Journeys with Autism

In this month’s issue of The Sun magazine, I found the following quote by Philip Slater:

“Despair is the only cure for illusion. Without despair, we cannot transfer our allegiance to reality—it is a kind of mourning period for our fantasies. Some people do not survive this despair, but no major change within a person can occur without it.”

Those were the perfect words for me to find at this particular moment of my life. I’ll try to explain why.

After I wrote my post about self-worth, I noticed myself living with the emptiness inside, and I saw that it wasn’t going kill me. In fact, I felt like a great burden had been lifted from my shoulders. All my life, I’d struggled with improving my sense of self-worth, and now I felt nothing but relief that I didn’t have to struggle anymore. I could stop going to war about it. I could move on. Or better yet, I could just sit still.

One evening, as I sat knitting, I found myself thinking, “Okay, so I feel no self-worth. I feel empty. Yup. Empty. It’s weird. It’s sad. It’s… Hey, this hat is really coming out well…” I was just sitting there with the homespun yarn in my hands, watching myself knit around and around on circular needles, thinking about Bob spinning the yarn, appreciating the fact that the lanolin was healing the cracked skin on my fingers, and not having the pressure to do or be anything in particular. After all, I was empty of worth. What could I possibly do of any importance? Such freedom!

And then, it came to me: The empty place inside is where my parents’ love should have been. I felt no self-worth because I had never felt any love from them. And then I thought about the sexual abuse and the despair I felt when it started. I was eleven, and that was the day that I started to lose my family forever. That man who abused me was not the same man who had thrown baseballs to me in the backyard. He was not my father. It was as though my father had died, and some other man who looked like him, and talked like him, had taken his place. My mother would never have believed me, and so she was gone, too. My brother was only eight. I wasn’t going to tell him. How could I? I didn’t even have words for it. In that moment, everyone was gone, and I was alone.

Since then, not one of my relatives has expressed any love, any compassion, or any concern for me. Quite the contrary, in fact. And all these years and years of losing people started one night when I was eleven, and somehow, I knew it back then. I sensed what it meant for my life. And I was right.

I accept these losses now, but sometimes, they make me very sad. My friend Ben said that it’s okay to be sad about it all. How could I not be sad? Bob has said many times that the emotion I express most is sadness. Of course it is. How many people have I lost over the course of my life? I can’t even keep count of them all.

And then there was the despair of watching my dreams for my life drift away as my disabilities became more and more apparent. As much as I love the gifts of my autism, I’ve had to grieve for that person I thought I was, and at times, the grief has filled me with despair so deep that I didn’t know whether I’d ever be able to climb out of it.

Last week, I talked these feelings over with the doctor who manages my medication. I see him once a month for an hour. As I described what I was going through, he said that my grieving seemed to be going well. He said you know that your grieving is going well when the sadness wells up inside and you start to cry, and then at some point, you notice that you’re thinking about getting a pizza, or that you’re remembering an afternoon with your best friend when you were ten. You grieve, and you leave room for other things to enter. And then he leaned forward and said, “I’m going to tell you a secret. The grieving never ends. You just learn to carry it differently. Nobody wants to admit it, but it’s true.”

Another piece of relief, of a burden being lifted. You mean, I don’t have to resolve this grief? You mean, I don’t have to go to war against it? You mean, I don’t have to feel like an utter failure because I feel sad? How utterly fantastic is THAT?

After all, life is predicated on loss. Life ends. Jobs end. Friendships end. We end. Everything is fragile and finite. Broken-heartedness is one response to all of it. It’s my response to all of it. I’ve been broken hearted all my life. I live in a culture in which we’re always supposed to be happy and comfortable and thinking positively, while at the same time I’ve a) been assaulted by the very people who were supposed to love and protect me, b) had my senses assaulted by the world around me, and c) had my mind and heart assaulted by the madness of the world. I can’t even read a newspaper anymore. The so-called “healthcare debate” drives me crazy. How can adults in the richest country in the world not agree on how to provide universal healthcare? How can they be so arrogant and so unbearably stupid? How can they strut and accuse and lie and play politics with people’s lives?

It takes a spiritual warrior to be broken hearted in a culture like this one.

In the midst of all these layers of sadness and despair, I’ve been burning away the illusions of who I was supposed to be. I was supposed to be able to do anything I wanted. And what were all of these nebulous, terribly important things waiting for me in my future? I don’t even know. They were someone else’s illusions, I suppose. I just took them on. Now the illusions are gone, and I can feel the relief of being exactly who I am. I walk around town in a big old headset, communicate with people in writing, don’t make much eye contact, and that’s who I am—right now, right here, at this very moment.

The rest is either a dream of who I was supposed to be, or the memory of who I no longer am. I was once the mother of a small child, but no more. I was once married to her father, but no more. Bob and I once led services together, but no more. I used to work full-time, but no more.

If I keep living in what’s past, I’m living in a world of illusion, and my whole life has been about truth, about speaking the truth to my family, about dealing with the consequences, about never being able to do anything other than say what’s real, despite the fact that it rarely gets me what I want—compassion, support, friendship. But it’s who I am, and I love that it’s who I am. My whole life has been about trying to see things as they really are, and about trying to speak about them as they really are. And somehow, the despair I’ve felt has burned through layers and layers of illusion, and left me with the time and the willingness to look at the truth of my life.

At times, I’ve been afraid that my despair would swallow me alive. Some people don’t survive despair. I’ve wondered at times whether I would survive it. But then I remember that I have a fierceness inside me, like an unquenchable flame. Somehow, the despair has taken my fierceness and used it burn through so many illusions that I am left empty and can begin to live.

© 2010 by Rachel Cohen-Rottenberg

I went to New York City with Bob for three days last week, and I made a new friend. I know you already know one another (fairly well, in fact), but you’ve never been formally introduced. Kindly forgive the social faux pas, which I will now graciously remedy:

Blog readers, meet My Eccentricity. My Eccentricity, meet my blog readers. My Eccentricity has been around for awhile (as long as I can remember, in fact), but we’ve only recently become close friends. It’s amazing what a trip to New York City will do for you.

And how did I happen to end up in New York City for three days when I frequently quail at the prospect of going grocery shopping in our quaint little New England backwater? It was love. Of course! Read on.

The Incentive: I was tired of being away from Bob for three days every other week. He was tired of being away from me for three days every other week. Spending time with his dad is an imperative for Bob, so the idea of cutting back on these visits never occurred to either of us. The only way to get more time together was for me to get in the car and go to New York City.

The Drive to New York City: It had been about a year and a half since Bob and I had made the four-hour drive to New York together, and I had missed those times. It’s always been great to go for a long drive and have time to talk, joke, and just be together. So, although the drive was completely overstimulating to my poor Aspie nervous system, I made it to the hotel without getting a migraine. The fact that we took the Merritt Parkway, on which no trucks are allowed, went a long way toward keeping my stress at a reasonable level.

The Hotel: The room was nice, the employees were friendly, and best of all, I didn’t leave the place from the moment we checked in until the moment we checked out. Now, it may seem that going to Manhattan and staying indoors was a waste of time, but I assure you, it was not. The sensory minefield of the drive was sufficient for a first outing, thank you, so I decided to make the best of my time at the hotel. I finished incorporating all the review comments into my book, I caught up on my ASL homework, and I made great strides on a sweater I’m knitting for Bob. Plus, the hotel had an awesome fitness room, and I was the only person in it for over two hours. I actually found a way to have solitude in New York City! I should write a book.

And did I mention that Tuesday was our seventh wedding anniversary? It was! So, we ordered in dinner from room service, chose a movie to watch, and…that’s as much as I’m going to say.

The Impact of the World at Large: During the time that we were in New York, the people of Massachusetts made a terribly asinine an ill-advised decision and decided to honor the memory of Ted Kennedy by electing a man who ran on a platform of derailing healthcare reform in the Senate. And what was worse: Every time I went onto the Comcast website to retrieve my email, I had to see a headline about it. Arghh. So, although I knew that I couldn’t cure the insanity overturn the will of the people of Massachusetts, I could do a couple of things to make myself feel better: a) go on a news fast and b) install a desktop email client so that I never have to use Comcast webmail again EVER. I did both. More on how I dealt with the healthcare debacle later on.

The Drive Back to Vermont: After three days, we were very ready to go home. So, while Bob walked to the parking garage to get the car, I ensconced myself on a sofa in the hotel lobby—a sofa that was so big that when I sat all the way back, my feet dangled over the edge of the cushions. I felt like a little kid in a room full of grownups—kind of how I feel all the time, except that this time, I felt very cute. The lobby also got noisy, so it was a relief to get in the car and head back to our quiet lives in Vermont. We left in sunlight and arrived home just as it was getting dark.

My Healthcare Reform Rant: By the time we got home, I was a wee bit very much on the overstimulated side. I was talking a blue streak, bouncing off the walls, unpacking like it was the last thing I’d ever do, and feeling really, really happy and energetic for the first time in a long time. I hadn’t been depressed exactly, but protecting myself from the possibility of overload had left me feeling isolated, and the trip to New York had made me feel like part of the world again. I finally realized (duh) that I don’t have to conform to anything (duh) except the laws of wherever I happen to be (duh), and that I can indulge my eccentricity any old way I please (duh), especially (duh) in the comfort of my own home.

So, because I was royally pissed off by the whole disaster in Massachusetts, I decided to expend some of my rather impressive store of nervous energy by indulging in the following rant:

“What the HELL were people thinking? How can they NOT know how badly this country needs healthcare reform? Are they crazy? What the hell happened?

Oh, I know. They let children vote in Massachusetts. Children. Well, actually, people of legal age with the mental acuity and social consciousness of children.

But wait. That’s an insult to little kids. In fact, I can’t compare these people to anyone, because they’re being so mind-numbingly ridiculous that any comparison to any other group of people would be unfair. I mean, how do you describe people who think that if they get sick, their insurance company is going to cover the costs? And not raise their premiums? Hahahahahahahaha! What planet are these people on?

And how the HELL did Ted Kennedy’s Senate seat end up in the hands of a person whose only aim in life (apart from looking perpetually young) is to derail healthcare reform? I mean, do people have ANY respect for Ted Kennedy’s legacy, for the way he supported the working person, for the passion he felt about healthcare reform? HELLO? ANYONE? Holy shit. I hope they issue an alert for the area around Arlington National Cemetery, because right now, Ted Kennedy is SPINNING in his grave at such a high velocity that his burial place is sure to become the epicenter of a MASSIVE EARTHQUAKE. Maybe then, all those folks in Congress will WAKE UP to the need for universal health care.

But wait! They already have universal health care. Paid for by the US government! Oh. My. God. It’s socialized healthcare. For Republicans. Can the hypocrisy get any worse?

Yes, it can. The Democrats in Massachusetts can blame everyone and everything for their defeat, but last time I looked, Martha Coakley, the freakin’ attorney general of the state, never even ran a freakin’ campaign. What was she THINKING? That the ghost of Ted Kennedy was going to anoint her the Senator from Massachusetts?

Martha, honey. It doesn’t work like that. DUH!! How can you be the attorney general of the state and NOT KNOW THAT???”

I felt better.

The Day After: I went to work at the thrift store. I was friendly. I made conversation. I extended myself. I brought home a quilt to repair. I was still pretty buzzed.

The Day After That: Bob and I discussed how much fun I am when I’m feeling energetic and inspired. And why people with autism so often get diagnosed as bi-polar. And how I really am fine the way I am, however I’m feeling. And that I don’t need to ask the world’s permission to be myself.

And Now? No crash and burn. At all. Just some tiredness and a sense of relaxation. Amazing, eh?

That’s what happens when I go out into the world and stop worrying about what people think of me.

© 2010 by Rachel Cohen-Rottenberg

In my last post, I discussed my commitment to move ahead with my life in the knowledge that I have no extended family. That reality is still very clear to me, and I got a very vivid reminder of it last night.

As you might have noticed, I have a rather large extended (former) family, with many, many cousins. At this moment, I’m turning my attention to a cousin I’ll call Boris. I haven’t seen Boris in 30 years or more. I never knew her well, but over time, a couple of people in the family made remarks to the effect that she might have been abused as a child. As cousin Ralph might point out, I have no way of knowing one way or the other. Boris herself has never said anything about it. If she did, I would believe her, but we’re never going to get anywhere close to that conversation.

Read on for details.

After I had scattered the ashes of my hope for an extended family, my conscience started to bother me about Boris. What if she were another survivor? What if she thinks she’s the only one? It didn’t feel right to simply go away without saying something to her, but what should I say? I stewed on it for awhile, and I finally realized that all I needed to do was to give her my contact information, in case she ever wanted to get in touch with me. (Please stop groaning.) So, I sent her a message that was as benign and as neutral as I could possibly make it:

“Hi, I’m your cousin…I now go by my Hebrew name of Rachel, and I’m married. If you ever want to contact me, you can reach me at rachel.vermont@comcast.net.

I hope that all is well with you.
Rachel”

I knew that the family lie had made it to the outermost reaches of my (former) family, so I knew it was entirely possible that the lie had made it to her door. I felt good in my heart for having done the ethical thing, and that was all that mattered to me. And so, I was prepared for her to ignore me, or to simply say “Fuck off.”

But no. Nothing is that easy in my (former) family. I’ll paraphrase Boris’ response. She said:

1. She doesn’t have a cousin anymore.
2. Her losing me as a cousin was my choice.
3. I have to live with my choice, so go to hell.
4. If I ever contacted her or any member of her family again, she would seek out a civil harassment restraining order.

I will never have to get all “Aspie-and-wordy” again to describe the toxic nature of my original family system. You have the whole family dynamic in a nutshell, right here: shunning, blaming, distortions, lack of compassion, and unprovoked threats. There it is. All on a platter, along with my head.

And why? Because I offered someone I barely know my email address and said I hoped she was well.

Okey dokey.

So, then I got to talking with Bob and with a good Aspie friend of mine about this latest turn of events, and I suddenly realized that I was being bullied. Moi, bullied? I thought. Moi, with a blue belt in karate? Moi, with 25 years of therapy under my belt? Moi, the mama bear who has been known to risk reputation and throw social graces to the wind on behalf of her (now nearly grown) little cub? Yes, I’m afraid so.

And then, I thought, wow, that’s exactly what happened with my parents and with my brother. They bullied me. My father bullied me with physical pain, with unwanted touch, and with threats of harm. My mother bullied me with lies, ridicule, and manipulation. My brother once pinned me to a car because I disagreed with something he said, and he shunned me when I broke contact with my parents. And then there was Uncle Sylvia, and our disastrous conversation of three years ago, in which he ridiculed me for asking for love and compassion over what I had suffered. And come to think of it, every single family member who has heard the lies about me and believed them has been bullying me with their silence and their rejection ever since. It’s absolutely amazing to finally realize it.

All this bullying, all directed at me. Innocent, good-hearted, clueless, Aspie me. But why? I have a few ideas. (Feel free to add your own).

1. I walk into every room thinking that people are all set to receive love, attention, and goodness from me. I just have to be clear and non-threatening, and we’ll all get along, right? What could be simpler? Ha ha. It’s not bad to want to be loving and attentive, but the expression “pearls before swine” keeps coming to mind.

2. I am very childlike. I have a kind of innocence that all the abuse in the world has never been able to take away from me. So, I figure that people feel powerful bullying an innocent person. Or something. I have no idea. It’s just a guess.

3. For much of my life, I tried so eagerly, so earnestly, and so innocently to figure out the rules and play by them that people began to see me as defenseless. And, as a kid, I was defenseless, just as any other kid. But for me, there was an extra element of defenselessness, because little autistic me could not understand lying, cruelty, social rules, and social hierarchies. I just kept trying to make sense of them and be everyone’s friend. That made me more than a little vulnerable.

4. Despite my once-unquenchable desire to figure out the rules, fit in, and be normal, I have always been the Achilles heel of the family. Why? I’m an Aspie. I speak the truth. I break illusions. As such, I am the person who is the ever-present reminder that the family ain’t nearly as perfect as everyone would like to pretend it is.

5. I am the person who left the bullies behind. A dysfunctional family system cannot tolerate people leaving just on account of they’d rather not be bullied.

So, I reach out to someone genetically related to me, on the off chance that she might need it, just to feel that I’ve done the right thing, and the whole family system comes roaring right at me.

God, I’m having a serious autism moment. The gig has been up for a long time, and I’m the last to know.

Comments and hugs both appreciated.

© 2010 by Rachel Cohen-Rottenberg

Don’t worry: I’m not obsessing about death.

In fact, I’m planning on living on planet Earth for another fifty years. I figure I’ll need at least that long to understand my life and write about it. It’s a good plan, don’t you think? While I don’t discount the indisputable wisdom of the Yiddish saying, “If you want to give God a laugh, tell him your plans,” I know that God will make an exception for me. How do I know this? It’s simple: I’ve communicated my needs clearly, I’ve come up with a sound plan, and God knows, I need predictability.

So, while my tenure here on earth is assured, I often wonder what will happen after my soul departs my (101-year-old) Aspie body. In fact, over the course of my lifetime, I’ve had a number of theories on the subject, all of which I will now impart to you.

1. Ages 4 to 9: Don’t ask because you can’t know.

This theory came courtesy of my mother after I asked her about God. I’d heard this “God” word from someone, and I’d wondered what it meant. Here’s how the conversation went:

Me: “Mommy, who’s God?”
My mother: “God created everything.”
Me: “Okay. So where’s God?”
My mother: “God is in everything. God is in you, in me, in the air we breathe, and even in the kitchen table.”

[At this point, I have my first mystical experience. I can feel God in every molecule of the air, very close to me, but not crowding me. Then, I look at the kitchen table, and it's radiant with light.]

Me: “Who created God? And who created the God that created God. And who created the God who created the God who created God?”
My mother: “Don’t go there. You’ll drive yourself crazy.”

For nearly every other moment of my childhood, my mother was an ardent atheist without a spiritual bone in her body, so I’ve always considered this conversation to be the product of some sort of Divine intervention. In addition, despite the fact that my mother had not been taught anything about Judaism, she somehow communicated one of its core tenets to me: the absolutely unknowable mystery that is God. At that moment, I grasped that not only was God a mystery, but that everything concerning God was a mystery, including the question of what happens before birth and after death.

2. Ages 10 to 12: We’re born, we suffer, we die, and that’s all there is.

This theory also came courtesy of my mother. It’s the core tenet of that good old-time religion called “Jewish atheism.” Yes, trust me, Jewish atheism is a religion. Sometimes, it’s called “secular humanism,” and sometimes it’s called “democratic socialism,” and sometimes, it’s just called “Get your Bible out of my face and allow me to make the world a better place than I found it.” In my parents’ case, it was called “We’re just a bunch of molecules bouncing around the universe with no purpose whatsoever.”

3. Age 13: I am definitely going to hell, and it will be very, very painful.

This particular stage in my thinking came from a televangelist whose name I can’t remember. Why was a nice Jewish girl like me watching a televangelist, you ask? Well, my parents always watched the Billy Graham Crusade on TV. They didn’t watch it for the spiritual content. They watched it rather like anthropologists who have no respect for their research subjects. I can remember my father, in particular, being appalled by the spectacle of fear being used to elicit faith. My parents detested religion, and to them, the Billy Graham Crusade was a prime example as to why.

But somehow, all the fear-mongering got to me. One night, while I was lying in bed, I turned on the little TV I’d gotten for my birthday and found a station on which a televangelist was preaching. He said that whether your sins are big or small, it’s all the same to God. If you don’t accept Jesus as your Lord and Savior, you will burn in the everlasting fires of hell. However, if you do accept Jesus as your Lord and Savior, every single sin will be wiped away for all eternity, and you’ll never have to worry again.

Oh my. I did not want to burn in hell. Definitely not. And it all seemed so easy: I could become a Christian, and all my worries would be over. I was a very worried little Aspie, so the deal sounded good. There was one catch, however: I was Jewish, and I was pretty certain my parents would throw me out of the house immediately if I became a Christian. 

So, for next three weeks, I spent most of my time obsessing over every small thing I had ever done wrong in my life. (I hadn’t lived very long yet, so my recall was quite good.) When I was finished with the backlog, I obsessed over all the little things I was doing wrong in the present, many of which I probably wasn’t even aware of yet. And then, of course, there were all those things I might do in the future. It was overwhelming. The more I thought about the inevitability of screwing up, the further I descended into a state of abject misery.

One Saturday morning, at Hebrew school, I told my friend Caryn what was going on with me, and she miraculously lifted the burden from my shoulders. Here’s the conversation:

Me: “The televangelist says I’m going to hell if I don’t become a Christian.”
Caryn: “You’re not going to hell.”
Me: “How do you know?”
Caryn: “You’re Jewish. We don’t believe in hell.”
Me: “You sure?”
Caryn: “Yup.”
Me: “Okay. I feel better now.”

4. Ages 14 to 22: “It’s not worth thinking about. After all, I’m immortal.”

5. Ages 23 to 33: “I want a husband, kids, and a career. I simply don’t have the time to spend worrying about what happens after I die. I’m too worried about what’s going to happen while I’m still alive.”

6. Ages 34 to 40: “If I’m a good person, I will have everlasting life (whatever that is). If I’m a bad person, I will simply cease to exist altogether. That wouldn’t be good.”

7. Ages 41 to the present: “I will be reincarnated many times, in many places, depending on what I learn in each lifetime.”

There is a Jewish belief in reincarnation called “gilgul,” which basically posits that we return to this earth many times in order to make things right from a past life or to help others along their life paths. This particular philosophy appeals to me tremendously, because it explains so much:

a) Why some people do so much evil and others do so much good. What can explain the fact that Adolf Hitler and Mother Teresa once inhabited the earth at the same time? Are some souls simply born evil and others simply born good? No, that can’t be. If we’re hardwired to be good or evil, then there can be no free will and no morality. So, perhaps, Mother Teresa had been reborn thousands of times and had learned profound wisdom along the way, while Adolf Hitler hadn’t been around much and was therefore operating under a series of extremely dangerous delusions.

b) Why I got born into my abusive family. It took me a long time to work this one out, but I’ve come to feel that I actually chose my parents. That does not mean it was okay that they were abusive, or that I asked for it. It simply means that my soul might have seen the potential lessons to be learned through them (without knowing the details), and that I decided that I might as well give them a try. I’m also thinking that if I were as impatient in the spirit world as I am in this world, I may have been getting restless with the whole “being between bodies” thing and acted rashly.

c) Why I’m autistic. Maybe in a past life, I was a smug neuro-typical person who thought I had all the answers. You can’t learn anything that way. So, I came back as a periodically smug autistic person who more than occasionally thinks she has all the answers.

Hey, I’m doing my best.

Of course, I don’t really know what will happen. I guess I’ll find out in the afterlife. Or not. Who knows?

© 2009 by Rachel Cohen-Rottenberg

Bob and I have an appointment to see the doctor on Friday about my blood work and EKG results. When I say “Bob and I have an appointment,” I mean that Bob will be physically present, and that I will be present in the form of a letter that he will bring with him.

Going to the appointment alone was Bob’s idea. He said “It’s always stressful for you to go to the doctor, and this time, you’re dealing with the prospect of discussing tests that you don’t want to have. Since we’ve talked out all the options, why don’t I go to the doctor, discuss any additional test results, and then bring them home to you? Meanwhile, you can write a letter stating your thoughts, and I’ll give it to the doctor.”

Isn’t he a great husband? I think so, too.

So, I wrote and signed a statement giving the doctor permission to talk to Bob about anything related to my health and medical history. Then, I wrote the letter to my doctor. I want to share it on my blog because it provides an example of the way in which writing empowers me by giving me an alternative to sitting in an office, overwhelmed and unable to express myself properly.

Disclaimer: I am not a medical professional or a medical authority, and I am not advocating that anyone follow the path that I am following. What works for me won’t necessarily work for anyone else.

Here is the letter. Some of the information has come from previous posts, so parts of the letter will probably sound familiar to some of you. (I’ve left out my doctor’s name to protect her privacy.)

