As I’ve written before, it’s apparent to me that my dad was on the spectrum. Of course, no one ever talked about such things back then, so when I was growing up, the family explained my father’s oddities by saying that he was hard of hearing. Of course, he never went to an audiologist or had hearing aids or any of that nonsense. My mother used to say that he’d been born with nerve damage in his ears, and that no one could do anything about it. I’m virtually certain that she made up that story to explain the inexplicable, since she made up a lot of stories, and she believed them, too.

My father’s hearing issues were very aggravating to me as a kid, because every single time I said something, the very first thing out of his mouth was, “What?” Every single time. It was a reflex. It didn’t matter how loudly or how softly I spoke, or what else was happening in the room. He’d always say, “What?” When I had the patience, I’d repeat myself, in exactly the same tone of voice, and then he’d hear me. When I’d get exasperated with him and say, “Why aren’t you paying attention to me the first time?” his response would always be the same: “You’re mumbling.”

And that response would send me into the stratosphere, because I Did Not Mumble. No one else in the entire world ever said I mumbled. I knew that I was enunciating the English language perfectly well, and I still get an adrenaline rush just thinking about my father telling me otherwise. He knew how much it bothered me because, after awhile, he took on a new annoying habit: when he couldn’t hear me, he’d say “You’re mumbling,” and he’d laugh. And then I’d say, “I am not mumbling. You are not hearing me.” But it never made a difference. It was always “What?” and “You’re mumbling.” By the time I left home, it had nearly driven me up the wall and back.

For several years afterward, I continued to buy the idea that my father was hard of hearing. Then, one day, when my parents were visiting in California, everything changed. We were all in the car; my father was driving, and I was in the back seat. There was lots of ambient noise: highway noise, the sound of the car wheels running over the pavement, and everything else you hear in a car going 65 miles per hour on a six-lane freeway. Nonetheless, I said something to my father. I can’t even remember what it was, because I figured he wouldn’t hear it anyway. But, miracle of miracles, he heard me. The first time. Without saying “What?” or “You’re mumbling.” He just heard me, like a regular person, and he just answered me, like a regular person.

I suppose I should have felt angry, as though he’d been playing some sort of weird game all those years, but I wasn’t. I intuitively knew that he really had heard me clearly at that moment, and that he hadn’t been able to hear me before. I became fascinated by the contradiction, but I really didn’t know how to explain it.

These days, though, it makes perfect sense to me. After all, when I go out into the world, I often block my hearing—with earplugs, a Peltor headset, or both. Today, I’ve been able to wear just my earplugs, and hear people as though they’re at a distance, and say a few words in order to get my errands done. But tomorrow, when I go to my Voc Rehab appointment, I will have to wear the headset in order to block out ambient noise and allow myself to concentrate. In other words, I render myself more or less able to hear as needed.

I’m now realizing that my father must have had the same amount of auditory sensitivity and processing difficulty that I have, and that he intuitively came up with a survival strategy. Somehow, he selectively rendered himself deaf. It’s as though he just shut down his attention and literally couldn’t hear, and his saying “What?” was his signal to bring his attention back up. This strategy also provided him with a way to cushion himself against having to hear everything loud and clear the first time, and thus avoid becoming overloaded by it. It really was quite a brilliant strategy, and I’m in awe that he was able to pull it off. As for me—I simply cannot let my auditory attention wane. It’s always on alert, unless I block my ears. Then, even if I can hear somewhat, the person talking feels further away and the sound of his or her voice doesn’t penetrate my nervous system with anything like the same intensity. Somehow, my father was able to give himself the same experience without having to explain why he was wearing a lawnmower headset to go shopping.

My father is now gone, and even if he were still alive, he would not for a moment accept anything that I’m saying. He wouldn’t accept that we were both on the spectrum, he wouldn’t accept that we both had extraordinary sensory sensitivity, and he wouldn’t accept that I couldn’t overcome all of it by sheer force of will. In fact, he’d laugh me right out of the room for even broaching the subject.

So I’m just left with a new understanding of my dad, and it makes me feel closer to him. It consoles me to understand him better now.

© 2010 by Rachel Cohen-Rottenberg

I have always felt much younger than everyone else, even when I was a child amongst other children my own age. And now that I am chronologically a middle-aged adult, I still feel like a kid, as though I haven’t really grown up.

