his girlfriend had broken up.

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So what happened next? Well, that’s at the heart of much of what I hope to explore in this blog. On the surface, not much did ever happen. I confided in a few other people from the trip after that, and they all believed that David hadn’t actually known how I felt about him, my own certainty to the contrary notwithstanding. Regardless, I obviously knew I couldn’t reach out to him right away. I had no idea then what the circumstances of the breakup were, but even if it was something David had wanted, I knew the ending of such a long-term relationship had to be painful for him. It’s never a good feeling to know that someone you care about is hurting, no matter what your own angle is.

I saw David a few times over the following spring and summer, mostly as part of a group. At one point I did manage to get up the nerve to ask him if he’d like to hang out sometime, and we had lunch together one afternoon. We ended up sitting and talking for almost three hours, but I couldn’t bring myself to tell him how I felt. (That darn social awkwardness again.) Eventually I allowed a mutual friend of ours to do so. According to this friend, David thanked him “for bringing it to my attention,” but said he was more comfortable with me just as a friend. To this day I don’t know for sure what he knew before that conversation, or if he was being sincere at the time that he saw me as a friend. I did still make an effort to keep in touch with him after that, and we would hang out occasionally for a while, but you can’t build a friendship with someone if you’re the only one who really gives a shit. It’s been a few years since we last spoke.

It’s been a rough road since China, but most days at least, I am doing much better now. Still, to say that I’m still affected by this would be a tremendous understatement. The reasons are far too complicated to be dissected in this post, but it basically comes down to two very painful facts. The first is that I’m 33 now, and I have never had any kind of romantic relationship. Given what I’ve already said about my general lack of social skills (and the fact that many people don’t even recognize autistics, or disabled people in general, as sexual beings), this may not come as a surprise. But there’s a deeper reason why it’s never worked out for me, and it’s the second difficult fact: before China, nothing like that had ever happened to me before. I don’t just mean that I’d never before cared for a guy who had a girlfriend. I mean that I’d never felt like that about anyone, at all. And I’ve spent a good chunk of these last six years trying to figure out why.

There’s never been a time in my life when I haven’t been socially isolated in some way. I’ve often felt as if there were a barrier between myself and everybody else, and much as I longed to push through it, I’ve never been able to fully do so. For most of my life I attributed this entirely to my lack of knowledge about how to build relationships with people. I still recognize that as a major problem, but what my experiences in China and in the years since that trip have taught me is that my emotional reactions to others – and lack thereof – also play a major role in my isolation. I’d known for a long time that I didn’t bond with people in the same way that most of you do, and this was something I’d become increasingly concerned with throughout my twenties. But before China, I’d never experienced anything different. Before I met David, I had no idea what it was like to feel drawn to another person.

I decided to call this blog “A Life Apart” to reflect the fact that I feel myself perpetually separate from others, emotionally if not always physically. Obviously I’m not a hermit; I lived in New York for 13 years, I love to travel, I participate in many activities that other people also participate in. I’m not hiding out in some remote cabin, shutting myself off from the world. And I don’t lack for people who genuinely love and care for me, even if I can’t always respond to their love in quite the way they would have liked. Yet I often feel emotionally distant from others, like I’m able to see them but can’t actually make a connection. And so a big part of what I hope to explore with this blog is human connection, what it’s like to live without it, and what I’ve learned about why I’m living without it.

I also hope to write more generally about living with autism, including my thoughts on societal challenges faced by autistic and disabled people – which often also come down to problems of isolation, albeit for very different reasons. And perhaps there will be specific topics I’ll want to address that I haven’t even thought of yet. I’m not entirely certain what direction this blog will ultimately go in, though I do hope I’ll have the discipline to keep it going for a while.