“Dear Doctor:

A word of explanation: I’m writing this letter because I find it much easier to say things in writing than in person. Because I’m autistic, conversation with even one other person is difficult. I cannot read nonverbal cues, so I can’t use the same kinds of “shortcuts” that neuro-typical people use to understand the meanings behind the words. My brain has to work very, very hard on words alone, and it gets tired very, very easily. After just a few minutes, I am “full,” and I can’t integrate any more information.

I want to let you know my thoughts about the ST depression on my EKG. I’ve done some research as to possible causes. While the ST depression could signal heart disease, I have no risk factors. I exercise regularly and have done so for all of my adult life. I don’t drink alcohol or coffee. I haven’t smoked a cigarette in thirty years. I have never been overweight. My blood pressure is always in the low-to-normal range. I have taken care to eat healthy food since my early 20s, and my diet presently consists of fruit, vegetables, chicken, fish, soy products, tahini, almond butter, whole grains, and very little salt. I have allergies and sensitivities to a wide range of foods, including dairy products, gluten, refined sugar, and hazelnuts. In addition to removing these foods from my diet, I have also removed the processed, high-fat, and high-salt foods that contribute to heart disease.

Other possible causes of an ST depression are:

1) An electrolyte imbalance
I don’t know yet whether an electrolyte problem will show up on the blood work you ordered, but I wouldn’t be surprised if it did. I take a multivitamin, but I do not take any supplements containing potassium, magnesium, or calcium.

2) Positional vertigo
I have a condition called severe gravitational insecurity, a problem with my vestibular system similar to positional vertigo.

3) Stress during the EKG itself
I have appreciated your sensitivity to my sensory needs and your willingness to learn how autism affects me. However, going to any public place is very stressful on my body, and coming to your office is no different. Part of being autistic is feeling that I am always in the range of an unforeseen sensory assault, whether auditory, visual, tactile, or olfactory. For me, auditory overload is a particularly significant problem. Because I have no ability to filter or prioritize auditory stimuli, I have started to use a noise-reduction headset, which has given me my first experience of “background noise.”

Unfortunately, during the EKG, I had no hearing protection, and the woman who administered the test talked continually. She talked mainly about her autistic son, a subject that would have interested me were I not about to have an EKG. When people talk and talk, without understanding that I have a great deal of difficulty processing speech, my nervous system response is extreme. I feel fearful and overstimulated to the point of panic. During my EKG, I was in a state of acute sensory overload. These kinds of responses have been shown to cause ST depressions in otherwise healthy people.

And of course, for some people, ST depressions are a normal part of an EKG, with no ill effects at all.

I understand that it’s your responsibility to suggest an echocardiogram and a cardiac stress test, so I want you understand the impact of these tests on my body. An echocardiogram may seem like a simple test to most people, but for me, going to the hospital, waiting in a room with other people, wearing a gown, having gel put on my body, and having a complete stranger do an ultrasound would put me out of commission for several days afterward. I don’t simply mean that I’d be fatigued. I’d be completely exhausted. I’d have bladder pain, neck soreness, stomach upset, nausea, migraine, and sleep disturbance. I would lose my appetite and my ability to focus. As you can imagine, a 3-5 hour cardiac stress test would amplify these responses by several orders of magnitude. I would be very sick and completely nonfunctional for a week or more.

Tasks that are simple to other people, like going to the grocery store or to the post office, are very difficult for me. Medical tests in a hospital are beyond difficult; they border on the impossible. Unless there is a clear medical need to go through them, I don’t see anything to be gained by having a procedure that is going to make me sick. Therefore, I am going to decline the echocardiogram and the cardiac stress test. I understand there is some risk involved in doing so, but there is also great risk to my well-being if I take the tests at all.

Regarding other medical tests, we’ve talked about scheduling a yearly physical, mammogram, and colonoscopy for the same month each year. While logically this plan makes sense, physically it would be a disaster. One test a month is all I can do, and I cannot have several scheduled in advance. I need to have one test and then recover before making the next appointment. I have started keeping a list of the dates of my tests so that I can see when I am due to have them again.

Because I’m having difficulty seeing clearly out of my glasses, my next medical visit is to the ophthalmologist in September. After that, I will consider having a mammogram, though the level of neurological stress involved is comparable to what would result from an echocardiogram. I definitely do not want to have a colonoscopy each year; my nervous system would have a very bad reaction to it, and I can’t go through it.

It might seem that I am making the wrong trade-offs here. It might seem that I am unwilling to go through a short period of “discomfort” in the service of finding out whether I have a treatable illness. However, please know that in the 50 years that I lived with undiagnosed autism, I drove myself mercilessly against my neurology in ways that have irreparably harmed me. At present, and for the foreseeable future, my most important priorities are to spare my nervous system undue stress and to improve my everyday quality of life—even if that life might be shortened for lack of the proper test at the proper time. I have given this matter a great deal of thought, and I know that this course is the best one for me.

All the best to you,

Rachel Cohen-Rottenberg”

© 2009 by Rachel Cohen-Rottenberg

Several months ago, my husband made plans for a ten-day trip to California. The first weekend was to be a reunion of old friends and family, followed by a trip to Yosemite with his daughter, and ending with a big celebration of his aunt’s 90th birthday. Since I don’t like flying, I don’t do groups well, and I was absent on the day they passed out the “adventure” gene, my husband was going to make the trip alone.

This plan was nothing new. Throughout our relationship, Bob has made at least one ten-day trip to California each year. As for me, I have always had a very hard time when he goes away for so long. Before I knew that I was autistic, I’d always thought I had lots of “issues” to resolve, and that I needed to “work on myself,” so that I, too, might be able to make these trips and act like a “normal” person. Even when it became clear that I wasn’t really all that interested in going, I wanted to work on handling my emotions better—both for my own peace of mind and for Bob’s ability to enjoy a guilt-free trip. So, I worked on not crying inconsolably every time he left, on getting together with friends, and on otherwise distracting myself from the fear, trembling, and massive anxiety I felt at being left on my own for ten days.

This year, everything changed. In the early part of the summer, I began to actively resist the idea of Bob going to California at all. At this point in my life, I don’t feel inclined to just “suck it up” and “work on my issues” when I have a strong feeling about something. I figure that I’m an intelligent, kind, good-hearted person and that if I’m feeling resistance, fear, sadness, or any other emotion, I should maybe, um, respect it. It’s never all that easy, because I have all kinds of conflicting emotions, which lead to all kinds of conflicting desires. As far as Bob’s trips go, I always find myself caught in the same dilemma: I want Bob to enjoy travelling, and I want him to stay here with me.

We’ve been negotiating on this trip for a couple of months. At one point, we discussed the idea of his going for a shorter period of time. A shorter trip seemed like a great solution. It seemed logical, it seemed manageable, and it seemed abundantly fair. At least, it looked that way in my mind, that part of me that likes to work out rational solutions without considering their impact on the rest of my being. In this case, while my mind was saying, “That sounds okay,” everything else in me was saying, “No, no, no. No compromise will work. Forget it.” It was a full-out, visceral feeling that I couldn’t shake. Nor could I shake the feeling of guilt at being so inflexible.

After much struggle, I finally realized why I was feeling so strongly about Bob staying here. He takes care of so many things that I can no longer do that it feels really frightening to have him be away for so long. Of course, with some advanced planning, we might have taken care of the logistical details, but it really wasn’t just the trip to California. It’s the fact that if Bob should leave the planet before I do, I have absolutely no support network set up to take care of all the things that he does. What if he went to California and didn’t come back? Where would I be?

I finally began to understand why I’d always felt like a basket case when Bob took a long trip.  Even before I knew I was autistic, even when I was still gamely trying to do everything that “normal” people do, it was clear that I did not function well when Bob was away. The autism diagnosis only brought the reality of mid-life autistic burnout into the light of day.

To make a long story short, Bob decided to cancel his trip to California this year. We’ve decided that, apart from his trips to see his dad in New York, he won’t take another long trip until we get a support strategy figured out and make sure that it works. I so much want Bob to be able to travel and have a great time with his family and friends, but we’re only at the beginning of dealing with my autism. Right now, I feel as though I’m out on the open seas without a life raft, and I can’t have my partner taking a ten-day journey to anywhere until we get a survival plan in place.

Given my love for lists, I took on the task of making a list of all the things that I need a support network to help me do:

1. Housecleaning. (This problem is solved. We’ve hired a great person who comes in once a week to clean our house.)
2.  Driving my daughter where she needs to go. (This problem will take care of itself fairly soon. When my daughter gets her driver’s license, she will also get my car.)
3. Food shopping. (My new headset might allow me to go food shopping on my own. I plan to try it in the near future, and I dearly hope that it works.)
4. Cooking meals.
5. Running outdoor errands.
6. Going to doctor, therapy, or hospital appointments.
7. Making telephone calls.
8. Advocating for myself with the health insurance company, the doctor, the cable repair person, and the rest of humanity.
9. Keeping track of the finances for our household and for a small non-profit that we run.
10. Spending time with friends.

As I looked over this list, I had some significant realizations:

1. Bob needs a respite from being my sole support person. At this point, he’s not complaining, but when he’s sick with a cold, I feel like hell asking him to do the things I can’t do. Setting up a support network will allow him to get a break when he needs one, and I won’t feel so inclined toward a meltdown when what I want to do conflicts with what I can do.

2. I supported myself for thirty years, including seven years as the sole breadwinner when my daughter was small. I kept up with every penny, wrote every check, and worked out every budget. Since Bob and I have been married, he has taken on these tasks, and it has been a great relief for me.

However, as a result, I have found myself in the dark about our income, our expenses, and all the bills that come into this house. So, yesterday, Bob and I sat down and he showed me every last bill, every last expense, every last account, and every last penny of income. I made a list of everything he showed me. Now that everything is down on paper, the whole process of keeping the house going feels more manageable to me. I know that I could take care of the finances myself if I had to. In addition, I was able to organize our financial papers so that I can find the information when I need it.

From this point on, I plan to stay more involved in our financial life. Doing so has already felt very empowering.

3. One of my all-time greatest fears is growing old alone and being put into a hospital or nursing home. Given that I have no idea how well I’ll be functioning as I age, it makes sense that I find someone who can advocate for me if I outlive Bob—someone who will have power of attorney with my best interests at heart. I can think of several friends I would entrust with the job, so I’m going to consult a lawyer about all the issues involved.

4. As much as I hesitate to enter any bureaucratic process, I am considering applying for Social Security disability. I know people who have done so (and succeeded), and the key was having a knowledgeable, supportive person involved in the process from beginning to end. Even in the best situation, the process is very onerous, but if I’m going to get assistance with basic tasks from someone other than Bob, I’d like to help pay for it.

5. I have some wonderful friends, but I avoid spending time with them because I know how easily I get overloaded. My therapist suggested that I talk to my friends about it. Since I feel completely ill-equipped to begin such a conversation, I’m going to explore the issue further with him. If I have friends that I know I can see, it will help with my fears of being left alone.

And how does my husband feel about cancelling his trip to California? Sad, disappointed, but not angry. He is starting to face the fact that the autism is real and pervasive. He’s starting to see the situation as it really is, not as we once dreamed it would be. We’ve both been crying a lot, but we’re crying together, and that makes all the difference.

© 2009 by Rachel Cohen-Rottenberg

When I first got my Asperger’s diagnosis, I was so relieved. I was able to look back over the course of my life, from the distant past to recent events, and see the common thread linking everything. For awhile, it felt great. I love when things make sense, and the Asperger’s diagnosis made beautiful and astonishing sense.

Then, after a month or so, I got done walking on air and began feeling a lot of grief for the things I couldn’t change, for the person I couldn’t become, and for the end of believing that I could do anything I wanted to do. Since that time, I’ve been in a sort of holding pattern, and I’ve felt like I was doing okay. But now, I feel like the bottom is falling out.

On the outside, nothing has changed. I am physically healthy, my marriage is great, my kid is happy, I can write no matter how fried my head feels, and anyone looking in from the outside would probably assume that I’m doing just fine. The problem is, because I don’t go out much anymore, very few people can actually see me from the outside. I’m feeling an absolute aversion to going out into the world. Some days, I can take walks on quiet streets, so long as I’m a) wearing my Sonic Defender earplugs, b) wearing sunglasses, and c) keeping my eyes fixed on the ground whenever I see a person anywhere near me. I have to control what I look at and what I listen to, as much as I can. But most days, I don’t want to go anywhere.

One by one, I’m watching all the dreams I had for my life fall away. The funny thing is, I thought I’d already let go of so many. What could be left? I just had a few small dreams I was holding onto—going to the movies with my husband, having dinner out, getting dressed up and working at the store. Last year at this time, Bob and I went to the movies on Saturday nights, and I loved getting dressed up for work. I was even hoping to find a part-time job. But now, just a year later, even those small things are gone. I look at all the clothes that I bought last summer at the store, and I want to cry. They belong to an era in which I naively thought I’d be a strong, confident part of the world. That era seems very far away.

It seems like anything I want to do “out there” isn’t possible. Even the people from the school for autistic kids haven’t gotten back in touch with me, and it’s been over two weeks. Maybe they read my blog and decided they didn’t like me? Or maybe, I’m just supposed to let go of the world “out there” and stand face to face with the unmistakeably autistic person I am.

I have very little energy for NT emulation. I know how much it burns me out. I go into the world and put on my face, get overwhelmed and anxious, and come home unable to locate myself. Somewhere between being housebound and being in the world, there’s a huge rift and I fall in. Every time.

I love the natural world, and I love people, and I find the things that people do very interesting, and sometimes very beautiful. But it’s all overwhelming to my senses. When I go into the world, and I take in all the sense impressions and emotional energy, I end up feeling like I’ve been hit by a train.

It used to be that I was just afraid of people with bad energy, but I can see those types coming from a mile away. It’s not hard for me to spot them, and it’s not hard for me to walk away from them. It’s the really friendly people that give me the difficulty now. I want to be around them, I want to talk with them, and I want to be one of them, and yet, I simply can’t. I went to the thrift store with Bob last week, just to see how it felt. Everyone was so welcoming and so glad to see me, and I loved seeing them, too. But after a half hour of being in the store, I was disoriented and exhausted. It took me most of the next two days to recover.

Then, on Sunday, I had an emotional blow-out, and spent much of the day crying over feeling so isolated and alone. On Monday, Bob left for New York for a couple of days, and I was still crying. On Tuesday, I stayed in all day. By Wednesday, I was sitting at the breakfast table, handflapping and rocking. In the past, when I’d get overloaded, I’d have to think about what to do—lie under my weighted blankets, work out, sing, do some hard work. Now, I’m just stimming, early and often.

From the point of view of the autistic person I am, this kind of stimming is progress. In fact, I love it. It feels natural. It feels like some sort of ancient healing ritual. It feels like I’ve lived my whole life unable to speak my native language, and now I can.

But from the point of view of the highly accomplished and assertive person I used to be, it feels like I’ve been the hapless victim of a major fraud. How can I possibly have lived on this planet for 50 years without knowing that I’m autistic? I can see living here for one year, or two years, or even ten years without anybody noticing, but 50 years? How is it that even possible? Why did I have to burn out before the truth revealed itself? And now that I know, what’s going to become of me?

It’s really hitting me hard that there is no going back. I cannot fool myself into thinking that if I get dressed up, go out, and work at the store that somehow, I’m approaching the vicinity of the Land of Normal, where everything will be okay. When Bob is here, I do all right, because he’s easy to be with and he loves me. When my daughter is here, all the better, because I love seeing her and hearing the things she shares about her life. But when I’m alone, without either of them, my level of fear goes off the charts. I think, what if I were left completely alone? What if this were the next 20, or 30, or 40 years of my life? It’s not the food shopping and the driving that worries me. It’s the being alone. Forever.

I know that everyone has these kinds of fears. But neuro-typical people have many more opportunities to go out and get a break from the aloneness. I don’t have those opportunities. I can’t make plans and hope that they’ll work, because I keep trying to make ever more humble and sensible plans, and they still don’t work.

Right now, I am so totalled by all these realizations that Bob is coming very close to canceling his trip to California in August. My daughter will be at camp during the time that he would be away, and the idea of a week and a half at home alone feels impossible. I used to handle his extended trips by making plans with friends, but it didn’t really help. In fact, in some ways, I felt more isolated. I loved seeing my friends, but when I came home, I’d feel twice as alone as I had before. Even Bob’s short trips to New York are terribly difficult.

So I’m in a major crisis. It’s not a life-threatening crisis, but it’s a crisis nonetheless. I want Bob to stay here as much as possible. I don’t have a problem with his going to New York to see his dad, because his dad needs him and they need to be together. Even thought it’s difficult, I can support it. But I also need a lot of support for myself right now, and while I’m still trying to find ways to get the support outside of my house, I need Bob to be nearby. If his daughter wants to see him in August, perhaps she can come east and they can hang out in the house she grew up in. Bob feels like that might be a good solution. He’s not ready to make a final decision at the moment, but I think that’s where it’s going.

For my part, I’m starting to make some contact with a couple of local agencies that work with developmentally disabled people. It’s useless to pretend I have it all together when the whole damned facade is crumbling. I hope I can find some support locally and feel less alone in my everyday life.

You are all an amazing lifeline.

© 2009 by Rachel Cohen-Rottenberg

This morning, I ran across another amazing piece by the brilliant Amanda Baggs called Help! I Seem to be Getting More Autistic! It’s a long, informative piece about all the possible reasons that we can lose abilities as we get older. The section called Burnout especially spoke to me, setting off a cascade of feelings and associations that helped me understand why I can’t do many of the tasks and activities I once did.

Amanda explains that burnout begins because we are working at a level of energy that non-autistic people would use only in emergencies:

“Most people have a level to which they are capable of functioning without burnout, a level to which they are capable of functioning for emergency purposes only, and a level to which they simply cannot function. In autistic people in current societies, that first level is much narrower. Simply functioning at a minimally acceptable level to non-autistic people or for survival, can push us into the zone that in a non-autistic person would be reserved for emergencies. Prolonged functioning in emergency mode can result in loss of skills and burnout.”

Until my diagnosis, I’d been functioning at emergency level for 50 years. Amazing, isn’t it? I should get a plaque, or a trophy, or maybe even a write-up in the local paper. Can you see the headline?

LOCAL AUTISTIC WOMAN BURNS OUT AFTER 50 YEARS OF EMERGENCY FUNCTIONING
“So THAT’s why she’s so quiet,” says neighbor

In the article, I would explain why my short trip to the hardware store this afternoon was followed by several hours alone in my loft, writing my little heart out. After all, if you had to walk five entire minutes to the hardware store, buy four sponges, a spray bottle, super glue, and some scotch tape, and then walk five more minutes back, you’d be exhausted, too. If you were me. Or anyone else who has tried to be “normal” for as long as I have.

But back to Amanda’s piece. In the same section, she sums up, well, pretty much my whole life to this point:

“The danger here may be obvious: It may be the people most capable of passing for normal, the most obvious “success stories” in the eyes of non-autistic people (some of whom became so adept at passing that they were never considered autistic in the first place), who are the most likely to burn out the hardest and suddenly need to either act in very conspicuously autistic ways or die.”

Given all the plates I’ve kept spinning in my lifelong quest to be neuro-typical, having a simple choice between 1) being conspicuously autistic or 2) dying—well, it’s one hell of a relief, let me tell you. I’ll take the conspicuously autistic woman behind door number 1, please. Why has no one told me about her before? She’s quite wonderful!

The problem, of course, is how do you get support services when you’ve made a seemingly phenomenal success of life? Amanda writes:

“Sometimes this kind of burnout is what leads adults to seek diagnosis and services. Unfortunately, many service systems that would otherwise support people in their own homes, cater only to people who were diagnosed in childhood, and will look at someone with a very good neurotypical-looking track record of jobs, marriages, and children with suspicion. They need to be made more aware of this possibility, because there’s a high chance that an adult in this situation could end up jobless, homeless, institutionalized, misdiagnosed, given inappropriate medical treatment, or dead.”

This problem is why I have decided not to apply for disability. I don’t think that anyone at the Social Security office could begin to understand what a difficult time I’ve having. I can’t blame them, because I’m just beginning to understand what a difficult time I’m having. Fortunately, I have Bob and his family to help me, so I don’t have my back up against the same financial wall that so many others do.

After I read through Amanda’s piece, I went downstairs to the kitchen, and I told my husband that I feel even more adamant about getting people to help with basic tasks. We’ve hired a housecleaner who is starting this Friday (yay!), but we need to continue reconfiguring our lives to deal with the reality that 1) I’m autistic and 2) he will be able to do less for me, not more, as he gets older.

From the time I was first diagnosed, my husband has used a great image to describe what has happened to my life. He said that I’m like the Road Runner in the old cartoon. The Road Runner would run right off a cliff and be perfectly fine—until he looked down. Then, he’d crash. Every time I say to Bob, “What has happened to my life? Why was I able to do so much more before?” he gives me the same answer: “You looked down.”

I looked down and saw that I’d been running off a cliff for some time. I just didn’t know it. By trying to take care of everything myself and not asking for any help, I was working way past my capacity. When I got my diagnosis, it was like finding myself in mid-air. I had to face the inescapable reality that gravity was going to win.

As Bob and I talked about the image of falling, I suddenly understood the source of my worst nightmares. Since childhood, I have had two related, recurring dreams.

In one version, I am on the ground watching a plane or a bus or a car, with people in it, zigzagging across the sky. The vehicle is out of control, and I know it’s going to crash, with all those people in it. I am terrified for the people who are going to die, and as the vehicle starts plunging to earth, I know that if I don’t wake up, I will also die. I am always able to wake up just before the vehicle hits the ground.

In the other (and even more terrifying) version, I have climbed to the top of a very high place using several ladders or flights of stairs. The problem is that the ladders or the stairs are on the outside of the structure, and I suddenly realize, to my unspeakable horror, that I cannot get down. Going back down the ladders or the stairs is out of the question. I am very high up, the stairs or the ladders are nearly perpendicular to the ground, and the sight of the earth below is dizzying. I know that if I try to get back down, I will fall and die. There is no way to get down gracefully. I stand there wondering how I could possibly have climbed all the way up without realizing that I wouldn’t be able to get back down. And then, I’m so scared that I wake myself up.

Both kinds of dreams are about an autistic person trying desperately to be a super-competent neuro-typical person. All my life, I had climbed the ladder of success, and I’d spent my life convincing people that I had it all together. And all that time, behind the scenes, I was terrified. In fact, I can barely remember a moment of my earlier life in which I wasn’t anxious or afraid about something. Now I know why. 

I was always afraid of falling off the ladder of success. I was always afraid of a “fall from grace.” I was always afraid that someday, I wouldn’t be able to “do it all” anymore. I was afraid that someday, I’d have to be who I really am.

That’s a fall from grace? What a laugh! Everyone should be so lucky. It’s been more like a fall into grace. Here I’ve fallen from this high ladder I climbed, and look where I’ve landed: I have a husband who loves me as I am, a kid who loves me as I am, friends who love me as I am, an online community that gives me a phenomenal amount of support and understanding, and a local community in which I feel safe coming out as an autistic person. So what’s not to like?

Sometimes, I wonder: If there had been an Asperger’s diagnosis when I was younger, would I rather have been diagnosed at 5, or 12, or 18 years of age than at 50? After all, I would have had many more supports and a much more realistic view of myself. But each time I ask the question, the answer is no. If I’d been diagnosed earlier, I wouldn’t be where I am right now. I can’t regret the past, because it’s brought all the people I love into my life.

Tomorrow, my husband is going with me to the thrift store. We’re going to walk around, watch how I’m feeling, and consider how I might make a place for myself there. When I told my husband that I was going to the shop tomorrow, just to get a feel for the place again, I didn’t even have to ask him to come with me. He just knew I needed him to be there.

While my life has not been the easiest life, it hasn’t been the hardest, either. In fact, it’s become a very interesting adventure. I hope it continues so.

© 2009 by Rachel Cohen-Rottenberg