I’d love it if you’d come by and add your comments to the conversation!

His writing immediately spoke to me, in part because I’ve lived my life from the perspective of an anthropologist in a foreign culture, and in part because I recognize so many of my own experiences in his words. I am not very far into the book, but what I’ve read so far has sent my thinking in all kinds of new directions. I am being careful not to read too much at a time without articulating my thoughts on it; the book is so rich that I could lose track of all its implications if I didn’t pause to reflect.

Among the many passages that I’ve found powerful is the following, which describes the social role of a person who becomes ill:

“A person’s ordinary social roles — mother, father, lawyer, baker, student, and so forth — all become temporarily suspended when he or she falls ill. The individual becomes a ‘sick person,’ which relieves him or her of some or all of the ordinary obligations, depending on the severity of the illness.

The suspension of his other duties does not mean that the person playing the sick role has none at all. Quite the contrary; he is saddled with one big obligation: He must make every effort to get well again. In our own doctor-ridden culture, this means that he must seek medical advice; he must take his medicine and follow the doctor’s orders. This expectation mandates the proper role of the sick as one of passivity. The sick person is excused from work or school, household duties are suspended or at least limited, and connubial relations may be put on ice. But in return, he must devote full time to getting better.” (Murphy, 19)

The temporary suspension of numerous social roles in favor of a single imperative to “get well” is a trap that is well-known to many of us. Sometimes, this suspension of other obligations is necessary and welcome. For instance, when I had surgery to remove a degenerative disk in my neck a few years ago, I spent several weeks recovering my strength before I was able to get back to “normal.” And I well remember the feeling that my only role was to heal. At the time, I felt great comfort in knowing that others would take care of business while I recovered.

But the situation becomes much more complicated and troubling when a person moves beyond a short-term illness into a chronic condition. A couple of years ago, I went through a particularly low period with being autistic. During my 50 years of ignorance about my condition, I had pushed myself unmercifully — physically, psychologically, and emotionally — to the point of burnout. At the same time, I had been prescribed benzodiazepines, medication that was wreaking complete havoc with my sensory and emotional life. For awhile, I needed assistance with basic tasks, such as food shopping, housecleaning, and cooking. It was painfully difficult to ask for this help, and my self-esteem suffered significantly.

Two years later, I take much better care of myself. I have adapted to my disability, I have gotten off the benzodiazepines, and I have healed from the burnout. As a result, I no longer need such assistance. But the legacy of having once required it has cast a pall over my life that I have never completely dispelled.

Until now, I’d never known why. I’m beginning to understand, though.

With a condition such as autism, Down Syndrome, or multiple sclerosis, there is no “getting well” in the conventional sense. There can be therapies, accommodations, and the amelioration of certain symptoms, but there is no pill, no surgery, and no treatment that will remove the condition and render the person “normal.” Having any of these conditions, therefore, automatically puts one into the category of “sick” people (think “autism epidemic”), with a concomitant obligation to “get well.” But if you have a condition from which you can not “get well” according to the standards of the larger culture, you are completely unable to fulfill the one social imperative that the world gives you. And if you fail at that one obligation, then the quality of all the other social roles that you might have — father, mother, husband, wife, friend — immediately becomes suspect.

Thus, you end up with the widely held belief that the partners of disabled people are heroic for sticking around, and that they do so only out of pity, as though disabled people are not full and equal participants in the process of their own lives. And you get a great deal of talk about the numerous (and very real) challenges that the parents of disabled children face, to the exclusion of talk about the numerous (and very real) delights that such parents find in their disabled children.

You get T-shirts, mugs, and tote bags that say, “I love someone with autism.” You don’t get T-shirts, mugs, and tote bags that say, “Someone with autism loves me.” I’ve considered making up some items with that message on them, but I think it would only depress me to find out how few I would sell.