I first remember feeling very young at summer camp. At eleven, I was one of the oldest kids there, and yet, I didn’t feel as grown up as I perceived others to be. To this day, I remember each person in my age group very vividly. I especially remember two girls, Dawn and Monique, who seemed to be adults already. I knew that they weren’t. My mind kept telling me that they were just eleven, and yet they seemed to be much older than I would ever be. It wasn’t just that they were taller. It wasn’t just that they were pubescent. It wasn’t just that I was a tomboy and they were much more girl-identified. It was simply as though they were in a dimension that I couldn’t enter—and that I would never enter.

And it’s true. I’ve never really entered that dimension. That’s not a bad thing, by any means. It’s just a fact.

At summer camp, I don’t remember anyone being unkind or unfriendly to me. No one bullied me there, ever. In fact, I have a picture of my group, and I am smiling quite happily. It’s clear that I felt very safe and strong there. I remember that summer with a lot of fondness, because I had tons of fun. Feeling like the baby of the group was not a liability. It was simply something I experienced, along with swimming, archery, dressing up for costume parades, and singing in the daily all-camp talent show. I was still a kid, so not keeping up with the other kids didn’t particularly concern me yet. I noticed it, and I wondered about it, but that was all. I was still content in my own little world.

Then there was high school, and the feeling of neutrality wore off. As an adolescent, I got the feeling that I was growing younger while other people were growing older, and it upset me. To this day, I’m not sure how to define this feeling. I wouldn’t say I was perpetually immature. In many ways, I was more mature and more serious than my peers. I was dealing with a world of pain at home, I was surviving it with great resourcefulness, and I was continuing to function relatively well. If there is a word to describe how I felt inside, I think the closest word would be childlike. I was always childlike, always gullible, always without guile, and never able to really understand the kinds of games that people seemed to find necessary. I watched it all as though it were a movie and there were no part written for me to play. After awhile, I got tired of just observing. I started taking on the personae of other people and tried to play along as well as I could. But it wasn’t like having a part of my own. In fact, it wasn’t much fun at all.

I’ve grown up a lot since then. I’m a wife, a mom, a professional writer. And I’m less gullible now. I’ve lived and learned many thousands of times over. Of course, I still tend to believe the words that people say (because, after all, why in God’s name wouldn’t they say what they mean), but I am learning to wait for follow-through and not get all excited just because people say the right words. Well, okay, I do get all excited when people say the right words, but I’ve come to realize that words are not enough. I watched too many people throw them away like used-up Styrofoam cups. It’s a sacrilege, if you ask me.

But despite all this growth, all my realizations, all my experiences, I still see the world through the eyes of a child.

It’s who I am, and when I’m not feeling apologetic about it, I like it. A lot.

This childlike quality may account for why I miss the past so desperately. There is a part of me that has never really left childhood, or young adulthood, or any part of my past. It’s as though everyone I’ve ever known, all my life—my parents, my brother, my extended family, my ex-husband and his family–are all still right where I left them the last time I saw them. I know they aren’t. I know that time moves on and that people move with it. But there is a part of me that still looks at photographs of my childhood home and thinks that if I could just open that screen door at the top of the front steps, my brother will be right there ready to play, and my mother will be having coffee, and my father will be watching television downstairs. I really believe that it’s all still there, and that I’m still there. And then, I’m shocked when I find myself unable to get back there.

The mystics say that from the point of view of the Eternal, there is no past, present, and future, and that everything coexists simultaneously. To human beings, living in time and space, everything seems to pass in a linear fashion, and yet, I can’t help but feel that it really doesn’t. Perhaps this is a spiritual gift that autism has given me. I have to stand apart from a world in which people mature in a linear fashion because I’ve matured in a completely different fashion. And by standing apart, I’m able to see through the eyes of a child newly arrived on the earth—a child who knows that she has always existed even as she knows that there was a time before she was ever born.

© 2010 by Rachel Cohen-Rottenberg

Despite the severe symptoms that accompanied my abortive attempt at Lorazepam withdrawal, my progress with weaning off my other meds has been going very well. In fact, except for the Lorazepam, I have stopped taking all of them. In April, I went cold turkey off Amitriptyline (which I’d been taking for over 20 years) and weaned off Topamax (which I took for a truly horrible six weeks). On May 1, I began the process of weaning off Zoloft, and took my last 25 mg dose on the evening of May 14. Last night was my first Zoloft-free night in seven months, and wow, do I feel better! On May 4, I began stabilizing on 1.5 mg of Lorazepam per day in three .5 mg doses, and that seems to be going well.

