Journeys with Autism » Disabilism

On Puzzles, Privilege, and Missing Pronouns

Rachel Cohen-Rottenberg — Tue, 24 Aug 2010 18:54:33 +0000

When I read blogs by the parents of autistic children, I often happen across the puzzle metaphor. It finds its way into statements such as “My autistic daughter is such a puzzle” or “We’re still putting together the pieces of the puzzle that is my son.” I’ve always had a visceral response to the puzzle image to describe autism and autistic people, especially when used in the puzzle-piece logo of the Organization-That-Shall-Not-Be-Named. It’s so offensive on a gut level that I’m having difficulty even beginning to write about it.

A puzzle suggests the idea that there might be some pieces missing. Of course, such an idea is anathema to me, when applied to any person on the planet. The only way in which you could look at a person and see pieces missing is if you begin with a preconceived notion of what a person is supposed to look like. If the person doesn’t fit that preconceived picture in your mind, then you see all kinds of gaps. But if you see the person for himself or herself, and accept the person as a given, without reference to an outside standard, then the picture becomes whole. The person is simply a person, on his or her own terms—nothing more and nothing less.

If you begin with an idea of “normal” that says that a person should be able to speak by the age of two like “normal” children, enjoy the same kinds of activities as “normal” adults, and socialize in a “normal” fashion, you’ve got a seriously complex, preconceived image of what it means to be a whole person. It’s nearly impossible that any atypical person could even begin to approach that image of normal. When we don’t, some of us are told that we’ve got pieces missing. Autistic people are told that we lack empathy, theory of mind, central coherence, and the ability to live as social beings—which, by the by, is all complete and utter bullshit, just in case you were wondering.

So who gets to decide what picture is normal? Other people who have the privilege of defining themselves as normal, that’s who. It’s a nearly invisible privilege for the most part, because it’s everywhere. It’s taken me a long time to see it and, ironically enough, I’ve begun to see it by virtue of what is missing from the language of many of the non-autistic people who talk about us.

Two words are missing from the statement “My autistic daughter is such a puzzle”—two little words that would change that sentence from an expression of privilege to an expression of a personal experience. And those two little words are to me. If someone were to write, “My daughter is such a puzzle to me,” then we’d be getting somewhere. All it takes is the inclusion of the personal pronoun. Of course, there is still that little issue of the puzzle metaphor, which runs the risk of portraying the child as a series of pieces, but at least the source of the fragmented perception would stay where it belongs: in the eye of the beholder. The speaker would be taking responsibility for describing his or her own limited perception rather than an objective fact.

Another example of this limited perception appeared on a recent blog by a parent who said that her autistic child is afraid of things “that just aren’t scary.” She didn’t say “that just aren’t scary to me.” She said, “that just aren’t scary,” as though there were an objective measure of what’s scary. These words imply that somewhere in the far reaches of the universe, there is some ideal called scary, we all know what it is and, if we’re scared of things that don’t measure up to that ideal of scary, something is terribly wrong. Now, I have always assumed that being frightened was a subjective experience, and that an image or a situation that frightened one person might not frighten another. I have never assumed that what went on in my own mind was exactly the same as what went on in other people’s minds. Far from it.

But wait a minute. I remember reading somewhere that being able to understand that other people think differently than I do is called having Theory of Mind (ToM). So, miracle of miracles, I actually have ToM, autistic though I am! And when a non-autistic person can’t imagine why an autistic person might be afraid of something, that non-autistic person seems to lack ToM. I see evidence that non-autistic people lack ToM regarding autistic people all the time. In fact, I see it in the work of “experts” on autism, and yet rarely does anyone call them on it. Usually, the ones who do the calling out are autistic people like me, who by definition don’t understand ToM, so we’re dismissed before we begin.

And once we’re dismissed, people can own the discourse about us and say just about anything they want. Consider the following:

A non-autistic person says that the world of an autistic person is a puzzle. That statement is taken as objective truth by most non-autistic people. In fact, it is irrefutable evidence that the person speaking is “normal” and that the person being spoken of has a “disorder.” All too often, family, friends, teachers, and professionals look at the autistic person, shake their heads, and say, “Yes, you’re right. Poor thing. He certainly is a puzzle!”

An autistic person says that the world of neurotypical people is a puzzle. That statement is taken as a purely subjective perception by most non-autistic people. In fact, it is irrefutable evidence that the person speaking has a “disorder” and that the people being spoken of are “normal.” All too often, family, friends, teachers, and professionals look at the autistic person, shake their heads, and say, “Poor thing. He’s so impaired. He just doesn’t understand us.”

Could the arbitrary nature of privilege be any clearer when one set of people has “understanding” when they don’t understand, and the other set of people is “impaired” when they don’t understand? Maybe it’s that I’m autistic, or a born democrat, or hopelessly addicted to fairness, but I find this kind of imbalance deeply disturbing and painfully unjust.

So what do I do when I meet the puzzle metaphor? Well, obviously, I write about it. And yet, the best response to it I’ve seen is a photo on the blog of my friend Elesia Ashkenazy. I’ve taken her lead and created a sign of my own:

If you want one, send me a photo by email and tell me what colors you’d like for the top and bottom, and I’ll make you your own sign. And if you’re comfortable with my publishing it on my blog, let me know. I’d love to have a post filled with signs like this, but only if people are comfortable with their faces being out there for the world to see. I do not “out” people, and I never will.

Am I More Than My Autism? I Refuse to Answer the Question

Rachel Cohen-Rottenberg — Sun, 15 Aug 2010 16:32:39 +0000

In the past week, I’ve read two articles in which mothers of autistic children wrote that their children are “more than their autism.” Something about this assertion has been bothering me, and I want to explore why.

When I read the first article, I thought I’d entirely put my finger on the problem. The writer, a non-autistic mother of two autistic boys, had only negative things to say about autism, and it seemed clear to me that she was saying that her children were more than a collection of negatives. I don’t accept that autism is an entirely negative condition, so I attempted to argue with her on that basis. I didn’t get very far, mainly because the writer kept asserting that her children were human beings, not just autistic human beings, which pretty much ended the discussion. After all, who is going to argue with the inherent humanity of any person? I didn’t see anywhere to go, even though something still felt very wrong to me.

Then, yesterday, I read another article, this time by someone on the spectrum who has two children on the spectrum. She, too, asserted that her children are “more than their autism.” Her view of autism is not entirely negative, and so I had a much easier time reading and thinking about what she had to say. And yet, the assertion still bothered me. To try to get at why, I decided to apply the question to myself: Am I more than my autism?