Of course, defining us as “sick” generates a great deal of money, energy, and emotion in the race for a “cure.” After all, if our one imperative is to “get well,” the culture is going to make damned sure that we do it. And, inevitably, the only way to get other people to join the search for a cure is to generate FUDD (fear, uncertainty, doubt, and dread) about living with a disability. In the autism world, Autism Speaks is masterful at this form of gamesmanship, which has the net effect of making the parents of autistic children absolutely terrified of what might happen to their children without all the latest treatments, without 40-60 hours per week of expensive therapy, and without that elusive “cure.”

The fact that there are millions of disabled adults who have created happy and fulfilling lives, without full-time treatment and without a cure, seems to matter not at all. We are ignored, and why? We have broken the obligation of being a “sick” person. We have not remained passive. We have not lived our lives in a quest to “get well.” We have lived our lives in a quest to live well as the people we are.

As a result, we find ourselves in the vortex of a great deal of distortion for wanting to simply be at peace with ourselves and carve out a meaningful life. It’s as though, having given up our “patient” status, we’ve committed some sort of cardinal sin. Thus, you get autistic self-advocates, who do not want to be cured, being told that we’re faux autistics. If we reject the role of the “sick” person, with the one overriding obligation to get better, it’s as though we short-circuit the cultural wiring. The response is often along the lines of, “If you refuse to see your autistic mind and body as sick, and you refuse to accept the social role that having such a mind and body entails, then you must not be autistic at all.”

That logic, of course, is not logic at all, which is an indication of how deeply threatening stepping out of our assigned role feels to other people. And the illogic means that we face psychological warfare of the worst kind: we find ourselves verbally stripped of the very condition that is the source of our struggles, our triumphs, our sensitivity, our discipline, and our awareness. In those moments, it’s as though our entire life histories have been erased.

Were we not threatening a deeply held cultural value, the response to us might be somewhat more productive, along the lines of, “I give you a lot of credit for your strength and your accomplishments, and I celebrate that you have a happy and fulfilling life. But please be aware that my adult autistic son, who tries to self-injure all day long, who bloodies himself on a daily basis, who gives himself concussions when he’s stressed, is in a state of irremediable pain that no accommodation can fix. Do you understand why I want to move heaven and earth to find a cure? And, until that help arrives, can you give me some insight as to how I might understand what is happening to him?”

That would be a conversation worth having. Unfortunately, I’ve never seen it actually happen.

In the absence of that conversation, I understand the wholesale rejection of words like “disease,” “disorder,” and “sickness” in the autistic community. I’ve gone to great lengths to distance myself from words like those, and I’ve always felt a great deal of discomfort about it, too. After all, what is so shameful about having a disease, or a disorder, or a sickness? Isn’t rejecting those words just playing into the hands of those who see disability as the worst possible thing that could happen? Don’t we need to reclaim those words and empty them of all of their dehumanizing connotations?

I think we do. But it’s difficult to do so when being labelled diseased or disordered puts you into the trap of having only one social role, and it’s a role you can’t fulfill. Under those circumstances, it’s entirely understandable that the response would be to reject the label altogether.

As I sit here thinking about all of these issues, I’m reminded of someone I never met, but about whom I know a great deal: my husband’s late wife, Karolka, who died of ALS ten years ago, at the age of 55. One of the most memorable things that Bob has ever told me about her has to do with the whole issue of disease and cure.

Even before the diagnosis of ALS was confirmed, Bob and Karolka sought out all kinds medical interventions to try and heal her — or to at least slow down the progression of the condition. And on a regular basis, they would hear from a friend or community member with another great idea for them to try. At a certain point, Karolka decided that it was time to stop chasing a cure, and to start accepting and living her life. Even after she’d made that decision, people would periodically show up with new ideas, but she had moved on, and when she did, she found a great deal of joy.

She never referred to ALS as “my disease.” She always referred to it as “my condition.” And lest you think that she was engaging in feel-good, New Age, mamby-pamby, politically correct nonsense, please allow me to disabuse you of that notion. She had absolutely no time for bullshit of any kind, and the last thing on her mind was a desire to fulfill someone else’s idea of how to talk about her life. But in speaking about ALS as a condition, rather than as a disease, she gave herself a great gift: She made herself an active participant in her process of living and dying, rather than a passive victim of an enemy beyond her control. And she released herself from the obligation of having to “get well,” when getting well was out of the question.