When I was taking both Zoloft and Lorazepam, I was sleeping about 6-7 hours/night. Last night, with no Zoloft (and only Lorazepam), I slept for 8 hours and had a series of very powerful and vivid dreams. And I woke up happy! And energetic! Without an anti-depressant! Can you imagine? In researching the side effects of various medications, I learned that Zoloft can cause insomnia (!), so it wasn’t exactly the best thing for me to take, given that my main challenge is, um, insomnia.

Isn’t it amazing that I’ve figured this stuff out in the absence of a medical degree? It’s astonishing what you can do with an Internet search engine and the ability to read.

I’ve also found that weaning off Zoloft (and other SSRIs) can cause “discontinuation syndrome” (which sounds suspiciously like a euphemism for “withdrawal” to me). This “syndrome” can start 1-3 days after the last dose and can include irritability, agitation, anxiety, insomnia, dizziness, vertigo, lack of coordination, nausea and vomiting, and flulike symptoms such as fatigue, lethargy, muscle pain, and chills. You’ll notice that the subtle side effects of acute Lorazepam withdrawal (seizures, acute suicidal ideation, and death) do not appear on the Zoloft withdrawal list, so I feel confident that I can weather the Zoloft discontinuation for however long it lasts (and may it not last long).

As for weaning carefully off Lorazepam, I’m going to wait until the Zoloft withdrawal is over. Otherwise, I won’t know how much is due to the Zoloft withdrawal and how much is due to an overly confident Lorazepam taper. The good news is that my regular doctor has been a gem about this whole process. I sent her information about how I can very, very gradually taper off Lorazepam, and she’s completely supportive of what I want to do. She’s going to do her homework so that she makes sure I’m tapering slowly enough and at the right doses. And she also plans to stay in regular contact with me as I go through the process, which will take several months. She knows that weaning off benzodiazepines is no fun. At all.

Of course, at some point, I will get to so low a dose of Lorazepam that I’ll start to experience insomnia. This is the part of the whole process that scares the living shit out of me. My insomnia (first controlled by Amitryptiline in 1987 and now by Lorazepam) began in early childhood and was induced by protracted trauma that included consistent sleep interruption and deprivation. Very, very bad stuff. Coping strategies aren’t enough. I have many coping strategies, but the only thing that has ever helped me overcome the insomnia is medication. Fortunately, the other doctor at the family practice is very keen on homeopathic and other natural remedies, so he is going to help me try a non-pharmaceutical alternative when the time comes. If the natural remedies don’t work, however, I am going to get a prescription for a new medication called Silenor, which treats insomnia and is not addictive. It seems to be based on a tricyclic anti-depressant (similar to the Amitriptyline I used to take, but without many of its side effects).

I’ve come to realize that the goal here is not to be medication-free. The goal is to be able to sleep. Of course, if I can do that without pharmaceuticals, all the better, but I can’t be a purist. Without sleep, I have no quality of life at all.

Which leaves me wondering: how much of my insomnia is due to autism and how much is due to trauma? I’d like very much to hear what your sleep patterns are like and what your challenges have been—whether or not you have a trauma component thrown into the mix. Hearing from other autistic people about sleep will help me start to get more clarity on how to separate the effects of trauma from the effects of autism. Of course, to some extent, I can’t separate them. The trauma was even more acutely damaging given my autistic sensory and emotional sensitivities, and given how acutely the ordinary world affects me, the autism itself can cause my system to feel very traumatized. Nonetheless, I would like to understand the origins of the insomnia as well as I can, and hearing about your experiences would be very helpful.

© 2010 by Rachel Cohen-Rottenberg

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

Insanity is the process of doing the same thing, over and over, while hoping for a different result.

Personally, I think that’s a fine definition of insanity, so I’ve been looking at my recent debacle with my cousin Ralph and trying to decide whether my behavior meets the criteria. Certainly, after countless disastrous interactions with my original family members, my willingness to toddle over to my father’s side of the gene pool, hoping for a civil and productive conversation, might seem a little, well, nuts. But was it?