That’s when I began to understand the problem.

The term autism is itself very problematic. I agree with Amanda Baggs when she says that there is no such thing as autism, and that there are only autistic people. I don’t feel that autism has an existence separate from me in any kind of quantifiable, objective way. In fact, I’m coming to feel that the word autism is simply a social construct. After all, if it’s all about behaviors, with some behaviors considered impairments, how can it not be a social construct? In some cultures, making eye contact, especially for long periods of time, is considered rude. In some cultures, it’s perfectly acceptable to rock back and forth on a regular basis. After all, observant Jews pray three times a day, and rocking back and forth constantly is part of the ritual. We’ve been doing it for centuries. And yes, some people find it very strange, but their experience of us is a cultural judgment, not evidence of an objective reality.

Even if you move toward describing autism in terms of subjective experience rather than externally verifiable behaviors, it’s still difficult to escape the social implications of what happens to our descriptions of our own experience. I can describe my difficulties with noise, my inability to filter sound, my extreme sensitivity to the energy of other people, and yet, if I take those together and make them part of the definition of something called autism, I’m moving them from the realm of autistic experience into the realm of a category—a category in which my experience can be broken down into a list, in which it can be medicalized, in which other people can become “experts.” That’s a realm that the culture constructs constantly and values excessively.

So the very idea of using the word autism as though it is separate from my personal, subjective, daily reality is very fraught. I didn’t feel that way when I named my blog Journeys with Autism, but I feel that way now. (And no, I’m not changing the name of my blog again, because if I changed it every time I had a new realization, I’d drive everyone nuts.)

But there is something more about the question “Am I more than my autism?” that is very troubling. Or perhaps it’s the expected answer that’s troubling—the expected answer being “Yes, I am more than my autism. I am a human being. Autism is just a part of whom I am.” This answer is very problematic, for a number of reasons, not the least of which is that it threatens to divide me up into component parts: part autistic, part Jewish, part female, part this, part that. I don’t feel like a series of component parts. Everything I am is completely me: I am entirely autistic, entirely Jewish, and entirely female. If you split one of those things off, I wouldn’t be myself anymore. You can’t take away my Jewishness and think that you will recognize me. You can’t take away my being a woman and end up with a complete human being. And you can’t take away my being autistic and think that I will continue to exist, any more than you can take away all my veins and capillaries and arteries and think that my heart will continue to circulate blood throughout my body.

Even more important, though, is that my humanity is implicit in my being a woman, in my being Jewish, in my being autistic. After all, am I more than a woman? Is my husband more than a man? To say yes, we are both human beings, is to miss the point entirely. Being a woman automatically means that I am a human being. Being Jewish automatically means that I am a human being. Being autistic automatically means that I am a human being. Being female, and Jewish, and autistic, are not component parts of being human, nor is being human somehow above and beyond them. Being human saturates them. Being human is what makes being female, and Jewish, and autistic worth the effort.

And make no mistake: being a woman and being Jewish are not easy, any more than being autistic is easy. Being a woman and being Jewish are not entirely positive experiences, any more than being autistic is an entirely positive experience. For some reason, it’s easier to speak of the mixed experience of gender and ethnicity than the mixed experience of being autistic, at least in this day and age. No one but a misogynist would deny that being a woman is a wonderful experience in some times and places, and a horrendous one in others. No one but a dyed-in-the-wool anti-Semite would deny that being Jewish can be extremely joyous and extremely difficult, depending on circumstances, and often at the same time. But there are days in which I’m hard pressed to find anyone saying anything positive about being autistic, as though being autistic were in some other sort of category, as though the usual paradoxes of being human don’t apply.

Many, many people don’t really see being autistic as being fully human, and in that blindness lies the problematic basis of the original question. When people say that their children are more than their autism, I think what they’re reacting against (and rightly so) is the pernicious idea that somehow being autistic and being human are mutually exclusive. And yet, at the same time, they run the risk of playing into this idea by asserting that there is something more than being autistic, and that is to be human. I’m not saying that the risk of separating the categories autism and human always results in the two becoming mutually exclusive, but it sets up a dichotomy that can easily reinforce the prejudices of a great many people.

When you come down to it, perhaps what parents are really saying is that their children are more than the stigma of the word autism. They are more than a medical diagnosis. They are more than the cultural refusal to celebrate them. They are more than the daily reminders that there is a construct called “normal” in which life is supposed to be easy and they don’t fit.

I have no argument with any of that.

But I’m not going to answer the question “Am I more than my autism?” because I do not accept its premises or its implications.

I am an autistic person, and I’m deeply thankful for it, even though I struggle and find myself vulnerable in ways that non-autistic people do not. I am a woman, and I’m deeply thankful for it, even though I struggle and find myself vulnerable in ways that men do not. I am Jewish, and I’m deeply thankful for it, even though I struggle and find myself vulnerable in ways that non-Jewish people do not. I am thankful for my life, whether or not it’s painful, whether or not it’s easy, and whether or not it measures up to the dreams I once had for myself or that other people had for me.

A dream is only a starting place. Life is where the action is.

Prejudice, Interrupted

Rachel Cohen-Rottenberg — Fri, 13 Aug 2010 03:08:36 +0000

I’ve decided to delete my Facebook account. I’m not just deactivating it, because it’s too easy to reactivate it in a moment of boredom or weakness. I’ve done the deactivation/reactivation cycle about a half dozen times this week, and I feel like I need a Facebook Anonymous meeting:

“Hi, I’m Rachel, and I can’t keep myself off Facebook.”

(Chorus of voices) “Hi, Rachel.”

“Hi. I’m going to my Higher Power on this, because my willpower is availing me not. It’s the same old story you’ve all heard: After a late evening foray onto Facebook, I think ‘Okay, I can’t take it anymore. I’m never doing this again.’ So I deactivate my account. Then, the next day, after I’ve slept off the whole soul-destroying experience, I think, ‘I can do Facebook. I am strong. I am invincible. I can reactivate it!’

I just can’t live like this anymore. (sniff) I need to let go. (sniff) Thank you for being here. (sniff sniff)”

(Chorus of voices) “Thanks, Rachel. Keep coming back! It works!”

So, that’s it. I’m going cold turkey. I’m deleting my Facebook account. You can do actually do that, you know. The Facebook Team doesn’t make it easy to find out how to leave “The Land of People Who Have Twelve Thousand Friends and You Only Have 89,” so I Googled “Deleting Facebook Account” and found this link. It works. You submit the deletion request, and if, by the grace of your Higher Power (however you choose to define it), you can keep yourself from reactivating your account for 14 days, said account is gone forever.

But don’t get the wrong idea from the title of this post. I’m not deleting my account because I think that the people who own and operate Facebook are bigots. I have no opinion on the matter, because I don’t know them from a hole in the ground. I’m deleting my account because too many people on Facebook express retrograde, mind-numbing prejudices about autism on a regular basis, and I just can’t stand it anymore. It’s like being on Usenet, except with commercials.

See, the problem with Facebook is the same problem we face in the age of AIDS. When you have sex with someone, you might think that you’re just having sex with that one person, but you’re actually having sex with everyone that person has ever slept with. On Facebook, you seem to be able to set up your privacy settings, choose your friends, and share tidbits about your life only with them, but in reality, all of your friends’ friends get to share with you. You get to read everything that the friends of your friends say in response to what your friends say, and some of the things that the friends of your friends say are well, let’s face it: complete garbage. In the past week alone, I’ve heard enough crazy-making prejudice about autism on Facebook to last me a lifetime.

To give you just one example of many: A friend of mine who works with autistic children and young adults mentioned that he’d spent the past several days in the company of people on the autism spectrum. The response?

One person said, “Story of my life. I feel your pain.”

What? Was that supposed to be funny? If someone had said, “I just spent the last several days with African-Americans” and had gotten the same response, more than one person would have been all over it. After all, people who are in touch with their humanity pretty much agree that it’s unacceptable to say something like that when it comes to race.

However, there is no such agreement when it comes to saying such things about autistic people, even to someone who works with autistic people, even though that person might, by some astronomically insignificant probability, have autistic friends on Facebook who might, by some astronomically insignificant probability, have feelings. Go figure.

And then there was the nice woman who mentioned that she worked with an autistic child and expressed her empathy for my friend’s (supposed) plight by saying of autism, “It’s a strange little condition.”

A strange little condition. That’s what I have. A strange little condition—a condition in which, by the by, I don’t know how to empathize, like this fine woman does. Okay dokey. If this woman worked with African Americans, I can’t imagine her saying that they have “strange little skin,” but apparently, it’s perfectly okay to say something like that about the very nature of an autistic human being.

Being an autistic human being who just can’t stand this kind of talk, I realized that I had to say something. So I quietly opined, “It’s only a strange condition if you don’t have it. For me, it’s perfectly normal.”

I thought that might quiet things down. But no. Someone else said, “But aren’t all of us on the spectrum?”

I couldn’t let that stand. I mean, I just couldn’t. So, I began, in an even tone, “Well, there is a neurological spectrum, and on that spectrum, some of us are on the autistic portion and some of us are not.”

I know, I know. It was like saying, “Well, you know, some of us have daddies who work in offices, and some of us have daddies who work on firetrucks” after someone has asserted that everyone’s daddy works on a firetruck. But, of course, that was hardly satisfying, because it didn’t really speak to the heart of the matter, so I decided to go for it: “And by the way, I thought [our friend] was talking about working with autistic people as a positive. I enjoy hanging out with autistic people. I also enjoy hanging out with non-autistic people—although they sometimes say negative things about autistic people when they don’t think that autistic people are listening, which is very troubling to this autistic person.”

Yeah, it was kind of an autistic thing to say. Someone else might not have bothered. But back in the day, before I knew I was autistic, it was just an ethical thing to say, and truth be told, it still is. I mean, how is it okay to say something like “Story of my life. I feel your pain” about hanging out with autistic people? Is it because we’re almost universally seen as a burden? A freak show? The walking weird? Why is that kind of statement considered acceptable? It was like hearing a “Jew joke” when the people involved couldn’t tell I was Jewish, except that no collective gasp went up from anyone else involved.

This kind of thing is simply prejudice, as defined by such unimpeachable sources as the Merriam-Webster dictionary:

a (1) : preconceived judgment or opinion (2) : an adverse opinion or leaning formed without just grounds or before sufficient knowledge b : an instance of such judgment or opinion c : an irrational attitude of hostility directed against an individual, a group, a race, or their supposed characteristics

And what are our supposed characteristics, on which we are judged, and laughed at, and stigmatized, and discredited, and dismissed, to the point that lots and lots of autistic people stay closeted for fear of losing their jobs, and their friends, and whatever level of acceptance they’ve managed to acquire from the world in which they live? Here’s the short list:

Rude
Lacking in empathy
Self-centered
Abnormal
Burdensome
Bizarre
Impaired
Disordered
Not quite human

I suppose if you think those things about an entire group of people, it’s perfectly okay to say just about anything about them. And then, of course, if someone from that group of people gets angry about it—well, it’s just further evidence that they’re just who you say they are, because after all, why should someone get so pissed off at an offhand comment, and be so blunt about expressing it, and not realize that she shouldn’t take things so seriously, because there was no ill intent, don’t you know?

I have only one answer to that: It’s because we’re perfectly human. I’m not sure how many people would believe me. After all, I’m autistic, and thus, discredited before I even open my mouth. But hey, that’s not going to stop me. Not anymore. I’m not going to step into a cesspool of this kind of bigotry if I can help it, but when I meet up with it, I’m going to interrupt it. I’m not going to give it a place to stand. I’m not going to be quiet. Not again. Not anymore. I’m done standing there, feeling sucker punched, with tears in my eyes, saying nothing.

The world deserves better of me. I deserve better of myself.

So I will continue to fight anti-autistic prejudice, but not on Facebook, which I only joined to keep up with friends, and where serious, considered, constructive discussion is virtually impossible. I can keep up with friends in other ways, and I have other venues for fighting the good fight—venues that are far more positive for me and far more constructive for others.

Disabilism and the Demonization of Autistic Children

Rachel Cohen-Rottenberg — Thu, 05 Aug 2010 16:19:48 +0000

This is what we know, when you tell us of your fondest hopes and dreams for us: that your greatest wish is that one day we will cease to be, and strangers you can love will move in behind our faces.
—Jim Sinclair, Don’t Mourn For Us

Most of you have heard about the case of Saiqa Akhter, the woman in Texas who allegedly murdered her two autistic children, Zain (age 5) and Faryaal (age 2). In her 911 call, she described trying to force them to drink bathroom cleaner and, when they refused to swallow it, strangling them with a length of wire. Zain died later that day; Faryaal was placed on life support and died the following evening. In explaining why she had killed her children, she said “Both are autistic. I don’t want my kids to be like that. I want normal kids.”

The deaths of these two children are a tremendous loss, but you’d hardly know it to read the responses of “autism experts,” who spend more time bemoaning the stress on the mother than the horrific nature of her actions. For example, Marguerite Colston, vice president of constituent relations at the Autism Society of America, told ABCNews.com, “That a family got to that point of stress is unfortunately not uncommon…The stress levels on parents [of autistic children] are extraordinarily high,” she said, noting that one study found that “stress levels were comparable to combat soldiers…You’re now a case manager and a specialist, and it’s almost like you’re not a parent anymore.”

This kind of statement blames the victim. I will not argue the fact that the stress of raising an autistic child can be extreme. What I will argue against is the idea that an autistic child creates stress that somehow explains the taking of that child’s life. I’m troubled by the fact that people look for “extenuating circumstances” when an autistic child is killed, but rarely when a non-autistic (or otherwise non-disabled) child is killed. In the latter cases, most of the time, the mother is painted as a monster, and there is no attempt to explain her actions at all.

Take the case of Susan Smith, who killed her two (apparently typical) children in 1994 by strapping them into their car seats and sending her car into a lake. I can’t remember a single “expert” saying that her being a single parent, or being involved in a sexual relationship with her stepfather, or having a history of depression, explained her actions. The single parenthood, incestuous relationship, and mental health issues were almost universally seen as moral failings on her part, aspects of her life that she could have changed and overcome by an act of moral courage and sheer force of will. She was condemned for what she did, and that was the end of the story.

Nor can I recall a case in which a minority woman killed her children and an expert attempted to explain it, with a straight face and on the national news, as the logical outcome of circumstances such as isolation, racism, a family history of abuse, urban violence, and poverty. These are circumstances that mirror battleground conditions far more acutely, and for far more people on the planet, than the stress of raising an autistic child and yet, the outcry against using the “race card” would be immediate were anyone to try to use these circumstances to explain killing one’s children. And rightly so. So why is there so little outcry against people using the “autistic card” to explain the deaths of two innocent disabled children?

Could it be that so few people see autistic children as “innocent”? Could it be that autistic children are stigmatized with words like “unemotional,” “lacking in empathy,” and “inhuman,” language that makes it nearly impossible to see the children as the actual living, breathing, whole human beings they are?

Equally troubling is the fact that so many people seem willing to ascribe the killing of the children to the mental illness of a lone individual, rather than to the social and cultural messages acted out by that individual. In responding to the deaths of Zain and Faryaal Akhter, Dr. John Lutzker, director of the Center for Healthy Development at Georgia State University, said that raising autistic children can result in mental health issues for parents: “Parents who have children with autism have disproportionate stress and depression compared with the general population,” he said. “It seems like this woman may have some other issues that went undetected.”

While I can’t pretend to know what went on in the mind of a mother who slowly killed her children by strangling them with a piece of wire, there are many other possible explanations for her behavior besides mental illness, explanations that have everything to do with the underlying messages of the society at large—a belief that her children weren’t whole people, a sense of entitlement to a “normal” life, a lack of empathy for her children’s acute experience of the world, and a general sense that life had cheated her by not fulfilling her dreams. I’m troubled to read so many people say that she must have been insane when there are very deep-seated, widely accepted social beliefs implied by her words. I suspect that it’s easier to think that the individual must be insane than to look at society’s beliefs about the worth of autistic people, how dangerous those beliefs are, and how deeply they are entrenched in the minds of so many people.

With all the concern for the difficulties of the mother, where is the concern for the difficulties of the children? Where is the empathy for their acute experience of the world? Why does no one say that there are rational, explicable, understandable reasons for their behavior—reasons that put the burden on their mother to protect them every day of their lives? Where are the voices explaining the struggles of autistic children everywhere?

By her own admission, Saiqa Akhter killed Zain and Faryaal because she wanted “normal” children. She killed them because they were autistic. She killed them because she didn’t want the children life had given her. Far from simply being the actions of a lone and troubled individual, her decision to end the lives of her children speaks volumes about how our society sees people who are different from a mythical “norm.” In fact, it speaks volumes about the very power of the word “normal” and its insidious impact upon all of our lives.

No More Disorders: Debriefing from DSM Diagnoses

Rachel Cohen-Rottenberg — Tue, 06 Jul 2010 17:28:00 +0000

Over the past few months, I’ve found myself moving further and further away from the mental health profession and its view of the world. It’s always difficult to know how these things begin, especially for someone like me, who spent many years in front of therapists. For a long time, psychotherapy helped me. It gave me a language with which to express the abuses of my childhood. It allowed me a safe place in which to work out the ways in which the trauma was affecting my life. It helped me to move beyond being a victim to a survivor, and then it helped me move beyond being a survivor to simply being Rachel.

So where did it all go wrong between the mental health profession and me? I’m not sure it did. As is my history with most large groups, I just outgrew it. And once I outgrew it, I began to see all the ways in which its definitions were still limiting me, because I hadn’t dislodged those definitions from my brain.

The process of debriefing from the mental health profession began when I was still in therapy. I had a conversation with my therapist in which I began to realize that the paradigm I was developing was altogether different from the one in which he was comfortable. We were talking about diagnoses, and I was still very much wedded to the idea of having one—or so I thought. The conversation went something like this:

Me: When you write up your paperwork about our sessions, do you include a diagnosis?

My therapist: No.

Me: If you had to give me a diagnosis, what would it be?

My therapist: Well, you definitely have a mood disorder.

Me: I do?

My therapist: Yes.

Me: How do you define that?

My therapist: Well, you’re anxious and sad a lot.

Me: That means I have a disorder?

My therapist: Yes.

Me: But look at my situation. I’m dealing with being disabled in mid-life. The world is not set up to bring someone like me into full membership. In fact, I feel invisible most of the time. It makes me sad. I’m grieving. Anyone would feel sad and upset in that situation. Why does that mean I have a disorder?

My therapist: Because it’s your problem.

Me: What do you mean it’s my problem? I live in a society that renders me invisible. Why isn’t it society’s problem?

My therapist: Because it’s your problem.

Me: But I can’t solve it alone. I realize that I have to deal with what I’ve been given, but you can’t possibly expect me to just bear up cheerfully under the weight of all this difficulty. There’s a relationship between me and the world here. What about the world’s dysfunctionality? Why is this all on me?

My therapist: [insert patronizing therapist look here]

Me: Do you understand what I’m saying?

My therapist: Yes, and it’s still your problem.

Me: I can see we’re not getting anywhere.

I left therapy soon afterward.

I’ve thought of this conversation a great deal over the past few months. To my mind, it encapsulates everything that is wrong with the mental health profession:

1) Having a human emotion such as sadness, grief, anxiety, or anger in response to an ongoing traumatic, life-changing, unjust, or otherwise maddening situation is evidence of a disorder.

2) The medications I was taking were never on the table as a cause of my anxiety and depression. (As it turns out, they played a major role).

3) We don’t need to talk about disabilism, its impact on people, and how we need to change it.

4) People become transformed into patients and put into diagnostic boxes.

5) We only need to talk about how screwed up the patient is and how we need to change the patient.

Over the course of my life, I’ve been labeled (officially and unofficially) with depression, general anxiety disorder, post-traumatic stress disorder, Asperger’s disorder, autism disorder, and sensory processing disorder. And next week, I’m going to an audiologist who will most likely diagnose me with auditory processing disorder.

I can’t tell you how depressing it is to keep collecting disorders like this. (I suppose that means that I have DODDD: Depressed over DSM Diagnoses Disorder.) All these labels have done a huge number on my head. If I’m going to live a full, happy, and empowered life, I need to send these diagnoses back to where they came from, because they are not me and they have nothing to do with me.

Let’s start with autism, since that’s what got me started thinking about this whole issue in the first place. Autism is not a disorder. It’s not a collection of impairments. It’s not a series of deficits. It’s not something that’s wrong with me. It only looks that way because I live in a society that values certain things to the exclusion of others. It values yacking about non-substantive things; I like substantive conversation. It values social chit-chat; I don’t do social chit-chat. It values being loud; I can’t spend any time in loud environments. It values going fast in every way possible; I cannot follow fast speech, fast-moving objects, or fast-moving graphics.

The society I live in is fearful of silence and deliberation. It thrives on mutually agreed upon deceptions. It abhors directness. It does not honor one’s word as one’s bond. It values appearance over substance. It tyrannizes us with the necessity for “positive thinking” above all else, as though it weren’t simply all right to give vent to one’s emotions when terrible things happen and heartbreak is the only sane response. In short, from my point of view, the society I live in is very unhealthy. Does that mean that something is wrong with me? Why? Because I’m in the minority and the majority is always right? Such nonsense.

My acute sensitivities are not a problem in and of themselves. My emotions are not a problem, in and of themselves. My post-traumatic stress issues are not even a problem, in and of themselves. All of these things can be a source of great power and heartfelt service to others if I use them properly. All of these things only become a problem when they go against an arbitrarily defined idea of “normal.” Then I get people trying to prescribe, discuss, and cure them out of me. But as a friend said to me the other day, please find me this “normal” person, because I haven’t stumbled across him yet. (And yes, the “normal” person is definitely a guy, because being male is part of the standard for “normal.”)

Of all the things that American culture values as “normal,” conformity is the most important. We talk about respecting difference, but if we respected difference, we’d just go around doing it and not talking about it all the time, now wouldn’t we? Here in America, the home of “rugged individualism,” we don’t respect difference. In fact, conformity is Job One. Here’s how it goes: You can only be a rugged individualist if you’re white, male, Christian, heterosexual, and fit into a certain unnamed place on the neurological spectrum. If you’re something else, it gets scary for those rugged individualists. I don’t know why all the rest of us on the racial, gender, religious, sexual, and neurological spectrum should make the rugged individualists faint, but apparently, we do.

When it comes down to it, autistic people, or bipolar people, or schizophrenic people, or traumatized people, or anyone in any other group of people, are just different from a mythic “norm” that simply doesn’t exist. There isn’t a person on the planet who won’t fit into a DSM diagnosis if you look hard enough—or who can’t be misdiagnosed into one if you don’t. They’ve got a diagnosis for everything a human being can possibly go through, which makes life itself a pathology and human beings nothing but walking disorders.

Well, I don’t believe that life is a pathology and that people are walking disorders. To heal this kind of mindset, I’m starting with my own distorted sense of myself as disordered—a distortion I’ve taken on as though it’s a clear reflection of who I am. It’s not. I know that now.

I Am My Own Healer

Rachel Cohen-Rottenberg — Wed, 21 Apr 2010 21:12:14 +0000

What This Post Is Not About: This post is not about healing autism or any of the expressions or manifestations of autism. Autism is not a disease or a disorder. If you interested in healing or curing autism, you are so on the wrong blog.

What This Post Is About: This post is about the fact that I have finally figured out that there is absolutely nothing wrong with me, and that I need to begin healing from my relationship with a mental health establishment and pharmaceutical industry that are doing me far more harm than good. I say this not as an anti-medical zealot, and I am certainly not telling anyone else what to do. I am speaking solely for myself, as an autistic individual who realizes that the system is all upside-down and backwards regarding what I need.

As many of you might have gathered, the past month or so has been very difficult for me. One of the triggers has been that I’ve inadvertently overcome (for the moment) my lifelong use of food as a means of sensory and emotional self-regulation. In other words, I’ve gone cold-turkey off my food addiction. Here’s how the current round began:

A few weeks back, I mentioned to the doctor who manages my medications that I had had a killer migraine and that it had been the first time in years I hadn’t been able to knock out the earliest warning signs with Sumatriptan. When he asked how many times a week I was taking Sumatriptan, and I casually answered, “Oh, about three or four,” he said that I was actually getting three or four migraines a week. The fact that I was recognizing the early symptoms and intervening did not mean that I wasn’t getting them; it just meant that I was stopping the worst effects of them. So, he suggested a preventive, Topamax, which is also an anti-seizure medication. I was to start out with one tablet a week, and progress to two, and then to three. He warned me that one side effect would be appetite suppression.

Nearly three weeks later, I’ve lost seven pounds I didn’t need to lose. Until yesterday, I was in so much emotional pain that it was physically almost unbearable. Much of the emotional pain was the result of withdrawing, without warning, from the food addiction and experiencing all the emotions that came screaming out into the open. As of Monday, the worst of the withdrawal and its attendant demons seem to have past. Now, I’m left mainly with the physical impact of the medication, which is not having an exactly inspiring impact on my emotional state: I’m nauseous almost all the time, I have no appetite, I lose my balance several times a day, and I’m suffering from acute exhaustion.

On Monday, I went to see an alternative practitioner. Bob had spoken highly of her, and I thought, “Why not?” Just to get the negative out of the way first: She was a complete and total pain in the ass about autism. She kept saying things like, “You’re not autistic” and “You don’t have to use such a negative word about yourself.” And yes, she kept saying these things despite the fact that I consistently responded with sentences like “Autism is a very positive word for me.” She kept on at random intervals until I just about wanted to explode. (I didn’t. Score one more for the autistic kid!)

But what she got right was astonishing. Right away, she said that I have a lifelong issue with feeling radically unsafe, as though every millisecond of every day, some disaster will happen and I won’t be able to handle it. I had said nothing past a few pleasantries and “Where is your bathroom?” She just saw it. At one point, she tried to do some mind-body work with me and, when I started crying uncontrollably, she asked if I were on any medication. When I listed out my anti-depressant, anti-anxiety, and anti-migraine meds, she said something to the effect of, “The medication is getting in the way of your being able to develop your mind and spirit. It’s numbing you out.” I had been thinking along similar lines of late. She suggested that I wean off my medications extremely slowly and carefully and go to an herbal healer (at the cost of about $600/hour—not happening) to cleanse and balance my system. Instead, when I got home, I bought an herbal cleansing system online that I’ve used before with very good results. It’s a first step. The package should arrive in the next week or so.

At the moment, healing my body is my life’s work and it doesn’t get much more basic than that. I’ve got a five-part plan, and I’m aware that it’s going to take a long while, and that it’s going to be a full-time job. It’s also going to be a very good reason to get up in the morning, because I like getting down to basics very, very much. Here’s the plan:

1. Cleanse my system using herbal formulae and lots of water (three months).

2. Wean myself off my medications and find natural alternatives.

I’m going to start weaning off the Topamax tonight. I added one tablet last week, and now I’m up to three, so going back to two should be fine. I reduced my anti-anxiety med, Lorazepam, by a third as of last night, and I actually slept better than I had in a long time. My aim is to wean off the Topamax and Lorazepam first, and leave the Zoloft for last. I figure a) the Topamax is new and I’ve lived without it for most of my life and b) the Zoloft takes care of anxiety, so I’m covered.

And yes, I’m being careful. Trust me. I value my health and my sanity very highly. Bob and I are going in together to see my prescribing doctor at the end of the month to discuss the whole matter.

3. Start buying nutritious food, cook it myself, and feed myself three times a day.

This one will be demanding, but I am determined.

4. Declare my independence of the so-called mental health profession.

If I don’t get myself away from the therapists and the psychiatrists and the mental health professionals, I swear to God, they’re going to drive me into insanity. Sometimes, I think that if I see my therapist one more time, my exhaustion will become so acute that I will never recover. And if my prescribing doctor tells me again that I just need to have more fun, I think my eyeballs are going to pop out.

I can’t begin to catalogue all the many things that aren’t working, so I will just give you my overall sense. First of all, my therapist, whom I see once a week, is a very nice man. However, I get the feeling that every week, we are practicing psychotherapy on each other. I am sitting there, trying to understand how his mind works, and he is sitting there, trying to understand how my mind works. The difference between us is that he thinks he understands how my mind works when he doesn’t, and I know that I don’t have a clue about how his mind works, except that it works differently from mine. This difference in both cognitive pattern and insight means that he consistently gives me advice that would work for someone who is neuro-typical and/or does not have my difficulties with language, auditory processing, and acute emotional/empathic sensitivities.

So, the last time we spoke, and I mentioned my desire to meet other autistic and otherwise disabled people, he reminded me not to forget about the neuro-typical people in my life with whom I get along and whom I love—namely, my husband and daughter—and that I should consider befriending neuro-typical people as well. Now, it’s not that I don’t have neuro-typical friends. I do. Some are in California, some are in Massachusetts, and one is in Minnesota. (I had another one out west, but he turned out to be on the spectrum. Yay! Next to Bob, I consider him my closest friend.) But all of these neuro-typical friends are ones I made when I could still pass for neuro-typical. In the present tense, which is where I currently live (sorry for the redundancy, but I couldn’t resist), I can’t pass. I can’t meet people in public settings and talk with them. I can’t go dancing. I can’t go to public lectures. I can’t go to synagogue. How exactly am I supposed to meet neuro-typical people, much less hang out with them in their usual haunts? My attempts to get them to hang out with me in ways that work for me have not been wildly successful.

However, all of these basic, logistical, physical, unchangeable realities of my autistic life, which I have explained patiently to my therapist, and in great detail, over the course of many months, seem to fly out of his brain for no apparent reason. Someday, someone will do some research as to why such important pieces of data would mysteriously disappear from the brain of an otherwise intelligent neuro-typical therapist with a PhD, but until he consents to be a research subject (and one of his peers consents to make him one), I just don’t see it happening.

And then there’s my prescribing doctor, who I like to call Dr. Meds. Like my therapist, he is a very nice man. As psychiatrists go, he knows his pharmaceuticals—to a point, that point being how medications react on the bodies of neuro-typical people. And of course, he would know only how they react on the bodies of neuro-typical people because, to my knowledge, pharmaceutical companies don’t seek out autistic people as test subjects. So, he gives me Topamax, which is an anti-seizure medication, which means it affects my neurological system—my very, very, very sensitive neurological system. So, cool, I’m not getting migraines. Or seizures. But then again, I never got seizures, so now, my brain is so overloaded with medication to keep it calm that I’m falling asleep in the middle of the day and falling down on a regular basis. And the appetite suppression? Appetite suppresion I could live with. The Topamax has put my appetite into a coma. It’s on life support. It’s got tubes sticking out all over the place and my former mother-in-law (who doesn’t speak to me anymore, and no, it wasn’t anything I said) has activated the prayer chain in her church on its behalf.

It’s pretty unbelievable when the people who are supposed to be helping you don’t know anything about autism. It’s even more unbelievable when they don’t think they need to know anything about autism. It’s even more unbelievable when they don’t think they need to know anything about autism and they prescribe you medication.

5. Publish my book.

I know that it doesn’t seem like publishing a book is up there with weaning off medication and eating more carrots, but it’s been immensely healing to nurture my book toward publication.

And so, dear friends and readers, if you have any wisdom regarding natural remedies that you have found beneficial, by all means, please share. And if you don’t and just want to comment on this post, by all means, please do!

That Old Invisibility Thing

Rachel Cohen-Rottenberg — Sun, 18 Apr 2010 16:10:32 +0000

Yes, my friends, it’s happened again. I have been rendered invisible. Not by a neuro-typical stranger. Not at the co-op. Not in western Franklin County Massachusetts, the scene of the horror of my collective shunning. Noooooo. I would have expected all that.

No, my friends. I have been rendered invisible by a neuro-typical friend. By a friend with whom I had discussed the whole invisibility thing. By a friend with whom I had discussed the whole “people seeing Bob as a real person and me not as a person at all” thing. By a friend who had read my blog and had made a commitment to getting together once a month, and who had told me that if it didn’t happen once in a while, it was because he was busy with his family and his work, and that I shouldn’t worry, and that we’d work it out and make it happen: his words, not mine.

I know, I know. I’m such an idiot, believing what people say and all that. Like I have a choice.

And the thing is, this is a really nice person. I mean, I may not pick up nonverbals, but my empathic intuition is excellent, and I’ve never gotten any kind of mean, underhanded, not-what-he-seems kind of vibe from this person. He’s just a sweet guy. What could go wrong? So, we got together in December for dinner, and we had a nice time, and he said he was looking forward to more, and then it didn’t work out for January, and the last email I sent was in January, and I hadn’t heard since, but I figured, okay, he’s busy with his family and his work. I let it ride. I was being flexible.

The next thing I know, I get an email from Bob on Friday, in which he forwarded an email from this friend (who I’ll now call Fred). Fred had sent this email only to Bob, inquiring as to whether he might get a grant from our non-profit for a project he’s doing, and whether it might be appropriate to meet just with Bob, or with Bob and me. Did he copy me on this email, or put my name in the salutation, or ask me whether I might want to meet with him, or address it to me in any way, shape, or form? Noooooo. Of course not. And he knows that I am involved in the non-profit because I co-founded it and co-direct it with Bob, and because the last time we gave Fred a grant, he came and talked with both of us together.

I am so done with this shit. So, so done. Every time this happens, I have the illusion that another piece of me has been seared out of my being, and that illusion needs to stop. Now.

So I said, “Time to stand up for myself. No more second chances for anyone who pulls this shit. No more trying to explain it till I’m blue in the face. Time to tell it like it is. For me. Not for Fred, not for Bob, not for God, not for the Man in the Moon, but for me, so that I get to maintain some shred of self-respect.” So I sent Fred the following email:

“Dear Fred,

Bob forwarded your message to me regarding your project. We’ve discussed the matter in detail, and I’m afraid that the answer is no: our organization will not be able to financially support this project, nor any other project you might be planning in the future.

The reason has nothing to do with your project, and everything to do with the fact that you sent your email to Bob rather than addressing it to both of us and sending us each a copy. After everything that Bob and I have gone through–after all the disrespect that people have shown our partnership, after all the discussions that you, Bob, and I have had about it–it was very shocking to me that you would absent me from your initial request. I was especially dismayed by it, given that you had shown a desire to rekindle our friendship, and had expressed a hope that we could meet once a month. My last attempt to set up a meeting with you was in January, and I was giving you the space to be busy with your life, hoping that you would contact me again. I see now that you were not so busy that you could not contact Bob.

I have to say this, straight out: I am a human being. Disabilities or not, I am of equal worth to every other human being on the planet. I have an absolute right to have people respect me, to have people include me, to have people communicate with me in a way that works for me, and to have people take the time to meet me where I am. If people choose not to do so, I will no longer recede into the shadows and apologize for being sensitive, for being disabled, or for being upset. I get to be here, too. As I am.

I more than welcome your continued presence in Bob’s life. I know it means a lot to both of you, and I want it to continue. But if you are now inclined to make any further attempts in my direction–please don’t.

Rachel”

You’ll never guess what happened? Are you ready? I got an email from him. A half hour later. Right after I said, “[I]f you are now inclined to make any further attempts in my direction–please don’t.” What part of that sentence did he not understand? What do I have to do to get some respect from him? Apparently, I have no control over the matter, except to completely absent myself from the situation, which is what I did. I deleted the email unread.

I’m exhausted.

Feeling Freaky

Rachel Cohen-Rottenberg — Thu, 01 Apr 2010 15:01:19 +0000

Last night, I had a killer migraine. Usually, when I feel a migraine coming on, I take a tablet of Sumatriptan, which stops the migraine in its tracks. It has always worked—until last night. The migraine didn’t respond to medication at all. By 8 pm, I was so nauseous and shaky that I needed Bob to help me navigate to the living room so I could lie down. I couldn’t bear to open my eyes; any kind of light was like torture. I couldn’t even look at the fire in the woodstove. I had the dry heaves, and at one point, I went into shutdown and couldn’t speak or move at all.

But mostly, for about two hours, I stimmed almost constantly—rocking, hand flapping, hitting my head with my fist, over and over. It actually helped—a lot. I’m not sure how much it helped to reduce the pain, but it certainly soothed me in the midst of it. As I went through the whole ordeal, it became clear that a lot of pressure has been building in me. Some of it has to do with Bob’s daughter, and even more of it has to do with my almost continuous anxiety and my drive to figure things out. My poor mind felt so incredibly tired last night, as though I’d overworked it to the point that it was literally screaming at me to stop.

Once my defenses were down, I finally saw what most of the pressure is about: I feel like a freak.

There, I said it. I feel like a freak. I feel like a freak to the point that I don’t want to go outside and be seen with my stupid headset on, or try to talk to anyone, or do anything out there at all. I just want to hide. Watching how naturally the stimming came to me, and how much it helped, brought the issue out into the open. I thought, “Wow, I’m really autistic. Look at what I’m doing—all those things that I’ve been taught are sick and strange and wrong.” Then I realized that I feel sick and strange and wrong, pretty much all of the time, and I’m exhausted by it. It takes so much work to defend against the feeling, to avoid it, to tip-toe around it, to change it. Last night, I hit a wall of exhaustion, and my feelings about myself came pouring out.

I feel like my whole life is strategy. The spring is here, the days are warmer, and I want to go out and enjoy it all. But how do I deal with the neighbors? Do I take off my headset and talk to them? If so, how often? Will they think I’m anti-social if I don’t? Should I have Bob explain the situation to them? All these questions have been circulating through my mind for weeks, and I can’t find any answers. I’m afraid to try anything. I’m completely stuck.

Feeling like a freak puts me in a terrible trap. If people believe that I’m really autistic, I’m afraid that they’ll see my headset and my silence as bizarre, and they’ll just ignore me, which will make me feel even more isolated than I already feel. If they don’t think I’m autistic, or if they think I’m only “mildly” autistic (whatever that means), then they’ll think I’m putting on an act. If they only knew that my whole life up to this point has been an act! I wish there were a third alternative, that went something like: “They will know that the way I am is normal for me, and they will meet me where I am.” But I can’t depend on that response, to put it mildly. At the thrift store, they meet me where I am more often than not, but I’m always afraid that all that will go away.

I’m always afraid, it seems. Sometimes, it lays me low, and sometimes, I just carry it and keep going. Physically and emotionally, I feel things so acutely that it’s hard to feel resilient, and it’s hard to know when something will total me.

I still want to be normal, so much. Not because normal is better, but because it’s physically easier. I’d give almost anything for one day in which I could do anything I want without risk of overload. I’d give almost anything for one day in which I could keep a conversation with a neighbor going for as long as I want. I’d give almost anything to be able to go to a restaurant or a movie without needing three days to recuperate.

But that’s not my life, and very little has prepared me for who I really am.

Even as I write this, I know that someone will read it and think, “Wow, so I’m not the only one.” And then I’ll remember that I’m not the only one, either.

“Encumbered and Blessed”: An Article by Jacob Artson

Rachel Cohen-Rottenberg — Mon, 22 Mar 2010 23:40:03 +0000

Recently, a friend sent me a link to an article written by a young man named Jacob Artson. Jacob is 17, and describes himself as nonverbal, severely autistic, and developmentally disabled. His article, Encumbered and Blessed, is a very moving, honest, and insightful treatment of his experience of inclusion and exclusion in diverse communities.

Jacob’s father is Rabbi Bradley Shavit Artson, and the article appears on the website for the United Synagogue of Conservative Judaism (USCJ). I have no affiliation with the USCJ, and it is not my intention to proselytize for Judaism by referring you to this article. (I do not allow proselytizing on this blog or in my life.)

I am posting the link only because the article is an absolute gem. I’d be very interested in hearing your responses to it.

Autism and Self-Worth

Rachel Cohen-Rottenberg — Sun, 21 Feb 2010 20:48:29 +0000

When I first started therapy (in 1983), I learned that I had to work on improving my self-image. I learned that I had low self-worth, and that if I worked very, very hard, my sense of self-worth would improve.

And it did. I think. At least, I was under the impression that it improved, because I was feeling ever more confident about my abilities as a working woman, a wife, and a mother.

But now I’m experiencing a new phenomenon. I no longer have low self-worth. What I have is no self-worth. At all.

That’s right. None.

I am not exaggerating. Last night, I looked at myself and realized that there is a big empty space where my self-worth ought to be. How my self-worth snuck off without my noticing is beyond my comprehension. But it’s gone. I’ve looked, and it just ain’t there.

Perhaps it went like this: Seven years ago, when I married Bob, I quit my full-time job to become a full-time homeschooling mom; then, a few years later, my daughter went to regular school, and the homeschooling ended. So, in the past seven years, two of the most important ways that I built my self-esteem have gone away: working at a job and homeschooling Ashlynne. During much of that time, I lived in a community that was not very welcoming to me (to put it mildly), and that experience further contributed to my self-esteem issues.

But, you see, I still had “self-esteem issues.” There was some self-esteem with which to work. Now, it’s just up and left.

It’s possible that with working and homeschooling gone, my autism diagnosis set off a massive identity crisis, followed by the realization that my entire way of living had to change, followed by a toxic explosion of internalized disabilism. Whatever the reason, I feel no self-worth at all. I do a beautiful job repairing a quilt, and all I can see are the imperfections in my work. I knit my husband a sweater from the Icelandic wool he spun himself, and all I can see are all the mistakes I made. Everyone in creation is telling my husband what a wonderful sweater he’s wearing, and it has no impact on me at all. People tell me how much they like my writing, and it doesn’t penetrate the dense fog I’m living in.

It’s gotten me questioning how one builds self-worth in the first place. I mean, did I ever have self-worth, or did I just do a lot of things that convinced me I did? Having a job and being a homeschooling mother are both wonderful, but they were always going to end; therefore, I based my self-esteem on impermanent things. That seems like a dangerous move from where I sit right now.

I used to have a decent sense of myself because I always felt that I could fake it well enough to get by. I could make pleasant conversation; I could go to soccer games and act like I belonged; I could chat it up with the neighbors about anything and everything. But working hard to fake it no longer applies. I walk around with a headset and don’t speak or hear very much at all in the outside world. Pretending to be normal basically went up in smoke once I realized that I had to wear a device in public that most people use when mowing the lawn.

Worse yet, my conversations with my therapist seem to be having a negative impact on me. For instance, last week, I told him that I feel like I need to stop talking entirely when I’m out in the world. He kept saying that perhaps it wasn’t all that black and white, that I could be more moderate, check in with myself, and talk more when I wanted, and less when I didn’t. What he doesn’t understand is that for me, moderation and autism do not mix. Moderation can only apply when one has a fairly moderate experience of the world. When one’s experience of the world is extreme and intense, a moderate solution can be worse than none at all.

I’m not sure that my therapist realizes that the minute I open my mouth, I’m already in way over my head. I crave communication. I want to keep talking. So much. But I’m playing catchup with everyone. I’m always a few clicks behind the conversation, and I have to make a tremendous effort to follow what people are saying. When it comes time to speak, I have to call on resources I don’t often have. Plus, I am so used to working hard at speaking that I forget that I’m actually working hard at speaking. It’s always a strain, but the strain is so familiar that I don’t even notice something is wrong until it’s way too late and everything in my body hurts.

I know that my therapist is responding to my upset about my social isolation and trying to come up with solutions, but I don’t need solutions. Unless I happen to run into a dozen autistic people in my local community, my social isolation will remain. So perhaps a better strategy would be to talk about how to handle the seriousness of my disabilities and their consequences for my life. I will never be able to walk through the world as a hearing person. I will never be able to have a relaxed conversation out in public. I will never be able to pass for normal again. I would like some help dealing emotionally with the gravity of the situation, not all kinds of ideas about moderation that simply cannot work for me.

Some years ago, I ran across a book called Shambhala: The Sacred Path of the Warrior by Chogyam Trungpa. The author writes about the spiritual warrior in a way that describes the impulses and demands of my autistic experience. I was drawn to the following words even before I knew about my autism:

“[The spiritual warrior] has no room and no desire to manipulate situations. He is able to be, quite fearlessly, what he is.

[P]aradoxically, the warrior finds himself more alone. He is like an island sitting alone in the middle of a lake. Occasional ferry boats and commuters go back and forth between the shore and the island, but all that activity only expresses the further loneliness, or aloneness, of the island. Although the warrior’s life is dedicated to helping others, he realizes that he will never be able to completely share his experience with others. The fullness of his experience is his own, and he must live with his own truth. Yet he is more and more in love with the world. That combination of love affair and loneliness is what enables the warrior to constantly reach out to help others. By renouncing his private world, the warrior discovers a greater universe and a fuller and fuller broken heart. This is not something to feel bad about: it is a cause for rejoicing. It is entering the warrior’s world.”

I’m not sure I’m ready to rejoice.