I’m not saying that every disabled person has to see himself or herself the same way. And I’m certainly not saying that it’s not okay to want a cure for one’s condition — although there are a great many troubling consequences to having a cure in a culture in which our main social obligation would be to avail ourselves of it.

What I’m arguing against is the whole idea of the obligation altogether. Far too many people will never have typical neurologies, typical bodies, typical minds, or typical ways of being. Giving disabled people an obligation we can’t fulfill means that we become people of less than equal worth. And it also means that we have very little support to fulfill a number of other roles — such as mother, father, husband, wife, son, daughter, friend, neighbor, and community member — that we want and need, just as everyone else does. The overriding quest for a cure means that an organization like Autism Speaks spends most of its budget on research, and only 4% on services for autistic people living in the here and now. What is this “autism advocacy” organization advocating for, anyway? It is advocating for us to assume one role, and one role only — that of a patient, passively waiting to get better. It is not advocating for us to fulfill our birthright — to participate fully in all that the world offers to typically able-bodied people.

A few years back, after I received my Asperger’s diagnosis, I told a friend of mine who lives in Jerusalem, and who himself lives with a chronic disability. His response was something along the lines of “My sister, I will pray to Our Creator to heal you.” I was rather aghast at his response, as loving and as well-intentioned as it was, but I couldn’t quite articulate why. I wrote something back to the effect of “Please don’t pray for my healing, but for my ability to manage my life with strength and dignity.”

I never head from him on the subject again. But if I had it to do over, I’d expand on my request for his prayers and say, “Please, don’t pray for my healing. Please pray for my strength. Please pray for my dignity. Please pray that I have supportive friends and a loving community. Please pray that I continue to find meaningful work. Please pray that the world stops seeing me as broken. Please pray that others don’t react to me with fear and prejudice. Please pray that I live a long and happy life.”

Perhaps I’ll still ask for those prayers.

© 2011 by Rachel Cohen-Rottenberg

Most of us who discover our place on the spectrum later in life go through a period of self-doubt. We think “Well, I fit the criteria, and I identify with the experience of other Autistic people, and it explains just about everything about my life, but…but…but…Really? Me?” If you’ve gone decades without a diagnosis, and then you discover that everything fits, the result can be a combination of euphoria (“At last! I’ve found my kin! And a Unified Theory of Me!”) and extreme self-doubt (“But if I passed for typical this long, can I really be Autistic? Maybe everyone was right, and I’m just plain freakin’ nuts.”)

We Autistics are not the only ones who have to deal with this sort of doubt. Lots of autism parents have to deal with it as well, especially when their children do not fit a narrow stereotype. Parents may feel, at first, that they are overreacting to their children’s atypical behavior (“Hey, I was an awkward, quiet, geeky, early reader, too! What’s the big deal?”) even as they see their children struggling in ways that they themselves did not (“Yeah, but I don’t remember scratching my face in paralyzing anxiety over going to grandma’s house”).

So it’s a process for all of us.

It would be a lovely world if people would just leave us alone to deal with our doubts in peace, wouldn’t it? But, of course, that would be asking too much. To make a life-changing moment in our lives even more fun, enter the doubters. You know who they are. Sometimes, they’re well-intentioned people who are just trying to cheer us up. They say things to parents like, “Your kids are not Autistic. They’re just quirky and shy!” Sometimes, they’re otherwise respectable professionals who, for reasons I can’t yet fathom, say things to parents like, “Your kids are not Autistic. They’re just quirky and shy. So, please stop bilking the school systems of $50,000 a year on behalf of your weird but otherwise neurotypical children. Take a chill pill, and return that money to the outgoing, conventional kids who rightfully deserve it.”

Needless to say, many of us Autistics put up with the same sort of thing. There are the people who try to make us feel good by telling us that we don’t seem so, you know, weird. They say things like, “But you seem so normal! You can’t possibly be Autistic.” Apparently (and please correct me if I’m wrong), this is supposed to be a compliment. (NB: It’s not.) If they’re being slightly more diplomatic, they might say things like, “Are you sure? After all, you’re happily married. With children. And you can write. And speak. And have insights!”

It gets real tiring, real fast. After all, the only way to convince such people that what you’re saying is true is to take out a laundry list of everything that’s “wrong” with you or your kid. What a great topic of conversation! Doesn’t everyone want to talk about what they can’t do rather than what they’re actually good at? Don’t all parents want to keep repeating the list of their children’s difficulties, ad nauseum? Don’t we all want to blow our privacy to hell, just to convince people that we’re not lying, stupid, or unable to see what’s in front of us? And it especially sucks that we have to defend ourselves when we’re just a wee bit tired from coping with the disability itself, if you know what I mean.

And then, of course, there are the real nasties out there—the ones who call anyone who can write, speak, choose their friends, carry on a relationship, work a job, make a video, raise children, or live independently “fake Autistics.” I find the ignorance and meanness of these kinds of statements appalling. I understand that people are angry, stressed, sad, and overwhelmed for any number of reasons, but get a grip. How can anyone make such pronouncements? The criteria they’re using are not a reasonable basis for a diagnosis, to put it mildly, and carrying out diagnostic assessments on complete strangers over the Internet is not exactly a responsible practice.

One of the ways that many of us try to resolve our doubts—and get other people to please shut up now—is by getting an “official” diagnosis. And, I know for certain that an “official” diagnosis goes a long, long way. I got diagnosed very early in the process of discovering Asperger’s, and it was very liberating to have a third party listen to me and validate my perceptions. In fact, when I tried to thank the specialist who diagnosed me, he said, “You really don’t need to thank me. You’d already used your insight to figure it out before you walked in the door.”

I know that without an “official” diagnosis, we can feel a lot of nagging doubt. And so, people often look to a specialist to remove these doubts. And sometimes, I think, it works. For me, it didn’t. It went a long way, but it didn’t erase all doubt immediately. Certainty took awhile to arrive. I needed to integrate my new understanding into my sense of myself before I really felt sure. I had way too many stereotypes of autism in my head to root out, and I had to recover from way too many years of minimizing my difficulties. It was a process.

What worked for me was writing my book. I was able to go over my whole life—everything I’d gone through, everything I’d felt, every way I’d coped, all the ways I’d faked it, all the things I’ve done so well—and in the process, everything came together in such a way that the question of “Really?” was laid to rest. And even better, I was able to be honest and proud of being who I am. I don’t mean proud of my accomplishments. I mean proud of who I am.

But even with a diagnosis, the doubts expressed by others often refuse to go away. There are people who call autism the “diagnosis du jour.” There are people who think that because we can do some things, we can do all things. There are people who will never understand that some things cannot be overcome by willpower. There are people who think that a child in the middle of a meltdown is just being a bad kid. There’s really no end to the things that people will say to any of us, and having an “invisible” disability just compounds the problem. After all, for the most part, many of us look for all the world like typically able-bodied people. We look just like the people doing the doubting. If we look like them, they think, how could we not be like them, think like them, experience the world like them? After all, it just takes a little effort, and clearly, we’re not rising to the task.

They think that what they literally see before their eyes is the whole picture. Apparently, we Autistics aren’t the only ones who get hung up on visuals—not by a long shot.

Unfortunately, there are no proven treatments for this kind of denial. There are only coping mechanisms for those of us who are the objects of it. Here’s how I’m working on the problem:

1) I am getting increasingly clear on the fact that, unless it’s in the context of official paperwork, it’s ethically wrong to ask a disabled person to prove a disability. I’m also coming to understand that it’s equally wrong to go about explaining myself. It feeds the monster, and it gives away my power, big time, when I need to conserve my energy for more productive things, like enjoying my life.

So how to answer back? A while ago, I read a piece by a disabled woman about how she responds to people staring her down when she parks in a handicapped space. When they see her walk out of her car and say to her, “But you don’t look disabled,” she says, “And you don’t look like a doctor!” Then she moves on. I think we would do well to answer the doubt and denial that come our way with a similar response.

2) When I encounter doubt from anyone, I’ve started imaginatively referring the doubter to the specialist who diagnosed me. That is, for those who want to question whether I’m Autistic (and, by implication, whether everyone like me is Autistic), I have at the ready the following statement: “You know, if you don’t believe me, take it up with the specialist who diagnosed me, because I really don’t need to spend any time on this subject.” Being able to mentally offload the question onto the diagnostician has been a major, unexpected benefit of having an “official” diagnosis.

3) I’ve begun to understand why the doubt can settle in and feel so upsetting, especially to Autistic people. Many of us, because we’ve lived with a lot of bullying and social rejection over a number of years, can develop something called “reactive depression.” One of the hallmarks of this kind of depression is a tendency to be extremely self-critical and apologetic. So when someone says, “You’re not really Autistic,” it can set off a chain reaction in which our first response can be “Oh, wow, I didn’t mean to take up too much space, or to ask for too much attention, or to take myself too seriously, and maybe I really ought to examine this whole thing again, and oh my, I’m so sorry to have bothered you with it at all.” Then, we get back into another loop of “Am I, or am I not?”

The doubts of others don’t inflame doubts in me anymore, mainly because I can tell the difference between a question that triggers an old, unhealthy response, and a question that signals that I seriously ought to look at something. Questions about whether I am who I say I am don’t fall into the category of friendly questions, and so I’m always aware that they’re simply triggering.

At this point, the ethics of doubting a disabled person’s self-identification come in again: It’s absolutely unethical, in the extreme, to inflame self-doubt in a person who has already been bullied and rejected enough to have self-doubt be an habitual, destructive response. Some people don’t know they’re triggering this response, and these people need to be gently told to end their line of questioning. Others are simply lashing out and are only too happy to trigger a whole series of unhappy responses. These people need to be told, in no uncertain terms, to STFU—and that can mean simply walking away and refusing to engage.

We don’t have to let the chain reaction of self-doubt and apology happen, over and over. It’s just a habit. Habits can be broken, especially when you have the support of a community that understands what’s going on.

Clearly, the whole question of how to talk back to doubt and denial is still a work in progress for me, and I’m very much at the beginning. Describing the problem and starting to brainstorm solutions has been very strengthening, though. I’ve moved out of the mode of explaining, and into the mode of strategizing about how to deflect and keep moving on.

How do you feel about the kinds of doubt and denial you’ve encountered? And what are the strategies you’ve used to deal with them?

© 2011 by Rachel Cohen-Rottenberg

I’m not sure that I can explain to someone who hasn’t been through it, or who hasn’t watched a loved one go through it, the devastating impact of the way that people see autistics. The insistence on looking at us through the lens of deficit is so extreme that we begin to see “deficit” as key to the definition of who we are. I have difficulties with eye contact: deficit. I can’t read nonverbal cues: deficit. I like routine: deficit. I can’t do small talk: deficit. I can’t lie: deficit. I can’t be indirect: deficit. I’m blunt: deficit. I depend upon my lists: deficit. I stim: deficit. And on. And on. And on.

How dare anyone define us in terms of what we can’t do? In my worst moments over the past two years, I’ve felt like a piece of swiss cheese, recognizable only by what isn’t there.

So, what did I do to find my way back to a sense of wholeness? I started looking at my strengths. The truly mind-bending result was that, once I had the autistic label, even my strengths started looking like deficits. I’m gifted at discerning patterns and organizing the objects of space: Those are just splinter skills. I can focus like a laser beam on any task: I am inflexible. I am good with the written word: I’m overcompensating for my difficulties with verbal communication. I have a keen eye for hypocrisy: I just don’t understand the usefulness of social forms. I value my non-conformity: I just don’t understand the usefulness of social forms. I’m very good at discussing subjects of mutual interest: I just don’t understand the usefulness of social forms. I express empathy by asking what a person needs from me and then doing it: I just don’t understand the usefulness of social forms. And on. And on. And on.

At some point, my healthy sense of outrage began kicking in and, in addition to reclaiming my strengths as actual strengths, thank you, I began reclaiming my so-called “deficits” as actual strengths, too. I have difficulties with eye contact because I am so sensitive to the information coming at me from a person’s eyes. I can’t read nonverbal cues because I am so sensitive to the fullness of a person’s energy. I like routine because I’m an organized person. I can’t do small talk because I’m sincere. I can’t lie because I’m ethical. I can’t be indirect because I’m honest. I’m blunt because life is short and there is much to be done. I make lists because I’m responsible and don’t ever want to forget to do anything that someone, somewhere, might be depending upon me to do. And I stim because, in case someone hasn’t noticed, the world is a pretty noisy, chaotic place full of highly irrational people, and I just need a little soothing. That’s a problem?

It’s a lot of work to have to continually fight this battle against the impact of the autism discourse. And what’s most exhausting is the fact that every time I fight this battle, I’m reminded that words like deficit, disorder, impairment, and disease permeate most discussions about us. That’s when I’m back to feeling that something is wrong with me, something that the literature calls a pervasive developmental disorder rather than simply a difference. Gee, thanks. Just when I thought I’d defeated the demon of pervasive wrongness, there it is again, and this time, it isn’t just my abuser doing the talking. Well-respected professionals, loony-toon wackos, and everyone in between can all agree on it.

Wonderful. But here’s the way I look at it: If all that someone can see are all the things we can’t do, and all the things we aren’t, rather than all the things we can do, and all the things we are, I’m not sure I can do a thing about it except to refuse to participate.

That’s when I return to the pivotal moment on my healing path: I have a pure soul. If there is one thing that is pervasive, that touches everything I do, it’s the spark of the Divine in me, and that spark is far more powerful and far more valuable and far more sacred than anything else. If all that someone can use to describe me is the language of deficit, disorder, and impairment, that’s the other person’s illusion, not mine. I don’t have to take it on, and I won’t. All I can do is to stay clear in my mind that a society that defines people by what they can’t do is a society with a pervasive problem, and the problem isn’t us.

© 2010 by Rachel Cohen-Rottenberg

1. Why is it perfectly okay for a child to rock back and forth sitting on a swing, but not rock back and forth sitting on the floor?

2. Why is it perfectly okay for an adult to rock back and forth sitting in a rocking chair, but not rock back and forth sitting on the floor?

3. Why is it considered very romantic for two young people to rock together in a swing, but if they were to sit on the floor and rock together, others would very likely attempt to separate them?

4. Why is the ritual of lining things up considered a meaningless activity indicative of pathology, while the ritual of sitting for hours in a line of cars on the highway during certain weekends of the year is considered vital to observing a national holiday?

5. Why is hand-flapping considered an activity with no apparent purpose, while saying “How are you?” without actually meaning it is considered a necessary social skill?

6. Why is finger flicking called a stim while pencil twirling is called a cool thing to do when you’re bored in meetings?

7. Why is echolalia on the part of a single individual an indication of a disorder, while a ritual in which thousands of people obsessively repeat absurd statements such as “Obama wasn’t born in America” is an act of free speech?

8. Why is a passion for everything associated with Star Wars considered an unhealthy obsession, while a passion for everything associated with the New England Patriots is considered a sign of a loyal fan?

9. Why does perseverating on spinning objects buy you a trip to the developmental pediatrician, while perseverating on the debunked idea that vaccines cause autism buys you a spot on Oprah?

10. Why do neurotypical people accuse autistics of lacking empathy when we are not responsible for most of the bullying, warfare, and injustice in the world?

Do you have any answers? Or just questions that make your head hurt? Let me know.

© 2010 by Rachel Cohen-Rottenberg

It’s not that I believe that a cure is possible. I don’t. How can you cure who I am and leave me whole? How can you isolate something called “autism” when it pervades every part of me? And it’s not that I would want to be cured were it even possible. I wouldn’t. I like myself just fine. What I don’t like are the loud, insistent voices that tell me I’m not fine.

What hooks me into the discussion about a cure is the accusation that, by criticizing the overriding focus on a cure, I’m telling people what’s best for their autistic children, and that I want to take away free choice. After all, people say, what would be so bad about having a cure? You could choose to take it or not. I’m absolutely committed to the principle of self-determination for every person on the planet, so the accusation that I might be compromising that principle gives me pause and makes me examine my thinking.

What would be the consequences of a magic pill to cure autism? Certainly, some people could choose to take it, and I’m all for free choice. But free choice assumes a neutral environment in which there is no pressure to make one choice or the other. We don’t have a neutral environment. We have an environment in which professionals, teachers, lay people, and well-funded organizations tell us that we are impaired, broken, sick, diseased, tragic, disordered burdens on those we love. They say that we don’t know how to love, that we can’t speak for ourselves, and that our lives aren’t of worth equal to the lives of others.

Given this environment, no matter what our place on the spectrum, how long would it be until you or I would be pressured to take “the cure”? How long would it be before parents were pressured to give their autistic children “the cure”? How long would it be before any autistic person, self-injuring or not, verbal or not, intellectually disabled or not, were pressured to take “the cure”? In the world as currently constituted, it wouldn’t be long at all.

And what might be the consequences of refusal? What might happen to a parent who refused to cure his or her child, especially if that child had been deemed “low-functioning”? There are people who believe it is child abuse to bring a disabled child into this world. What might they think of a parent who made a free-willed choice not to give the cure to his or her self-injuring child? These are the questions that give me pause.

I have realized of late, and to my great dismay, that all of the things I’ve taken pride in all my life—my intense focus, my seriousness, my blunt honesty, my rejection of social hypocrisy, my innocence, my insistence that people follow rules, my passion for fairness, my huge vocabulary, my early reading ability, my uniqueness, my acute sensitivity, my love of patterns, my nearly photographic memory—are now all evidence of a disorder. Does anyone really believe that it’s just our so-called “low-functioning” fellow travellers who might be pressured to be cured? It’s not—not when the pressure to medicate children all along the spectrum in order to render them fit for school and life is reaching dangerous proportions. The definition of what is “normal” is getting more narrow every day, and we autistics don’t fit, no matter where on the spectrum we find ourselves. I simply can’t separate myself from anyone on the spectrum and say that perhaps they should be cured and I shouldn’t. Until everyone on the spectrum has full self-determination in an environment in which free choice is a real possibility, the choices get narrower, not wider.

Parents often accuse people in the neurodiversity movement of telling them how to treat their kids. I’m not particularly comfortable with aligning myself with any movement, for a number of reasons, chief among which is that when I do, discussions tend to become polarized and unproductive. People begin seeing one another as purveyors of an ideology, rather than as human beings, with the result that both nuance and sensitivity go right out the window. But I will be an ally of anyone who fights for what’s right, and from what I can see, the neurodiversity movement is fighting for an environment in which parents and their autistic children can make free-willed, empowering choices. I have no problem stepping up and making myself an ally in that fight, because we’re all in this together, no matter how many times some people try to dismiss autistic self-advocates by telling us that we’re not really autistic and don’t really suffer.

We suffer. We suffer from all the sickness that saturates the culture in which we live. Heal this culture from its obsession with disorders. Heal the nastiness of the “autism wars.” Heal the impact of the vitriol flung at those of us who are simply asking for someone to listen. Heal the damage inflicted on entire generations of children who will grow up believing that they are broken and need to be fixed simply because they perceive the world in non-normative ways. Heal the ignorance. Heal the privilege of defining what’s “normal.” Heal a society that turns difference into disease in the blink of an eye.

And then maybe we’ll be able to have a rational conversation about the concept of cure. Until then, the conversation is simply an excuse to take out our suffering on one another, and inflicting pain doesn’t move the process forward. So I’ll keep fighting for a world that respects and celebrates each and every person, because that’s the only kind of world in which true self-determination is possible.

© 2010 by Rachel Cohen-Rottenberg