I don’t think so. I’ve begun looking at the disaster with cousin Ralph in a more spiritual way, using the Jewish idea of teshuva, which means “return.” Generally, we talk about doing teshuva when we’ve done something wrong; we acknowledge the wrong, we make amends, and we pledge not to repeat the mistake when the same situation arises again. If we can do those things, then we have returned, both to our original pure selves and to a state of harmony with others.

So I’ve been thinking: Why was I creating another cycle of return to the same place with my original family? What had I done wrong before, and what was I trying to do right in this interaction with Ralph?

My last less-than-ideal contact with a family member had taken place about three years ago. I contacted my uncle Sylvia (not his real name), hoping to reconnect. I was unsure of how or when to bring up the abuse, but I figured I’d find an appropriate moment. Unfortunately, as soon as Sylvia got my first email, he did an Internet search on my name and found a post I’d written about being an abuse survivor. As a result, the proverbial shit had hit the proverbial fan before we’d even begun.

At first, Sylvia questioned the idea that my parents could ever, ever have abused me, but a short time later told me that I had taken revenge on them by breaking contact. Revenge for what? I asked. For stuff that didn’t happen? No matter how many times I told him that I was interested only in my own survival, and that revenge had never been part of the equation, he couldn’t hear it. With each iteration, he got nastier. By the end, I pretty much broke down in a mass of tears and self-hatred, waved a white flag, and ended the interaction feeling like a victim. Again.

This time around, with cousin Ralph, a similar dynamic occurred, although to her credit, cousin Ralph did not get nasty with me in the way that uncle Sylvia had. However, the same mind-boggling question-the-abuse/acknowledge-the-abuse contradiction was there, expressed in emails containing such statements as “I have no basis on which to believe you” and “I had no idea you came from such a dysfunctional family.”

Excuse me for a moment while my head stops spinning.

There was also quite a bit of, shall we say, lying regarding the family photos. In one of her first emails, cousin Ralph had said that she had “many more” photos to send after the initial batch. In one of her last emails, however, she said that she’d just “scoured” the family albums and, well, gosh darn it, she just couldn’t find any more photos. Sorry! So sorry!

I hate it when people lie. I’d rather they just said, “Get the fuck out of my face.” That I could understand. Lying perplexes me. My Aspie brain just can’t quite believe that it’s happening. Why lie when you can just come out and say something? (That was a rhetorical question.)

Anyway, at some point in the interaction with cousin Ralph, I finally realized that I had to give up on having an extended family. I mean, I really, really had to give it up. And so, my friends, I must inform you that, during the past week, I made the difficult decision to remove from life support my brain-dead hope of ever having an extended family of people who share my DNA. (Services were private; in lieu of flowers, please make a donation to the charity of your choice.) After the cremation and scattering of the ashes, I was feeling very sad, so Bob wrote me the following beautiful email while he was in New York:

Hi love — Thinking more about Ralph’s e-mail, it seems to me that your decision to move on with your life as if there is no family is the right one. No matter what Ralph may or may not be willing to do in terms of a potential relationship with you, her email is simply another “missed opportunity” for people in your family to reach out to you in a loving, compassionate, understanding way. Whatever her reasons were for responding in the limited way that she did are her reasons, and have little if nothing to do with you. And hasn’t this been the problem all along? That no one has considered how you must feel about any and all of this?

And to me, that’s the real tragedy, and the source of the sadness I’ve been feeling lately about the absence of real family in your life. It underscores what you’ve been saying for all these years — that you’re a good person, that you’ve done nothing wrong, and that you deserve better from your family.

Sad to say, those are all good reasons to say goodbye to them. To close the door and move on down the road. The line from a Mary Black song goes something like, “We’ll never see what lies ahead if we’re always looking back.”

As I re-read these words last night, it came to me: I must end the interaction with Ralph with dignity. I cannot end it feeling powerless and screwed over. If I do, I’m just a victim again, just as I was in my interaction with uncle Sylvia, and just as I was in childhood. I must stay out of the victim place.

Sometimes, that’s hard for Aspies, because the world can feel like such a hurtful and incomprehensible place. But I can’t be a victim in this world. My innocence, my trustworthiness, and my truth-telling are some of my best qualities, and just because people occasionally take advantage of them doesn’t mean that there’s something wrong with me. So, with all these thoughts in mind, I gathered myself together and wrote the following email: